A plea to doctors everywhere

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 amazing gynecologist 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.

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.

So, what happened?

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.

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.

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.

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).

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.

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)?

Have you ever been bullied by a doctor?

Thankful Thursday: Endometriosis Edition

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!

Endometriosis has given me lots of blessings in disguises, along with all of the curveballs.

I'm thankful for finding joy and meaning in the quiet time, and not needing to be doing something every second of the day.

I'm thankful for the resilience that endometriosis has given me.

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.

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.

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.)

I am thankful that I no longer feel guilty for not being able to do everything.

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.

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.

Old and new thoughts on "cures" and triggers

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.

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 knew that Dr Evans is one of the best surgeons around for endometriosis, and I underestimated how bad my case was. I listened to some of the doctors online that like to claim that they can "cure" endometriosis 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.

For doctors to advertise that some women can have their endometriosis cured, when we already live in a world that basically denies that this chronic, disabling, life consuming, disease even exists, 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. 

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...

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So, I'm back!

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.

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.

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).


Note to self:

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.

Updated Endometriosis Journey

Today I took the time to update my journey of living with endometriosis on my About Me 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.

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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.

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).

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”.

Endometriosis Afternoon Tea

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 Dr Louise Hull 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.

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.

Most photos thanks to my bestie Lisa from The Thrifty Challenge, some from my iPhone.

PS In case you were wondering, my outfit details are:
Denim jacket: SAG, op shop (USA)
Dress: Retrostar Vintage Clothing, Melbourne
Cowboy boots: Wrangler (from when they were still made in Texas), gift from a friend who got them from an estate sale

Stockings: Columbine, Teal Soft Opaques (50 Denier)
Glasses: Gok Wan for Specsavers

3 Days Post Op

Me surrounded by the beautiful flowers that my friends have sent. I feel so incredibly lucky.

Achievements unlocked:

• 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)
• having my second shower since surgery this afternoon and staying in long enough to wash my hair
• sleeping for 15 hours last night and 13 the night before
• staying endone free since midday Saturday.

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.

48 hours post-op

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 this blog (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.

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. 

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).

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.

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.

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.

Good news is that my uterus and fallopian tubes look healthy. So that's a plus.

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.

Pre-bowel prep jitters

I 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.

I also found this article (now found here) 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.

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.

Another surgery

It'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 (Dr Susan Evans) 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 amitriptyline (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!

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.

I've also been going to see a pelvic floor physiotherapist (Dr Maureen Bailey) to deal with pelvic floor spasm (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!

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 :).

In other good news, the Canberra Endometriosis Network has totally taken off! We currently have 81 members (!!!!!), a dedicated Yoga for Endometriosis session weekly and have met up three times.

It gets better

This week, this PostSecret really struck me. I remember reading things like this when I was in deep in the bowels of my depression, when the endometriosis treatment wasn't working either and I just wanted to give up. I remember thinking that whoever wrote these things didn't know what they were talking about, that things couldn't possibly get better when you felt that wretched with no one to help you. I remember the light of the end of the tunnel growing dim and eventually going out. I honestly didn't believe that things were ever going to get better. I thought I was going to be in that much pain and that unhappy for the rest of my life. I saw it getting worse too. I couldn't get myself out of that mindset. It is so difficult to see the light when you are in that dark place.

Part of the reason I have been so happy for the last couple of months is because of the lack of pain and fatigue I have had. The other day I got my first taste of sharp pain in about six or so weeks. It hit me when I was walking down the stairs at work and I had to stop and hunch over because it felt like someone was pulling a thread through my abdomen and tightening it, not allowing me to stand up straight from the sharp pain. Having six weeks pretty much pain free put me under the illusion that I'd mastered my illness. I know that I need to keep in mind that my endometriosis is still there, even when I have the good weeks, but it still comes as a surprise when it happens, because it can happen anytime, anywhere.

To be honest, I am a little scared about this European holiday. I wonder if I am taking on more than my body can handle. I worry about the fact that my period is due to hit exactly when I'm going to be on a long haul flight between London and Seoul, with no access to a hot water bottle, so I'm going to have to resort to some powerful drugs that I haven't used in about a year if the pain gets too bad. I'm hoping that I have another pain free period (well, with my regular drugs) like my last one, but I need to be prepared as well.

