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Endometriosis UK
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Hysterectomy and endometriosis

Hi all. I'm new to this site.

I've suffered for years with Polycystic ovary syndrome and endometriosis. Had a laparoscopy 2 and a half years ago when they diagnosed endo. They fitted the mirena coil at the same time and Said this will help with the symptoms. It did ease the pain slightly for a while but for the past few months now it's all flared up just as bad again! I have asked repeatedly for a hysterectomy as this has such an affect on my life. They keep refusing to do it because of my age...I'm 29 (almost 30). I have been extremely lucky to of had children so I really don't see why they keep refusing. I get it's a big op and not to be taken lightly but I honestly can not go on much longer in this amount of pain! Anyone been through the same or had any joy getting through to the doc's? Xx

1 Reply

I had a hysterectomy earlier this year at the age of 39. I also had my fallopian tubes and ovaries removed, plus extensive excision of endo from my bowel/bladder/ureter/pelvic sidewall. I wasn't diagnosed with endo until I became really very unwell with it - my pain was so bad I was having to go to A&E for pain relief and I would bleed so heavily that I would have accidents and couldn't leave the house.

The problem with early hysterectomy is that just removing your uterus will not help unless you have adenomyosis. They need to excise all the endometriosis tissue at the same time. Studies have also shown that if ovaries are left in, around 50% of women will need further surgery within 5 years. This falls to 10% if ovaries are removed, but this puts you into irreversible menopause, and this has long term negative impacts on your health - we know that women who have this surgery die younger and have increased risk of dementia, osteoporosis and heart disease, and the sooner you are in menopause, the greater the risks, which is probably why your consultant isn't keen. Coping with surgical menopause is really tough even with HRT. The hysterectomy itself affects your continence and your sex life. It is about much more than just fertility.

Can I ask if you are being seen at a bsge centre? You might be able to get a referral to one on the basis that conventional treatment isn't working.


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