Saturday 9 July 2011

A cutting reality.

He said "I do understand" as sincerely as he could and, through stinging tears and a broken voice, I said, firmly, "No, you DON'T understand."

How can one understand something when one has never known it? How can one ever know? One can not.

Since Wednesday's appointment with my consultant, I have felt entirely depleted of confidence and enthusiasm, filled with hand-flapping joy at watching Hugh Grant and Steve Coogan be magnificent on Question Time and Newsnight, respectively, and back down to that grim cave of anxiety and insomnia which have rendezvoused and grabbed me firmly, and cruelly won't seem to let go, dragging me further in to the dank, oppressive bleakness of depression. It's basically a dementor. But more real.

I've had a laparoscopy, and I know what happens. I know the less-than-ideal Sidal soap bathing/hair-washing ritual for days before the operation. I know the very painful cannula needle in my left hand, I know the woozy feeling when they administer the painkillers in to said needle, and the cold sensation in the back of my throat when they give me the anaesthetic.
I know the gas-induced shoulder pain after, the time I'll need to heal, how to move and how not to move, with what I'll need help, I know I'll feel completely shattered for days, and that my emotions will be unpredictable while the anaesthetic fades away.

What I don't know, though, is how to feel before a laparoscopy when already diagnosed with endometriosis. Why is it a problem? Because, like too many other women and girls, the first one didn't work. ("Didn't work" translates as "I still had terrible pain with my periods" - there was such hope that I may - after 16 menstrually-destroyed years, with pain hindering everything I've tried to do owing to the sickening agonies of undiscovered endometriosis - have some genuine control over my own life.)

It was better, for a while, although the fatigue, the heaviness, the laser-sharp stabs in and/or around my right ovary and dragging pelvic aches continued. And still continues. All of it does. But now I have the menopausal forgetfulness, what feels like bone pain and stiffness all over but especially my legs, hands and lower back. There's the insomnia, the nausea, the depressive tendencies to not care about what I love, what I absolutely adore, and cherish.

Whether it's hormonal from the treatment or a reaction to the reality which confronts me with no mercy, I'm not sure. I can't change anything for now; the 5th and penultimate injection is on Monday, and on the 2nd of August I shall undergo my second laparoscopy in 17 months.
My consultant wants to see if he can help the pains I have from my right ovary, and the normal-for-me pains of my periods.

I'm not hopeful.

I don't doubt his ability and skill as a surgeon; I curse and fear, equally, endometriosis and its surreptitious skills, its seemingly completely impervious nature and utterly brutal affects.

Every treatment I've tried so far hasn't worked sufficiently or not nearly enough for me to feel at least partly well.
  • Contraceptive pill: too strong in hormone dose and brings depression back to stay with me for months.
  • Contraceptive injection: simply not an option, because the chances are it will cause depression, as above, but it would be in my system and I wouldn't be able to stop it.
  • NSAIDS: in particular mefenamic acid - was good to begin with; now does next to nothing.
  • Keral: OK but still leaves a lot of pain.
  • Codeine: well... I still have that accidental dependence after the following method...
  • Mirena: seemed perfect - it caused awful pains for the 3 months it was in. And didn't stay there properly, anyway.
  • Implanon: another treatment likely to cause me depression, as well as (like Mirena) cysts to form on my ovaries, which is not good, as I already have polycystic ovaries, and endometrioma were discovered on each ovary during last year's laparoscopy.

I don't know what to do. What if surgery doesn't help? What if the ovary hurts as much as ever? What if periods and the pain and bleeding between periods carry on, and the pain before periods? What if the depression stays, and I can't lessen my anti-depressant dose and recommence driving, begin a kind of work, strive for that thing called independence I've heard so much about?

I'm not unbreakable; I can't keep my chin up or think happy, positive thoughts when it "all gets a bit much".
My optimism is limited to reason.
I bruise easily, both literally and figuratively.

Realism, not pessimism, is the rule by which I try to think and live. When this. is. reality, when all that is offered and tried doesn't stop me feeling unwell or ill almost all of the time, what am I supposed to do? What are we, the women and girls with this hopeless set of non-options, to do?

What would you do?


  1. Although I don't (obviously) have Endo I've had a lot of surgery and can feel the depth of experience and emotion behind this amazing piece of writing. The description of surgery and its feelings and effects is one of the best I've ever read.

    The thing with long term conditions that people without them don't get is that often there is no best option. All you can choose is the least worst and hope that things work out.

    Such a wonderful post. All medics should read this.

  2. What I did do; Prostap injections. Induced menopause has freed me from 35 years of pain, flooding, endometriosis (Bum Period anyone?) & ovulation agonies. Had a Laser Ablation 9 years ago which reduced the 'normal' period - a bit - but did nothing for the Endo. My only regret is that I didn't do the Prostap sooner.

