tag:blogger.com,1999:blog-45929146745120422862024-03-13T20:04:25.363+00:00the chronic capercaper: (n) a playful skipping movement aka learning to dance through life with a chronic illnessLibhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.comBlogger146125tag:blogger.com,1999:blog-4592914674512042286.post-35095301921071673172018-03-25T23:52:00.003+01:002018-03-25T23:52:34.640+01:00A wake up call for every time that I think I am being a wimp...This week I have had some bad pain (described in my insta post below) and ended up missing a class at uni because of it. As always I had a voice in the back of my head niggling me, telling me that I was just too weak, being dramatic and a wimp. Looking at the situation from an objective point of view I know that I push through everything and despite dealing with quite a lot in the last six months, that class is the first uni class I have missed and it's kinda insane that I haven't missed more classes (as my friends keep telling me).<br />
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Anyway, my friend <a href="https://www.instagram.com/chronically_aware/" target="_blank">Sarah</a> sent me this video (below the insta post) and it gave me a much needed wake up call. I know that having some radio hosts and one woman with endometriosis filming something is not a robust experiment from a scientific point of view, but it's all I needed to remember that while other people have their own battles, not many people my age have to deal with extreme acute or chronic pain, and I should be proud for all I have achieved despite it. I'm not a wimp, I'm not being dramatic, I have a disease. I have developed incredible coping skills for dealing with pain and discomfort every day.<br />
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<blockquote class="instagram-media" data-instgrm-captioned="" data-instgrm-permalink="https://www.instagram.com/p/Bgj9ll9jE22/" data-instgrm-version="8" style="background: #fff; border-radius: 3px; border: 0; box-shadow: 0 0 1px 0 rgba(0 , 0 , 0 , 0.5) , 0 1px 10px 0 rgba(0 , 0 , 0 , 0.15); margin: 1px; max-width: 658px; padding: 0; width: 99.375%;">
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<a href="https://www.instagram.com/p/Bgj9ll9jE22/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">The thing about #chronicpain is that it’s multifaceted and unpredictable. Since my last surgery 18 months ago I have almost no pain that I recognize as my old ‘endo-caused’ pain. Instead I have lower back pain (sharp and around my kidneys) that tends to happen when I’m stressed, I’ve eaten too much inflammatory food, not slept enough or done too much exercise that stresses my core; a little bit of cramps pain around my period that tends to resolve itself with anti-inflammatories and gentle movement; sharp random pains in my pelvis and upper abdomen that affect my ability to breathe and walk, and that I can’t figure out a cause for so I figure must be #neuropathic; and the #vulvodynia pain/itching/burning that is constant. I’m 99% sure these pains are all due to my body’s maladaptation to being in pain from the #endometriosis tissue for so long, and not due to any new endo growth. ~ For the last week I’ve had a pain that is quite unusual for me and really difficult to deal with. It’s sharp and stabbing level 9-10 acute pain, like I’m being stabbed in my vagina. It’s incredibly difficult to deal with this kind of pain without showing any outward signs of pain, or without eventually wanting to cry from exhaustion if I’m under any stress at all when I experience the pain. It’s led to me acting weird and potentially seeming rude around others and walking out of class even though the topic was really interesting to me. ~ Thankfully heat helps so I’ve just been surrounding myself with hot water bottles and my @smacs_packs heat pack.</a></div>
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A post shared by <a href="https://www.instagram.com/thechroniccaper/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> Libby</a> (@thechroniccaper) on <time datetime="2018-03-20T22:32:26+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Mar 20, 2018 at 3:32pm PDT</time></div>
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<iframe allowfullscreen="true" allowtransparency="true" frameborder="0" height="315" scrolling="no" src="https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FHeidiXavierRyan%2Fvideos%2F1090014634470400%2F&show_text=0&width=560" style="border: none; overflow: hidden;" width="560"></iframe>Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-44864794130291464082017-06-27T23:53:00.003+01:002017-06-27T23:53:57.229+01:00Come find me on Instagram I haven't updated here in awhile, but I have a few posts planned since a lot has changed since I last posted. If you want more regular posts then follow me on Instagram on @thechroniccaper where I micro-blog on a semi-regular basis.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-57071752753657957492016-03-08T12:58:00.001+00:002016-03-08T13:36:57.229+00:00International Women's Day<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-TbZRwH3hbpU/Vt7L9xTbjmI/AAAAAAAABtQ/CN-LH_-oZl8/s1600/12842396_10153560196998460_314918759_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://3.bp.blogspot.com/-TbZRwH3hbpU/Vt7L9xTbjmI/AAAAAAAABtQ/CN-LH_-oZl8/s640/12842396_10153560196998460_314918759_o.jpg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wearing my favourite <a href="https://www.etsy.com/uk/listing/219013324/feminist-tshirt-phenomenal-women-tribute?ref=shop_home_active_11">phenomenal women Tshirt</a> in honour of IWD</td></tr>
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I've been struggling a bit around here lately. I've been involved in the endometriosis awareness/support scene pretty much since I was diagnosed in March 2012. I appeared in my <a href="http://www.canberratimes.com.au/act-news/woman-suffered-in-silence-for-years-before-condition-diagnosed-20120527-1zdem.html">newspaper article about endo</a> in May 2012. I met the other Canberra Endometriosis Network co-founders around the same time and we tried to start to get things rolling in the ACT. In 2013 I managed to get endo into Cleo and Cosmo, if only small articles. (<a href="http://sylfreedman.com/">Syl Freedman</a> kicked things up a notch a year later.) Later on that year we had our first yoga classes that got things rolling a bit faster for the network, and in 2014 the facebook group started going nuts and we had our first proper meet ups, with more than just a handful of people, at the <a href="http://www.wchm.org.au/">Women's Centre for Health Matters</a>. At last count the network has 250+ members.<br />
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But dealing with other life stuff has just gotten too much recently, and I haven't been able to handle my commitment to the network. Even seeing endometriosis awareness posts everywhere is overwhelming to me at the moment, even though I am so glad that they are out there and I am so thankful for the honesty and bravery shown in the women that choose to share their experience. So last week I resigned from the board of the network. It was a really hard decision but it's what I need to do right now to give myself some space to deal. Resigning inspired me to say yes to another commitment, a panel that I had been asked to participate in at work on International Women's Day.<br />
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So when today came around, I did one of these things that I do where I speak first and then overthink later. I shared my experience of being dealing with my symptoms with an unsupportive manager, in front of a crowd of at least 50 people (the details of which I'll leave in that room lest I end up on the receiving end of a defamation lawsuit). I cried in the process, remembering how hard my life was at the time, how confused I was by the pain I was in and the fatigue I was experiencing, how I struggled to come to work every day, how I cried in the car park for two hours one day because I just couldn't cope, how I felt utterly defeated by how HR treated me when I escalated the issue and took it to them. It is far and beyond the hardest, most isolating, period of my life so far. I just wanted to <a href="http://vintagelib.blogspot.com.au/2013/04/depression-anxiety-and-endometriosis.html">cease to exist</a>.<br />
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Sharing this experience made me cry. I've tried almost to forget that period existed, particularly as none of the issues were really resolved. At the time I was frustrated in myself for letting emotion get in the way of me expressing how I felt about some weakness in how my workplace is run. I felt like I lost my train of thought a bit, and just felt like a bit of an idiot. However, some amazing colleagues of mine in the audience spoke up and shared their own experiences, and I felt like I'd hit a nerve. I thought it would be a prime time to ask the CEO to support people with chronic illness in the agency by arranging training for managers in dealing with employees with chronic illnesses, so I did. We can't expect managers to know how to deal with people living with chronic illnesses without training, when those people themselves spend their lives learning how to best deal with their illness.<br />
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Afterwards I received overwhelming support and I'm thankful to everyone who reached out to me. A lot of people called me brave, which I thought was odd since I didn't really think much of what I'd said at the time. Later in the day I started spiralling in anxiety a bit, worrying about the fact that I had cried in front of everyone, and that I had addressed the CEO so directly, and been so open about an experience that could reflect so poorly on my employers. I started to think that maybe it had been a really stupid career move. (Particularly as I had made some rather black and white comments on feminism as I tend to do when I'm hyped up about these issues. I realise that the day to day reality is a lot more grey.) That all changed when I read a post made by a colleague and fellow member of the network calling me courageous and a superstar. I burst into tears. I knew that I was being silly for beating myself up, but I couldn't stop it. It took her posting to snap me out of it.<br />
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I am proud of the person I have become over the past four years since being diagnosed, and I am proud of how open I am about my experiences. Sometimes I feel a bit dumb for making myself so vulnerable, but I have seen such great things happen out of that vulnerability.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-13232976567441323972016-01-14T11:16:00.000+00:002016-01-14T11:55:58.330+00:00Modibodi Period Panties: Undies for the Lazy MenstruatorOver the last year I've been trying a variety of reusable menstrual products in the interests of saving money, reducing waste and exposing my body to less harmful substances. I've already been using a menstrual cup and reuseable pads for about a year, and recently I decided to hit a height of laziness by investing in <a href="http://www.modibodi.com.au/#_l_1j">Modibodi Period Panties</a>. A product that promises to literally change nothing in your routine to cope with having a period? No need to worry about changing tampons or sterilising menstrual cups? One less thing to think about when you're trying to make sure you take your painkillers at the right time so don't end up rolling around on your office floor in agony? Sign me up!<br />
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<tr><td class="tr-caption" style="text-align: center;">The Sensual Hi-Legs in Black</td></tr>
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So that is basically the promise - no worrying about changing tampons or pads, or emptying a cup, one pair of panties, all day, no leaks. I thought it might be too good to be true, so I originally just bought one pair of Sensual Boylegs in Light Absorbency (because that is the only level of absorbency available in that style) and one pair of Sensual Hi-Legs in Moderate Absorbency. I went for these styles because I cannot deal with too-tight elastic waistbands pressing on my belly when I've got my period... or pretty much anytime.</div>
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The shipping was pretty standard - about 5 days (that's what I expect here in Australia if it's shipping from somewhere else in Australia) and they arrived just before the start of my last period, so I got to test them out straight away. And boy did they live up to their hype! Both pairs were incredibly comfortable to wear, and didn't dig in at all. They also managed to contain my flow for an entire day (around 16 hours, after which I changed into a night pad because I didn't have enough pairs for that first period, but you could use another pair of Modibody instead), no leaks*, no smell. They were a lot less bulky than wearing a pad, and only marginally bulkier than normal underwear. They are extremely well made and I can tell they aren't about to fall apart after a couple of wears. Also, I've now washed these pairs a few times and they look brand new every time they come out of the wash, no staining or anything. Not exactly what I expected after years of heavily soaking bed sheets in stain remover due to period accidents, and still having the stains hang around.</div>
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<tr><td style="text-align: center;"><a href="http://www.modibodi.com.au/wp-content/uploads/2013/08/Sensual-Boyleg-Leak-Proof-BACK-Black-1.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://www.modibodi.com.au/wp-content/uploads/2013/08/Sensual-Boyleg-Leak-Proof-BACK-Black-1.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Sensual Boylegs in Black</td></tr>
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So after my first good experience I went online and took advantage of their pre-Christmas sale and bought a few more pairs, this time in Violet (or in my opinion - Fuschia!) Can I just say that wearing bright pink underwear while I had my period and knowing that it wouldn't get ruined made me feel so much better? Who knew that underwear could be such a mood booster. I also love that you can wear these throughout the month in case you have any spotting (which I am unfortunately having quite a lot of at the moment). They even have beige panties for when you want to wear lighter clothing. My only complaint is that they can sometimes get a little sweaty towards the end of a warm day which can cause a little irritation, but much less than what I experience with pads. It probably just means I need Moderate to Heavy Absorbency instead of Light.</div>
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If you can't tell, I'm official sold on <a href="http://www.modibodi.com.au/#_l_1j">period panties</a> and am pretty much switching to them full time. I love the amount of mental energy that they save by removing one more thing that I have to think about when I have my period. Maybe I need to take out some shares in this company...</div>
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<tr><td style="text-align: center;"><a href="http://www.modibodi.com.au/wp-content/uploads/2015/03/O8R8348-Edit.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://www.modibodi.com.au/wp-content/uploads/2015/03/O8R8348-Edit.jpg" height="400" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Sensual Boylegs in Violet (aka the best thing to happen to periods since chocolate was invented.)</td></tr>
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*Thankfully since I've been on Qlaira my periods have become much lighter than they would be naturally (for me day one and two are now as light as day 4 or 5 used to be). I don't think these light absorbency period panties would've dealt with my flow when I wasn't on the pill, but I might've tested the Heavy Absorbency ones on day 2 or 3.</div>
