My name is Jemima, and although I look like a normal, active 25 year old on the outside, on the inside, from a physical viewpoint, things aren't brilliant. In this blog post I hope to introduce myself, my condition, and what my hopes are for the arasys trial.
First, a few facts about endometriosis. The average wait for a diagnosis of endometriosis is 10-12YEARS, and it costs the UK economy around £8.2BILLION per year in treatment and loss of work. A similar number of women are affected by this condition as those with diabetes! However, endometriosis is such a different monster from case to case that for some people on the mildest end of the spectrum, it's simply a case of a few extra ibruprofen every month and they may not even know that they have the condition ; for those on the opposite end of the spectrum, whilst not "life threatening", this condition is truly "life destroying".
I'm going to take some time to go in-depth about my experience with endometriosis over the next couple of paragraphs. Feel free to skip to the bottom paragraph to read about my hopes and goals from the arasys treatment!
From the age of 14 I knew something was wrong. Passing out from pain every month and having time off school without fail was not something 'normal' teenagers had to deal with. And a couple of years later, discovering how painful intercourse was, I knew something wasn't quite right. However, with more than one doctor telling me "sex is just painful for some people, there's nothing we can do", (an absolute outright LIE) "spotting is completely normal" (the response to constant actual bleeding for weeks on end) and the extra-patronising line we've all had at some point, "periods aren't a walk in the park, you know" when you've broken down in tears for the umpteenth time in the doctors surgery trying to describe the constant, exhausting pain whether you're "on" or not. Is it any wonder that depression and endometriosis go hand-in-hand? The fatigue was crippling and really affected my capacity to be the best I could be when completing my degree. It wasn't until I was 22 (by this time I'd been unable to have sex for over 18months) and had been in constant crippling pain that stopped me leaving my flat, constant bleeding, terrible fatigue, that I found myself literally begging my doctor for a referral. I was incredibly lucky that after finally confiding in my parents, we discovered that as I hadn't yet graduated (I had deferred my final exams due to illness), I was still covered on my father's work health insurance and was able to get an appointment with somebody who took me seriously.
After a laparoscopy, I was diagnosed with severe endometriosis, mainly around my reproductive organs and bladder, for which the consultant had lasered out what she could during the keyhole surgery, but was unable to get all of it due to my ovaries now being fused to my kidneys. I was put onto a six-month course of prostap, and I thought perhaps the light was at the end of the tunnel. As soon as I felt well enough after surgery, my boyfriend and I attempted intercourse, and for the first time in my life I was able to experience what 'normal people' get to enjoy. The constant day-to-day pain was also gone, an enormous bonus, although somewhat overshadowed by how utterly horrendous and not-all-there the prostap made me feel for the entire six months I was on the drug, plus a string of kidney infections. I knew at this point that endometriosis was not a curable condition; however, I didn't realise quite how much of a losing battle it was.
I felt elated when I came off the prostap, bright-eyed and ready to face what I felt was a 'new life'. So you can imagine my heartbreak when less than two years later, I had noticed my periods begin to get more unbearably, involuntarily-drop-to-my-knees kind of painful again. The mid-cycle blinding stabbing pains, painful sex and grinding aches that made my stomach drop with dread. I returned to my doctor (this time, as a 'proper adult', I was no longer covered by insurance), who luckily took me seriously due to my history, and referred me back to a consultant. I can't describe how disappointed I was. I knew endometriosis would come back to haunt me at some point - but so soon? I had no idea what my options were - there must be something else they can do? A 'next step'? However, after a two and a half hour wait for my appointment, being passed onto a student doctor to whom I pretty much had to explain my own illness, I was tossed straight back onto prostap, with no further investigation or examination, and no time to properly mull this over or protest. "What if this doesn't work?" I asked. "Oh, if it comes back, we can go on and off the prostap indefinitely", said the 'consultant'. Not really the way I envisaged living ; 6 months of absolute misery, swapping one set of symptoms for another equally unpleasant set, for every 18months of my life. What about me? "Do you and your partner want children?" I was asked. "No" - was my simple answer. Kids are a total dealbreaker for me, and my partner and I have no interest in having children. "You'll change your mind", was the patronising nod I received in response. So, I unwillingy and dejectedly set out on another prostap journey with no real 'long term' solution in place. None of my endo symptoms went away; suggesting it was the surgery that had previously helped, not the drugs. It was a really dark 6 months.
