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The Hysterectomy Association
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Confused, miserable and in so much pain :( :(

I had no gynaecological problems at all until around 2 years ago when my periods began to be erratic, I would have 2 periods per month and the bleeding was very heavy. I was sent for a scan which revealed I had several fibroids but none particularly large. First of all the GP tried to deal with it by trying a couple of different drugs and then when those didn't work she referred me to gynae at the hospital. The consultant there also tried more drugs then in January this year I underwent endometrial ablation which I was assured was successful in "most women". Since then the bleeding has improved a little but periods are still erratic and the worst thing of all is that I am experiencing a high degree of pain which usually begins a few days before a period begins and then lasts throughout the period and then for a few days following the period usually. It is not normal period pain but the most excruciating pain I've ever experienced and I am literally buckled up with it and unable to function properly and it's affected my work to a huge degree. I am self-employed but we are very reliant on my earnings as my husband is not able to work due to a chronic long term condition. The pain is very low in my abdomen and so severe no drugs seem to adequately manage it. I've tried paracetamol, ibuprofen, co-codamol, naproxen, lately the GP has given me codeine but even this doesn't seem to really go any way to relieving the pain. It's making me so miserable. The gynae consultant doesn't believe my fibroids are causing pain and says this is rare. They are concerned a hysterectomy won't bring me any relief and I've now been sen away to have Zoladex tablets to turn off my ovaries and send me into menopause for 3 months (with add back HRT - Livial to manage symptoms) to see if this will relieve the pain. If it does the consultant believes a hysterectomy would be beneficial. I am worried about what happens if it doesn't! I like to think that hysterectomy will deal with it whatever is causing it because it must be gynaecological surely if it is cyclical? The other possible theory is that I have post-ablation syndrome but it's hard to find any information on this also. Can anyone give me any advice or has anyone suffered similar circumstances? Yours hopefully ... :(

3 Replies

My story is really similar to yours if you read my post I was told I had post ablation syndrome and needed a hysterectomy. I had just heavy periods and pain a bit worse during periods some heavy bleeding but not unbearable but pain all the time really and issues with my bladder and bowel. I have had a hysterectomy , for me it has made pain worse I still have original pain plus hysterectomy pain plus issues from the hysterectomy and it's made my bowel and bladder issues worse. I had been told I had adenomyosis bulky womb causing the bowel and bladder problems and referred for a hysterectomy . I held off the hysterectomy as was concerned bladder and bowel issues hadn't been fully looked at and had the ablation in Dec worse pain ever when I woke up backward and forwards to hospital for months told I had post ablation syndrome and told this in a letter and only cure was hysterectomy. I am also self employed and a single mum with no family around it's been awful :( I had hysterectomy in June and was advised to have ovaries and everything out because of the adenomyosis and had had very mild endo found last year so with all my pain they advise me it would be best l when I came around was told not adenomyosis and everything 'normal' apart from 2 small fibroids :( :( I am so upset , I still have original pains plus hysterectomy issues plus bowel and bladder pains a lot worse I also seem to have granualation on the vaginal cuff menopause is awful. Now I'm told I have IBS and painful bladder syndrome . Feel stupid I had hysterectomy , work is so hard now and now awaiting referral back to gyne to have vaginal cuff sorted out am bleeding and pain all the time. I think ablation caused nerve pain/ damage and a hysterectomy was definitely no help to me we all different but I really regret having the hysterectomy I was just desperate.


MEssage me if you like I need to go work now but happy to message later if it helps :)


So sorry to hear both your stories! I had suffered heavy painful periods from the age of 14. I had 3 years relief from starting at 11. Fast forward 28 years and I just could not cope with the flooding, pain and feeling unwell so I eventually persuaded my gp to refer me to gynae. I was told I had a fibroid but was refused a hysterectomy. I had the endometrial ablation which worked for one month then my periods were back to heavy and painful. Then in march this year I started having excruciating pain in my left ovary so GP did some tests including CA125. This is a cancer marker test. Mine came back high! Suddenly I was rushed to see oncology and had more tests. Turned out I had a very large womb (size of a five month pregnancy), so had a total abdominal hysterectomy on June 20th. Best thing I ever did! No more pain, no more flooding. It is bliss. Just having to deal with the menopause now. Took my ovaries so at 45 I'm completely in menopause. Mefanamic Acid, which are tablets from the doctor, really helped me with the pain. Hopefully all works out well for you, and I would ask for mefanamic acid.


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