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PS A friend of mine bought the classic boyleg briefs and she says they do cut in a bit, so if you don't like undies that cut in, you might want to stick to the lace versions.</div>
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~This post was not sponsored and I paid for the undies myself. All opinions are my own, I just really love these undies! I have signed up for their referral program, so if you buy undies from the links in this post, I will apparently get a small amount of money. Who knows? This is a first for me.~</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com2tag:blogger.com,1999:blog-4592914674512042286.post-80561643610816703322015-11-18T11:47:00.001+00:002015-11-18T11:47:36.593+00:00The power of community<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-R659WzbmOW0/VkxlDOO8ukI/AAAAAAAABrQ/s-sNrD_xdt8/s1600/IMG_4348%2B-%2BVersion%2B2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="590" src="http://1.bp.blogspot.com/-R659WzbmOW0/VkxlDOO8ukI/AAAAAAAABrQ/s-sNrD_xdt8/s640/IMG_4348%2B-%2BVersion%2B2.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goofing off with some endo sisters during a wine and food fest.</td></tr>
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It's been hard recently. Work has been stressful, moving continents is never easy and I've had more endo pain again - partly due to the stress and not sticking to my diet as well as I usually do + running out of krill oil last week and not having the time/energy to go buy more from the store (putting in all the detail so you know how much I have to do to keep functioning, and how tiny things can throw me off!) but also I think my endo is growing back. I knew it was going to happen sometime, they didn't get all of it in the last surgery, and it was pretty aggressive.</div>
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You know what has made my day though?</div>
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<ul>
<li>Getting an email at work on Monday from a colleague who remembered me campaigning for endometriosis awareness a couple of years ago, writing to me to let me know that her friend was going through the process of being diagnosed with endo, and asking me if I would be happy to talk to her about it because she was feeling a bit overwhelmed and isolated.</li>
<li>Having a tea break at work with an endo sister who apparently came to the <a href="https://www.facebook.com/EndometriosisCanberra/?fref=ts">Canberra Endometriosis Network</a> through my campaigning at work a year and a bit ago, who I've only just discovered works with me. It was so lovely to talk to her during work hours and share stories.</li>
<li>Having an endo friend to message while trying a new treatment that involves putting capsaicin (as in the active ingredient in chillies) on my lady bits to try and desensitise them and put an end to this nerve pain once and for all. That is not a fun experience but it was made so much better by having someone to go through it with.</li>
<li>Reading Lena Dunham's <a href="http://www.lennyletter.com/health/a160/the-sickest-girl/">endometriosis special</a> in <a href="http://www.lennyletter.com/">Lenny Letter</a>. She had UTI symptoms too! I wonder how many other women have them and are dismissed like we both were.</li>
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These are just a few of the ways that I have felt loved and supported by the endometriosis community recently. Some days it really sucks to have this disease, but at the same time I am so thankful for the opportunity I have to reach out and make a difference in others' lives in really simple ways by sharing my experiences, and for them to make a difference in mine. I have so much love for my endosisters.</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-33826061915617378492015-10-04T04:09:00.000+01:002015-10-04T04:28:33.608+01:00The surprising costs of endometriosis<div class="MsoNormal">
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<a href="http://4.bp.blogspot.com/-uyRT939L1sU/VhCcyMNLucI/AAAAAAAABqs/KVDUN6X0nac/s1600/Australian-Dollars.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-uyRT939L1sU/VhCcyMNLucI/AAAAAAAABqs/KVDUN6X0nac/s1600/Australian-Dollars.jpg" /></a></div>
<i>Guest post from my dear friend (who also has endo) Sarah MacLeod. We met through the <a href="https://www.facebook.com/EndometriosisCanberra">Canberra Endometriosis Network</a> last year just before I left for the UK and bonded over having the same gynecologist.</i></div>
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<span lang="EN-US">I want to talk about something that’s not
very widely discussed – the financial impact of living with endometriosis.
<a href="http://www.theguardian.com/society/endometriosis">Endometriosis is finally making it into the news</a>! Usually the aspect of
infertility is discussed and pain is mentioned, but the financial burden is
not. There are a <a href="http://www.ncbi.nlm.nih.gov/pubmed/21846438">couple of</a> <a href="http://humupd.oxfordjournals.org/content/13/4/395.full">research papers</a>, however I want to give this the
personal touch.<o:p></o:p></span></div>
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<span lang="EN-US">The one thing that people like to talk
about as little as ‘Women’s Problems” is money. In the 5 years that my endo was
under control I spent $60,000 on medical bills, that’s not including any over
the counter medication. These were my healthy years. I was lucky to be healthy
enough to work to allow me to afford this. However because of my endo I never
managed to save for the future.<o:p></o:p></span></div>
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<span lang="EN-US">What the future brought was unhealthy
years. I am one of the lucky ones again in that I have both a partner and
parents who could support me, and this amazing thing called a credit card. For
approximately 18 months I could not work for more than 3 hours a week. I had
the sudden onset of chronic pelvic and nerve pain caused by endometriosis and
complications with a <a href="http://www.mirena-us.com/index.php">Mirena</a>. In this time I had <a href="http://www.pelvicpain.org.au/information/botox-pelvic-pain-campaign/">botox injections</a> every 6 months
to help relieve my nerve and muscular pain. This is not covered by medicare and
also not available where I live, in Canberra. This meant that each lot cost
$1000 plus travel costs, which were usually about $800. On top of that my
weekly chemist bills were $100 and I was having a weekly remedial massage at
$70 a week just to relieve my pain enough to work those 3 hours a week. On top
of this there were regular GP visits and unfortunately I could not find a bulk
billing GP who knew how to manage my pain so this was an extra cost. I am so
grateful that through all these things I have been able to return to work full time (although it is still an ongoing battle). Although things are looking up, we are still chipping away at the credit card debt that allowed me to become healthy enough to work. Those bills regularly make me feel like crying.<o:p></o:p></span></div>
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<span lang="EN-US">I would like you to now imagine that I was
not one of the lucky ones, that I did not have a partner and family to support
me emotionally, physically and financially. I have a friend who is in this
situation, only her problems are worse than mine so she is unable to work at
all and hasn’t been able to for a couple of years.</span></div>
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What prompted me to write this tonight is
this - I made a <a href="https://www.gofundme.com/jessendobattle?utm_source=internal&utm_medium=email&utm_content=cta_button&utm_campaign=upd_n">gofundme page</a> for my
friend to try and raise funds for her to have treatments she could not afford. The
page raised $760, which I was incredibly happy with. However today I saw a
gofundme page set up to help people with a wedding deposit that had made $2500
in 4 days. I do not begrudge these people that money in the slightest, but I
can’t help but feel put out that people are so willing to donate money to that,
and not to help someone have a better quality of life. People like the idea of
a happy ending, they like to know that their money is going to help someone. Us
girls with endo can’t give them that, we do not have a guaranteed happy ending.
One thing that is guaranteed is that without help, nothing will change, and
people will keep suffering. I also can’t help but think that perhaps if people
knew the impact this disease has on all aspects of our lives then this would
make a difference. I am hoping sharing my story might educate at least one
person on one more impact that this disease has on us, who then might be able
to tell one more person until no aspect of this disease is in the dark.</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-68305039988192425672015-04-02T20:55:00.000+01:002015-04-10T12:22:49.659+01:00Why are we still so silent on endometriosis?<div class="separator" style="clear: both; text-align: center;">
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Today is World Autism Awareness Day. It's a day I
probably wouldn't have given a second thought if their awareness campaign
didn't include taking a selfie while wearing blue, and I hadn’t just dyed
my hair blue yesterday. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Good marketing ploys aside, it’s important that we
learn more about this condition that is so little-understood, so that children
can grow up to reach their full potential, and we can empathise with those who
interact with society in a way that we don’t understand. I honestly don’t
really know much about autism, apart from it having an effect on behaviour and
learning difficulties, so I decided to <a href="http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx">look up some facts online</a>.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Roughly 1 in 100 people have autism. <b style="mso-bidi-font-weight: normal;">1 in 100.</b><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Endometriosis is <b style="mso-bidi-font-weight: normal;">five
times</b> more common than autism. <b style="mso-bidi-font-weight: normal;">1 in
10 women.<o:p></o:p></b></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">So why is it, that when I mention endometriosis, every
second person I talk to says “Endo-what?” Why do the people I do mention it to
say that I should “just have a hysterectomy”. (Like anyone would ever expect a
guy to cut off his testicles to ‘cure’ a non-cancerous disease.) It’s
exhausting.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">But I can’t help feeling that we are 10 steps behind
them with endometriosis awareness. If half of the community doesn’t even know
that endometriosis exists, how can they even begin to understand the condition,
or have empathy and support for those that suffer from it?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Last month was my three year anniversary of waking up
from my anaesthetic to hear my doctor say “You have endometriosis.” At that
time, there was one endometriosis network (on Yahoo groups) and no endometriosis charity active in Australia. Things have
changed for the better in those three years. Out of a hunger to meet others
like us, Katie and I got the ball rolling with the <a href="https://www.facebook.com/EndometriosisCanberra?fref=ts">Canberra Endometriosis Network</a>. Then, soon after, <a href="http://www.endometriosisaustralia.org/">Endometriosis Australia</a> was founded. Last year, with
the <a href="http://vintagelib.blogspot.co.uk/2014/08/bayer-release-visanne-in-australia.html">petition for Bayer to release Visanne in Australia</a>, <a href="http://endoactive.com.au/">EndoActive</a> was founded,
then the P<a href="http://www.pelvicpain.org.au/">elvic Pain Foundation of Australia</a>, and most recently KnowEndo in Sydney. There are plans to set up an Adelaide network and many
other local networks have popped up around Australia.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I am encouraged by the exponential growth of pelvic
pain organisations in Australia. It makes me hope that one day in the near
future I won’t have to explain my disease every time it comes up in
conversation, and the diagnostic delay will decrease. But we can’t afford to
sit on our laurels. There is still misinformation and poor treatment even among
those conscious of endometriosis (including GPs and gynecologists). Regularly new
women join the <a href="https://www.facebook.com/groups/canberraendometriosisnetwork/?fref=ts">Canberra Endometriosis Network facebook group</a> and demand to know
why their doctors won’t just rip out their uterus already. They ask how we cope
with dealing with the fact that the doctors can’t help us beyond oral
contraceptive pills and surgery.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">They’re wrong. This is not a hopeless disease. My
quality of life is a thousand times better (not an overstatement, just ask my
parents) than it was 3 years ago when I was diagnosed. I’ve gone from bedridden
and depressed to having the time of my life on the other side of the world. But
it’s been a long road from there and it’s far from over. I’m going to live with
this disease and its effects for the rest of my life. (Even after menopause I’m
expecting to have to manage the scar tissue, nerve damage and pelvic floor
dysfunction.)<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">In the meantime, to stay as healthy as I can I:<o:p></o:p></span></div>
<div class="MsoNormal">
</div>
<ul>
<li><span style="font-size: 13.5pt;">Eat a (mostly) gluten, caffeine, alcohol, soy and
processed-food free diet to reduce inflammation and alleviate digestive
symptoms</span></li>
<li><span style="font-size: 13.5pt;">Take daily drugs to return my over-sensitive nerves to
normal functioning</span></li>
<li><span style="font-size: 13.5pt;">Take agomelatine daily to deal with the fatigue and
mood swings that come with chronic pain</span></li>
<li><span style="font-size: 13.5pt;">Take an oral contraceptive pill to </span><i style="font-size: 13.5pt;">try</i><span style="font-size: 13.5pt;"> to slow the growth of the
endometriosis, reduce the likelihood of further ovarian cysts (endometriomas)
forming and to lighten my periods [the research on this is inconclusive though
some people can find it helpful]</span></li>
<li><span style="font-size: 13.5pt;">Take krill oil daily to reduce inflammation</span></li>
<li><span style="font-size: 13.5pt;">Do stretches, use trainers and see a pelvic floor
physiotherapist to treat my pelvic floor dysfunction</span></li>
<li><span style="font-size: medium;">Occasional Botox injections into my pelvic floor and sidewall to relax permanently tense muscles</span></li>
<li><span style="font-size: 13.5pt;">Make wise decisions about how and where I spend my energy</span></li>
<li><span style="font-size: 13.5pt;">Have excisional surgery when all the other treatments
aren’t keeping the pain at a manageable level</span></li>
</ul>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Increased awareness would mean more funds and more
resources. Today, the available treatment options (as detailed above) focus on
the symptoms. A substantial research effort would likely result in the
discovery of a drug that works on the root cause of endometriosis instead. This
could lead to the development of a routine blood test for endometriosis for
girls when they have their first period. If this test came back positive, they
could take the targeted drug, which would help correct the rogue DNA pathways
responsible for the disease. There would be no nasty complications
(oversensitive nerves, pelvic floor dysfunction, scar tissue, infertility) from
years of chronic pain and inflammation because there would be no endometriosis.
