Severe endo treatment. ...hysterectomy! !!

Hello everyone

Im 33 and have been suffering for a few years with pain and trouble going to the toilet and sex being very uncomfortable . I had my first laporoscopy on Tuesday to drain and remove 2 massive cyst on each ovary while they were looking around they found a different diagnosis. ..

I woke up from surgery and the surgeon said that I have severe endometriosis and my ovaries have embedded into the bowel so they were only able to drain the cysts and couldn't remove them this time.

He said my only option is a full hysterectomy and to go on hrt.

At 33 im in shock. Does anyone else has a similar experience or been on hrt? Has it changed life hugely ? Any information would be amazing as I didn't even know I had endometriosis thankyou x

3 Replies

  • Hi, that's just appalling if this is what you are being offered as a first line of treatment, after being diagnosed with endometriosis. The consultant you saw is clearly out of date on endo, a hysterectomy is not a "cure" or the correct treatment for endo.

    Please read this post that I recently put up:

    You need a very skilled surgeon who will remove all the disease, and preserve your female organs.

    If you are in the UK, which region? Are you currently under the care of a specialist at one of the NHS BSGE endo centres? here is the list -

    I highly recommend this book I posted about too, if you can educate yourself on endo, and understand things, you can make sure you are being treated correctly.

    These are other great resources for the up to date info on endo:

  • Your endo needs to be managed by a BSGE approved endo centre. I was given a partial hysterectomy at 35 in a non BSGE centre and it was the wrong treatment. The best thing that has happened to me was coming under the care of a centre since then.

    Where in the country are you based? Have a look on the BSGE site for your nearest. I can recommend one in the West Midlands if you want to pm me.

    Good luck.

  • yes. nearly identical. the only difference is that I had no between time. I went right from sonogram (after ten years of being wrongly diagnosed) to emergency surgery. during the surgery, my doctor discovered stage four endo. he showed the pics to my husband who advised (rightly so) to remove what ever was being effected. woke to a cervix, and nothing else. I was instantly in menopause at 36. I only had one child, wanted more. so. then six months later came the hrt. that was a roller coaster ride to be sure! yes your life changes. you gain wgt, there is hair loss and hot flashes. insomnia, moodiness. for me it's been almost 13 years. I am 49 and stopped taking my premerin Dec of 2014. there was no withdrawal. a few more hot flashes perhaps. but things are fine. the difficult part during all of it was just trying to find the correct level and combination of hormones that were right for me. I took black cohosh for the hot flashes for a few years. there are many more options to help with this and other symptoms. endo is genetic. talk to other females in your family. I wish you great success and pray the Dr. gives you fair options. and the right ones.

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