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

Claire H Story

Hi I am Claire and I am 33. I hope by writing this blog you can learn a little bit about endometriosis and also hopefully (fingers crossed) the positive affect this treatment will have on my condition.

I will begin with a bit of background about me. I hit puberty very early, at the age of 10 and by the time I reached secondary school I was forced to have up to a week off school each month due to the pain, sickness and diarrhoea I would suffer when I got my period.  The pain was so bad I would not be able to walk due to the dragging sensation down my thighs and I would bleed heavily for up to 5 days. My GP prescribed me Ponstan, a strong painkiller, which I would take a few days before and during my period. As a result of numerous trips to the GP he then prescribed me the pill. This seemed to help. I would still bleed heavily but the pain was bearable and I could take over the counter painkillers as opposed to ones that look too large to swallow!.

I continued on the pill throughout my teens and my twenties and then in my late twenties I began suffering ‘blind’ migraines. I would literally lose my peripheral vision in both eyes, the first time for two days. Following numerous tests they decided I was at high risk of a stroke and had to stop taking the pill. This did not bother me as I knew I needed to come off it as I was approaching ‘that’ age and wanted to start trying for a family. My cycle immediately returned, so I thought that was a positive! But then gradually all the symptoms I suffered prior to going on the pill returned with a vengeance.  My GP told me to take anti inflammatory’s and painkillers and basically get on with it. I had not been taking the pill for 3 years, and my then partner and I were not using protection but I did not fall pregnant. This worried me. It seems you spend so much of your life hoping for your period as you don’t feel ready for a baby but then when faced with the reality that it is not actually that easy to get pregnant you naturally wonder if this can actually happen, is everything in ‘working order’ and what if it can’t happen.

I then began bleeding in between my periods. Nothing specific seemed to trigger the bleeding. I was drained emotionally and physically. It had an effect on my whole life.

I finally got referred to a gynaecologist who said I would need a laparoscopy to see what was going on. I had this last October when, at 32 years old I was finally diagnosed with endometriosis. I didn’t have a clue what this was. They told me that my fallopian tube on my left hand side was stuck down to my back with adhesions and there were other ‘bits’ floating about. I was devastated as I thought the operation would ‘cure’ me when in reality the surgeon did not remove any of the endometriosis as it would have meant removing my fallopian tube. I had hope for my follow up appointment as I thought there must be something they can do. I was told I had two choices; get pregnant or be put through the menopause. I was then told that it was unlikely I would be able to get pregnant without their assistance and would need help. Double whammy! I was suddenly faced with not only the condition and all that comes with it but also the fact that I would not be able to conceive naturally. I definitely did not want to be put through the menopause but I did not feel ready to face fertility treatment either so what was I left with? To continue to suffer? Yep, that was exactly what I was left with.

I remember my next period following my laparoscopy I just sat and cried. The pain and bleeding was horrific I felt very low and depressed. I know it sounds dramatic but any fellow sufferer will relate to the draining effect it has on your whole life. I have pain most days and bleed or have ‘spotting’ for more days of the month than I don’t. I may as well take shares out in Always! My symptoms have gotten worse since my laparoscopy I now get pain and bleed each time I exercise, bleeding that can last for days. I refuse to allow it to stop me as my depression is worse when I don’t exercise, although some days I do have to listen to my body and take it easy. I have an appointment with a specialist in a few weeks – not sure how I feel about going back as I dread having another laparoscopy as I was so ill following my last one, but suppose I will just have to wait and see what they say this time.

Speaking with Phil has given me hope! The stories I have heard have made me feel so excited and positive about this treatment. I cannot thank Phil enough for allowing me to trial this process - I am willing to try anything! I will keep you up to date with my sessions and how they make me feel and if they do make any difference to my symptoms.

 

Jemima's Story. Blog #1, pre-arasys treatment

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.

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