Painstaking navelgazing

Last updated 13 April 2011, 11.00 PM BST; subject to changes

Just a word of warning before I start: if you don’t like the sound of the words in this post’s title, don’t read on. Because, yes, I’m selfishly revolving this post all around me-me-me and it won’t be pretty. So if you do decide to read on beyond this paragraph, don’t say I didn’t warn you.

Chronic pain can be difficult to explain to someone who has never experienced it, or not to the extent that I have. To women I have explained the chronic pain I experience if I don’t take any medication as continual labour pains without the reward; to men I have explained it as “imagine getting an almighty kick in your groin, and then each time the pain from that kick starts subsiding and you start feeling that slight sensation of relief, another kick follows”. Which is evil but the truth.

Let me make clear that I have no medical background other than my experience as a patient and a few temporary stints as a medical secretary, so I can only describe what I have been going through and add what I personally think may be the cause(s) of or reason(s) for the symptoms and side-effects I experience.

For me personally, typing it all into one blog post will hopefully provide a sense of release. For those who know me, it may provide some (more) clarity. For others, I hope this may provide support in learning they are not alone in their (similar or other) struggles. Finally — wishful thinking perhaps — I hope someone with a (prospective) medical career may even take guidance from it… who knows.

Most certainly, I will be submitting a copy of this to my GP, gynaecology GP and gynaecologist.

One major challenge in putting together this post is determining the exact timeline of symptoms, diagnoses and treatments. Again, I am no medical professional so I can not say for sure why it is, but personally I think it’s because of the morphine administered to me over the years that I am no longer able to say with certainty whether something was five days, five months or five years ago, or whether any time that passes without me checking calendars and clocks covers five minutes, half an hour or three hours. But I’ll try to be as accurate as I can, as I’m trawling through past notes and paperwork to help me confirm dates.

Symptoms and (lack of?) diagnoses

If I remember correctly, it was February 2009 when, after surgery, I was formally diagnosed with the chronic condition endometriosis. (A private physician consulted in 2007 had already judged my symptoms to indicate I might be suffering from fibromyalgia or ME but neither has ever been confirmed as a diagnosis, or even investigated into for that matter.(1).

Hindsight is a wonderful thing, and so in hindsight it’s fair to consider that I’ve probably had endometriosis from a young age — I had been on the contraceptive pill since age 14 to control the very symptoms — but my symptoms did not become as severe and as debilitating until after I suffered a miscarriage following an ectopic pregnancy in 2004.

I had already experienced bouts of depression before 2004, but never as bad as the ones I’ve had ever since that miscarriage; they could be purely psychologically because of that miscarriage and other events in my life — pain and fatigue don’t help — but depression is also very much a physical thing that happens when hormones cause a chemical imbalance in the brain, and a symptom of endometriosis. Aside from that, my bouts of depression don’t always seem to have a particular reason for occurring, i.e. I may be struck down by depression at times when there’s really no reason in my life to feel depressed at all.

In the months following the miscarriage I had recurring pelvic infections, treated with vast amounts of antibiotics (often administered intravenously while I was hospitalised); this issue appeared to have been cleared after minor surgery in 2005 (see below under ‘treatment’), but the pain and fatigue I suffered became chronic and worsened by the day. This started subtly, with muscular aches and pains initially quite similar to those felt when struck down by the flu, and probably best described as a ‘T-shirt of pain’, because the area of pain stretched from my neck down through my torso and back as well as into my upper arms, so like a roll-neck, short-sleeve sweater of pain, if that makes sense. I remember my GP at the time referring to these aches and pains as myalgias.

These myalgias were always there, accompanied by fatigue, and slowly grew worse as months and years passed by — from numb/dull ‘background noise’ to completely debilitating chronic pain — as did their extent, spreading from muscles to joints and extending from my torso down to my hips, legs and knees. The fatigue has, perhaps not unsurprisingly, followed the same pattern as the myalgias: it’s become a chronic feature, and has slowly increased from a minor feature in my life to an at times debilitating factor.

Further symptoms I have experienced over the years include PMT/PMS and other ‘hormonal issues’, including sickness, hot flushes, night sweats and mood swings, though of course any of these symptoms could have been induced by treatments received (see further down) rather than be part of any medical condition to begin with. The same goes for the occasional swelling of my eyelids; besides, such swellings are merely a minor inconvenience compared to anything else I’ve been experiencing.

Up until my surgery 2009 I also had worsening urinary problems; these were entirely gone after said surgery, but seem to be (slowly) making a return to my life now.

