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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.

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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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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

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Linda Parkinson-Hardman

Transformational coach and founder of the Hysterectomy Association. Professionally I'm an information scientist who specialises in the adoption and engagement of digital technologies. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

This Post Has 14 Comments
  1. I just had a hysterectomy a week ago. I have been in constant back and pelvic pain for over 4 years. Also highly fatigued. I had very heavy periods as a teenager and would end up dry heaving and in bed for the first 24 hours. Over the years, I have experienced very heavy periods with blood clots.

    About a year ago I was sick of being sick and tired and decided to get proactive. I went to my gyno and he did a ultrasound. What they found that I had several fibroids. We discussed my options and my discomfort and he stated that having a hysterectomy may be the cure.

    I am a 45 year old woman and have never had children and always wondered why??? My Dr. stated that he could put me on some medication that would shrink the fibroids but that as soon as I stopped that treatment the fibroids would grow back. Seeing that I am most likely 10 years away from menopause I just opted for the Hysterectomy. The BEST thing I ever did

    What was found during the hysterectomy was that I had several fibroids (even ones that they couldn’t see on the ultrasound). Also, found that I had endometriosis as well as adenomyosis. I have not had any back pain since I had the surgery. I am starting to feel some energy back. I was sore for the first couple of day and am on 4 wks recovery leave.

    I am so grateful that I listened to my body and was adamant about finding out what was going on. My Gyno is an amazing man and really listened to me and worked with me.

    Don’t give up on yourself. I had my tonsils out when I was 40 years old. My Dr. at the time said well it might not be great because you are older and maybe you should just live with them. I finally had it done and he said…boy…good thing we took those things out they were so completely infected. Trust your instincts.

    Good luck ladies. All my blessings to you all.

  2. I am with 41 no children and have never been able to have sexual intercourse without pain, at best endurance; this has lost me a lot of partners over the years and been very lonely. Although the name was waved around ‘adynomyosis’ following a laparoscopy eight years ago, no advice or help was given and no subsequent interest was taken. I have always just felt like a freak with something wrong with me and have never been able to justify myself (despite always feeling I had to), because it was simply all that I knew. I am really interested in any stories of people with this condition without children; a hystorectomy is more or a difficult decision without any children obviously.

  3. Hi,

    I’m so sorry read your letter however I’m also slightly relieved as it’s not just me! I’m 28 and have been in and out of hospital for more scans and examinations than I can remember… having been rudely diagnosed with ‘Your just unlucky’ alongside ‘eat a bowl of bran flakes and yogurt everyday’I feel like I’m loosing the plot and making things up.

    I eventually got an appointment with another GP years ago who sent me straight to the hospital for more examinations as someone had recorded on my notes that i had PCOS but they didn’t know which doctor had recorded this and I had never been told I had been diagnosed with this. The hospital told me that I do have PCOS even though I don’t have enough symptoms for them to diagnose this and that I probably have endometriosis too – they won’t do a laparoscopy as it’s too risky and they wouldn’t do anything anyways. The only outcome I have so far is being pressured into getting the Marina which I do not want and so at the moment I am on nothing and have to take a couple days off work if and when I get a period as I can hardly walk. I’m currently on day 106 in my cycle and as soon as this period makes an appearance I know it’s going to be so painful, I’m scared of it coming (which in turn isn’t helping).

    I will support your cause where I can, something more must be done. Good luck to everyone!

  4. So glad to read positive post hysterectomy stories! I’m 34 with no children and having a hysterectomy this yr due to endometrisos and adenomyosis. I’ve suffered since my periods started at 13 and 6 surgeries later including removal of my appendix and countless cystoscopies for associated IC I’ve well and truly had enough and hope the hysterectomy will be the end of it all and if not I pray it will at least help!

  5. Hi im 34 so ive had the same problems since I started my periods at 9 years old. Finally got put on the pill at about 28 but went though lots of types not really getting anywhere the cramps and terrible pains were crippling me. Id get all sorts of other problems shakes hot flushes to name a few. The pill was helping to reduce the pain while having a period but I started getting these pains in the middle of the night and out of my period times they got worst till they were so bad i went to the docs and sent for a scan endeded up having an internal ultra sound, next day couldn’t walk from the agony I was in. So now the doc recons I’ve got this Andenamiosis and put me on the Depo jab to put my system to sleep. Ive had 8 weeks of hell so far, Pain, Bleeding, being sick, feeling really low, Getting in to a rage over nothing (not a great one) feeling tired. Lots of other symptoms that have got worse. Wondering if the depo has worked for anyone with this condition ive read they try this jab but in the end you end up having it all out. Ive not got any children but never wanted them so im not bothered on getting it all out on that score. Thanks to all and good luck to everyone