Even if it turns out that this holiday is too much for my body, I know that I have been through this before. I have an excellent psychologist, even if my GP is on maternity leave, so I have that support. I've also gotten to the stage (thanks to my psychologist and GP for believing in me and coaching me) that I now believe that if I do get burnt out, I will be able to coach myself back out of the hole. I don't want to spend my youth having to avoid taking chances and having experiences just because I'm worried that they will backfire and I won't be able to cope.

It's been a slow change. I've been seeing my psychologist for about nine months, I've been on anti-depressants for seven, and I've been Mirena-free for five. These were all steps I had to take to get here. It's cumulative and can sometimes seem glacial in speed. But it pays off eventually.

It's a [bloody] miracle!

I apologise for the pun in the title, but I just had to use it!

Warning: if you can't tell by the title, this post is about bloody details of my period, so if you don't want to know, then skip it. Can't say I didn't warn you.

Yesterday was the first day of my period. And there was no sign at all of my usual excruciating cramps.

For women without endo, this is probably no big deal, but for me it's a freaking miracle.

I can't remember the last time I've had a pretty much pain-free day one of my period. If it has happened to me before, it would have been many, many, years ago.  My last period started in a similar way, but "the dream" came crashing down 20 minutes later when I found myself writing in bed in pain and calling my parents and best friend to distract me while the drugs kicked in. They ended up taking quite a long time to kick in and only partially helped when they did (enough to make me able to stop doing labour-breathing and hobble to the kitchen and make a hot water bottle).

So this time I didn't take any chances, at the first sign of blood I doped myself up on Ponstan and Panadol (and Tranexamic acid - seriously, that stuff saves me so much money in feminine hygiene products and bleach!), and this time, the drugs actually worked! Nothing but a little rumble that came and went and was easily fixed by a heat pack (although I could definitely tell when I needed to take my next dose of drugs as they wore off). I went to work with the biggest smile on my face. My co-workers asked me what I was so happy about, and I explained that what was happening was basically a miracle. They said to me that they had never seen a woman on the first day of her period so happy before. One of my co-workers even gave me a high-five. (We may overshare in our office just a little bit...)

I still was pretty bloated and uncomfortable with the usual weird guts (hello stretchy tights and loose dresses!), but seriously, I just cannot believe that this month I didn't have to writhe around in pain (let's hope it doesn't hit today!) And I haven't had the crazy back spasms this month yet!!!!!

So I'm trying to figure out what it is that I'm doing that may have produced this miracle. Maybe it's just a complete fluke, but there are a few things that I've been doing differently this month. I've cut down on wheat a lot. Not completely, as I suck and have no self control, but I can count the number of times I have had wheat this month on one hand, and it's never been a huge amount (apart from when I had pancakes... that didn't end well). I also had a massage on Wednesday which probably helped. I've been doing fairly regular exercise, although not as much as I was doing in January and February (and it didn't seem to make a difference then). I've had pretty much no dairy at all, except for lactose free milk. So, I'm going to try and be consistent and keep doing the things I'm doing to see if next month I can avoid the uterus gremlins again. (Good luck to me avoiding wheat and dairy in France and Italy... hmmm.)

I know that technically, I used lots of drugs and so it was not really a "pain free" period, but the fact that the drugs actually pretty much got rid of the pain is a huge improvement. Usually the drugs just stop me from sobbing in pain.

PS I'm not saying that minimising wheat/dairy is working for me, or works for everyone, I'm just so incredibly happy that it seems to have made a difference for me that I'm going to keep going.

Endometriosis and social media

I'm so thankful that I was diagnosed with endometriosis in the age of the internet and social media. It puts you as the patient in a much better position in terms of access to information about your condition and the power to make better informed decisions. It also unites sufferers in a way like never before. Now, when you're curled up in bed in pain, you can access other people in the exact same situation as you and find comfort in that. For chronic illness, something that can be quite isolating, social media makes everyone more connected.

As a social media user it can also be quite confusing. It's taken me a little while to find the blogs and groups that supported me and didn't leave me feeling worse than before. Some groups can make you feel belittled, or worse, hopeless, and it's important to find the groups that work for you. The following is a quick summary of the social media that I use the most in relation to endometriosis, in case people out there are looking for something to start from.