I hope that world is our future.<o:p></o:p></span></div>
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<span style="color: black; font-family: Times; font-size: 13.5pt; mso-ansi-language: EN-AU; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">So if you’re new to being diagnosed, you’re coming in
at an exciting time. Join <a href="http://www.endometriosisaustralia.org/#!support-groups/c1ols">all the networks</a>, read all the books,
seek out an <a href="https://www.google.com/maps/d/viewer?oe=UTF8&ie=UTF8&msa=0&mid=zD7EcIq-fuP8.kC08SbKBqwwE">endometriosis specialist</a>. Use your newfound knowledge to
educate those around you. You will need all the support you can get.<o:p></o:p></span></div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-72257549921524302992014-12-04T06:00:00.000+00:002014-12-04T06:00:05.938+00:00Musings {04-12-14}<div class="separator" style="clear: both; text-align: center;">
<a href="http://cdn.webfail.com/upl/img/80e763938c6/post2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://cdn.webfail.com/upl/img/80e763938c6/post2.jpg" /></a></div>
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<b>linking...</b><br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="http://www.drseckin.com/5-red-flags-of-endometriosis-that-every-doctor-and-patient-should-know">5 Red Flags of Endometriosis that Every Doctor and Patient Should Know</a></div>
<div style="text-align: center;">
Seriously. Read this. It's the most comprehensive list of symptoms of endometriosis I have ever seen. You might recognise these symptoms in yourself, your sister, your partner, your daughter. Many women with endometriosis think their symptoms are normal and just put up with them, until they have to go to the emergency room because of the pain (probably thinking they have appendicitis) or they have trouble conceiving.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="http://survivingendometriosis.com/2014/11/25/seven-reasons-why-endo-fatigue-causes-so-much-trauma-to-its-sufferers-2/">Seven reasons why endo-fatigue causes so much trauma to its sufferers</a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="http://beingfran.blogspot.com.au/2013/04/how-to-make-flight-attendant-love-you.html">How to make a flight attendant love you</a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="http://mywifesfightwithbreastcancer.com/">Putting a face to cancer: the battle we didn't choose</a></div>
<div style="text-align: center;">
A moving photo essay documented by the husband of a woman with cancer.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="http://www.xojane.com/issues/how-not-to-be-a-dick-to-your-sick-friend">How not to be a dick to a chronically ill person.</a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="http://www.xojane.com/it-happened-to-me/it-happened-to-me-i-had-surgery-for-endometriosis-8-months-ago-and-now-its-back">It happened to me: endometriosis is the most painful thing I've ever experienced and just 8 months after surgery it's already come back.</a></div>
<br />
<b>seeing...</b><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-6ENoKVFYzFQ/VH4hEgjCcWI/AAAAAAAABjU/qL0LWUmjXmA/s1600/IMG_8913.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-6ENoKVFYzFQ/VH4hEgjCcWI/AAAAAAAABjU/qL0LWUmjXmA/s1600/IMG_8913.JPG" height="480" width="640" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-vKl7X-h8HK4/VH4hE3IzipI/AAAAAAAABjY/LMqjKRpy1NM/s1600/IMG_8919.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-vKl7X-h8HK4/VH4hE3IzipI/AAAAAAAABjY/LMqjKRpy1NM/s1600/IMG_8919.jpg" height="640" width="480" /></a></div>
<br />
<div style="text-align: center;">
I live here now. Yep. It's pretty great.</div>
<br />
<b>reading...</b><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-p23JWAtBK_o/VH4d4jGNInI/AAAAAAAABjI/y_A4I5gmecQ/s1600/books2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-p23JWAtBK_o/VH4d4jGNInI/AAAAAAAABjI/y_A4I5gmecQ/s1600/books2.png" height="640" width="430" /></a></div>
<div style="text-align: center;">
I'm on a dystopia/sci-fi kick at the moment (The Handmaid's Tale started it - Where'd You Go, Bernadette was before.) It's happened to me before - I've read and loved 1984, Divided Kingdom, The Trouble with Lichen and The Day of the Triffids. I'm still halfway through Brave New World and I'm thinking that next I will read The Left Hand of Darkness by Ursula Le Guin or Only Ever Yours by Louise O'Neill. (Also, how had I never read The Giver or The Handmaid's Tale before??? Way overdue.)</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com1tag:blogger.com,1999:blog-4592914674512042286.post-36274317750881405882014-12-02T19:24:00.000+00:002014-12-02T19:24:09.437+00:00A plea to doctors everywhere<div class="separator" style="clear: both; text-align: center;">
<i>This is a post I wrote in May of 2013, but for some reason I never actually published it. Reading it now, after finding an <a href="http://www.drsusanevans.com.au/">amazing gynecologist</a> and, despite moving countries, finding a good GP who just gave me all the scripts I needed right away without challenging, I can still remembering how frustrating and soul-sucking it is to have to stand up for yourself over and over again when you know what is best for your body.</i></div>
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<a href="http://2.bp.blogspot.com/-ZDeQ_x5n2ss/UC5mDfeJjaI/AAAAAAABxGE/a2JsQGE2wKs/s320/Doctor.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-ZDeQ_x5n2ss/UC5mDfeJjaI/AAAAAAABxGE/a2JsQGE2wKs/s320/Doctor.jpg" /></a></div>
<br />
On Friday I had an experience with a doctor that is pretty typical of my experiences with doctors over the last ten years (since I stopped using my dad as my doctor). The exception to these experiences is my amazing GP who is currently on maternity leave until the end of the year - hence why I am seeing other doctors.<br />
<br />
So, what happened?<br />
<br />
I rocked up, had to wait in the waiting room for 25 minutes, despite the appointment being fairly early in the day, calling up beforehand to see if they were running on time and being told that I wouldn't have to wait. That is 25 minutes that I'll have to make up later at work. My regular (maternity-leave) doctor regularly ran late, but her comprehensive, compassionate care massively outweighed the wait, and I could always call up early and get an estimate of how late she was running and plan accordingly.<br />
<br />
Anyway, I went in to the doctor. All I wanted was a repeat of my Valdoxan (anti-depressant) script. I asked the doctor for a repeat, she then looked up the drug because she wasn't familiar with it, and then proceeded to tell me that it wasn't a "real" antidepressant because they only gave repeats of 2 instead of 5 like they do with SSRIs (selective serotonin re-uptake inhibitors - another type of antidepressant that is used more commonly). She also said that in a dismissive voice "it is not very common to use this drug". (So clearly it must be wrong and not be working for me???) She then bullied me and tried to tell me that I should go on SSRIs instead of Valdoxan, because she didn't believe that Valdoxan actually worked. She asked me why I didn't want to go on SSRIs and I said that I didn't want to change what I was doing because it was working so well for me, and I had no side effects. She then said, well, SSRIs have no side effects. I told her that was bullshit (not my actual words, but I wanted to say that) and that I have lots of friends on SSRIs that have had bad side effects and could you just give me the script already, thank you (I actually said that last bit word for word). I was actually going to ask her about some other medical things, but she had belittled me enough already for the day and I on the verge of tears, so I took the prescription and left. Then I went and paid my $80, and cried in the car park out of frustration.<br />
<br />
Pretty much every doctor's appointment to do with my endometriosis or anxiety/depression in the last ten years has ended up with me crying in the car park. Why? Because the doctors don't listen and they don't respect what you tell them.<br />
<br />
My question is - when the treatment that the patient is having is working, why try to bully someone into changing it???? The last time I went to the doctor (a different one again) I had pretty much exactly the same experience where she tried to bully me into taking the Pill, despite the fact that I had had the Mirena removed because of anxiety and depression issues and I'd had many bad experiences with the Pill before. (This doctor also tried to get me to change to SSRIs, but I resisted).<br />
<br />
To be honest I've almost completely given up on the medical profession now. They don't seem to be able to provide me with any real solutions to my medical problems, and when one doctor takes an unconventional route that works for me, another one will try to bully me out of it because "that's not the way that we do things". Do they not get taught in medical school that every patient is different and that what works for one patient won't necessarily work for another? I don't fit into their boxes (e.g. I don't tolerate the Pill) and they don't want to give me any other options. I have had a lot less pain since I started limiting my intake of wheat, and I basically decided to do that on my own accord after reading a bunch of scientific literature that supported it. Who knows if it will actually work long term, but it seems like it's working at the moment so I'm going to stick with it.<br />
<br />
I know doctors are human and they make mistakes. But seriously, since when is it ok to make me wait half an hour on average for an appointment, then spend five minutes with me, belittle me, tell me that I am wrong and that I should do things your way even though I've already tried that and it didn't work, make me cry and then take my $80 (or $200 depending on the doctor)?<br />
<br />
Have you ever been bullied by a doctor?Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-34874708993066867502014-09-28T17:11:00.000+01:002014-09-28T17:11:19.015+01:00I've moved to England!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-mt767ZzBM1g/VCgwNd0IrLI/AAAAAAAABiM/iS52UDTVNo8/s1600/IMG_8267.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-mt767ZzBM1g/VCgwNd0IrLI/AAAAAAAABiM/iS52UDTVNo8/s1600/IMG_8267.jpg" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">View of the castle on one of the many long walks from my college to town I have taken.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
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So I've arrived in Durham. The last few days have been a hectic rush of trying to get everything sorted over here and settling in. Simple things like making dinner have become so much more challenging (not even factoring in the fact that the supermarket is a 40 min walk away and there is not a non-non-stick pan in sight.)<br />
<br />
Moving is hard. Everyone knows it is.<br />
<br />
I used to have a quote on a post it note stuck to my computer at work - "Transition challenges the way you value yourself." I tried to re-find it on the internet just then but then I realised that I think it was a quote I made up from talks with my psychologist. But it's so true - trying to "fit in", make new friends, find your way around a new place... all those old boundaries that you had in your old life are tested and you have to keep them strong (requiring a lot of energy), or adjust them if need be. I've spent a lot of the week being exhausted, not just from having to walk everywhere, but also from having to concentrate to understand the myriad of accents I've been exposed to, and all the extra energy you need when you are meeting a whole bunch of new people at once in an unfamiliar environment.<br />
<br />
It is refreshing only having the bare necessities, even if it means I'll now have to do laundry weekly (another not-so-simple task when you have to use the laundry room that is shared by two colleges' worth of students) until I accumulate some more clothes. I've started to make my room a little more homely, putting up photos and fairy lights (<a href="http://en.wikipedia.org/wiki/Pound_sign" style="background: none rgb(255, 255, 255); color: #0b0080; font-family: sans-serif; font-size: 14px; line-height: 22.3999996185303px; text-decoration: none;" title="Pound sign">£</a>3 at Wilco).<br />
<br />
It's also bloody difficult to get a UK bank account - you need to provide them with:<br />
<br />
<ul>
<li>your passport</li>
<li>a letter from your college confirming that you live there</li>
<li>three months' worth of bank statements</li>
<li>three months' worth of payslips</li>
<li>a letter from your employer confirming that they are sponsoring you</li>
</ul>
<br />
...and I had to book an appointment a week and a half in advance before they had any free slots (that's on October 6th). So that is frustrating.<br />
<br />
However, overall I'm really loving it here. I'm yet to be rained on (almost a week!) and I feel like I'm living in a postcard. I'm looking forward to Tuesday when I have course induction and for some of the student fairs during the week when I can sign up to social groups within the university. It's going to be a good year.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com2tag:blogger.com,1999:blog-4592914674512042286.post-34362711015721785332014-09-01T09:10:00.000+01:002014-09-01T09:10:45.192+01:00Giving feedback to previous doctors<div class="tr_bq">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://worldofdtcmarketing.com/wp-content/uploads/2013/12/doctor-talking-to-patient.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://worldofdtcmarketing.com/wp-content/uploads/2013/12/doctor-talking-to-patient.jpg" height="638" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://worldofdtcmarketing.com/why-physicians-have-to-treat-the-whole-person/cost-of-healthcare-in-the-u-s/attachment/doctor-and-patient/">via</a></td></tr>
</tbody></table>
Over the years I have had many doctors that have dismissed me and my endometriosis symptoms. Unfortunately, this is a reality for almost all patients with endometriosis. Often I just move on to a new doctor without giving the last doctor any feedback. However, after another doctor took my urinary symptoms seriously and found some treatments that helped manage them, I felt that it was my duty to email the original doctor to supply them with this information so that in the future they would be more informed in treating new patients.</div>
<br />
I tried to be as respectful, empathetic and civil as possible. Doctors are humans and make mistakes, and endometriosis is a disease that I imagine would be frustrating to treat, as there are no treatments that work for everyone, and often patients end up with none of the treatments being fully effective. It's unpredictable and far from simple. However, on the other side of the equation, women with endometriosis are often marginalised and told that the pain is in their own head or that there is nothing that can be done and that they should just deal with it. This is not okay, and many women end up having to cope with symptoms without even knowing about or trying treatments that may work for them.<br />
<br />
