Ovarian Remnant Syndrome

Posted , 6 users are following.

Twenty years ago i had a total hysterectomy with removal of ovaries, at the time i had extensive endometriosis. Sixteen years ago all the symptoms i had prior to surgery returned (except the bleeding) I continued to have lower left sided pain, problems with bowels and bladder, back pain and indegestion. I saw numerous consultants including the Gynaecologist who did the hysterectomy and they all indicated the pain was "not real",because the pain i had previous was so severe, i was now suffering from pain that was "all in my mind", i also despite having my ovaries removed, didn't have any menopausal symptoms, (when i told one Dr this they replied "arn't you lucky"), None of the doctors i saw did any further investigations after their relevent investigations proved negative for example the bladder consultant did a cystoscopy and found nothing and discharged me, likewise the bowel doctor etc. I ended up at the pain clinic and have been on morphine for 12 + years. I was very upset by the way i was treated by the Gynaecologist, as i suggested at the time what it could be and he dismissed it. In July 2014 i began to suffer very bad indegestion, i was refered to a Gastroenterologist and had an appointment for January 2015, i was refered for a MRI scan, which i had in March 2015, all was ok with mystomach and bowels but a "cyst on the left ovary" was noted 

But i havn't got any ovaries!! A further MRI scan and a Trans-vaginal Ulra sound scan indicated i had an 8cm cyst on an ovarian remnant,? 

The Gynaecologist had left a tiny fragment of ovary at the time of the hysterectomy and this had regenerated and was producing hormones. During the last 16 years i have had episodes of acute abdominal pain and vommiting and although the doctors have suggested that it could be various things, i now know that these episodes were ovarian cysts bursting

On Wednesday 1st July 2015 i had a laparoscopy/laparotomy to remove the cyst and ovary, the operation proved very difficult as the remnant was stuck to my bowel and bladder and the Gynea surgeon had to get help from a general surgeon, i was in theatre nearly 3 hours, when i returned to the ward (on my own bed) i had a wound drain, a catheter, a morpine infusion and as i am a diabetic a insulin infusion, also i had an oxygen mask on I had 8 sutures removed from a "bikini cut" and 2 sutures removed from my belly button area on Monday 06th July, and then discharged home, 5 days after surgery (which i think is too soon as since then my wound has opened up and is very red and sore and oozing)

I am very disapointed with all the various doctors i have seen over the years, and if anyone is still in pain after a hysterectomy, don't let the doctors dismiss you. Ovarian Remnant Syndrome is rare, but it can and does occur. Sorry for the very long story, but am not feeling too good at the moment and i just wanted to get my story "out there" 

3 likes, 3 replies

3 Replies

  • Edited

    PS i also had extesive adhesions, which is why they couldn't do the surgery via the laprascope 
    • Edited

      Wow this is crazy!!

      I had a 14cm dermoid cyst removed of my right ovary in October last year through open surgery.

      I was wrongly diagnosed 3 times through hospital admittance!

      I am still under gynaecologist at hospital as I have blood cysts now. But about a month after surgery I felt like I had another cyst and I told the gynaecologist and she basically told me no chance and said I was feeling things!! She looked no older than a teenager! I left there feeling so sh*t about myself!!

      Since I have had 3 transvaginal scans all revealing blood filled cysts growing in my ovaries that aren't passing as they should.

      This passed week I have had pain in my ovary area and heartburn and felt so tired. All symptoms of before but my next transvaginal scan is not until November sad I just hoping it isn't another dermoid growing.

      I must say the only time I was happy with my hospital was when I had my surgery they did amazingly and my surgeon even took pictures for me of what they removed as I requested.

      If you ever want to talk about anything feel free to message me or email me

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • Posted

    Hi there. I hope this message finds you well. I just want to say that at last I have found someone with similar symptoms and has had negative experiences with professional advisors. I've waited over one year for my poor health to be sorted and still am. I'm on the waiting list for surgery and I prey it comes anytime now because I can not take this pain no more cry.

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