Campaigning for better recognition of endometriosis and adenomyosis – Elaine’s Story

Dear All, I feel so very sad reading all the comments posted on this website. So many women facing such a dreadful decision, and most of them after having already put up with YEARS of misery.

I have had menstrual problems for ages. I had heavy and painful, irregular periods in my teens, and was put on the Pill. Not that the Pill did any good, it just gave me spots, bloating and mood swings. I gave that up pretty quickly, and just decided to put up with my menstrual pain. This settled down for a little while during my twenties, and I successfully completed University, began my career, and met a great guy.

My problems started again in agonizing earnest in 2002. I had very heavy and painful periods, which could be anything between three and six weeks apart. I bled for anything up to 9-10 days. My periods were generally full of clots, and I suffered dreadful pains and cramping. I have suffered Anaemia constantly as a result, and have tried all sorts of Iron Supplements, including Ferrograd, Ferrous Fumarate, Ferrous Sulphate, Sanatogen, Minadex, Vitamins with Iron… NOTHING works. They just upset my stomach really badly.

Over the years, I’ve felt steadily worse – REALLY run down. I am constantly terribly fatigued, and have almost permanent lower back pain (worst on the right). I also get terrible cramps and pelvic pain in the lead up to my period, as well as water retention and bloating (I can gain up to 7 pounds in less than a week). I DO NOT feel in control of my body, my moods or hormones, and this makes me feel stressed, and drained. I have breakouts of spots, and am constantly tired and achy. It’s like living PERMANENTLY with the symptoms of flu. I also get night sweats and hot flushes. This can be extremely embarrassing, as I sweat terribly, but I have no idea what suddenly brings the hot flushes on.

I am now only 41, so this cannot be the Menopause. My symptoms are SO DEBILITATING, there are days I could just sit and cry. I feel so very angry that so little is being done to help me. I live with constant pain and fatigue. I am also extremely vulnerable to infections – I get multiple Respiratory Infections every year, as well as Thrush, and Urinary Infections. It’s reached a point where my G.P. (who is desperately insensitive) just fobs me off with Antibiotics OVER THE TELEPHONE!
I’ve been going to the GP about this for YEARS, with NO support whatsoever. I was initially given numerous misdiagnoses, including Irritable Bowel, Stress and Food Intolerances. I was referred to a Gynaecologist in 2006, and he MISDIAGNOSED Polycystic Ovaries. Following this, I was told again to try the Pill – Dianette and then Marvelon (neither of which worked).

In 2008, I had a Hysteroscopy with D&C. Afterwards, my Gynaecologist told me he found “NO reason for my symptoms”. This is despite the fact that the Locum I saw for my Hysteroscopy (because my usual Gynae was off sick) recorded EDOMETRIOSIS and possible ADENOMYOSIS in my notes! I also got referred for a Colonoscopy, due to dreadful bowel symptoms of diarrhoea and bloating, and the Bowel Surgeon again suggested Endometriosis. My Gynaecologist completely overlooked this, as did my G.P. (who is useless). Instead, I was told to try the Mirena Device. Again, this had NO effect at all. I still got pain, and flooding with every period. It was a NIGHTMARE at work, and my employers (I was a Social Worker) were utterly unsupportive. I just got treated like a malingerer who made a fuss over simple period pain!

In the meantime, I had to argue with my G.P. as I wanted a second opinion, which they were refusing. I was made to feel a right nuisance! I was even told to take Prozac, as my G.P. tried to convince me I was “Clinically Depressed”. I’ll admit, by this time (2008) I probably WAS beginning to feel pretty low. Quite simply, I had been ignored and made to feel like a fusspot for years. Nobody seemed to take my pain and other symptoms seriously.

In late 2009, I was pushed out of my job. I’d got utterly sick by this point of all the nastiness and lack of sympathy at work. I was constantly being reprimanded for having to have time off and attending medical appointments. Every period was dreadful – my symptoms were such a nuisance at work, but I was made to feel I had to soldier on.

In 2010, my husband complained to the G.P. as by now I was constantly Anaemic, with very heavy and painful periods, and chronic back pain. My career and social life were dead, and my sex life nonexistant due to pelvic pain. I finally got a second opinion in late 2010, and was INSTANTLY told I had Endometriosis and needed urgent surgery. I was gobsmacked! Like, how did they suddenly know so quickly?

I’ve since had 3 surgeries, and several hospitalisations. April 2011 – laporoscopy and laser ablation. May 2011 – hospitalised due to pain. July 2011 – A&E due to crippling back pain. August 2011 – ambulance emergency, taken to hospital, and hospitalised due to crippling pain in back and pelvis. Adhesions suspected. Physio assessment, and discharged with crutches, which I needed for nearly 3 weeks. December 2011 – more ablation and also a radical check of my pelvic cavity to look for more endo, which was found as nodules deep inside my utero-sacral ligaments. Adhesions and surgical scarring were also found. March 2012 – another lap, with laser ablation and radical surgical resection of my scarring, adhesions and excision of endo from my utero-sacral ligaments.

I have NO children, and am 41. I lost a baby due to miscarriage in early 1994. Late 1994, I was pregnant again, but ended up having a termination, as my ex-boyfriend decided he did not want to be a dad. I was easily coerced into having the termination, as I began to bleed again during the pregnancy, and was terrified I’d miscarry again.

Talking recently to my mum, she tells me of a family history of miscarriage and menstrual problems. Mum miscarried once before having me, and also had period problems. Her sister had a hysterectomy for fibroids and other associated period problems. My nan had Anaemia and menstrual problems. I have a cousin with endo, and Breast Cancer, and a further aunt who died of Ovarian Cancer.

I am in constant pain, and rarely get a week every month that is free of symptoms. These include bloating, upset stomach, nausea, water retention, chronic pain, fatigue, cramping, and heavy, irregular periods. It’s been confirmed that I have Endometriosis, and my Gynae says it’s probable I have Adenomyosis as well. I also have Anaemia, Asthma, Chronic Sinusitis and M.E. NO treatment so far has worked.

I am DESPERATE, and considering hysterectomy as a last option. I am so scared and upset. I have no idea what to do for the best. I cannot stand my symptoms any more. They have ruined my life. But I am also scared of what I may feel once I have lost my final chance to have children. I already feel a failure as a woman.

Please, does ANYONE have any sensible advice?

Thanks,
Elaine.

P.S. I’m campaigning for better recognition of gynae complaints (including Endometriosis and Adenomyosis). I’ve lobbied my local M.P. as well as NICE, and the Department of Health. I’ve contacted several charities such as Endometriosis UK, and hope that things can be achieved.

I’d love to see these complaints better treated and more quickly diagnosed by medics – also taken more seriously. Further, I feel that their debilitating effects should be more readily acknowledged as disabilities. The public, and the health professions, need to be more educated about gynae problems and their symptoms and effects.

I am looking for women who are prepared to help me put together a petition to be placed before Parliament, asking for the issue of gynae problems to be better addressed. If anyone wants to get involved in this, or to know more, please feel free to e-mail me.

Thanks. My e-mail is: elaine-ellis1@hotmail.co.uk

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