  6. Dear Elaine, please feel free to visit the main Adenomyosis Advice Association website for support, advice and information. I completely agree, that the awareness issue is very hard to try to push, and this was why I set up the organisation in the first instance and have created a global petition accordingly. Please feel free to contact me directly if there is anything that I can do to support you further at info@adenomyosisadviceassociation.org. Kind regards, Danielle Wright, Founder, Adenomyosis Advice Association

  7. Hi Elaine

    I would love to become involved. I currently have a diagnosis of adenomyosis. I have chronic pain pain during sex which is ruining my relationship. I feel at the end of my tether.

  8. I too had problems from when i had my first period (14) was put on the pill at 16 to help it did help me a bit Thank the Lord.I was diagnosed with cronic fatigue syndrome at 30..I have had 2 children and had completed my family when I found out I was pregnant 7 years ago.Iwas costantly spotting and had been having bad periods for months before I found out I was pregnant.I had a miscarridge which was hard but I know was for the best(my youngest is autistic and doesn’t cope with babies) And I was so tired all the time I hand a d & c which helped for some time but as I got older my periods became more often and heavier. Last summer I saw the specialist for the first time had a polip removed and a mirena fitted but things still got worse (also taking nothesterone to stop the bleeding) In feburary this year I feel like i was in shock so I saw my gp they did a blood test and found my blood count had dropped from 11.9 to 10.5 in about a month so they refered me back to the specialist I told them I wanted a hysterectomy as I’d had enough got an appointment 6 weeks later 22 may I had my hysterectomy 4 weeks ago and feel great, the first thing anyone who sees me scince the op is how good I look. I do get tired easily but not like before just waiting to see how I recover already trying to do too much always was my own worse enemy.I am glad I had had my children and didn’t have to face what you have to which I think would be very hard Thank you for sharing your story
    I canot believe I written so much and thank you again for sharing it helps to know ther are others who’ve been though similar things as I have

  9. WOW, Thank you so much for sharing your story, I thought I was the only one who felt like this, had these symptoms and misdiagnosis etc. I read out a couple of paragraphs from your post to my hubby whose response was what website are you posting that on!!!!!
    My career has suffered too, I soldiered on until after the hysteroscopy and mirena coil fitting last year which came 8 months after I was diagnosed with Chronic Fatigue Syndrome/M.E. (so those symptoms had been going on for at least 6 months before that diagnosis is made and I probably hoped it would go away for up to a year before really complaining about it). I can’t really blame an unsympathetic boss as I ran my own business, I just couldn’t physically or mentally do it any longer, and managing staff was impossible with mood swings, anaemia, fatigue, pain etc, so 1 fulltime and 3 parttimers are now unemployed as well as me.
    I asked for a hysterectomy 7 yrs, 5yrs, 3 yrs ago and was told I was too young and things weren’t that bad! Last year I went private to a Gynae whose special interest was pain and cancer ( the only one in NI whose special interest is not IVF and multiple birth) who told me I would probably need bladder repair as well and that he couldn’t do the Hysterectomy without first trying the mirena or abalation under NHS guidelines.
    Now I’m waiting for a dynamic bladder test to see if I need a repair at the same time as my hysterectomy and wondering how much they will propose taking away. Should I insist everything goes, ovaries, cervix the lot or be a good little girl and do what they say?
    BTW I have a history of ovarian cysts, had first removed age 10 when admitted with suspected appendicitis, 2nd age 18 after sudden and heavy periods then agony pain, and several over the years since confimed by scan at A&E which burst themselves whilst waiting for Gynae to respond to paging. The only time I felt truly fit, healthy and at peace with my body since periods started was during both my pregnancys!
    Elaine I will email you personally to lobby what I can.
    Anyone who has had similar problems and improved post hysterectomy please let us know.
    Apologies if I have ramble/vented in this post

  10. Hello Elaine and all. I am about to head to GP for my mirena coil to be removed. Receptionist promised that GP can do today although I’m not assured by that. Tried Nevesterone and had dreadful reaction. Four fibroids 4 days off clotting so bad it frightens me in 2 months and I feel dizzy and lightheaded all the time. Good luck Elaine and I will help in anyway I can.

