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...
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _

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.

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