Health professionals, can you add any tips for communicating with doctors and health professionals who have misdiagnosed or dismissed symptoms?<br />
<br />
The following is my email to the receptionist at this doctor's clinic (name censored to protect identity):<br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Dear Sir/Madam,</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I would like to give some feedback on treatment I received from Dr xxxxxx in December 2012. I went to see Dr xxxxxxx about a few issues that had persisted after a laparoscopy was conducted on me by another doctor in March 2012, where I was diagnosed with endometriosis and some of the endometriosis was ablated. I went to him as I was being woken up in the middle of the night multiple times with my urinary symptoms (urgency, frequency, burning) and it was also causing me to miss work. Dr xxxxxx dismissed me and told me that if he had to get up in the middle of the night to pee, I could “deal with it” too. Being 24 years old when I heard this, I did not accept this. I went and did my own research, changed my diet (cut out wheat, caffeine, alcohol and soy) and tailored my exercise plan. After these changes did not give me the full improvement that I had hoped for, I then sought a second opinion in Dr Susan Evans in Adelaide. She prescribed amitriptyline (25mg a day) for neuropathic pain that she believed was causing some of these symptoms, and pelvic floor physiotherapy to treat muscles that had become permanently tight due to my long history of pelvic pain. As a combination of both of these treatments over the course of several months, my urinary symptoms have pretty much disappeared and I can now sleep through the night easily and not spend my work day distracted by urinary pain.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Dr xxxx did prescribe me with tranexamic acid for heavy bleeding during this same appointment and that has helped me greatly. I am thankful for that.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I hope you will relay my feedback to Dr xxxxx and that he will take it into account when treating future patients.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Sincerely,</span><br />
<span style="font-family: Verdana, sans-serif;">Elizabeth Metz</span>Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-90895304276692197752014-08-28T12:53:00.001+01:002014-08-28T13:47:13.835+01:00How I manage my pesky bladder symptomsThis post should also be entitled "How I escaped the living hell that is feeling like you have a constant UTI."<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://rawjustice.com/wp-content/uploads/2010/09/toilet.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://rawjustice.com/wp-content/uploads/2010/09/toilet.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://joe-ks.com/">via</a></td></tr>
</tbody></table>
A UTI, urinary tract infection, for those not in the know, is most commonly caused by a bacteria called Escherichia coli (E. coli) which usually resides in the digestive system and bowel. When this bacteria invades the urethra and subsequently, bladder, it can result in lots of really fun symptoms including:<br />
-frequency (feeling like you need to pee more often than you usually do)<br />
-urgency (feeling like you need to pee really badly, even when you try and end up only peeing a few drops or nothing at all)<br />
-burning pain sensation when urinating a.k.a fires of hell descending on your nether regions<br />
-pain above the pubic bone<br />
<br />
If a UTI progresses to the kidneys (through the tubes that connect your bladder and kidneys, called ureters) you can get flank pain and fever. Kidney infections can be fatal which is why doctors tend to prescribe antibiotics quite readily.<br />
<br />
I had every single symptom above (apart from fever), plus dysuria (pain at the end of peeing). I would get up multiple times a night to pee, and on my worst nights I would spend hours on the toilet, in pain, not peeing, but feeling like I needed to. I even had a few attacks where the symptoms magnified themselves so much that I ended up with horrible flank pain that had me sobbing and screaming in pain and I was convinced I had a kidney infection (just no fever). I would drink the maximum amount of Ural allowed and drink cranberry juice and take cranberry tablets and it wouldn't make a difference. The pain was so bad it was making me depressed, as I wasn't sleeping properly and was constantly uncomfortable. I would get up to go to the toilet more than once an hour at work and it was difficult to concentrate. I often sneakily hid a heat pack on my crotch at my work desk for relief, and at home I would put an ice pack on my crotch when it got really bad.<br />
<br />
Thing is, <b>what I was having was not a UTI</b>. Every time I went to the doctor and peed in a cup, the results would come back saying that I had red blood cells and white blood cells in my urine, but no bacteria consistent with an infection. The doctors still gave me antibiotics but I stopped taking them after the first few attacks because they wreaked havoc with my body (i.e. I ended up with UTI-like symptoms AND thrush. FUN!) I also thankfully have a dad who is a doctor, so even though he lives in another state, I could call up and clarify whether I was making a medically stupid decision in deciding not to take the antibiotics.<br />
<br />
So, what did end up I doing about it?<br />
<br />
Firstly, I went to my gyne, because I thought that endometriosis on my bladder might be the cause. He told me that if he had to get up in the middle of the night to pee, I could put up with it too. I decided that he was ridiculous and should probably go and get his prostate checked, and got a new gyne. (It took over a year to find a new one, mind you.)<br />
<br />
In the meantime, I stopped having caffeine intake of any kind, bar a few squares of dark chocolate occasionally. I had already stopped drinking coffee a few years ago after having terrible reactions to it, but now I cut out all black tea and green tea and only drank herbal teas like rooibus, peppermint, rose or chamomile. This was not fun for me as I was (and still am) a tea nut. I. love. my. tea. However, the UTI-like symptoms were actually driving me crazy with lack of sleep and pain, so I took drastic measures. I also limited my alcohol intake as I found my symptoms were worse when I drank. I even stopped doing my beloved Bikram yoga as I found it was irritating my bladder too much to have to drink that much water to make up for what you sweat.<br />
<br />
Next, my new gyne prescribed me <a href="http://vintagelib.blogspot.com.au/search/label/amitriptyline">amitriptyline</a> (Endep) for neuropathic pain. I had been in pain for such a long time from endometriosis that my entire pelvis and genitalia had become hypersensitive, with my neural pathways sending an expression to my brain that was much greater than the stimulus that was coming in. Think of it as your brain receiving a message that you have just been cut with a samurai sword when you've just had a small scratch.<br />
<br />
She put me on 25 mg a day, starting at 5 mg a day and going up 5mg a day in my dosage every week (i.e., week 1=5mg/day, week 2=10mg/day, week 3=15mg/day, etc). This took a few weeks to start working but is AMAZING. Side effects that it gave me were headaches occasionally in the first two weeks of use, incredible drowsiness after taking the tablet (like you have to go to sleep then and there) and slightly dry eyes occasionally. I have now been taking this medication for 6 months have found that I no longer get so drowsy when I take the pill but do have struggles waking up in the morning if I don't take it early enough the night before. I usually take it around 8pm if possible, and if I have to get up really early the next day I'll take it at 6pm. It also makes you very sensitive to alcohol, but that has been good for me as alcohol worsens my endo symptoms anyway so it gives me extra motivation to limit my intake. Another option if amitriptyline does not work for you is Lyrica.<br />
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Finally, I started seeing a pelvic floor physiotherapist. I didn't realise it, but I had <a href="http://www.drsusanevans.com.au/physiotherapy-for-pelvic-pain-with-dr-patricia-neumann-and-ms-sonia-scharfbillig/">pelvic floor dysfunction</a> and this was contributing to my urinary symptoms. Pelvic floor dysfunction is when the muscles in the pelvic floor and surrounds spend so much time in spasm due to pain (think of how you grit your teeth when you have a toothache, or clench your fist when you hurt your arm), that that becomes their default position. These muscles become very tight and this can cause even more pain than the original cause over time. Pelvic floor physiotherapy uses exercises, relaxation and massage techniques to try and retrain these muscles to act as they should.<br />
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I found an amazing physiotherapist in Ali Burnett at the<a href="http://www.drsusanevans.com.au/physiotherapy-for-pelvic-pain-with-dr-patricia-neumann-and-ms-sonia-scharfbillig/"> Pelvic Pain Clinic </a>in SA (when I visit my gynecologist), and <a href="http://www.maureenbailey.com.au/">Maureen Bailey </a>in Canberra. Canberra also has a pelvic floor physiotherapist in the public health system that you can visit free of charge, but this was not available when I started my treatment. I went weekly and that, coupled with using a <a href="https://susanevans.evolveshop.com.au/epages/susanevans.sf/en_AU/?ObjectPath=/Shops/5353109591318146/Products/4/SubProducts/4-0002">relaxation CD</a> and dilators, helped improve my bladder symptoms and also other pelvic pain. I also did regular yoga for stretching and relaxation. Maureen Bailey also does remedial massage on my back which helps with the flank pain.<br />
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If you are a woman with endometriosis, notice whether you are clenching your pelvic floor right now. I often notice that I clench my pelvic floor in everyday situations, like sitting on a chair or talking to friends, and need to consistently remind myself to relax it. It's even more important in winter, when the cold makes you tense up.<br />
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After taking all of these measures, I still had some vulval sensitivity, and so my gyne prescribed me an amitriptyline topical cream that I apply to the area twice a day. I am more consistent in applying this when I have flare ups, but I find that even just applying it 4 times a week keeps the number and severity of my flare ups of bladder symptoms down.<br />
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I hope that this helps any women out there with endometriosis who are experiencing similar symptoms and want an option other than antibiotics. Please be patient with these treatments, as none of them work overnight, but if you persist, hopefully you will have similar results to what I have had. If you have any questions feel free to email me at <a href="mailto:vintagelib@gmail.com">vintagelib@gmail.com</a>. (However, I am not a doctor or other medical professional so please consult with your doctor if you think any of these treatments might work for you.)Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-69364944626531162192014-08-28T02:13:00.000+01:002014-09-03T05:31:28.245+01:00Bayer: Release Visanne in Australia<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-nfIBsHA9chA/U_59a4jINgI/AAAAAAAABfE/NxEqyXK2ht0/s1600/10636957_10152387120263460_2593391304626618831_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-nfIBsHA9chA/U_59a4jINgI/AAAAAAAABfE/NxEqyXK2ht0/s1600/10636957_10152387120263460_2593391304626618831_o.jpg" height="640" width="451" /></a></div>
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At the <a href="http://vintagelib.blogspot.com.au/2014/08/the-impacts-of-living-with.html">The Impacts of Living with Endometriosis Information Night</a> on Tuesday, we were made aware that a new(ish) treatment for endometriosis (Visanne) is not being made available in Australia because it's producer (Bayer) does not see it as a commercially viable decision. It has already been approved by the TGA in 2010 and declared safe for use. Visanne is a pill that contains <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3140813/">dienogest</a>, a different form of progestogen that is currently only available in Australia in pills (<a href="http://vintagelib.blogspot.com.au/search?q=qlaira">Qlaira</a> & <a href="http://www.bayerresources.com.au/resources/uploads/PI/file9439.pdf">Valette</a>) that also contain oestrogen (estradiol valerate and ethinyloestradiol, respectively). <a href="http://humrep.oxfordjournals.org/content/25/3/633">Dienogest has been found to be equally as effective as Lupron </a>(leuprolide acetate) in the treatment of endometriosis, but with a much less severe side effect profile. One of the most shocking side effects of Lupron is bone density loss, leaving women susceptible to osteoporosis, and dienogest does not have that side effect.</div>
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The only thing stopping this medication being sold in Australia at the moment is corporations thinking that there is no market for it.</div>
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You can change that. You can email them and tell them that there is a market. They are having a meeting next week to discuss this decision so you have to act fast. Women with endometriosis need to be given more choice in treatments for their disease.</div>
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There is also a change.org petition <a href="https://www.change.org/p/dr-jan-twomey-australian-women-with-endometriosis-want-access-to-visanne">here</a>.</div>
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If you're looking for inspiration for what to say in your email, here are the emails my mum & I sent to Bayer:</div>
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Dear Dr Twomey </div>
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Since my oldest daughter was diagnosed with endometriosis several years ago she has undergone two medical procedures and struggled to find a contraceptive pill she could tolerate. Visanne may well be the solution that she needs. </div>
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Endometriosis must be one of the most hidden and silent diseases of our age. Since the diagnosis many of my friends and colleagues have revealed that they too suffer from endometriosis. I would assume that there are many more women who are sufferers who remain undiagnosed. My second daughter may well have the disease and not realise it because her symptoms are less severe.</div>
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Bayer could spearhead a campaign in Australia to raise awareness of the disease and market their drug to clinicians at the same time. This could be a win for both parties. </div>
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Please reconsider and provide this choice for Australian women. </div>
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Kind regards,</div>
