Jemima's Story Continued

Hey everyone,

As most of you know, to save space on the Moss Bank page, I did an original blog post to cover the arysis trial and have been posting all of my updates and 'diary' style documentation of the experience as comments to that post. However, today's post won't fit in the comments box so I've just done a new fresh blog post.

If you're here for the first time, you can read my introductory story here, and my arysis trial diary blog and comments here.

Today’s blog post is considerably darker and more empassioned than usual so before I go any further as this is a public blog, I want to warn that there may be some anxiety triggers in the post below along the themes of suicide and, briefly, rape.

Today I heard a really harrowing statistic about endometriosis and suicide. I’m not going to tell you that statistic, as so far I haven’t actually been able to find evidence to back it up. But my search has shown me that despite there being a very clear and strong correlation in studies linking endometriosis to depression, and linking chronic pain to depression and suicide, there are no studies into endometriosis and suicide despite coming across many reports and accounts of women who have taken their lives because they feel unable to continue with this disease.

So, WHY do endometriosis sufferers tend to suffer from depression so commonly? And why would that depression be so severe as to, in some cases, lead to suicide? Let me outline the reasons below, and hopefully show you why it’s a disgrace that this condition is STILL all too often just not taken seriously by medical professionals. Endometriosis costs the UK economy around £8.2BILLION per year down to treatment and loss of work, and the average diagnosis is 10-12 YEARS despite affecting a similar number of women to those who suffer with diabetes, and yet we are STILL not taken seriously.

I have suffered with clinical depression for a number of years in the past, and am very thankful to be under control these days, and despite ‘fantasising’ about just being done with everything, as many depression sufferers do, I am very lucky to be able to say I never considered suicide as a serious option. But I can understand why people with my condition might, and the research I’ve done today has really stirred me up. Here’s why.

1. When you spend 10-12 years being told the pain is all in your head, you start to believe it. You wonder what is wrong with you, will you ever be ‘normal’, why can’t you just shake yourself out of it? “Am I actually insane?”. Add to that being told that pain during sex is ‘just normal sometimes’ and ‘periods are supposed to feel like that’, you look around you and wonder why EVERYBODY ELSE is coping with all of these just fine. Am I weak? Am I a drama queen? Perhaps this pain-induced fatigue, crippling tiredness all the time, is just me being a disgusting lazy excuse for a person. Am I a totally worthless human being? Endless guilt trips taking you round in circles, crippling self-doubt that bleeds into every area of your life because it’s on your mind all the time. Relationships that break down for all of these reasons which add to the self-loathing. You get the idea.

2. Congratulations! You’ve found a Doctor who wants to make further investigation! Quickly, now, get your pants off, lie on that cold table and let a total stranger prise open your vagina for a rootle around - never mind the fact that at this stage in your diagnosis, even after the hottest date with a few drinks to relax, your best Agent Provocateur set and the optimism and determination that the night is set to be awesome, you still always end up unable to coax an average-sized member in there. Whatevs! This stranger in their lubed-up latex gloves exasperatedly tutting and sighing “you NEED to relax” whilst your body racks with sobs and you’re choking on your own snot is OBVIOUSLY all the reason you need to relax. Right?!


Now, I know that in a hospital or doctor’s sugery you can never be physically ‘forced’ into doing anything you don’t want to do. However, psychologically each time I have seen a doctor or consultant I have felt in a position where I was unable to say no, or if I’d tried to say no I’d essentially been forcefully coerced into having an examination I didn’t want. The sense of violation and self-loathing this gave me towards my body still makes me recoil and speaking about it so rawly I find incredibly upsetting. After a particularly terrible experience where I was a broken down mess, the rather shaken junior doctor went to fetch his consultant to ‘have a go’ instead. I wasn’t permitted to redress myself whilst he went to get her as I needed to be ‘ready to go’ as soon as she came - therefore I was left naked from the waist down crying alone on a table for over 45minutes before being yet again tutted at because I was in too much of a state for them to do anything ‘useful’. Now, I absolutely mean no disrespect whatsoever to victims of rape as I know what they have been through is utterly horrendous, and more terrible than anything I could ever imagine. But in a way I felt like I had been ‘clinically raped’ on these occasions, forced into something invasive and violating that I felt I had very little say in, and the sickness and hatred I felt towards myself was crippling. I remember coming home from the hospital one time, and crumpling in the shower, scrubbing my whole body raw, trying to cleanse away the horror. Sometimes the way I’ve been made to feel still haunts me. I’ve still been unable to go for a smear test, and when I got my first letter inviting me to go, I cancelled all my plans and stayed home to cry for the entire day. Not a great combo when endometriosis sufferers are statistically three times more at risk of ovarian cancer. A slap in the face to anyone who has been affected by cancer - who is this selfish harlot who thinks she’d rather go out to cancer than suck it up and go for a smear?! But unless you’ve suffered with a truly crippling mental illness, you’ll never understand what it’s like for us.