Facebook

Endometriosis Research Centre

I have liked this on Facebook and it comes up in my feed. It means that I am always up to date with all the latest research and articles about endometriosis. They also have a Diet & Nutrition Subgroup and a Fitness Subgroup which are worth joining. They are closed groups so you can feel safe knowing that they are moderated and not everyone can see what you write (good when you're talking about some of the more personal aspects of endometriosis). They are two of the more supportive diet and exercise related groups that I have found out there (when it comes to nutrition in particular, it is actually quite a minefield.)

Aust Endo

This started as a Yahoo email group which I am also part of, but has since evolved into a Facebook group (which I find easier to use). It's full of lovely Australian women with endometriosis who are supportive and very very active in posting at the moment. It again is a closed group which is useful when tampons and bowels are common topics of conversation that you probably don't want splashed all over your friends' Facebook feeds. Another good Australian based group is Endometriosis Australia discussion group. The great thing about these groups is that you can post whatever problem you have at the moment and you can bet that at least one person has gone through what you are going through. This was particularly helpful to me when I was going through depression and anxiety related to the Mirena and my doctor was denying that it could be related.

Blogs

I've written previously about my favourite endo blogs, but you can also check out the side bar for other endo blogs I follow.

Pinterest

I've found a few good endometriosis boards on Pinterest - some because they featured me (so flattering that people think my blog is good enough to pin!). My favourite is here. I also follow these ones here, here and here. Pinterest is one of the ways that I find new endo blogs, and I love that it is generally a really positive environment. It's also a great source of endo-friendly recipes, although you never do know how well it will turn out with Pinterest - just have to try and see! (My Pinterest account is http://pinterest.com/vintagelib/)

Twitter & Instagram

Personally I don't use Twitter and Instagram very much for endo related things. I like to keep my Instagram to a limited number of friends that I can share personal things with, and I find it difficult to keep to the 140 characters that Twitter requires. However, I know that many women with endo have found Twitter to be an incredible resource, so use the hashtags #endo or #endosisters and see what you can find!

And a final reminder - be smart with social media. If something doesn't sit right with you, then trust your instinct. Don't get sucked in when people tell you that they can cure endo (particularly if they want you to pay a price for it over the internet). These forums are filled with ordinary women, not doctors, so it's always good to find a good doctor if you can. Take this information that you've learnt and discuss it with them. I don't believe that endometriosis treatment ends with the medical profession though, as clearly they haven't found a cure yet. So it's worth checking out what works for other people to see if it works for you.

PS If you live in the UK and work, check out TULIP. It's the Trade Union for Long-Term Illness and Pain, started recently by a woman with endometriosis. I wish we had something like this in Australia!

Endometriosis & Relationships

I started this post back around Valentine's Day when lovey dovey posts were filling my bloglovin feed [speaking of which... Google Reader is closing down if you couldn't tell by the thousands of other posts on it recently - follow me here on bloglovin instead]. I forgot about it for awhile, until the Blogging for Endometriosis Awareness social impacts theme, where I then edited it again, but then never got round to finishing it AGAIN. I decided to stop procrastinating and just publish it now, so here is my perspective on living, and dating, with endometriosis.

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I am currently single. I have been "officially" single for awhile now. I have not seriously dated a new guy since I was diagnosed over a year ago. In the blogosphere, and even within the endo circles I know outside of the internet, that seems to be quite rare. I don't know any other single women with endometriosis. I know I can't be the only one out there, but sometimes it feels like I am! (If you are single with endo - please speak up!)

Despite the fact that being single removes some concerns that come with endometriosis (e.g. infertility, pain with sex/intimacy issues), it comes with its own challenges. No one to comfort you or give you a back massage when you're not feeling well, no default person to drive you to surgeries or the doctor, no one to make you a heat pack when you need one (thankfully my housemates step in for this one). Sometimes the fatigue can make it difficult to get the energy to get out there and meet new people, which definitely limits your chances of meeting a potential partner. You're probably going to have to explain to some guy that you may not know very well what is wrong with you quite early on. (Having unexpected back spasms so bad that you can't move and end up sobbing in pain forces that topic into conversation pretty quickly.) It also isn't too helpful when your doctor tells you that you should get pregnant in order to "treat" your condition (uh, HELLO, where am I supposed to procure a father? Also, no.) It also doesn't help too much when people tell you that you should settle down already because you're running out of time since endometriosis makes your biological clock tick that little bit louder.