  3. 'What would you do?' - I have absolutely no idea. I suspect I'd do what you're doing and follow the consultant's efforts to ease the pain, but with reservations. When a condition is chronic and you're at a loss at how to stop (no wait, I don't mean stop do I? I mean 'ease') it then you put full, unwavering trust in those who are experts. When they let you down, it's a huge blow, and while I've no idea what it's like have endo, I know what it's like to be let down and then have to put anxiety aside and trust in doctors again. I'll be thinking of you on the 2nd, and mentally willing the endo to eff the eff off xx

  4. I on the other hand tried Prostap and had a horrible reaction to it, which just goes to show that we are all different, and some treatments will work for some and not for others. Unfortunately it often means going through hell while we try them out.

    I have had the same experiences as you with the pill and with mirena, however I have just had my second 3 monthly pill injection, and while it does definitely have side effects, it's nowhere near as bad as I have experienced before. I'm not sure if it's actually what's helping, as I started another new drug from nerve/neuropathic pain around the same time which has worked wonders. I'm afraid to stop taking anything right now, as I feel better than I have for years, but at some point I will take a break from the pill to see if it's helping or just making me feel a bit urghh for no reason.

    Anyway my somewhat rambling point is that I felt exactly the same way about 6 months ago, and felt that nothing I ever tried had or would work, and I would be in agony for the rest of my life. I then asked to visit the pain clinic and they randomly suggested drugs that actually helped!

    I still get lots of pain and tiredness, but my pain levels have reduced drastically and I feel way happier than I have in years.. so it really is possible to get some relief. I just hope it happens for you.

  5. I had 2 laparoscopies - one investigative, and one to remove the endometrium. I was terrified of general anaesthetic and, bizarrely, expected to die. The operation was fine - the post-anaesthesia floaty feeling beautiful - staying on the sofa, unable to sit up or reach sideways, fainting when I tried to stand (we had a hilarious time getting me to bed when every time I reached vertical I passed out), all that was fine and I'd happily go through it again, if it worked. But it didn't. Heart-breakingly. I was quivering with excitement at the prospect of up to FIVE YEARS pain free... The endometrium returned while I was still recovering from the operation, and was in full blast before the scars had healed. (Which they did, beautifully. Massive credit to my surgeon: you can't see that I've even had surgery.)

    We agreed not to try it again and I was left looking at what options remained. Like Lucy: contraceptive pill sends me loopdy-loop. Injections and implants inconceivable for the same reason. GnRH and its ilk - I couldn't cope with the prospect of temporary menopause, either emotionally or practically. I spend so much time analysing, interpreting, and managing side-effects, and a whole new raft, plus HRT, just seemed unbearable. (Plus I overheat at the drop of a hat anyway; how the hell was I to categorise hot flushes as Me or Medication?) So I went back to the Mirena coil, which thankfully *does* stay in place for me. I can only use it for short times (8-9 months) because of the side effects, before taking a break (3-4 months). It's a lot of to-ing and fro-ing with the family planning clinic, a lot of frustrated arguing with nurses who haven't read my notes, a lot of annoying "assessment" appointments, and jumping up and down in frustration because no one at the family planning clinic seems to understand the delicate timing required (in and out both need to be in the all-important ovulation window, which comes once a month, so no, two weeks' time won't do, and do they know how much extra pain this delay will cost me?) but it works.

    People keep asking me about alternatives, but I've read the whole list, I've got Vercellini et al's 2008 paper on Current and Future Medical Therapies on my hard drive (Best Practice 22:2), and keep a watchful eye on new possibilities, and there isn't anything else. Not so far. And then when I hear how badly other women suffer, I feel like I've been let off lightly.

    By the way - for those who don't know why some women react so badly to the pill and other hormonal contraception, I've got the lowdown on my own blog, Endowriter, about progesterone intolerance.

  6. 21 years to get diagnosed. The burden of horrendous pain, flooding, bowel problems, depression, exhaustion all this time. I thought the lap and subsequent lasering of the endo that was all over my ovaries, pouch of douglas and uterus would change my life for the better. Finally I could be free of the physical and emotional pain!
    Reality check - 'you have severe endo we will have to put you on GnRH for a year. Then you may have a chance of conceiving (or not?)'. I am angry that no matter how many doctors and specialists I have seen over the years, none of them even mentioned endo - if they had my insides wouldn't be in the mess they are now. I feel let down by the medical profession. All my life seems to be at the moment is to manage as best as I can to get up and go to work every day, some days in severe pain, just so I can pay the bills. I have no quality of life - I get home exhausted and evenings and weekends are just time to rest so i can go back to work and start all over again on Monday morning. I know it isn't life threatening and for that I am thankful, but it is life destroying and a life sentence.

  7. After the removal of both my ovaries 11 years ago, and my latest surgery last week, my consultant is now referring me to the Chronic Pain Clinic. Passing the buck? Goes to prove there is NO CURE for Endometriosis, just trying to find the right pain relief.

  8. Hello, my wife has extensive endometriosis and adhesions and has so far only had one diagnostic laparoscopy with a surgical one now pending. We can only but hope, despite evidence to the contrary, that the second will offer some respite from the pain. I have ocassionally blogged about her ups and downs and most recently promoted a study to help diagnose the disease early that she is taking part in. I don't know where you and your readers live, but here's my blog page, feel free to check it out:


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