  11. Hi Elaine

    I have just finished reading your letter and its as if you have written my story. I am 37 and had a full hyterectomy 7 weeks ago. I fault with my consultant this time for 2 years before he agreed. He said I was too young. We tried many procedures before this totalling 5 surgeries in just over a year. When he came to see me after the op he said that I was right and it should have been done sooner. Due to the endometriosis and addetions and ablations I had due to previous surgeries by bowel and bladder had attached and wrapped them selves to my tubes and i was very lucky not to need a colostomy bag and long term catheter. I am 7 weeks on now and standing up right for the first time in years, I am pain free and have a smile on my face. I was so depressed and never felt so alone in my life. My husband left 2 years ago he couldn’t deal with my depression and the financial burded as I was just to ill to work. A huge blow, I hope now i can get back to work and get fit again and live a normal life. My fear is for my daughter she started her periods and 10 and half the same as me and they are already heavy. I hope that there will be more support and understand when and if the time comes for her. I only found this site after all my problems when I was looking at the different HRT options for me, I see my consultant tomorrow for a check up and discuss HRT. I don’t feel so alone now just reading other ladies stories, just proves to me I have not been a drama queen.

    I wish you lots and lots of luck with your campaign it is so needed. Thank you xx

  12. Hi Elaine, so sorry to hear about the dreadful time you are having. I had an abdominal hysterectomy 3 weeks ago, removal of the cervix and conservation of ovaries. I am 47 years old and have one child. My problems started in my early thirties once I stopped taking the OCP to try for a family. I had 2 miscarriages prior to conceiving my daughter (age 35) and then had a difficult pregnancy with bleeding for the first 3 months and a prem birth at 30 weeks due to pre-eclampsia. My period problems continued. I tried many different contraceptive pills, herbal remedies, Depo Provera and eventually I was sterilised. Prior to that the Mirena coil was mentioned and I had a hysteroscopy to check my uterus. I declined the coil as it was more hormones and they just didn’t suit me. My periods got steadily worse, very painful, flooding, then back pain a week later which lasted around a week. I was very lucky that I had a supportive manager as I had to have time off work as well. I could not get an answer as to what was wrong with me and I felt such a fraud going to my GP with the same thing time and again. Last autumn, I went back to see him and asked for a gynae referral and said I wanted a hysterectomy. My GP said he felt that was unlikely to happen as the Consultant would want to try a coil or endometrial ablation first. I went to see the Consultant last December (a lady who had previously carried out my sterilisation) and told her what I wanted. She examined me and said that I had adenomyosis (which I had never heard of before), my uterus was the size of a 4 month pregnancy and it was retroverted and pressing against my bowel and said yes, I did need a hysterectomy. The relief I felt that there actually was something wrong with me and I wasn’t just a neurotic woman complaining about her periods was immense. As I have said, I am 3 weeks post op and recovering well. I had a vaginal infection after I came home from hospital which cleared up on penicillin and I am getting better every day. I appreciate its early days but so far so good. I did not have the situation to deal with of not having children and I can only imagine how difficult that must be for you. However, I can only say that to not have the thought of my periods dominating my life ever again and not having the pain and sickness is such a relief and the fact that I was taken seriously at last. Whatever your decision, I wish you well and all the best for the future. x

  13. Like you Elaine I have been suffering terribly but only within the last 3-4 years, no where as long as you have. However, the impact this has on our lives is so detrimental, I personally have been receiving counselling as last year I nearly walked out on my family, my career and my life, I was in a desperately miserable place with no one to turn to. I have now elected to have a sub total hysterectomy after the endometrial ablation had no affect whatsoever. I am scheduled for surgery May 24 and although apprehensive, I am satisfied I have done my research and have elected for the best type of hysterectomy and procedure for me. I was told and had verified during my research that it is dangerous to fall pregnant after an ablation, the endometrium would not be stable to support a pregnancy, so with that choice now taken away I felt there was no point suffering any longer as it is time to move on with my life. Thank you for taking the reigns with this subject, I wish you the very best. X

  14. Hi ,Elaine,my heart goes out to you Im so glad I found your story and that someone besides me wants to lobby to get all these problems better made aware of.I was finally diagnosed last may with cancer in my uterus and ended up thank god with a hysterectomy and bi-lateral salpingectomy after thinking that the bloodspotting was due to my thyroid problem or tablets and radio active iodine treatment or just my body being a bit sillly being my age.and like you going throughmany doctor and hospital visits to no avail ie.your ok etc,no I wasnt when they got their act together and examined me that way and I had scans etc MY GOD I was told the worst my god it ripped the hell out of our lives,.so yes Iwill support you and I wish you all the best and hope theyhelp you soon so you can feel well again Iknow the road is long and physically and mentally painful.

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