No guy I have been on dates with since my diagnosis can claim ignorance to my condition. Since it affects many areas of my life, I tend to talk about it a lot, and so naturally it will come up in conversation fairly early with guys. I'm very open about all aspects of endometriosis, and a lot of the guys that I have brought it up with have been quite interested to hear how common it is. Some people might think that bringing it up so early is a bad idea and will scare guys off, but I think that if they are scared off by me merely mentioning it, then they probably can't handle actually living with it and we're both better off knowing that sooner rather than later. (The ones that think periods are gross are ruled out pretty quickly too.)

I've had supportive boyfriends and I've had less-than-supportive boyfriends. (Note - these stories are all pre-diagnosis.) One of my boyfriends thought that I was faking the cramps as a way to con him into spending more time with him. Safe to say that that relationship is now over.

However, he was not the only one.

I have had very decent guys turn into less-than-desirables when I've been in pain/dizzy. One time I got extremely dizzy and nauseous with cramps when out with a boyfriend. We were about to attend an event that he really wanted to go to (I did too). However, when I get these dizzy spells, the only solution for me is to go home and sleep for a few hours. I asked him to drive me the ten minute drive home before he went in to the event as I was worried about having a car accident if I drove. He was not happy with this idea and asked me to have a nap in the back of the freezing cold car while he went off and attended the event for a few hours. I understand that it was disappointing for him to have to miss part of the event, but I can tell you that no one is more disappointed than me when I have to miss out on entire events because of my health. (He did end up giving me a lift home and then returning to the event - he is a nice guy.)

I am not telling these stories to have a whinge, or to point the finger. I am telling them to explain the extra challenges that come with having endometriosis. The unpredictability and frustration of having endometriosis is difficult enough for me to cope with in my own head, I can't blame guys for not understanding it or being sympathetic straight away when they have not been raised to treat it seriously.

Dating a woman with endometriosis will most definitely come with sacrifices, but I think that dating anyone will come with sacrifices. The sacrifice that comes with dating a woman with endometriosis is more in your face and uncertain now, but I think it also has the potential to build a good foundation for a strong relationship by facing trials early.

As for being single with endometriosis, I believe that it has made me a stronger person. I know that I can face this without a partner and I hope that that knowledge will make me a better partner and patient in the future.

Depression, anxiety and endometriosis

courtesy of Hash

Lately I have been feeling so good (can you tell from all these happy posts???). I've still ended up crying in a heap more than a few times in the last few weeks, but I finally feel like my peppy self again.

This is a huge contrast to last year. Last year I was done. Completely sucked dry of all my life energy. I had absolutely zero self confidence and I cried every day. The depression and anxiety showed itself different ways - sometimes it manifested through insomnia and waking up with panic attacks, sometimes it was a mood so low that I had to leave work and sit and cry in the car for a couple of hours so as to not openly weep in front of everyone. For no reason at all. Sometimes I felt numb. Nothing at all. Sometimes I ignored calls, emails and text messages from those I loved the most because I just couldn't handle it. The thing that finally got me to the doctor was the insomnia, and the thing that finally got me to try anti-depressants was the crying every day (and my parents who were genuinely worried after I called them crying and incomprehensible every single day).

It was horrible. I hope I never have to go through that again. I couldn't write about it properly (particularly mentioning the anti-depressants) at the time because I didn't know how to. And I was scared. Somehow I was fine with shedding the stigma of endometriosis, but mental illness was a different matter.

But it shouldn't be. There was something terribly wrong with me, something sending me into a spiral that I was not coming out of. I was exhausted. I just wanted everything to stop for a while so I could just sleep and not have to experience the hell that was day to day life. I suddenly understood how people could commit suicide (a concept I had never empathised with before). I never actually went so far as to think seriously of following through on that (it helps that I'm a massive chicken - a good thing in this case), but I had no hope. I wanted to quit my job and cease to exist.

So what got me out of that spiral?