3. Yay! Progress! You’ve been referred for a laparoscopy! Excellent. Perhaps they’ll laser out some endometriosis tissue if they find it in there. Oh, wait, didn’t they tell you? You’re a ticking time bomb. Even if your internal organs aren’t all fused together (which, they probably are if you’ve wated 10-12 years for this), and we get it all out at source, it’s just buying you more years before it all comes back, complicates around the scar tissue and you have to have increasingly complicated surgery! Plus all of the pain will be back within a couple of months. Soz.

4. But, at least we FOUND the endometriosis during the laparoscopy. We have a diagnosis! Excellent, this now means you can be prescribed hormone treatments that swap one set of terrible symptoms for another. We are told that this ‘shrinks’ the endometriosis tissue but that is mostly a load of bull. It just totally shuts down your reproductive system so that you can’t have periods and therefore there can’t be as much build up of womb lining and you won’t be in monthly pain because you won’t be having the periods in the first place. As swapsies, you get migraines, dizziness, crippling hot flushes, increased risk of osteoporosis, dry cracked skin, more fatigue and horrendous mood swings whist your hormones get crapped on even more. Fair deal? What are you moaning about, you’ve got your precious diagnosis and a TREATMENT! You should be grateful rather than feeling more depressed, surely.

5. Did you know the “having a baby really helps with endometriosis” is a total myth and has very little to actually back it up? Perhaps it does work for some people. But it’s certainly not a blanket for everyone. It’s a shame that lots of doctors believe this rubbish, I have lost track of how many times I’ve been told this despite the fact that 30-50% of sufferers of severe endometriosis are infertile. That, and I’ve literally no interest in kids. So even if I COULD have them, which I’ve been suggested it’s very unlikely because of how my organs have fused, are you suggesting that I bring a child into the world that I don’t really want, just to potentially, maybe, possible, get rid of my endo symptoms? If that’s not a recipe for a total mental breakdown/mid life crisis, I don’t know what is. Similarly, the couples who desperately yearn for kids but are unable to have them, the heartbreak and helplessness. Many of us have been in very dark places because of this.

6. All of the above can make you feel so alone, isolated. There are so many who feel unable to talk about all of these taboos. The worst points of my depression were when I felt so utterly, unbearably alone, like nobody could reach or understand me through my wall of pain.

So, I ask you, is it any wonder that severe endometriosis and severe depression go hand-in-hand? And WHY does little to no research exist into this issue when so many are affected? In the venn diagram of how few craps our government gives about mental health and womens’ health, women’s health-related mental illness is right down there underneath their sickeningly polished shoes.  It makes me so angry that so many people are suffering but because of lack of funding, because of taboo and women being oppressed and ground down and patronised there are people feeling so helpless and alone as to consider suicide, when actually there are so many in the same boat.

Does it make me cringe that my parents, my family-in-law-to-be, my colleagues, are potentially reading about my (lack of) menstrual cycle, rubbish sexual history, the consultant’s failed attempt at sticking his hand in my vag? Yes. Yes it does. But it doesn’t make me feel half as sick as the idea that if we don’t start speaking out and sharing our experiences, cringe and dark bits and all, people will continue to suffer in silence, and this disease will continue to be at the bottom of the priorities.

And this is why people like Phil are worth their weight in gold. Phil has given his time and energy to give us a chance that may not even have worked - and although my endometriosis won’t be cured through this trial, it has already changed my life. My day-to-day life is pain free. I can exercise pain and bleeding-free - I no longer have to be prepared to give my evening up to curling up on the sofa in pain if I want to go to the gym in the morning. I can pee without pain. I only have to get up once in the night as opposed to five or six times. Oh, and my pelvic floor of steel has certainly..helped..with lots of things..!!

But if we don’t share these things, who else will it help? We don’t know what it is that’s helping our symptoms - definitely something to do with the deep muscles being stimulated, but more research certainly needs to be done. Every single woman in the support group who has been undergoing the arysis treatment has reported enormous improvement in their quality of life. We can have a QUALITY OF LIFE.

Please help me to spread the word that if you are an endo sufferer like me, you are NOT alone. And there may be things you can do to help. You never know, you might even save a life.