Total hysterectomy after Endometriosis nightmare

After many years of Endometriosis I finally had Total Hysterectomy & both ovaries removed. I managed 2 months without any HRT but had been on herbal/holistic approach. Unfortunately I developed hair loss & Vaginal atrophy so asked to be put on a low dose oestrogel which for 2 month worked wonderfully but 3weeks ago I started with a painful abdomen.

I had an appointment with my local Dr's yesterday as I'm concerned about pain I'm in at present but they haven't a clue!

I've severe spinal pain from waist to top of bottom & awful abdomen pain that moves around or is generally just painful. I feel terribly sick all the time as well.

Apparently I've not a temperature, blood pressure is fine & I've no pee infection.

My question is could it be endometriosis coming back? Should I stop taking HRT but if it's endometriosis back will it die off again? I'm in so much pain that I'm on pain relief & anti sickness tablets!

Any advice would be gratefully accepted!

Em xx

5 Replies

  • Hi I'm in exactly the same position as you. Its awful isn't it. Going back to see consultant on 4th August as feel like some has been missed. I've also found the last couple of months that I feel like I'm still having a cycle . Hopefully see GP today to organise a blood test to check oestradiol levels.

    I would suggest you do the same and try and get back to consultant.

    Are you due a follow up?

  • Hi, thanks for your reply! I was hoping this pain was just a pee infection but horrible feeling it's not. I'm not due follow up but have sent email to contact at the hospital so hopefully get a response soon. I'll ring my Dr's again & ask for a blood test as you suggested. The doctor I saw yday isn't my favorite person as she misdiagnosed my Mum's cancer but I was so desperate yday I went to see her (NO one else available!)

    Are you on any form of HRT? What are your symptoms? It's a nightmare when you think the future will be brighter & pain free then it all suddenly comes back! X

  • Yeah I started off on livial but the hot flushes were so horrendous I changed over to Elleste solo . Which has helped so much. Unfortunately this was when the pain returned. Spoke to Lindle on here and she has suggested that maybe a piece of ovary has been left creating a cycle or that the endo has already got severe enough to be creating its own cycle.

    When the pain in spine started GP initially thought I had herniated discs, so was sent for mri, which showed everything was fine.

    I was told it was nerve damage, even though there is no evidence to support this.

    I then realised that everything started when I changed the hrt. So it makes sense that it has something to do with endo.

    I'm sorry you are still in pain but hopefully you can get in touch with consultant and get sorted.

    I'm here if you ever need to talk.

    Take care

  • I find it strange you have had a total hysterectomy and having pain? Is the pain similar to what it was before?

    I had a total hysterectomy and had an HRT implant that lasted 3 months I felt great on that. Don't forget you are still healing after a major operation and will take at least 9 months for everything to settle down. After the implant I was put on the lowest dose Premarin for 10 years. My skin hair countless things stayed as they were and the HRT kept me youthful looking.

    When you say you have spinal pain this might be completey unrelated to the op. I have spinal stenosis a compressed discs and what you are describing is indicative of that pain. You could possibly have a problem with your lumber spine. It wouldn't be a bad idea for a decent doc to check it out.

    Please don't worry about anything to do with cancer it would have been checked out.

    Take care and I hope the pain improves for you


  • I've had a total hysterectomy and excision of endo, last year, overies left in, I'm now awaiting another laparoscopy with a bsge specialist centre, as I'm still in pain, and think my general gyne has missed something,

    Did you have excision surgery too, ??

    And was it in a bsge specialist centre or general gyne???


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