The first step was meeting with a psychologist. I tried a few out in the year before my diagnosis through a free work program with not much luck, but when the doctor told me that she thought I had depression and anxiety, I decided to bite the bullet and go with a private psychologist.

I'm so glad I did. She is amazing. I cannot sing her praises enough. She makes me feel fully accepted and not judged. She has validated my feelings and most importantly, taught me how to take care of myself. In some ways I'm glad that having endo ended up leading to some pretty deep depression, because I might not have learnt some of the seriously important life lessons that I've learnt so young.

Part of the reason she is so good is because she has endometriosis too. She knows exactly what I'm going through. She celebrates my highs with me, and is proud when I do things that create awareness around endometriosis. She also understands the lows, the unexpected pain attacks and the life-blood draining fatigue.

If you have endometriosis or some other chronic disease, I seriously recommend finding a psychologist with your same condition if possible. In general, they have so much more empathy than psychologists without the personal experience.

After meeting with the psychologist for awhile, I still found that I was having difficulties and crying all the time, even though I now had strategies to help. So I discussed this with my doctor and we decided together that it was time to try anti-depressants to help. I was put on Valdoxan, a new anti-depressant that works on the melatonin pathway (it helps you sleep). Within two weeks I had stopped crying every day, and I had more energy. It felt like magic. I'm still on them. I have more energy on them and feel more stable in general. The best thing about Valdoxan for me is that I still get the crazy high highs. This does mean that I still get fairly low lows as well, but I get out of them much easier than before. I've been on them for about 6 months now.

The last thing that seems to have made a difference is removing the Mirena. I've never done well on the Pill or any other outside hormones, and the Mirena definitely had an effect on me. Since it was removed in January, I no longer feel like I am falling deeper and deeper into a bottomless pit, with the light at the end of the tunnel growing smaller and smaller. I have hope. And it's the best thing in the world.

What it's like to have endometriosis: Medication

This is what I had for breakfast this morning.

2 Ponstan, 2 Panamax, 2 Cyklokapron, 1PMS Support, 1 krill oil tablet.

Yum!

Not really. But it is a fact of life that having endometriosis does come along with a bunch of drugs. When I was a kid you couldn't get me to swallow a tablet, no matter what. My parents used to crush up these tiny anti-malaria tablets we had to take every week when we lived in PNG and I still wouldn't take it. Now I can pretty much swallow the whole handful above in one gulp.

All up, during my period and in the week before (minus the Cyklokapron when I'm not bleeding), my daily dosage looks like this:

Painkillers
6x 500mg Panamax (paracetamol), at four hourly intervals
6x 250mg Ponstan (mefenamic acid), at six hourly intervals

Antifibrinolytic (anti-anti-clotters aka how to stop the red river from overflowing)
6x 500mg Cyklokapron (tranexamic acid), at six hourly intervals

General anti-inflammatory support
1x 1000mg krill oil
1x PMS support (1000 mg chaste tree fruit, 500 mg black cohosh root, 2000 mg winter cherry root, 50 mg vitamin B6, 40 mg magnesium, 26 mcg chromium, 100 mg taurine)

Anti-depressant/anti-fatigue
1x 25 mg Valdoxan (aglomelatine)

It's a wonder I don't rattle when I walk.

When I don't have my period, or it's not the week leading up to my period, it is not that extreme. It whittles down to just daily krill oil, Valdoxan, and some paracetamol if I really need it.

Diagnosis endometriosis: one year on

My mum and I, four days before I was diagnosed with endometriosis (at WOMAD!

Today marks one year since the laparoscopic surgery where I was diagnosed with stage III endometriosis. It feels like it an eternity. I feel like a completely different person to who I was a year ago. Back then I thought the surgery would fix me and "cure" me of endometriosis, and that it would only take me a week to recover. To say the least, I have learnt a lot since then.

My heart goes out to all the women and girls out there that learn today that they have endometriosis. I pray that they have comfort in the knowledge that there is a name for what they have been feeling, and there are some treatments that may help. I hope they also find comfort in all the other women out there, particularly on the internet (check out my blog roll on the side bar), who know exactly what you are going through and wish only the best for you. Let's not drag each other down with negative comments and criticisms, but support each other instead. We know most intimately what each other needs anyway.

