Thursday, June 26, 2014

Yoga for Endometriosis Classes

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.

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.
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!
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.
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.)
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.

Wednesday, June 25, 2014

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.

Friday, June 13, 2014

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.

Thursday, June 12, 2014

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”.

Wednesday, June 11, 2014

My Adelaide favourites

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.
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Vego & Love'n It >>>> 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.)

Goodlife Modern Organic Pizza >>>> 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.)

E for Ethel >>>> 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.

Le Carpe Diem Cafe Creperie >>>> 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!

The Central Markets >>>> Do not miss the Smelly Cheese Shop, Mushroom Man's Mushroom Shop, or Something Wild (if you like your meats of the more unusual variety). Also drop in at the T Bar - my favourite tea shop before I discovered Adore Tea in Canberra. The Asian food court is also full of cheap, yummy, meals.

Pub-wise I loved the University of Adelaide Unibar and the Exeter (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.

Tuesday, June 10, 2014

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

Monday, June 9, 2014

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.

Sunday, June 8, 2014

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.

Tuesday, June 3, 2014

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.
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