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Jackie Street</div>
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~</div>
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Dear Dr Twomey,</div>
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I am 1 in 10 women. I have endometriosis and I want access to Visanne as a treatment choice.</div>
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I’ve tried everything else.</div>
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I’m currently on Qlaira, another one of your pills that contains dienogest (like Visanne), and I am having much success with that pill. Normally on hormonal medications I get horrible anxiety and depression, alongside many other undesirable symptoms (this includes experiences I have had on Yaz and the Mirena). However, on Qlaira, I have had none of those symptoms. My moods have even been more stable on this pill, and my skin is clearer than it’s ever been. Unfortunately, in the last week and a half, I have been back to bleeding and cramping on Qlaira, even though I am mid-cycle (on pills 16-20) and this should not be happening. I suspect that this may be because Qlaira has extra oestrogen that Visanne does not have, and adding more oestrogen to an oestrogen-fuelled disease is not a smart move. I would love to try Visanne and see what it is like for me to be only on dienogest.</div>
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Women in Australia have very few treatment options for endometriosis. I hope that Bayer will be a visionary and see to it that Visanne is made available to women in Australia. If you let us, we will prove to you that it is commercially viable. 500,000 women is a pretty big target market.</div>
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Please reconsider your decision and make Visanne commercially available in Australia. Otherwise I will be travelling to Germany to get it myself.</div>
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Sincerely,</div>
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Libby Metz</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com1tag:blogger.com,1999:blog-4592914674512042286.post-44571337550137466582014-08-26T11:00:00.000+01:002014-08-27T04:20:01.010+01:00The impacts of living with endometriosis<div dir="ltr" style="margin-bottom: 10pt; margin-top: 0pt;">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-ZvlQ5-W4Dhg/U_0f0nBMmMI/AAAAAAAABek/H5NTxKvjeLg/s1600/10647229_494867477323846_5050601302790194417_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-ZvlQ5-W4Dhg/U_0f0nBMmMI/AAAAAAAABek/H5NTxKvjeLg/s1600/10647229_494867477323846_5050601302790194417_n.jpg" height="400" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo courtesy of Donna Ciccia, <a href="http://www.endometriosisaustralia.org/">Endometriosis Australia</a></td></tr>
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<i><span style="font-family: Cambria;"><span style="line-height: 2; white-space: pre-wrap;">Tonight, as you read this, I will be co-MCing a sold-out (tickets were free but limited) endometriosis information night organised by the <a href="http://www.wchm.org.au/">Women's Centre for Health Matters</a> at the Legislative Assembly in Canberra. At this event, co-founder Katie Williams will be delivering this speech on behalf of the <a href="https://www.facebook.com/EndometriosisCanberra?ref=ts&fref=ts">Canberra Endometriosis Network</a>. I'm pretty sure I'm going to cry.</span></span></i></div>
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<i><span style="font-family: Cambria;"><i><span style="font-family: Cambria;"><span style="line-height: 2;">--------------------------------------------------------------------</span></span></i></span></i></div>
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<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">C.S Lewis said, ‘Friendship is born at that moment when one man says to another ‘what you too? I thought no one but me…’ </span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span>
<span style="font-family: Cambria; line-height: 32px; white-space: pre-wrap;">This sums up how Libby and I felt after meeting at an endometriosis information night in May 2012. She newly diagnosed, me at 25, a veteran of 7 years. We had both been living with the impacts of endometriosis since our first period. Before we met we each felt isolated. Together, we knew we were stronger and could not only face this disease, but also change the landscape for others with the same diagnosis. And so, that quote became the motto of what we wanted to achieve.</span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span>
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">We created the Canberra Endometriosis Network not long after; initially there were just 3 of us, catching up in my lounge room. We have now proudly grown to over 120 women and have monthly meet ups at the Women’s Centre for Health Matters. We are thankful for the ongoing support of Angela, Marcia and the WCHM, especially for organising and bringing us all together here tonight. To Melissa and the Canberra Endometriosis Centre, we thank you for bringing Libby and I together in the first instance and for your ongoing support and referrals to our Network.</span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">~</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<a href="http://1.bp.blogspot.com/-R6Bzs-0HNpY/U_05xj4U0jI/AAAAAAAABe0/YTrqI9J0Nfc/s1600/10264331_10151967291586862_9090455121892361505_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-R6Bzs-0HNpY/U_05xj4U0jI/AAAAAAAABe0/YTrqI9J0Nfc/s1600/10264331_10151967291586862_9090455121892361505_n.jpg" height="226" width="320" /></a><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">The Canberra Endometriosis Network supports and welcomes women at all stages of their journey with endometriosis from those in their teens and at the beginning of their journey, through to those still living with the effects of the disease post-hysterectomy. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Tonight you will hear a range of experts talk about the symptoms and consequences of endometriosis from a medical point of view. But endometriosis impacts not only a woman’s physical well being; it impacts almost all aspects of her life. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">~</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">The widely accepted prevalence of endometriosis is one in ten, but medical professionals acknowledge this number could in fact be much higher. This is a staggering statistic, considering most people in the general population haven’t even heard of the disease and yet with similar or lower prevalence rates we all know about diseases and conditions such as diabetes, arthritis and multiple sclerosis. </span></span><span style="font-family: Cambria; font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="font-family: Cambria; font-size: 16px; vertical-align: baseline; white-space: pre-wrap;"><i>[Note by Libby for the blog - all these diseases are recognised by spell-check, endometriosis isn't!!]</i></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Endometriosis is rarely recognised, at a minimum, as a chronic health condition, we need to change that. As a society we need to stop seeing endometriosis as a ‘woman’s problem’ but rather a problem that affects all of us. We need to stop seeing it as a condition that affects her menstruation, but rather a condition that requires consideration of the whole person and a multi-disciplinary approach. We need to break down the taboo that remains because talking about endometriosis involves talking about painful sex and painful menstruation. For these reasons there remains a strongly misplaced stigma around suffering with the disease.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">In part due to the lack of awareness and ongoing stigma, one of the most significant impacts of living with endometriosis is the feeling of isolation that often starts with the onset of symptoms. And it is just not awareness amongst family, friends, teachers, employers and colleagues we crave, it is awareness amongst the medical community. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">The average time it takes for a woman to get an accurate diagnosis of endometriosis is 7 years. Bringing with it a range of often-contradictory emotions. From relief to grief, from empowerment to helplessness, from knowledge to confusion, finally knowing the cause of your pain has a name and yet also knowing there is no cure. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">During the interim period to diagnosis, women and girls often feel or are made to feel like they are attention seeking. In some cases this continues well after diagnosis, when treatments are ineffective, do not suit a woman’s lifestyle or needs, or worse when some symptoms are not identified and treated as being linked to, or caused by, endometriosis. When this happens women start to doubt themselves and their sanity. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">As you will hear tonight, part of what makes this disease hard to live with, hard to manage and hard to treat, is that symptoms do not directly correlate to the extent of the disease and endometriosis and its treatment affects individual women in individual ways. What works for one, will often not work for another. The Network recognises this and encourages women to search for and find what works for them. This can range from surgery and medication to diet, exercise and physiotherapy. There is no one size fits all approach to endometriosis.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">~</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Symptoms of endometriosis include heavy bleeding and bleeding between periods, extreme and chronic fatigue and infertility. Perhaps the most puzzling symptom is diarrhoea and constipation, and as the endo sisters in the room will know well, the medical miracle that is experiencing both those symptoms in the same toilet visit. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">But the most common and debilitating symptom is pain. The pain associated with endometriosis can range from constant, daily aches through to acute sharp, stabbing pains, very few of these are ‘period pains’, often women with endometriosis experience pain throughout the month. In many women constant pain over many years can lead to pelvic floor dysfunction, which Marita will talk about later tonight.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">And it can come on in an instant. We may look fine one day, one hour, one minute, and be completely struck down with debilitating pain the next. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">It is the invisible and unpredictable nature of the pain associated with endometriosis that impacts many women the most. It makes planning everyday activities, having a social life, making commitments to friends, work and hobbies at times feel impossible. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">It is pain that often impacts so many facets of a woman’s life and the choices she makes. For me, in my late teenage years, that meant making the decision to forgo university as I could not commit to study when I couldn’t predict what my body would do. For others, that may mean that they need to take longer to complete study, or career paths that require long hours or are physically demanding are no longer an option. Sometimes passion and drive can overcome these hurdles, but often endometriosis leaves women in a very different position to that which they imagined they would be, leaving them with grief for what might have been. Many women with endometriosis end up re-evaluating how they measure their self-worth.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">~</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Endometriosis has a significant impact on our intimate relationships. Many of us long for the day when we can have spontaneous sexual experiences with our partners without worrying about the associated pain and often bleeding that comes with it. It is also important to note that simply the act of arousal can flare symptoms such as pain. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Many women who suffer from endometriosis also experience various levels of vaginismus (sometimes making penetration impossible). In these situations it is important to acknowledge the impacts and frustrations of sexual dysfunction on both partners. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Many people express themselves physically as well as emotionally so when the physical is not possible, communication can be interrupted. It is important for partners to understand that it is not a lack of attraction or desire that leads to women with endometriosis not wanting to engage in sexual activity. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Between the pain, painkillers, side effects of medication (many of which result in diminished libido), medical procedures, unpredictable bleeding, unpredictable bowel and bladder habits, sore breasts and mood swings, a woman with endometriosis may not exactly feel ‘sexy’. But it does not mean saying goodbye to intimacy in your relationship. Taking the time to simply kiss, cuddle and enjoy physical closeness can be very powerful. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">It is also important to acknowledge the impact of endometriosis on fertility and the threat of infertility. Infertility is physically and emotionally draining and can also really affect a woman’s self-perception of femininity and worth. Endometriosis is a leading cause of female infertility, and yet in 2014, the primary treatment is still hormonal castration.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Once those who wish to, accomplish the hurdle of motherhood, endometriosis and its symptoms such as pain and fatigue can impact the type of mother a woman wants or desires to be. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Some women are unable to work. Some find themselves facing thousands of dollars’ worth of surgical or fertility bills. The financial impact of having endometriosis can be an overwhelming burden and trigger for stress which in turn is a trigger for pain.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Compounded with all the ‘unknowns’ of the disease, you can see how a woman may feel a lack of control. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">For family and friends, the disease is hard to fathom and conceptualise because most of the time, we just don’t look sick. How can you see pain? How can you see fatigue? I guarantee that most women with endometriosis wished, at some stage, that they looked the part. But beyond the often-unimpressive signs such as scars, we carry on the outside, tonight you will hear; our insides tell a very different story.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Our symptoms are not imagined, created for convenience or to excuse behaviour. They are real. Women need to be taken seriously, have their concerns addressed and have their symptoms treated appropriately.</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">Endometriosis is a poorly understood, often inadequately managed and life-long condition with no cure. But is not all doom and gloom. Endometriosis has brought me some positive experiences and taught me some important lessons. It has taught me that my journey is individual. That I need to be my biggest advocate and the change I wish to see with this disease. That asking for help or taking time out are not signs of weakness, but absolutely necessary. It has taught me that I need to educate others who are ignorant of this disease. It has taught me to be more empathetic for the journey of others. And perhaps most importantly it has taught me resilience, to fall down seven times and to get up eight. </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">More recently it has taught me of the need for support for family, friends and partners of women with this disease, something we are still working on and why it is so important and heart-warming there are so many of you here tonight . </span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">~</span></span><span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;"><br /></span></span><br />