In 2007 I suffered anorexia, mostly — I believe (not proven) — due to a stomach ulcer (because my appetite and weight improved after I was givenLosec), though in part to me not making much effort to regain weight, because my chronic pain decreased with my weight drop. In 2007 I also experienced drop attacks; a CT scan returned no possible cause so the neurologist attributed it to me being underweight at the time. From time to time (and in addition to the aforementioned myalgias) — currently once every one-two weeks — I experience severe stabbing pains (contractions?) in my lower abdominal area and groin; I call them my ‘endo episodes’ as my regular pain medication isn’t a match for them and they tend to come up unexpectedly/irregularly, last 24-48 hours and then subside.

In addition to all these symptoms, I have now reached a point that the side effects of my medication — although I personally prefer them to my symptoms — are making life (and particularly work) difficult for me: you see, while patient information leaflets refer to ‘somnolence‘, I’m actually knocking myself out regularly to a level of unconsciousness far deeper/greater and much longer than sleep ever would; I’ll admit that on rare occasions I’ll use that deliberately, to my advantage, but all too often these days it happens inadvertently after I take my medication, causing me to lose entire days of work, miss appointments and other commitments, and unnecessarily worry people who try to get hold of me but can’t because not even a marching band could wake me from my near-comatose state.

Treatment(s)

As stated before, I had been on Microgynon 30 since I was 14, which worked just fine for me until 2004, when I got pregnant while on this pill and subsequently had my miscarriage. There was no hospitalisation immediately after my miscarriage, no D&C, but several admissions to hospital in the months after to be treated for pelvic inflammation. In January 2005 a minor surgical procedure involving a colposcopy, biopsy and diathermy; I felt superb after that — in fact, I had the procedure on a Friday and started a busy new job on the Monday after — because the pelvic pains and infections seemed to have gone (although the myalgias and ‘hormonal’ symptoms were still there.

Perhaps being ‘up and running’ that quickly after surgery wasn’t such a great idea (did I tell you already what a great thing hindsight is?), because some months later, when I went to have a Mirena coil inserted at my local GP surgery, this failed because — allegedly — my uterus had tilted or prolapsed and my cervix was twisted or prolapsed as well, probably all as a consequence of getting up and running right after my cervical diathermy.

So in December 2006 I underwent surgery to, erm, ‘straighten things out’ again, so to speak, and have the Mirena coil inserted(2).

Initially I deeply regretted that procedure, because the first six months after it were sheer hell. Although you’re not supposed to feel the Mirena, I believe I did actually feel its every move and I can’t tell you how much pain and discomfort that caused me. But after three months this started easing off and once six months had passed, all regrets had gone, because, actually, much of the effects of the Mirena by then were rather heavenly: pains, cramps, myalgias and fatigue had reduced (they’ve since returned over time), many (not all) PMT/PMS symptoms have gone or at least got less, and to this day I haven’t had a single migraine attack (that alone has made it worth it).

Unfortunately, as time progressed, symptoms returned and worsened. I started practicing yoga and meditation to help ease my pains. I spent a substantial amount of money on visits with a naturopath; money well spent, because the dietary advice has helped tremendously. (I gave up eating meat altogether because of how much more ill it makes me.)

Regular over-the-counter painkillers were insufficient, so I was prescribed Tramadol. This worked, but not brilliantly; aside from that, Tramadol, a morphine-like substance, is rather addictive, so allegedly not advised to be taken for longer than six months at a time(3). Moreover, as with any opioid, you build up a tolerance for it, meaning you need to take more and more of it for it to have any effect. So it doesn’t exactly offer a permanent solution. Another issue was, that although I was receiving treatment for my symptoms, I did not have a formal diagnosis of what was actually going on with me

So in 2009 I underwent surgery again. This time I had a laparoscopy. An ultrasound scan prior to this procedure had shown there to be a 4x7cm cyst in one of my ovaries. During the procedure itself, it was found that this cyst had already disappeared and the ovary healed, but the gynaecologist did find and remove endometriotic adhesions. When I woke from my general anesthetic I was euphoric: not only did I finally have a formal diagnosis, aside from the expected after-effects of the surgery (like the shoulder pains you experience after a laparoscopy), I was actually entirely free of pain, cramps and myalgias. As far as I was concerned, I was cured!

Unfortunately, this euphoria ended abruptly three weeks later, when I collapsed at home and rushed back into hospital with severe abdominal pains. I was treated with antibiotics and a variety of pain relief for just over a week, then returned home to continue medication as usual.

In the time since, I have tried out a series of hormonal treatments, none of which worked and most of which only caused more symptoms to occur; one course caused me to be pretty much bedridden for about three months, while during another I developed a — thankfully benign — tumor on my breast, which was surgically removed in May 2010. My pelvic pains are not just in the abdominal areas where endometrial adhesions were found, and a trial involving an intramuscular injection of Prostrap SR temporarily eased symptoms but did not get rid of them altogether. This suggests that the diagnosis of endometriosis only covers part of my medical issues, though all symptoms appear hormone-based.

