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.

Jemima's Story - blog #2 - first day of treatment!

Hi everyone! So it's been a while since I introduced myself - please find below the next instalment in my journey towards being better in control of my pain and urology related symptoms. If you haven't seen my original story, you can read it here. Please note that for the sake of saving space on the Moss Bank blog page, all of my instalments from here on in will be displayed in the COMMENTS section below so that my journey is easy to follow!

Starting treatment today felt like perfect timing, with a particularly painful night last night and no less than five wee trips! Phil welcomed me into his lovely clinic in Sale this morning and I immediately felt at ease despite the ominous looking machine in the corner. The machine is wired up to pads which were placed around my lower abdomen and back - see pics below. Very 'star trek sickbay'.

The pads send electrical impulses to activate the deep muscles, and the idea is to get the pulses as intense as possible (without them being overly painful) within the first few treatments to truly benefit. I suppose as I am already fit and (apart from the endometriosis) healthy, with a fair amount of existing core strength, we were able to get the impulses to the higher end pretty much straight away, so I'm hoping within a few treatments I'll really be able to tell you about the benefits of the arysis trial!

As it's only day one all I can really tell you so far is that is wasn't as scary as it looks, mostly tickled and twinged, and I certainly feel like deeper muscles have been activated than the ones I use when I'm doing crunches or planks at the gym! We established quite quickly that I definitely have a more dominant side (most people do) and therefore while we were getting the balance right I feel like my right side has been worked considerably harder than the left for the majority of today's treatment, leaving me feeling slightly wonky in my aching! This shouldn't be so much of the case next time though! The aching in my muscles has definitely made me more aware of my posture today and I feel like my 'internal corset' has already been tightened, which is almost definitely leading me to be activating my core a bit better in every day life and tasks, which can only be a good thing! Phil did mention that the way the muscles are tightened and toned through the treatment would probably lead to inch loss, but we didn't take a waist measurement as I am already quite small and not in it for the inch loss! I'll be sure to report back on any physique benefits I notice as a bonus of the trial, though! I certainly feel like I've been worked hard, and I'm looking forward to seeing how my symptoms are over the next week or so after another treatment or two, and I hope to notice some correlations to report back. I feel like my life would be a dream come true if I could sleep through the night just for once, so watch this space! :-)

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UPDATE - as mentioned in my bottom comment for 'day 11' - see below a pic of my abs! :-o

Natalie's Story

At age 16 I collapsed at home due to what I named The Pain.  My sister who was aged 11 had to help me to bed where I stayed for the remainder of the day.  I wasn't sure what this internal dragging sensation that made me feel feverish, nauseous and dizzy was.  There was nothing that made The Pain any better and I managed by curling up into the foetal position and waiting for sleep to take me away from it all.

The Pain was not linked to my monthly cycle and would strike at any time.  I went to my doctor and explained that I had these episodes and had no idea what was causing them.  I was told that I had constipation as I only had a bowel movement once a week.  When I explained that whilst this was a problem for me it was not the source of The Pain my GP seemed uninterested and unwilling to spend any further time to look into it.

Fast forward a few years when I returned to the doctor when my periods became a month long with very few days break.  Despite being on the Pill and being able to "manage" my cycle better it was not the case.  I was advised to try the contraceptive injection which made my periods lighter but I spent the whole month spotting, which is less draining than a month long period but, still not the ideal.  I returned to the Pill after two years on the injection.

My 24th year was my most Endo disruptive.  The Pain was still able to bring me to my knees but was not as intense as when I first experienced it.  The only problem was that The Pain was now more frequent.  I spent more time than I care to recall trembling on the toilet waiting for the symptoms to subside.  It was only when my then Boss told me that his wife had endometriosis and told me to insist on an ultrasound that I had a name for The Pain.  I immediately googled endometriosis and found that I ticked all the boxes so booked an appointment to see my GP.

I was reluctantly referred for an ultrasound and a few days later was called at work by my doctor to be told that some cysts had been found but also a heartbeat!  I was told that the cysts were the cause of my discomfort and that they were likely to burst during the pregnancy.

Eighteen months after my son was born I was sitting in a bar with my partner when I had the worst dragging sensation I had experienced in a while and when I got up to go to the toilet I found that I had really heavy bleeding despite not being due on my period.  I sat and cried in the toilets as I realised that The Pain had returned and so the diagnosis of cysts was unlikely to be correct.

I had various appointments, consultations, ultrasound scans, prodding and pokings to find out what the cause was.  I was told that my left fallopian tube had a tear in it and was slightly detached and that this had been caused by an STD.  I have never had an STD in my life and was insulted to have been told that this was the cause of my problems.

As a result of the ultrasound I was later referred to a consultant at Whipps Cross hospital as the symptoms were back to the way there were before I had my son.  I was told that a laparoscopy was the only way to be able to tell what was really going on with me.  I was petrified of going in for surgery but I also wanted help to enable me to be a happy, healthy, active Mummy and girlfriend.

A month before my 30th I went into hospital and had my laparoscopy.  When I came round I was shown pictures of the severity of my recto-vaginal endometriosis and what had been removed during the surgery.  Once the discomfort of the surgery abated I felt a lot better and managed to enjoy almost two years without any pain at all. 

With the pain came the most horrendously heavy monthly cycles I have ever had.  I was reduced to sitting on bathroom towels in the car and had a number of very embarrassing walks from the office to the car with stained clothes.  We had relocated to Manchester so I visited my new GP who due to my history immediately referred me to a consultant who then suggested Prostap. 

The consultant explained that I could possibly be pain-free for between 2-4 years once through the temporary menopause that Prostap induces but I would need to think about having another baby and then I would require a full hysterectomy. 

Within a day of my first Prostap injection I was suffering with the night sweats, hot flushes, insomnia, emotional outbursts and everything else that comes with menopause.  For my son and partner it was not an ideal 6 month period but I had no pain whilst on Prostap which meant although I would burst into tears when discussing where to buy an ice cream I was able to be out with them without being uncomfortable. 

I had my last injection in November and my periods returned in February.  I have started getting the niggling stabbing pain that stops me in my tracks and have been reluctant to return to the GP as I don't want to have another laparoscopy.  Following my second laparoscopy in August last year I had trouble breathing which resulted in hospitalisation, a clot on my lung and a month off work. 

I was really pleased when I saw an email from the Manchester Endometriosis Group asking for volunteers and emailed straight back as I fit all the criteria.  Phil called me shortly afterwards and explained what he was trying to do by running the clinical trial.  He gave me time to think about whether or not I wanted to go ahead.

Yesterday I had my first session with Phil.  He was very friendly, open and understanding.  He managed to hold the session with my very inquisitive six year old chatting away.

My muscles feel a lot tighter today and the urgent signals seem to have calmed in my bladder.  I have had a couple of stabbing Endo pains today but it's early days and I am excited to post on the blog about the experience.  Good and bad.

Feedback, comments, and words of Encouragement to the lady's taking part .

Hi it's Phil we've had 1013 page views so far ! hurrah so please leave some feed back  so the lady's know your supporting them thanks Phil x