<span style="font-family: Cambria;"><span style="line-height: 32px; white-space: pre-wrap;">The Canberra Endometriosis Network is a shoulder to cry on, a sister to commiserate with and a platform to help see the bigger picture. We are 120 women with one goal, to help each other in the daily journey of living with the impacts of endometriosis.</span></span></div>
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<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 16px; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 2;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 16px; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 2;"><i>No part of this speech can be used or reproduced without permission. Permission can be obtained by emailing <a href="mailto:canberraendometriosisnetwork@gmail.com">canberraendometriosisnetwork@gmail.com</a>. Feel free to share and pin this post though, as the more people who read Katie's words, the better! Thank you to <a href="http://changefocusmedia.com.au/">Change Focus Media</a> for volunteering their time to film the speeches on the night. Because of their gracious help, a youtube link to the speech will be put here as soon as it is available.</i></span></span></div>
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Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com1tag:blogger.com,1999:blog-4592914674512042286.post-36150413437442449212014-08-22T12:46:00.002+01:002014-08-22T12:51:22.659+01:00New blog title and 11 weeks post opIt's been 11 weeks today since my op, and I have much to report. Recovery has been as expected, long but steadily improving, with an unexpected house move in the middle (at 4 weeks post op) making the whole thing just that little bit harder. I will admit that I ended up in a puddle of tears a few times due to exhaustion. Pro tip: Don't move house 4 weeks after having major abdominal surgery. Just don't.<br />
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I'm also 3 weeks into <a href="http://qlaira.org/">Qlaira </a>pack number 3, and the last few days have seen me spotting and cramping which is quite disappointing. Up until now being on Qlaira has been a breeze and I really thought I had found my miracle pill. No weight gain, no breast tenderness, no migraines, my moods have even been <i>more</i> stable on the pill. Who knew? Here's to hoping that this is just a bump in the road.<br />
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You also may have noticed that I have changed the title of my blog. I no longer felt like the title fit with me (particularly as I feel I have outgrown the word "girl") so I've picked something that I felt fits better with what I share on this blog. I am learning to live with a chronic condition, and I want to learn to do that with joy and light. Two and a half years after my <a href="http://vintagelib.blogspot.com.au/2012/11/day-2-let-it-go.html">diagnosis</a>, I am still learning to cope with it, over and over. every. single. day. I was also a little inspired in the makeover by my friend's blog makeover over at <a href="http://www.thesweetsurrenderblog.com/2014/08/and-with-click-of-button-shes-back.html">The Sweet Surrender</a>.<br />
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I am leaving Canberra in three weeks, and heading to England in four weeks to start my Masters at Durham University. I'm hoping that I will be able to find time to blog before and during that adventure as I have a lot to say, I just need to get it down on (e-)paper. I'm also interested in comparing the how the medical system in the UK compares in its treatment of endometriosis to Australia. I have not heard good things. I am really excited about getting involved with <a href="http://endometriosis-uk.org/">Endometriosis UK</a> as I have been watching them from the other side of the world for quite a while now and I am very impressed by the work they do. I have also found volunteering for the <a href="https://www.facebook.com/EndometriosisCanberra?fref=ts">Canberra Endometriosis Network</a> (co-founded by me and another woman with endometriosis) extremely rewarding and a light in sometimes dark days, so I'm excited that there may be a similar group in the UK for me to get involved in.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-46889962632261094352014-06-26T08:30:00.000+01:002014-06-26T08:30:01.605+01:00Yoga for Endometriosis Classes<div class="separator" style="clear: both; text-align: center;">
The last Yoga for
Endometriosis term until spring finished up last week, so I thought I'd share
some photos of the last session I was able to attend. Our lovely yogi, Martha,
designed the classes specifically for women with endometriosis and pelvic pain.
As an endometriosis sufferer herself, she is always looking out for attendees
and is keenly aware of the limitations that endometriosis can place on the
body.<br />
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The sessions were divided up into three segments: movement,
meditation/relaxation, and "circle time". The movement section
included typical (gentle) yoga poses, as well as some movements that people
would usually see four year olds doing in preschool that felt a bit silly at
first (e.g. swinging your arms and legs around, lightly tapping your body all
over.) However, after I stopped being self-conscious I found that doing these
movements helped remove tension that is held in the body.</div>
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The
meditation/relaxation time consisted of us lying on our backs in savasana,
covered with blankets and lavender-scented eye pillows while Martha talked
through some restful imagery. Most of us usually ended up falling asleep during
this part of the class as it was so relaxing!</div>
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The "circle time" part
of the class consisted of us grabbing a cup of tea and sitting in a circle to
share on the topic of the week. We would pass around a "speaking
stick" and while the holder was holding the stick, no one else was allowed
to interrupt. Topics would range from where we draw our support to how we take
time out for ourselves. It usually had a positive energy to it, giving support
to each other and looking for ways to be grateful for what we have and ways to
improve our quality of life. I was very sceptical about having a “speaking
stick” and “circle time” at first, but when discussing highly emotional topics
like living with endometriosis, these techniques are very helpful in making a
person feel safe and supported. Many tears of gratitude and frustration were
shed in this circle, and there was a feeling that there was no shame in showing
these emotions, even in front of people that you had only met an hour earlier.</div>
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If you are trying to
start a support group in your area, I highly recommend finding a yoga teacher
(or similar) to host classes as it was through these classes (along with having
a heavily monitored facebook page) that we were able to kick start the group
and gain the most members. As Martha volunteered her time, we only paid $5 per
class each to pay for the room rental (a hall in a local church.)</div>
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I very much looked
forward to these classes and am sad that I will have to wait more than a year
to attend another one. They were the highlight of my week, a cocoon that I
emerged from feeling rested and revived.</div>
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<br />Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-22014448316177103442014-06-25T15:11:00.000+01:002014-06-25T15:20:46.233+01:00Thankful Thursday: Endometriosis Edition<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-SgMEr55BJEE/U6qeZLjtu3I/AAAAAAAABdU/dW3C9PS-Ln8/s1600/IMG_7157.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-SgMEr55BJEE/U6qeZLjtu3I/AAAAAAAABdU/dW3C9PS-Ln8/s1600/IMG_7157.jpg" height="640" width="480" /></a></div>
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I had my third day back at work yesterday, a bit over two and a half weeks post-op. I've been getting progressively more pain each day at work (probably exacerbated by sitting all day), and it would be easy to be really negative, particularly as at the moment I am not really doing anything but work and rest and sleep, because if I don't, my body will fail. But for some reason, I'm feeling really positive. I've got a lot of changes going on in my life right now - a surprise house move in the next couple of weeks, getting everything together for my year in the UK, changing roles at work, missing my friends and family in Adelaide and some Canberrans that have taken off for awhile, but I'm rolling with the punches. It's great. It's exciting!</div>
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Endometriosis has given me lots of blessings in disguises, along with all of the curveballs.</div>
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I'm thankful for finding joy and meaning in the quiet time, and not needing to be doing something every second of the day.</div>
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I'm thankful for the resilience that endometriosis has given me.</div>
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I'm thankful for the people that endometriosis has linked me up with. Up until May 2012, I didn't know anyone that had the same health problems that I did, now I am part of an (almost) hundred strong network in Canberra and have met some amazing and inspiring women that I probably wouldn't have crossed paths with otherwise.</div>
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I am thankful for the perspective that having a chronic illness gives me. Since sharing my story, I have had many people share their stories about difficulties in their life with me, and it's made me realise that everyone has problems in their life, and life is a lot easier if you are gentle and understanding with people.</div>
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I'm thankful for how endometriosis has made me make myself a priority, so that I can better help others. Before I was diagnosed, I used to say yes to everything and then crash and let people down. Now I can pace myself better (because I was forced to learn) and know that if I take care of myself first, I won't be a burden to others and will be able to look out for others more. (Note: still guilty of not doing this sometimes.)</div>
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I am thankful that I no longer feel guilty for not being able to do everything.</div>
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I am thankful that endometriosis has made me much less of a jealous person than I used to be. It's quite rare for me to get jealous now, and it used to be a major part of my life.</div>
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I'm thankful for the peace that I feel about the future, even though there are so many unknowns. Endometriosis is a disease where you really don't know what is going to happen in the future. I could be infertile, I could need a hysterectomy, I could need a bowel resection, I could end up in pain so bad that I might have to give up my dream career completely. Of course all of these possible outcomes would result in grief, but I am learning to leave that grief in the future. It hasn't happened yet. It might not happen, and there are usually ways of making the best of a bad situation.</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-28807538883471742372014-06-13T14:27:00.002+01:002014-06-13T14:29:53.495+01:00Old and new thoughts on "cures" and triggers<i>The following post is a draft I wrote around this time last year after returning from a month-long whirlwind trip through France, Italy, England and South Korea. It is particularly relevant for me as I think about moving to the UK in three months (!!!!!!!!!) and having to cope with endometriosis and being on the Pill (with the potential for me to develop the depressive/anxious symptoms that seem to plague me while I am on such medications) while I am over there. It's also relevant seeing as I am in a bit of a shock with the results of the surgery that I just went through.</i><br />
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<i>If I was going to be completely honest, a fairly large percentage of me did think that this surgery would be the miracle cure for my endometriosis. What can I say, I am the eternal optimist[/delusional]! I didn't think that it would take all of the secondary effects away, the pelvic floor spasm or the neuropathic pain, but I did think that I would be able to work through that with drugs and pelvic floor physio and eventually be free of them. I thought that I would one day be free of this disease, and I thought that that day would be soon.</i><br />
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<i>I knew that Dr Evans is one of the best surgeons around for endometriosis, and I underestimated how bad my case was. I listened to <a href="http://endopaedia.info/prognosis1.html">some of the doctors online that like to claim that they can "cure" endometriosis </a>because their recurrence rate is so low after surgery. The doctor I linked to claims that 80% of patients re-operated on in a 5 year time span did not have any new endometriosis, hence he labels them cured. I feel that this is misleading (5 years is not long enough in my books), but also because he makes it seem like ALL endometriosis can be excised, when I am not sure that it can. I was in theatre for 3 hours with a very competent surgeon and she was not able to excise it all. My body would not have been able to handle it and it would have done more harm than good. She could try another surgery soon to get rid of the rest, but there is no guarantee that that would be the end of it for me, and with every surgery comes more risks.</i><br />