Pain and discomfort have only increased: on most days I wake up unable to stand or walk properly because of it, until about two hours after I’ve taken my first dose of pain relief. Pain patterns and discharge suggest I regularly suffer from (bursting) endometriomas and other ovarian cysts.

Currently I take Citalopram (20mg a day, on prescription) which takes the edge of my depression. I have continued to take pain relief, currently in the form of Zydol (tramadol, on prescription) and Paramol (co-dydramol, over the counter); costs (to me) totalling around £40 a month. By sheer accident I found out that they actually work best if taken together, rather than in turns. This has allowed me to function well most of my time, but by now I have become so tolerant that I’ve pretty much reached my maximum dose (400mg Zydol a day, 2000/32mg Paramol a day); my ‘next step up’ in pain relief would be to morphine, diamorphine or methadone, but what on earth would that mean in terms of side-effects, if my current meds are already inhibiting my ability to function?

The aforementioned somnolent blackouts from the tramadol/co-dydramol combo meant that I’ve (understandably) upset employers and clients by not turning up for scheduled shifts and appointments without notice; but if I don’t take this medication, the pain is so debilitating that I can’t work or otherwise function at all. How am I meant to maintain a normal life and hold down a job this way?! I have already lost my marriage and am struggling to work and earn constant and regularly enough to meet work deadlines, not to mention basic financial obligations!

To say that I’m desperate to get my life back is an understatement.

The medical rollercoaster I’ve been on these past seven years has given me a bumpy, tiresome ride, which isn’t easy when you’re not fit and healthy to begin with. Gynaecology is a medical area particularly overstretched in my geographical location, meaning long waiting lists — generally a three-month wait just to get an appointment with a gynaecologists for a mere consultation — accompanied by a messy appointment system: I’ve had past appointments moved back and forth, changed several times over to different dates, times and locations, only to receive a final confirmation by post for an appointment date/time that had already passed by the time I received the confirmation letter; supposedly I ‘missed’ my last appointment with my gynaecologist, even though I wasn’t even aware I had that particular appointment; as a consequence, I’ve now been referred back to my GP to start the referral and waiting game again from scratch.

In that context, I cannot blame medical and other professionals for suggesting that I apply for welfare benefits on the grounds of ‘disability’ rather than seek treatment that could enable me to continue to be a productive, tax-paying member of society, but I don’t feel quite so ready to be written off that way before I’ve even reached the age of 40 — and there will be other people much more deserving of any such welfare payments.

Enough is enough. And boy, have I had enough.

Future?

At the end of this extremely long blog post, there will no doubt be plenty of minor (and even some major) details I have forgot to mention here — but hey, it’s long enough as it is, right? Right now I feel like screaming “Future? What future?” as I am afraid I have no future unless something major is done, and this is what I will be asking my GP, gynae GP and gynaecologist as I will send them a hardcopy of this post along with a cover letter setting out my request, for what I believe to be my only way out: a complete hysterectomy.

By complete I mean not just removing the uterus, but removing the ovaries as well and making sure that any and all endometriotic adhesions and lesions have been removed. I realise that is a HUGE medical procedure, with major consequences, and very much a last resort in terms of trying to alleviate symptoms, improve my quality of life, and move towards establishing what else may be going on with my body if all of the symptoms discussed aren’t down to my hormonal (im)balances.

But I am truly and the end of my tether to play and experiment with my health any longer.

I am tired, so tired. Phsysically, mentally and emotionally exhausted. Not suicidal, but most nights I go to bed wish I could go to sleep without having to wake up again, as I lack the strength to face normal life.

Last year was particularly traumatic as I had to face divorce, financial problems and (family) bereavements. With my health already weak, it left me complete burnt out, and I am still recovering from that.

For my future I would at least like to be able to somehow rebuild my physical health in order to be able to deal with any such challenges life throws at me.

I hope this lengthy epistle helps open other people’s eyes to my plight, and that it will help me get the (medical) help I need so I can get as near to recovery as possible (considering there is no cure), eventually leading to a fresh (healthy?) new start in life.

(1)Symptoms of fibromyalgia and ME overlap those of endometriosis so neither possibility can be ruled out in my case, but I was never formally diagnosed with either (yet). I did have glandular fever in 1999, which, I was told, is supposedly is a ‘prerequisite’ for either condition.

(2)Supposedly the correct procedure is to have a follow-up appointment six weeks after insertion of the Mirena coil, and annual appointments after that, to check the strings can still be seen. I’ve never had any of these formal checks but other surgery and examinations since 2006 have turned out that no strings are visible outside the womb, indicating they’re probably inside the womb, meaning removing/replacing the coil will require further surgery.

(3)Six months? I’ve been on it for several years now…!

Many thanks to Endometriosis UK and the Endometriosis SHE Trust UK.

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