If I could tell my freshly diagnosed self anything I would say:

• Trust your body, and don't let any surgeon or doctor convince you not to. Only you know what you are feeling. On that note, ditch your gyne and GP now - there are much better doctors in your future.
• You are not alone. Do not underestimate what meeting other women with endometriosis will do for your sanity. Blogs and facebook support groups are pretty awesome too. Your family is pretty helpful too!
• Don't be too hard on yourself.
• Let yourself grieve. Books help.
• You might not be able to have kids, but that's ok, you might too. Better to make peace with it now either way.
• The pain won't completely go away, and it will be difficult to adjust to the fact that you are most likely stuck with this disease forever (or at least menopause), but at least you know what you're fighting against now, and that is valuable knowledge.
• If people don't make the effort to be there for you as much as you are for them (on the whole), they're not worth it. Your time is precious, even more precious than it was when you were healthier. Use it wisely. Don't invest in things that don't give you a return.
• Oh yeah, and listen to Clare Bowditch. She makes everything better.

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Maybe all the spamming got through to them? I'm SO excited!

Let's get physical!

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I'm not talking about Olivia Newton John's kind of physical.

I'm talking about the physical effects of endometriosis. The things that made me think that there was something wrong with my body, the things that drove me to go see a doctor (time and time again).

So what were the things that made me front up to the local surgery?

1. Pelvic pain (cramping) for up to a week before my period, which was not relieved with over-the-counter painkillers and a hot water bottle.
2. Cramping so bad on the day before my period, and the first day of my period that I could barely walk/sleep/do anything.

These symptoms got progressively worse as I got older.

There's a few more symptoms I have realised are due to endometriosis since my diagnosis.

3. Fatigue. (While I was definitely aware of this before my official diagnosis, I had no explanation for it and didn't realise endometriosis could cause it.)
4. Random stabbing pains in my pelvic area, at unpredictable times. (If been around me you've probably seen me stop and regain my composure because of these.)
5. Diarrhoea/constipation depending on how my gut is reacting to the endo.
6. Heavy periods (I didn't realise that mine were classed as heavy, I thought it was normal to bleed that much.)
7. Flank (lower back) spasms with severe pain.
8. Bladder pain (when it's full, when it's emptying, after it's empty, when it's slightly full, you name it.)
9. Severe bloating around my period.
10. Nausea

I have also experienced extra symptoms (and although some are mental symptoms, they do have physical manifestations - eg lethargy, insomnia, heart palpitations, anxiety attacks) at least in part linked to treatments I have had for endometriosis.

11. Depression
12. Anxiety
13. Weight gain
14. Breast tenderness & growth
15. Spotting
16. Impaired immunity

So, physically, you can see that endometriosis is not "just bad period pain"! This is not a definitive list of symptoms, just the ones I experience.

Linking up with A New Kind of Normal for Blogging for Endometriosis Awareness.

Endometriosis Awareness Month

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This month is Endometriosis Awareness Month. 

This March also marks the first anniversary of my diagnosis and laparoscopy, and potentially the beginning of my younger sister's journey as she is currently being investigated for endometriosis.

I get upset thinking that my sister might have to go through the same crap I've been through, the same pain, fatigue, misunderstanding and dismissal from health practitioners and other people. The same uncertainty.

You know what I think the number one issue for endometriosis sufferers in general is?

It's not the pain - although for some this can prevent them from working or leading the life they want to lead.

It's not the fatigue, or the nausea - again, you learn to deal with these things when that is your life.

No, all of these issues are ones that we find our own way to cope with most of the time, although sometimes we cannot overcome them.

