Julies Endometriosis Story

I was diagnosed with Endometriosis back in 2002 after complaining of pelvic pain for a few years before that! The condition was discovered during removal of a damaged fallopian tube, the endometriosis was in the tube removed.

Later pelvic pain continued and the remaining tube was removed after blue dye proved it was also damaged. I later continued to suffer pelvic pain and lower back pain and after being sent to a Physio for back pain and counsellors to deal with depression and anxiety made worse by the ongoing pain then had a hysteroscopy and laparoscopy where extensive endometriosis was found and that was in 2007 5 years after it was first discovered!

Adhesions had stuck my ovary to my bowel and tethered my fallopian tube stump on the other side to my bowel, in a nutshell a right mess! on top of that endometriosis and adhesions were found around my belly button it had crept into my abdomen.

The operation was not pleasant and I spent days in hospital recovering from what originally should have been a straight forward procedure and morphine disagreed with me. The pain relief two weeks after the operation was stunning for the first time in years I felt great no pain but alas as the months went by the pain crept back and intensified. Zoladex injections were the next step directly into my abdomen monthly to send me into fast tracked menopause and synthetic HRT Tibolone.

The Gyne told me if this worked it was endo causing the majority of my problems if not it was adhesions. After 4 months I felt no noticable change in pain and discomfort so they took me off both. The pinching has just got worse and worse to the point I often cannot bear even slightly tight waistbands on trousers and had to buy baggy oversized trousers. The pinching is worse when i sit, a bit improved when I am upright and walking and gets steadily worse before my menstruation which is now all over the place due to natural menopause (I am 52). I can only describe the feeling as someone placing my ovary in a clamp and twisting and pulling it, it makes me feel quite sickly. I start to feel quite unwell for two weeks around the average time of menstruation and up to a week after, thats if I have one at all, I am ridiculously tired and have horrendous bowel problems rangeing from constipation to diarreoh accompanied by internal and external piles and often fissures, bloating, low back pain and I wake every single day with pelvic and right hip pain. The pain seems to always come from the right pelvis yet apparently most of the endo was found on the left.

However there is yet another twist to this story a CT scan recently revealed I have Diverculitis Disease and a small Hiatus Hernia along with a mid high prolapse and IBS.

So as things stand I am pretty uncomfortable for most of the time although it fluctuates wildly. I have been offered a Bilateral Salpingo Oopherectomy which Gyne said he could try laparoscopy to remove ovaries but if he found endo/adhesions were extensive again he would have to revert mid op to a full abdominal hysterectomy BUT he warned me that the adhesion risk for me was high as I am one of those people apparently prone to adhesions and the operation could actually make things worse!

So finally I’m in limbo land right now and do not know what to do for the best it feels like a huge wild gamble either way. I’ve decided for now to live with the awful pain and keep popping pain killers and stool softeners, anti spasmodic medication and sleeping pills but its really not fun and has turned me into a bit of a recluse and an anxious one at that! I know of course I am far from the only one to go through hell but its nice to get it off my chest, thanks for reading it to the end.


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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  1. Thank you for sharing your story, I have had a subtotal hysterectomy and bso because endometriosis and adhesions. Am having night sweats and mood swings and not sleeping I think due to menopause but am trying to decide if I should go on hrt or not. Thank you x

  2. Thank you for your post. At last i’ve come across someone with similar conditions ie endometriosis, adhesions and diverculitis disease (I also have a hiatus hernia & prolapse). Anyway Rebecca you have my total sympathy. I would be interested to hear how you get on with the hysterectomy is it a full or part?
    I am in pain as I write this, my pelvis has been pinching right side intensely all weekend, can’t bear anything tight around my waist so my trousers often fall down! It’s wierd even eating or drinking seems to make it worse and bladder seems irritated all the time. I am back and forth to the loo during the night
    and constantly search for answer. I am sure because of the added complication of diverculitis the symptoms are both stomach, bowel, bladder and general pelvic. I also ache all over especially low back and am very very stiff getting up and pull myself up from sitting. I know in my heart at some point I will probably have the hysterectomy but I am so scared as I had bad experiences in previous op and I live alone with a cat so I worry about the cat and how I will cope alone. I can’t afford private care and my parent’s are elderly and live a long way from me in the countryside with their own health problems.
    I just chug on with painkillers, stool softeners, anti spasm medication and sleeping tablets, it is not a life!
    I completely relate to the desperation you feel and isolation (anxiety), if I am honest there are many days I don’t feel like carrying on but somehow I do, it is a horrible to live each day with all this going on and trying to function at all. Be strong.

  3. I am so sorry to hear this Julie, your story sounds very similar to mine….endometriosis, divertilar etc. I have had similar treatment plans and operations, even the zoladex injections. I live on all those kind of drugs including high levels of morphine and oramoprh, i am like a zombine most times. I am suffering deep depression n anxiety- to the point i was sucidical and had the crisi team working with me. I have lost my job as a midwife due to being dismissed on health reasons- long periods of absenses. I can’t live like this anymore so i will be hopefully having an hysterectomy (total including ovaries)- i have my gynae appt tomorrow where big decisions will be made….my gynae is keep for me to go down this track. I am only 27. I do have 2 children luckily or i do not know what i wouls do. I cant take no more 🙁 i am so scared. I hope you find some ease with your constant agony, other than just painkillers xx

  4. Hi Julie, I too had endometriosis, adhesions and IBS, from the age of 14. At the age of 35 I finally called it a day and chose a full hysterectomy (my decision was based on research informing me that endometrioses cells can break away and grow anywhere in the body?) These cells then grow and form another chocolate patch causing more pain. Endometrioses killed a women who’s cells had travelled to her brain?

    For six months i was placed on HRT which would not feed endometriosis should any cells remain lurking within? Then I was taken off these and put on Estraderm patches to keep me young – my doc said 🙂 I am now 45, ‘still young’ and although I obviously still have IBS, the endometrioses never returned……………….normal at last relatively speaking!!


  5. I cannot believe you’ve been through all this….. It sounds horrendous we are supposed to be in the 21st century not the 16th!! I am only now partly free of back pain which I had for 2 yrs after my hysterectomy, nothing worked but painkillers I had to return to work 6 wks after the op and it was a difficult time for me as me and my partner had just parted ways. I am still recovering psychologically from the whole trauma and feel sad ladies have to go through all this pain and sufffering. It seems I’ve had it good compared to some…… keep smiling & take care