Any advice or experiences would be much appreciated.
I had a total hysterectomy in July 2018, left ovaries in due to age. After 3 months the pain was back, so in November 2019 had returned endo removed plus both ovaries. Given Tibolone for menopause and only suffered with hot flushes. Unfortunately pelvic pain has returned, been to see consultants again, who’s suggested another laparoscopy!
Has anyone, had this, have they had endo returned even after ovaries removed?
Please help, I’m so confused as how this can happen ☹️
Big hug 🤗
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bighug
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Hi BigHug,I heard a talk from a gynaecologist (Endometriosis UK site), who said that if there are some endometrial-like tissue areas left in the pelvis after a hysterectomy, that can hurt.
Later, a consultant explained to me that sometimes, some endometrial lesions can be very hard to see.
I saw some images on the internet that although some endometrial lesions can be the colour of dark blood and easy to see, some can look almost like little clear-yellow bumps, and those are trickier to see.
I'm just guessing, but maybe you had some hard-to-see endometrial lesions that your surgeon didn't manage to remove in the earlier surgeries.
Perhaps a lap now would let the surgeon see and remove them?
Hi Moon_maiden,Do you have any clues for your case why the pain may remain after hysterectomy? I hope something will come to light for you.
I'm highly likely to have a surgery, and I may have the option to choose how much to remove. So, of course, I was wondering if the surgeon might be able to clear away most of the endo.
When I saw the consultant a few months before op I said to make sure he looked everywhere for endo. After op, the discharge letter and his follow up letter mentioned nothing about bowel, bladder or anywhere else. There were a lot of adhesions in getting the uterus out. But they all apparently stopped in that area 😂I still get issues bending, standing, sitting up, can’t eat much, etc and gastro isn’t interested so I’m thinking there are adhesions. His answer when I asked if endo on bowel, ‘I don’t know I’m not a bowel surgeon and you’d need a laparoscopy to check’ 🤦♀️ 🤷♀️ He offered to refer me to colorectal, considering I’d been referred as an an endo patient for MDT I knew he’d never spoken to anyone else, even though he told me a bowel surgeon would be there. I’d been told most of the year that’s what the wait was for.
Do make sure you get it all in writing what will happen and any endo removed. If any remains it can still cause problems even with hysterectomy.
I see a different gynae next week. Thought I had it all sussed last year.
If I find out there is he’d better run for the hills 🤣🤣
Hi moon_mainden, thanks for your reply, it’s interesting to hear if anyone else suffered after everything removed. I was also told there would be a bowel surgeon in my surgery if needed, apparently it wasn’t ‘I’m not so sure now’ 😏 so my consultant has booked me in for another laparoscopy and a colonoscopy this time, I’ll be so frustrated if it’s in my bowel, it feels like it’s never gonna end 😕
Hope you get some answers too, take care and let me know how you get on next week, big hug 🤗
I had my hysterectomy 15 months ago and since July last year the pain has returned, mainly in a bulge which developed 5 weeks after the surgery left and above my horizontal incision. Also started HRT at this time and have issues sitting for long or standing, with digestion and pelvic pain in general. Having been discharged by consultant I had to go back to GP and several months later have just been referred to alternative hospital . It’s a battle. I want to know if Endo is the reason so I can get the pain addressed. Keep fighting- we shouldn’t have to - but if that’s what it takes xxx
Sorry to hear you’re suffering again too, I had to get my GP to refer me back after several tests and trying different painkillers. They definitely need to do more research into this disease, this forum is great to talk to other going through the same issues, I hope GPs and surgeons listen to the stories from the people who are actually going through this nightmare. I hope you get some answers and relief soon. Take care big hug 🤗
Hy I'm the exact same as you 😖 every thing removed 18 years ago and ten years later I'm still in pain been signed off by the gyne department as there is no womb,ovaries. Pain clinic helped a lot but now I'm in pain all the time even with a all the meds I'm on so referred to gastro who has now referred me to colorectal surgeon just been for a ct scan hopefully it will show up something. But I know laparoscopy is really the only way to make sure so i would definitely recommend it good luck 😁
Shazmo, you sound like you’ve suffered for a long time, I hope they find what’s causing you so much pain. Hopefully they will offer you a laparoscopy too, they just don’t know til they’ve done one. Take care big hug 🤗
I had problems after my hyster and ovaries removed as not all endo removed and it can produce its own oestrogen and keep growing. I’ve had three further ops to remove endo since hyster. So I’m certainly one of many who didn’t get relief after a hyster or even menopause.
Three further ops!! That’s not good, I hope you are now finally pain free? It’s just so unfair to so many of us. Many a time I’ve heard that after removal of everything, plus ovaries it can’t be endo, how wrong are they, we know how our bodies feel, we don’t just make pain up.
Thank you for sharing, I hope life is much better for you now 😊 take care, big hug 🤗
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