No, I think the biggest problems are the unseen effects. It's the self doubt and rock-bottom self esteem that sufferers experience after years of denial and dismissal from health practitioners. It's the feelings of uselessness when you can't do the things that other "normal" people can do, because you have an invisible war going on inside you that others cannot see, and you are so tired. When you have to re-assess your dreams because maybe your body just isn't capable of doing those things. For some women this will include the news that they will not be able to have their own biological children. For other women, it will be the realisation that maybe they can't pursue a career that they wanted to because their body cannot handle it. It's the loss of intimacy in relationships because the thought is too painful. It's the feeling like you are crazy because your boyfriend says that you can't possibly be in that much pain, and that you should just get over it. It's the events you miss out on because you can't get out of bed, or if you can get out of bed you're bleeding so much that you will most definitely bleed through that super tampon on the 2 hour beach trip. It's the monthly bedsheet bleaching because the pad leaked again, even though you invented a double pad contraption this time and it was so heavy it still got through. It's the awkwardness at work when you have to explain your repeated absences to your middle aged male manager who thinks periods are gross. It's the jobs that are lost because of the absences and misunderstandings. It's the defeat felt when trying to explain that endometriosis is not necessarily "cured" by pregnancy to people who insist that "That's what fixed it for my cousin/best mate/neighbour/hairdresser/sister-in-law!" It's when you feel like all your efforts are futile when scientists spend their endometriosis research money on judging whether women with endometriosis are more "beautiful" than the rest of the population, instead of trying to stop this damn disease. It's the days you struggle through work trying to concentrate and act professional when all you want to do is curl up in a ball and cry.

It's easy to get disheartened when living with endometriosis and trying to spread awareness.

So what's my ultimate goal?

I'm not asking for a cure (although that would be nice);

I just want the day to come when women are taken seriously when they visit the doctor with pelvic pain; when there is enough awareness in the community of endometriosis that women do not assume that having to terrible pain and fatigue is normal; when sufferers do not have to explain themselves.

*Disclaimer: I am not saying at all that the pain, fatigue and other symptoms that come with endometriosis are little things. They are not. There is still no effective treatment for endometriosis. Endometriosis can significantly affect lives to the point where women are rendered immobile or other organs (such as the bowel or bladder) are invaded with endometriosis to the point where they lose functionality, causing further health complications. However, these symptoms are magnified ten times over if the patient is constantly trying to get their condition taken seriously. 

Linking up with A New Kind of Normal for Blogging for Endometriosis Awareness.

We did it!

Today was the ActewAGL Women & Girl's Fun Run/Walk. A few weeks ago I rallied some of my friends together to make a team to represent the Canberra Endometriosis Network (CENTS). While the fun run is mainly to support ovarian cancer awareness, the team with the highest number of runners would win money to go to the charity of their choice.

Thalita power walking towards the finish line

I had a really good response to the call - many of my friends wanted to join in and support the cause. Unfortunately it turned out to be a bad weekend for many of them, but it's good to know that there are people out there that are interested!

It was also great to hear that entering a CENTS team in the fun run started a lot of conversations about endometriosis with my friends who were participating. Whether they had endometriosis or not, it is so good to hear that even more people are finding out about endometriosis, and it's becoming less and less of a big secret every day.

Lara & Olivia gleefully finishing

Sunday morning rolled around and we all donned our yellow for endometriosis awareness. My goal for the run/walk was to do 1 min run/1 min walk intervals. However, a friend running with me pushed me to run the first 1 km, and then we figured we might as well do 2 km, and by then I just wanted to see if I could make it the whole way.

Go yellow!

...and make it I did! Except for a couple of points during the race where I had a 20 m stint of power walking, the rest of the time I jogged, and I actually sprinted for most of the last km (which is why I was there at the finish line to take photos of my power walking friends).

Canberra Endometriosis Network represent!

I never would've believed that I could've done this even 3 months ago. I'm so proud of myself for doing it. To tell the truth, I got quite emotional towards the end of the run, just so happy to see everyone cheering you on, supporting you and wanting you to do your best. It's such a great environment. I'm sure to seasoned runners, 5 km is peanuts, but to me it is a big achievement. I look forward to the day when 10 km is my regular run.

The whole gang

I'm hoping to make this an annual event and have T-shirts, sweat bands or capes made up next year. This year it was enough to just get a group together. It was particularly poignant for me as today was not a good pain day for me. Kind of ironic I guess, but it's good for me to see the progress I've made in the last year. If I had had a similar day of my cycle last year I wouldn't have been able to get out of bed from the pain, while here I am running 5 km! Between the surgery, diet and exercise, something must be working for me. It's not gone, but at least I can function a lot better. (Disclaimer: this run was brought to you with the help of tranexamic acid, Ponstan & Panadol, so I did have a little help in the painkiller department.)

Linking up with A New Kind of Normal for Blogging for Endometriosis Awareness - Yellow Shirt Day Link-up.