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<i>For doctors to advertise that some women can have their endometriosis cured, when we already live in a world that basically <u>denies that this chronic, disabling, life consuming, disease even exists</u>, it feels like it brings too much false hope to those who cannot be cured. So many women will never be cured of endometriosis, even with the best possible treatment, which so few actually have access to. It's so hard to not get your hopes up. It can be crushing. </i><br />
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<i>Oops... I just turned this post that was meant to be about one thing into a post about two things. Oh well. Enjoy reading my thoughts from last year...</i><br />
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So, I'm back!<br />
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The trip was: amazing, challenging, relaxing, stressful, inspiring, renewing, lonely and fun. All at the same time. I might sound a little bit like Taylor Swift talking about being that "miserable and magical" age of twenty-two, but that's really what it was like. There were many moments when I couldn't believe that this was actually my life (seeing A Midsummer Night's Dream at the Globe in the front row, going to a bathhouse and nudeing it up in Korea, reading a book on a picturesque Italian beach while being [unsuccessfully] hit on by an Italian guy who told me that I was breaking his heart by turning him down, sitting in a tiny top floor apartment in Avignon listening to Irish and French people make beautiful music together) and there were other times when I was so lonely, in pain (I ate a lot of bread in France... number one pain trigger) and down I just wanted to hide in my bed under the covers by myself (with a hot water bottle... in the middle of summer). After a six week or so high before my trip, I felt almost as low at points as last year.<br />
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That's what travel is like I guess - you're constantly being challenged to the core of who you are by foreign cultures and customs, and uncomfortable situations. Even the enjoyable situations can be tiring just because you throw yourself in to them so hard.<br />
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I also relearnt a bunch of lessons - how (besides hormones) exhaustion is my biggest trigger for depression (and pain!), followed by not being able to eat my regular diet (which really just contributes to the pain and subsequently, exhaustion from having to deal with that).<br />
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Note to self:<br />
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I have some of the best old friends, and some of the best new friends too. I can count on many more than two hands the number of people in the world that I feel completely at ease and comfortable with, and while I might not always remember that because they are dotted all over the world, sometimes all I need to do is pick up the phone and that will get me out of my lonely spiral.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-64366553239263222302014-06-12T06:43:00.000+01:002014-06-12T06:43:19.700+01:00Updated Endometriosis Journey<div class="separator" style="clear: both; text-align: center;">
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<i>Today I took the time to update my journey of living with endometriosis on my <a href="http://vintagelib.blogspot.com.au/p/about-me.html">About Me</a> page. I hadn't updated it in quite a long time (over a year), so it was well overdue. I've left a copy here if you can't be bothered clicking over. It is quite long, but endometriosis is a chronic illness that I have lived with since puberty and will have to face for the rest of my life, so there's no real good way to shorten it.</i></div>
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<span lang="EN-US">My endometriosis journey started shortly after my first period. I got that, in a library, at age 12. By 14, I was already in excruciating pain. My periods also never really completely settled and were still fairly irregular. I would often bleed through pads overnight and soaking my sheets in Napisan was a monthly occurrence.<o:p></o:p></span></div>
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<span lang="EN-US">Since my mother had terrible pain from periods when she was a teenager and used to vomit and faint, I counted myself lucky that mine didn’t seem to be as bad (I never vomited or fainted) and figured it was normal. So even though over the counter medications didn’t completely work (I would still be in pain even when I took anti-inflammatory medications like Naprogesic and Ponstan), I didn’t approach my doctor about it until I turned 19 (as far as I can remember).<o:p></o:p></span></div>
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<span lang="EN-US">I went on the Pill for a year and a half when I was 17 to clear up acne issues. I don’t remember that particularly helping my symptoms, but I definitely didn’t enjoy being on it. It made me terribly moody, made my breasts get even larger than they were already (I was self conscious of this and it was also painful) and generally didn’t make me feel like “myself”.<o:p></o:p></span></div>
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<span lang="EN-US">When I was 19 I went to the doctor because I had not had my period for two months, yet I was still getting terrible pelvic pain. He decided to send me off for an ultrasound, which was a strange experience as a 19 year old. My boyfriend at the time came with me since I was nervous, and I have to tell you, I felt odd that I was getting an ultrasound when I wasn’t pregnant. That ultrasound came back clear, so the doctor told me to just deal with the pain and sent me on my way. (Endometriosis cannot be ruled out through ultrasound.)<o:p></o:p></span></div>
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<span lang="EN-US">At 22, I went to see another doctor about it as I was still in pain and it was interfering with my life. She put me on another Pill (Yasmin) to try and manage it but again, it made me so depressed I would cry everyday so I came off it after 3 months. I remember one night waking up at 2 am when the FIFA World Cup was on, dragging myself out of bed and rocking back and forth in the fetal position on the couch while Dad tried to distract me with commentary on the soccer. Although I have never been in labour, I can tell you that the pain was contraction like and came in waves that time. Other times it would be a constant ache in my belly, or feel like someone had taken an egg-beater to my guts.<o:p></o:p></span></div>
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<span lang="EN-US">By 23 I was missing work on a regular basis – I had at least one day off work a month because of period pain, and would be in pain a week before my period. I also caught pretty much everything going around and tired really easily. A few times I got terrible back cramps where I couldn’t sit up. I knew that it was not normal after all. My friend had a laparoscopy to look for endometriosis and after this I decided to go to her doctor because he took her complaints seriously. So I went to that gynaecologist and he booked me in for surgery. I ended up having to wait 6 months to have my laparoscopy (I went through the public system).<o:p></o:p></span></div>
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<span lang="EN-US">In March 2012, I had my laparoscopy where I was diagnosed and some of the lesions were burnt with lasers as a way to try and get rid of them (diathermy). Before I went in, I talked to my surgeon (he was not the same doctor as my gynaecologist) and he questioned me and told that it was probably “just PMS”. This was pretty traumatic to go through, particularly when he claimed that they found what they expected to find (Stage III –moderate – endometriosis) when I came out of surgery. I also had a Mirena IUD inserted to treat the endometriosis. </span>I had the Mirena taken out in January 2013 due to it triggering anxiety and depression and I was not on any hormonal medication after that for that reason.</div>
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<span lang="EN-US">After that the surgery my symptoms lessened for awhile. I didn't have the excruciating labour-like pains as often, but I did have pain almost everyday. I felt the need to pee constantly and still had some pain before and during my period, even with the help of drugs, although it did not seem quite as bad as before. I went to a new gynaecologist in December 2012 to get help with my problems of urinary urgency and frequency, as they had worsened since the surgery. I told him that I was often having to get up more than once a night to go to the bathroom and that this was disrupting my sleep. It was so bad that sometimes I could not fall asleep at night due to the feeling that I needed to pee. He blew it off and said that if he had to get up in the middle of the night to go to the bathroom, then I should just deal with it. Like it was normal for a 24 year old. (I had also done the usual tricks and not drinking for a few hours before bedtime and restricting caffeine.) He prescribed me tranexamic acid to light my periods, which did help a lot, but I still had the urinary issues.</span><br /><br />So I decided to take things into my own hands and research all the things that I could change myself to help me with my symptoms. I read many scientific papers, books and blogs and decided to change my diet and slowly increase the amount of exercise that I did. I followed a loose version of the endo diet (no wheat/soy/caffeine/alcohol), being more strict with wheat and caffeine than with alcohol (although I still had alcohol sparingly) from April 2013. I trialled excluding dairy for awhile as I had read that it can help reduce the symptoms of endometriosis in some women, but did not find any significant difference and decided that a moderate dairy intake was healthy for me.<br /><br />Changing my diet and exercise worked wonders. For the first time in a long time I had a had energy and a clear mind. I had a stronger immune system and didn't get sick as often, if at all. Everything seemed to be improving and it seemed to be the fix for me. That was until December 2013 when things started turning sour again. The horrible period pains started coming back and my urinary symptoms the worst they had ever been. This trend continued and in March 2014 I went to see Dr Susan Evans at the Pelvic Pain SA clinic. She diagnosed me with a whole host of secondary conditions that stemmed from my long-term endometriosis pain. I had IBS (which had been managed well through diet changes), central sensitisation (neuropathic pain) and pelvic floor spasm, among others.<br /><br />Dr Susan Evans prescribed daily low-dose amitriptyline (Endep) for my neuropathic pain, and recommended that I go see a pelvic floor physiotherapist to deal with the pelvic floor spasm. She also suggested that at some point I have another surgery, this time the superior excisional method, as she suspected that the diathermy had not rid me of my endometriosis. I booked in for surgery in June 2014 (due to time constraints of going to the UK to do a Masters for a year in September) and started the low dose amitriptyline.<br /><br />The low dose amitriptyline coupled with seeing a pelvic floor physiotherapist changed my life. I no longer needed to get up in the middle of the night to go to the toilet. However, the pain before my periods was starting to creep in and I was still getting lower back pain. When I went in for excisional surgery on June 6, 2014, she also put botox in my sidewall muscles and gave me a pudendal nerve block.<br /><br />The results of this surgery were a shock to me. I was not expecting Dr Evans to find much different to the last surgery at all, as I thought my symptoms had been not as bad as they were before the last surgery. It turned out that I had an endometrioma in one of my ovaries that had attached itself to my abdominal wall and had leaked. I also had endometriosis in various areas of my pelvis including on my ureter, which she was able to remove. Unfortunately, she was not able to remove all of the leakage and endometriosis as it would has been too hard on my body (I was already in theatre for three hours as it was), but she was able to separate the ovary from the abdominal wall and drain the endometrioma.<br /><br />After this surgery Dr Evans advised me that my endometriosis was too aggressive for me not to be on hormonal medication to suppress it. She was worried that I would end up on a round about of surgeries and keep having to come back. So on June 7th, 2014, I started the Qlaira pill.</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com2tag:blogger.com,1999:blog-4592914674512042286.post-84899090294033618542014-06-11T06:37:00.000+01:002014-06-11T06:41:58.138+01:00My Adelaide favourites<div style="text-align: center;">
<i>While I've been on bedrest here in Adelaide after my surgery, I've been getting really excited about getting out and visiting my old favourites when I'm more mobile. I thought I'd write up a quick summary of my unmissables for anyone that might be planning a trip to Adelaide.</i></div>
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<a href="http://www.urbanspoon.com/r/336/1350563/restaurant/Rundle-St-Area/Vego-Loven-It-Adelaide">Vego & Love'n It</a> >>>> I've been going here for almost 10 years and I was introduced to it by my dad. It's an institution. So cheap, so healthy & so delicious. Get the Thai Burger, and unless you're a big eater, get the half size. The Mango Smoothie is also delish. You won't regret it. (Warning - half the reason I love the Thai Burger is because of the copious amounts of sweet chilli sauce, coriander, avocado, tomato and shredded carrot that adorn it. If you don't like those delicious things, you probably won't like the Thai Burger.)<br />
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<a href="http://www.goodlifepizza.com/">Goodlife Modern Organic Pizza</a> >>>> Their Free Range Chicken Pizza with organic baby potatoes, garlic, rosemary and mild parmesan is to die for. So too is their Free Range Duck Pizza which I tried for the first time last night. All I can say is that I had their Free Range Chicken Pizza for the first time in three and a half years the other day and it was even better than my memories. SO GOOD. They do gluten free bases too. You can find them on O'Connell St in North Adelaide, Hutt St in the city and down by the beach at Glenelg. I love the earthy decor in the restaurants, or you can get take away (as you can see above.)<br />
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<a href="http://www.eforethel.com.au/">E for Ethel</a> >>>> This gem is a relative newbie on Melbourne Street in North Adelaide. It is run by a couple who combine a handmade shop with a cafe. I had a gluten free pumpkin wrap there for the first time last year and I was blown away by the fact that the gluten free wrap was actually tasty and malleable! After I finished it, the woman came to my table and apologised at how small the serving had been for the price, she said that they were new wraps that they weren't used to yet and she then gave me a discount on the wrap (she may have even given it to me for free, I can't remember), even though I had thoroughly enjoyed it, not complained and thought it was good value for money! They also allow you to have your tea or coffee with dairy, soy or almond milk, which was great for me last year when I was trying dairy and soy free. I won a $25 gift voucher in their lucky business card draw and I can't wait to use it later on during this trip when I am more mobile.<br />
