Ovarian Remnant Syndrome – Sue’s story

After suffering with endometriosis I decided at the age of 35 that I wanted a hysterectomy (despite having no children). Since the age of 13 I had suffered with severe period pain. When I was 26 I saw a gynaecologist (Mr W), who decided to do a D&C, this did not help with the pain so Mr W then did a laparoscopy. I was diagnosed with extensive endometriosis.

I then began a course of Zoladex injections. At the end of the course I had another laparoscopy and the endometriosis was no more. Was I cured? NO! Three months later I began to have severe period pain again. Another laparoscopy and endometriosis was diagnosed again, worse than before. Another course of Zoladex, but this time the pain became unbearable and I was flooding.

I saw another consultant and had 2 pre-sacral neurectomies (where they cut the pre-sacral nerves to stop the pain) but these operations which were laparotomies did not help; and that is why at the age of 35 I had had ENOUGH.

So, on the 4th July 1995 I had a total hysterectomy and removal of both ovaries. As I was nursing at the time I had three months off work. I had no complications (unlike the PSN laparotemy’s, where I had a wound infection after both operations). I had hot flushes and night sweats so went on HRT, but could not tolerate it so decided to come off it. I still had the hot flushes etc, but I coped.

I was ok for about 4 years, and then the hot flushes stopped, the pain returned (mostly on the left side). I had bowel and bladder problems, back pain and indigestion. Had the endometriosis come back ? I saw Mr W (the gynaecologist) and he was adamant that there was no way that it could be endometriosis. and so began many years of seeing bladder, bowel, and other consultants who after doing their relevant investigations didn’t know why I was having these symptoms.

One doctor even suggested that as I had suffered so much pain in the past my body now expected the pain; in other words it was “all in my mind”. Oh no the pain was real and was getting worse, as was all the other symptoms. I ended up at the pain clinic and was prescribed morphine!

Over the years the dose has been “upped” as when I saw my GP and told them about the pain getting worse she just gave me more morphine. I saw Mr W again and I mentioned to him that I had read about ovarian remnant syndrome (where, if part of the ovary is left behind it can regrow and even produce hormones) he told me that there was “nothing left behind as he had made sure of that”. Also despite being admitted to hospital three times with abdominal pain and vomiting (and another 5 times when I didn’t go into hospital) the doctors could not find the cause of the symptoms. I think these pains were caused by cysts bursting.

In 2001 I was also diagnosed with diabetes and post viral fatigue syndrome and sadly I had to retire from my nursing job. Four years ago after having an MRI scan (which was one of the most horrendous scans I have ever had as I am claustrophobic) I was also diagnosed with a herniated disc in my lower back and have to use a stick when I am walking.

Last year (2014) I began to suffer with awful indigestion (which I had suffered previously and the treatment I had been given had helped), but now nothing eased the pain and I was living off complan drinks. In January this year I saw a doctor at the hospital and he ordered an MRI scan of the abdomen. OMG, I nearly didn’t go for the scan because of the claustrophobia. The scan report was that there was a “cyst on the left ovary”? But I haven’t got any ovaries!

I was referred to another gynaecologist, and because of my age had to have a blood test to make sure I didn’t have cancer. A trans-vaginal ultrasound scan (an 8cm cyst found) and a pelvic MRI scan (this time I freaked out but managed to go through with it), and Ovarian Remnant Syndrome was diagnosed. At last, it only took 16 years.

On the 1st July I went to the operating theatre for a laparoscopy, to remove the ovary and cyst. But due to adhesions I had to have a laparotomy to remove the cyst and ovary that was stuck to the bowel and bladder and the adhesions. I was in the theatre for 3 hours and the gynaecologist had to get help from a general surgeon.

I came back to the ward on my own bed, had two IV infusions, a catheter, wound drain and was on oxygen. I was kept in hospital for a further 4 days. I was discharged on the 6th July after having my sutures (two in the belly button and eight on the previous PSN and hysterectomy scars) removed. I told the nurse that I had had problems before with wound infections and reminded her that I was also diabetic and therefore took longer to heal, but she went ahead and removed them! Too early I think.

A week later I had to get my GP to come out as I had a wound infection and was prescribed antibiotics. Tomorrow will be 4 weeks since my surgery and I am still in pain, and my wound is gaping on the right side and bleeding. ovarian remnant syndrome is very rare, but can and does occur. Apart from the radiologist and the gynecologist, none of the other doctors, nurses and ultrasound scanning staff had heard of it.

If after your hysterectomy and removal of the ovaries you are still having symptoms, (especially pain) insist on an MRI scan or a CT scan don’t put up with the pain like I did. Sorry it’s a long story (one day I would like to write a book), thanks for reading.

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6 comments

  1. Catherine
    I am so sorry for the long delay with my reply
    I was busy taking care of my mother who has Dementia (she is now in a Care Home)
    Today 18/02/2020 I am still in pain,(lower left sided) still having episodes of vomiting, still taking the morphine and still battling with the Doctors
    I used to live in Wythenshawe, Manchester, UK but 11 months ago I met the most wonderful man Pete and we live in Droylsden, Manchester, UK
    I am hoping to transfer to a new GP and will hopefully get one of the Doctors to listen to me
    I hope you are ok
    Sue

  2. I was just diagnosed with ORS. I’m scheduled to have surgery Monday morning. What I’ve read about ORS it’s due possible error on the Doctor’s

  3. Please how do I get help … this has been going on with me . Four years ….back hospital in Friday 9/12/16 . Had a scan again yes a overy with cyst . Send me home with morphine … they try to tell me it’s all in my head .. your story is my story.. I have got a colostomy and they keep saying the pain is from my stoma . But I now it the overy. That as come back and I have got reports from .MRI scan ct scan ECT ECT and they all show and the same left. overy with cyst.

  4. I have had ORS after a total hysterectomy 2008 but leaving my right ovary which was attached to the ureter. Had multiple a&e admissions with acute (and I mean unbearable) pain since, yet no surgeon could diagnose the reason despite still having the right ovary! Diagnosed myself from Google and insisted on second opinions until finally had surgery again to remove the mass. Think no surgeon wanted to touch me due to potential risk of ureter damage. Traumatic dealings with medical professionals who simply did not believe me when I said that the pain was identical to pain prior to hysterectomy. After major surgery, a week later I developed a blood clot or swelling on ureter which blocked causing life threatening infection and blockage! Ended up with a nephrostomy (tube in kidney through my back) , to drain kidney manually for a month. Then had a stent fitted, for a month, finally all removed and after a year long recovery, have started hot flushes and sweats of the menopause Yippee! 2 years and all is well after having pain since 13 years old ( now 51) — feeling best ever felt. Warning though don’t be tempted to take het or supplements containing plant oestrogens as it could stimulate regrow of ovarian remnant. Just take sage leaf extract for hot flushes which help.

  5. Hi Sue. I have been diagnosed with ovarian remnant syndrome after a laparoscopy a year and a half ago. I have had previous surgery for endometriosis, had pelvic infections and had a total hysterectomy 6 years ago. I’ve had numerous nerve blocks, pain medication and zoladex for 15 months and now I’m having surgery to remove this ovarian remnant on my left side. My gynaecologist is, like yours, a Mr W and he’s doing the surgery with a gynae oncologist. I just wondered how you were doing now and what part of the country you’re in. Was surgery successful?

  6. Your story is just like mine. I am on my 4th ovarian remnant and have had 9 surgeries, one just yesterday, to remove organs and remnants piece by piece due to the adhesions and endometriosis. I do have a great Dr now but it seems like a never ending story. Thanks for sharing your story, it helps to know we are not alone.

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