Some of you are aware that I, Lucy, have endometriosis. For me, it means a LOT of PAIN. So, it hurts, it stops me being able to do normal stuff, like working, driving, having holidays, planning simple things… many things maybe you take for granted and can do without thinking about.
Endometriosis almost completely controls the lives of millions of women and girls and, sadly, they aren’t always listened to by their doctors or family or friends. Luckily, my Ma, Pa and brother have never doubted me, likewise close friends and my GP. It took 14 years to be listened to by consultants, to be diagnosed, during a laparoscopy, and to receive the appropriate treatment for this horrendous disease/condition.
I aim to run or jog my way round the 5k course in Hyde Park on Sunday 5th September this year. The training is already hard for me to do. The treatment I am receiving, called decapeptyl SR injections, causes joint pain, and for me, that’s in my knees. Constant fatigue from endo and its treatment and HRT, plus the medication for depression, does not make this an easy task for me. It is hard work. It hurts me. A lot.
On top of all she does, she also publishes a blog about how she copes with endo. In a rare blogging moment, I am posting an entry from Lucy as a guest blog within my own.
Please read her blog, visit her charity page and follow her on Twitter…. and spread the word.
Probably not, no.
I was lying in my hospital bed on Monday 15th March this year, after the laparoscopy, when the consultant I had seen several times since 2008 came to see me. He had been “in clinic”, over the other side of the hospital. He hadn’t been able to perform the surgery; he was meant to on the previous Thursday but various occurrences meant my operation had to be postponed.
The decision was made, by me, to have a laparoscopy to find out, once and for all, “if” there was anything “wrong” relating to my womb, ovaries and/or ladybits. Some of you may be aware that, from the age of 18, I have been continually told there was nothing wrong and my irregular, heavy, prolonged and insanely agonising periods were something I would “grow out of” or that would “settle down” in time. The pain before and after periods and the bleeding between them was also not something I ought to concern myself about.
Not only have I been told that my pain was “psychological”, I was also told that I was “too young for anything to be wrong with (my) ovaries, darling”. And, that the only thing which would cause the sharp, tight, stabbingly-sharp pains in my lower right abdomen was “endometriosis of the ovaries, which you don’t have”, the non-surgery-performing-but-bed-visiting consultant said.
Still in immense pain after the laparoscopy with my awesome Ma beside me, I was told, by the NSPBBV consultant, that during the operation, the Mega-neat surgeon discovered that there “was endometriosis on both ovaries”. We found out later in the patient copy letter from the Mega-neat consultant who performed the surgery, that it was also present on the posterior uterine wall and the left pelvic side wall. In the letter, it states that the larger right side (ovary) had to be drained. This accounts for, not just the pains with periods and between them (every day, in fact) but also the amount of pain after waking from surgery; he used diathermy to remove the endometriosis he found. That essentially means my innermost ladyparts were burned, hence the incredible agony I felt, not to mention the utterly horrendous “wind” pains in my right shoulder and chest. I mentioned it. Oh.
Less than a second after the NSPBBV consultant said those ground-breaking words, I sobbed. My right hand somehow hurled itself to my eyes, which then started leaking, as well as my nose. Messy. I wasn’t crying because I’d finally been told what was wrong with me, or because I knew what it meant from now, onwards. Rather, I cried because I was so disappointed, I had been so terribly let down by people whom I trusted to help me, but instead, they neglected to do their job. They neglected me, allowed me to suffer so much unspeakable agony for so many years. I knew what was wrong with me, I knew, completely, that endometriosis was the cause of my pain. I’d tried to tell “them” so many times what my pain was like, but I was stopped mid-sentence, ignored, patronised and insulted.
What happens now? What do I do? Zoladex injections, every 28 days andPremique. What are they? Well, click the words and find out! Or, I can tell you, not very coherently. It is late as I type this and really need to sleep, but this is the third draft of this post and I just want to get it done. So, Zoladex will halt to ovaries for a few months, inducing a menopause. The break from periods occurring should (hopefully) give me a rest from feeling so tired. All the time. From aching, head to toe, and feeling like my womb is trying to cut its way out of my abdomen. And the Premique is a form of HRT, to try to counteract the menopausal symptoms.
There are no guarantees with this (unfairly-named, to my mind) “disease”. I prefer “condition”. It is not curable, but can be managed. However, “can” does not mean “will”. Some women are lucky, and have no pain, while others have immense pain which can not be controlled. And even hysterectomies and double oophorectomies are not certain to stop the pain. Some women have hormone treatment for some months and are free from pain. But the condition will still be there, it just may not “happen” again.
Since my surgery (with MEGA-neat stitches and wounds, and now scars. Did I mention? Super stuff! Tiny entry sites. Amazing…), I have had a period – on the Wednesday, just 2 days after the operation. It was bloody painful, if you excuse the pun. Less painful than I expected but still enough to wake me at 5am and make me nearly fall down the stairs to get a Keral in my face. Took much longer to work than the 20 minutes the NSPBBV consultant told me but hey, never mind, EH? It actually took around 40 minutes to work.
And now, I await another period. I haven’t had a day or, indeed, hour without pain. Apart from sleep. If there was pain, I haven’t noticed it, so bedrugged am I with anti-depressants and codeine. (I shan’t go into details – although it may be too late, now – but the amount of codeine I had made for a toilet situation vaguely similar to that experienced by Lisa Lynch in her ASTOUNDING blog, AlrightTit. I am also so stupendously proud to call Lisa an actual real life friend of mine, all thanks to the wonder that is Marsha Shandur, via the world of Twitter. (I went to Lisa’s Super Sweet 30th birthday party in London in September last year with the equally AMAZING Amanda, but didn’t get to meet Marsha. Good news for her…)
For 10 days I have had the familiar pre-period pains and heavy, dragging, relentlessness of my womb and parts. It would seem, then, that the surgery to remove the endometriosis was partially successful; bits were taken away/burned, but the pain of it all is still happening. Bugger. Today is day 30 of my “cycle” and I don’t have a clue when it will start. It may be another 2 days, or 2 weeks. I’m not just impatient with my body (even though I know I can do nothing, actively, to stop it hurting); the sooner the period starts, the sooner the Zoladex injections can be started. Must be administered, subcutaneously (in the stomach), within 5 days of a period starting. As the NPSBBV man said, “(my) body needs a rest”. NOW.
So, altogether now… HURRY FUCKING UP!!