Has anyone been diagnosed with ovarian remnant syndrome?

[lunanix]

[Impatient]

I don't recall anyone mentioning in on the forum lunanix. It's quite a rare event following surgery to have ovaries removed, to endo up with a bit of one left behind to cause a lot of pain and still keep working by feeding oestrogen to remaining endo.

what has your gynae suggested for you? I hope they will offer you speedy surgery to finish the job they should have done properly in the first place.

with ovaries coated in adhesions and endo and sometimes cysts too, and possibly glued on to other neighbouring organs it's not too surprising that sometimes they don't manage to get it all removed with a lap op. Just very unfortunate when that happens as it leaves you facing yet more surgery, meanwhile in a lot of pain. Hugs to you.

[Impatient]

Just used the search box on the forum and one of the endo-volunteers has had it.

endometriosis-uk.healthunlo...

is the link to the thread of discussion. If she doesn't read your post might be an idea to send her a private message.

[San-ferry-ann]

I had this after an open-surgery hysterectomy performed at my local hospital - where both ovaries were supposed to have been removed. Luckily I then changed to a centre of excellence for endo and had a radical excision of the peritoneum and the offending ovarian tissue removed. That was Nov 2011 and though never pain free my symptoms did improve for a time. Getting worse again so going to a new centre of excellence at the end of the month (just my luck - the great surgeon i had retired to go private).

[lunanix]

Hi, thanks for replying to my question. I have had it come back twice in 18 months, and very ill again now...I know it's back but consultant basically doesn't want to know, and wants to send me to a pain clinic!!

I have asked GP to send me for a second opinion.

Just wondered if you are in uk? and if so where have you gone as you mention you found a centre of excellence? Feel I need to see someone who has a proper understanding of my conditions... Been massively misinformed by consultants so far, and really need to get my life back!!!

[Linham]

I had a radical hysterectomy with full pelvic clearance in 2000 Hav had symptoms for 20 years which were diagnosed as IBS had some tests done recently which resulted in CT scan which showed 8 cm ovarian cyst ! Was shocked saw Gyn who said not possible must be on bowel MRI confirmed that I Hav a cyst attached to ovarian tissue to my small bowel and to pelvic wall Gyn seemed reluctant to remove I am 63 yrs old concerned about ovarian cancer although CA125 is low

Hav insisted on both cyst and ovarian tissue being removed Is this ovarian retention syndrome Consultant didn't mention it found out by my own research

Any advice?

[Linham]

Symptoms for 10 yrs not 20

[Lily76]

I was diagnosed with ORS 7 years after my left ovary was removed. None of the doctors in the health system my surgeon is affiliated with had even heard of the disorder. I have had a full hysterectomy in 2005 and both ovaries removed (right one in 2005 and the left in 2008). Within months after the left ovary was removed the pain started. I could only describe it as a ruptered ovarian cyst. The doctors all treated me like I was crazy or trying to get pain meds. I went through many tests not even remotely related to the real problem. When I was going through all my medical records recently, I found multiple times a radiologist put notes stating they thought they saw ovarian tissue but nobody looked further into it. In September 2015 I had the remnant removed. It was covered with cysts and was almost the size of my original ovary. I can't take lupron or any other meds for ORS because I'm allergic. Now its a little over 2 months after the surgery and the pain has started again. I'm so frustrated! And I can't do anything legally! I had a lawyer who was helping me but the court declined the case because of the complexity in the issue. I've had a total of 13 surgeries for reproductive problems. I've lost 2 babies. I'm so exhausted and mad that this is happening. I really think doctors should be held somewhat responsible for not telling patients about this possible rare problem. I'm putting in a formal complaint with the state medical board. I know that won't really go anywhere but I'm hoping to raise more awareness on ORS so others are aware of the risks. It sucks to be in pain like this and to not have a single solution...

Feeling very alone and disappointed....

[newz in reply to Lily76]

I really feel for you lily as am in a similar position. Had a hyst 18 months ago but pain persisted so 3 months ago I had another lap to remove an ovarian remnant. Can't believe that the pain is still here and hormone results show I'm producing oestrogen so I'm convinced the remnant is still there and active. Consul does not want to know so feel like I've been left to get in with it. Would love to find a consul who has expertise in dealing with this and could remove it once and for all.

[Kaern]

Ya me I need help