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<a href="http://lecarpediem.com.au/">Le Carpe Diem Cafe Creperie</a> >>>> Run by actual French people, this cafe seems to be always open and always delicious. They have savoury and sweet crepes, and the savoury crepes are made out of buckwheat, making them gluten free. You can request the sweet options on the buckwheat base, so after a year of not being able to order pancakes out, I can finally have them again!<br />
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<a href="http://www.adelaidecentralmarket.com.au/">The Central Markets</a> >>>> Do not miss the <a href="http://www.smellycheese.com.au/index.cfm?objectid=66A14675-1372-1763-B0E9443F2FB3B17B">Smelly Cheese Shop</a>, <a href="http://www.adelaidecentralmarket.com.au/traders/mushroom-mans-mushroom-shop/">Mushroom Man's Mushroom Shop</a>, or <a href="http://www.adelaidecentralmarket.com.au/traders/mushroom-mans-mushroom-shop/">Something Wild </a>(if you like your meats of the more unusual variety). Also drop in at the <a href="https://tbar.com.au/">T Bar</a> - my favourite tea shop before I discovered <a href="http://www.adoretea.com.au/cart.html">Adore Tea</a> in Canberra. The Asian food court is also full of cheap, yummy, meals.<br />
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Pub-wise I loved the University of Adelaide <a href="http://www.adelaide.edu.au/unibar/">Unibar</a> and the <a href="http://www.urbanspoon.com/r/336/1350205/restaurant/Rundle-St-Area/Exeter-Hotel-Adelaide">Exeter </a>(in the city) as a student, and now, in an odd twist of events, my brother and sister work there. However, if you are not a student, and don't have the nostalgic love for them that I have, you'll probably find them rather grotty.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com1tag:blogger.com,1999:blog-4592914674512042286.post-41285536041591020282014-06-10T13:19:00.002+01:002014-06-10T13:39:03.302+01:00Endometriosis Afternoon Tea<div class="separator" style="clear: both; text-align: center;">
On Sunday the 1st June, we hosted a fund-and-awareness-raising afternoon tea for endometriosis research at my mum's house in Adelaide. My sister thought up the idea a few months back when I told her I would be coming back to Adelaide to have my second surgery. We ended up raising over $1000 for endometriosis research and I was blown away by the amount of support. The research we supported was that done by <a href="http://www.adelaide.edu.au/directory/louise.hull">Dr Louise Hull </a>at the University of Adelaide. She is looking at a plasma microRNA based diagnostic test, which would mean that patients could get confirmation of their endometriosis without needing a expensive, painful, inconvenient and risky surgery.</div>
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I made a little speech (along with my sister) and unexpectedly got a little emotional halfway through it. I was talking about how many women fight for a long time to get diagnosed. If you've been reading this blog for awhile, you know that I had symptoms of endometriosis from the age of 12, but was only diagnosed at 23. I got emotional because I had never considered a world where there would a non-invasive diagnostic test to screen patients if they showed characteristic symptoms. A world where women hopefully wouldn't get told for years and years that it was all in their head. If we can achieve that in my lifetime, I will be so happy.</div>
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Most photos thanks to my bestie Lisa from <a href="http://herthriftychallenge.blogspot.com.au/">The Thrifty Challenge</a>, some from my iPhone.</div>
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PS In case you were wondering, my outfit details are:<br />Denim jacket: SAG, op shop (USA)<br />Dress: <a href="http://www.retrostar.com.au/">Retrostar Vintage Clothing</a>, Melbourne<br />Cowboy boots: Wrangler (from when they were still made in Texas), gift from a friend who got them from an estate sale</div>
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Stockings: <a href="http://www.columbine.co.nz/">Columbine</a>, Teal Soft Opaques (50 Denier)<br />Glasses: Gok Wan for Specsavers</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-38827703560946518692014-06-09T08:10:00.000+01:002014-06-10T13:23:49.590+01:003 Days Post Op<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-OSAc5unwosM/U5VcrSg4ffI/AAAAAAAABYU/2CV-1uu1VdI/s1600/IMG_7444.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-OSAc5unwosM/U5VcrSg4ffI/AAAAAAAABYU/2CV-1uu1VdI/s1600/IMG_7444.jpg" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me surrounded by the beautiful flowers that my friends have sent. I feel so incredibly lucky.</td></tr>
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Achievements unlocked:<br />
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<li>walking up and down the flight of stairs in my mum's house without help (but holding on to a pillow to keep my insides held together)</li>
<li>having my second shower since surgery this afternoon and staying in long enough to wash my hair</li>
<li>sleeping for 15 hours last night and 13 the night before</li>
<li>staying endone free since midday Saturday.</li>
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So I'm feeling pretty good about myself at the moment and confident in my recovery. I'm still pretty much bed bound but I'm really happy that I've managed to stay endone free. Will keep you updated as the days go on.</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-17769053300195716562014-06-08T04:20:00.004+01:002014-06-10T13:24:32.193+01:0048 hours post-op<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-G-DqBgh1IC8/U5PS4rirJrI/AAAAAAAABXQ/8-7_Cy07oP0/s1600/10431538_10202904396143152_3594186326254553185_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-G-DqBgh1IC8/U5PS4rirJrI/AAAAAAAABXQ/8-7_Cy07oP0/s1600/10431538_10202904396143152_3594186326254553185_n.jpg" height="640" width="480" /></a></div>
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First off, I'd like to say that the bowel prep was nowhere near as bad as I had anticipated. I thought it was going to be like having gastro (think horrible cramping), but it honestly was just inconvenient, and as long as you follow the tips I found on <a href="http://mysecretvanillalife.blogspot.com.au/2012/02/colonoscopy-prep-it-doesnt-have-to-be.html">this blog </a>(like I did) it should be a pain free experience for you. Oh yeh, and if you can get your hands on pawpaw ointment instead of vaseline, do that. You won't regret it. I drank ridiculous amounts of hydralite and iced tea, and the picolax chilled didn't taste bad at all.<div>
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So on to the op... I ended up being in theatre for 3 hours and they found so much more than I was anticipating. I had a large endometrioma on my right ovary which was fused to my abdominal wall and had leaked (they were able to clean up a lot of it but not all as my body would not have been able to cope). There was also endo on the outside of my left ovary and on my ureter and in a few other places. Honestly, I was so shocked that I had an endometrioma it was hard for me to take in the rest. I'll update more on where they actually find it once I have a look at the surgery photos and notes again. </div>
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They also did a pudendal nerve block which I am so thankful for. I think that it has reduced the amount of pain I am in by a lot, even if it means that at the moment I don't really know for sure when I need to urinate. However, as long as I just go every couple of hours, I'm ok (I eventually feel a lot of pressure and some pain when my bladder is full anyway).</div>
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They also botox-ed my side wall muscles and my pelvic floor muscles, which make it a little harder to urinate again, but if I take my time it's ok. It's SOO much better than feeling that urgency every five seconds. I also have a belly full of fluid to keep all my bits from sticking to each other while they heal. It is a very odd feeling and feels a bit like what I imagine being pregnant would feel like, but who knows, I've never been pregnant! It's like I have a sack in my belly that moves around of it's own free will and adds a big feeling of pressure when I stand up.</div>
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My surgeon said that because the endo is so aggressive she wanted me to start on hormone drugs straight away to try and suppress more growth of endo. So I've started on Qlaira yesterday - it is a new kind of pill that apparently people who are sensitive to hormones (like me) have better experiences on. We'll see how it goes. If that doesn't work I may have to try Zoladex (or similar) or go back on the Mirena.</div>
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So now I'm on what feels like a thousand drugs - regular Panadol (painkiller, every 4-6 hours), Ponstan (anti-inflammatory, twice daily), Endep (for neuropathic pain, once a day), Qlaira (for suppresion of endo growth, once a day) and Endone (narcotic, for emergencies - I last took it yesterday afternoon and I hope to get through the rest of recovery without it, we'll see). If I take Endone I have to couple it with Coloxyl (laxative) which seems to work well to negate that effect. I'm also going to start taking krill oil again.</div>
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Good news is that my uterus and fallopian tubes look healthy. So that's a plus.</div>
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I'll keep you updated. Sorry that this is a bit of a brain dump - I try to make my posts as accessible as possible to people without a deep understanding of endometriosis but at the moment I am just too overwhelmed and just need to get it all down on paper.</div>
Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com2tag:blogger.com,1999:blog-4592914674512042286.post-81392675430711736092014-06-03T14:48:00.000+01:002018-04-03T11:57:06.604+01:00Pre-bowel prep jittersI start my bowel prep tomorrow. Surgery is on Friday, so that day before I am only able to eat "clear" liquids and tomorrow (two days before) I am only allowed to eat (according to the sheet given to me by my doctor): plain white toast (obviously out due to wheat aggravating my endo), boiled pumpkin, boiled potato, white fish, and plain jelly. I have prepared for this by boiling some potato and pumpkin tonight and mashing it (with no butter or milk - salt and pepper is permitted) and making my own jelly out of plain gelatine (smells so rank!) with sugar and lemonlime cordial added. The idea of having to smell raw fish on an empty stomach makes me nauseous so I've given the white fish a skip too. I've also raided the cupboard for hydralite and gastrolyte, and bought a big pack of baby wipes.<br />
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I also found <a href="http://mysecretvanillalife.blogspot.com.au/2012/02/colonoscopy-prep-it-doesnt-have-to-be.html">this</a> article (now found <a href="https://web.archive.org/web/20170324164522/http://mysecretvanillalife.com/colonoscopy-prep-it-doesnt-have-to-be-a-pain-in-the-ass/" target="_blank">here</a>) about bowel preps before a colonoscopy and it's made me feel a lot better about the whole process - since this is the first time I have had to go through this as the last surgeon did not request it.<br />
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I also have to get up at 5 am tomorrow to drive my boyfriend and mother to the airport. Potentially not the best way to start two days of food restriction, but oh well. Let the bowel prep begin.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0tag:blogger.com,1999:blog-4592914674512042286.post-64896267531922855222014-05-21T22:00:00.000+01:002014-06-10T13:27:29.513+01:00Another surgeryIt's been a while since I posted on here and a lot has happened. My pain significantly increased from December 2013, particularly with some quite severe bladder episodes in January 2014 (imagine a UTI that can't be cured by antibiotics). I ended up seeing a new gyne (<a href="http://www.drsusanevans.com.au/">Dr Susan Evans</a>) and I have an excisional laparoscopy booked with her in less than two and a half weeks. She recommended that I try taking low-dose <a href="http://www.drsusanevans.com.au/amitriptyline-and-how-to-use-it/">amitriptyline </a>(Endep) to treat neuropathic pain. It has been fantastic and I cannot recommend it enough. It does make getting out of bed in the morning slightly harder but I have to say that it is a lot easier to get to sleep at night when I don't have to constantly get up to go to the bathroom!<br />
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For the surgery I have to stop taking all anti-inflammatories two weeks before. I'm a little scared about this as my period is due day one of not being allowed to use anti-inflammatories. We'll see how it goes. Getting a massage the night before to try and help the muscle aspect. I will also be stopping taking krill oil, amitriptyline and agomelatine (Valdoxan) in the same time span. It'll be interesting to be on no drugs whatsoever for the first time in a long time, particularly having a period on no drugs. It'll be interesting to see just how bad it is without the painkillers (although I will be able to take paracetamol). I reckon it will convince me once and for all that I'm making the right decision about another surgery.<br />
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I've also been going to see a pelvic floor physiotherapist (<a href="http://www.maureenbailey.com.au/">Dr Maureen Bailey</a>) to deal with <a href="http://www.drsusanevans.com.au/physiotherapy-for-pelvic-pain-with-dr-patricia-neumann-and-ms-sonia-scharfbillig/">pelvic floor spasm</a> (the result of many years of pain causing my pelvic floor muscles to be constantly tight). This has also significantly improved my back pain and urinary problems. Last week she loosened some of my back muscles and I walked out of her office feeling like I was on a cloud. I never knew how much pain I had in my lower back until she fixed it!<br />
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I wish I'd gone to Dr Evans sooner after the last gyne told me that I just had to deal with it. Who knew that there were some really simple solutions out there that greatly improve my quality of life. I'm glad I've got Dr Evans on my team :).<br />
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In other good news, the <a href="https://www.facebook.com/EndometriosisCanberra">Canberra Endometriosis Network </a>has totally taken off! We currently have 81 members (!!!!!), a dedicated Yoga for Endometriosis session weekly and have met up three times.Libhttp://www.blogger.com/profile/02111898320049663116noreply@blogger.com0