As soon as the prostap course finished, I was back to the doctors, this time with urology symptoms to boot. I don't remember the last time I was able to sleep through the night without getting up at LEAST four times. Exhausting. Not to mention the pain, like somebody decides to wring my bladder with their bare hands as it empties. Back to the consultant, then. This time, I was incredibly lucky to see a young consultant who had just finished working for the regional specialist for endometriosis. The first person I've spoken to who understood my condition. I went in with all guns a-blazing, all ready to have to irritably explain what my condition actually was to somebody who didn't really know what they were doing, to fight my corner that I was under no circumstances returning to prostap in my life, and that I wanted more surgery - however none of this firepower was required. I have now been referred for an MRI to try and determine how widespread the endometriosis tissue now is; she seems to think it's pretty far. Then I'll be referred to see the specialist herself, to discuss more extensive and risky surgery (no keyholes this time!) to try and remove ALL of the tissue - potentially involving a number of different surgeons because of the potential risk to my bowel and kidneys. Hopefully, this will buy me more time than a couple of years (for the first time, rather than just being wishy washy, this consultant very calmly and bluntly told me this WILL come back even if they get it all out, and we are simply buying time) - but when it returns again, I'm hoping to be into my thirties and able to campaign seriously to just have my ovaries removed (as the risks of heart disease, osteoperosis etc would be too high for that to be an option now, according to the consultant.)
So, my story is looking a little more 'positive' these days; surgery is on the cards for next year, I hope, and seeing the specialist will hopefully give me a plan going forward. HOWEVER, this does nothing for my current symptoms mentioned above. The constant pain, the urology nightmare. And this is why I am so excited to be a part of the arasys trial. Traditionally arasys is an inch-loss muscle-toning treatment - which made me question whether it would be suitable for me. I like to think of myself as a bit of the 'hard as nails' type; although I find the pain tiring (on a good day it's a dull ache. On a bad day it's like somebody's harpooned my keyhole scars), I get a kick out of channelling the pain into my anger towards my condition, and pushing through to not let it stop me achieving. A 'This Girl Can' attitude. I am very active and do a lot of running (my current goal being to do a marathon before my next surgery), and I find that the pain is no worse than it already is whilst I am exercising - so why should I let it stop me? If I push myself through the pain, the endorphins released as a result help me mentally (as mentioned before, depression and endo have a hand in hand correlation), and my super understanding GP prescribes me some stronger painkillers to take post-exercise if the pain feels much worse. So I already consider myself to be quite fit and healthy, and I'm convinced that without this positive energy and physical outlook I'd be suffering much more with this condition than I already am. But the arasys works DEEPER muscles, including pelvic floor, and I'm going to be monitoring closely my pain levels, particularly during and post-exercise, and how it affects my urology symptoms.
In an ideal world, by the end of this trial I'd hope to be in less pain overall, less pain post-exercise, less pain emptying my bladder, and able to sleep for longer through the night without as many loo trips! A tall order, I know - but I'm really excited by this opportunity and have real faith from what I've heard already! So watch this space - I hope that in documenting my efforts I will be able to help other endo sufferers realise they're not alone and that hopefully there IS something they might be able to do about their symptoms, even if there is no cure for the condition. Together we might be able to make countless womens' lives more bearable on a day to day basis, and before I've even met him face to face, I have a huge amount of respect for Phil for taking an interest in how the arasys system he uses in his clinic may be able to help women who have felt helpless for so long.
