ORS

[Linham]

Does anyone know anything about Ovarian Remnant Syndrome?

Have been researching this as a result of 3 months of mayhem at the hands of GP and various depths of my local hospital

Have had years of problems with digestion bowels bloating gas pelvic and back pain have been treated for IBS for about ten years

Recently things have escalated and asked GP to blood test for coeliacs

Wong bore with the incompetence and arrogance attached to that but blood test showed no coeliac problem but did throw up another blood issue at the same time I found z lump under my arm and with no support or discussion was referred to haematology I was shocked to find that I had been referred as possibly having lymphatic cancer Mire delays and incompetence finally had CT scan finally told no cancer but you have an 8 cm ovarian cyst I am 63 yrs old and had a radical hysterectomy 16 years ago which was followed by 12 yrs of HRT I was then referred to GYN strange for someone with no reproductive organs! Was told by GP ... Eventually .. That now that they knew I had ovary/ ovaries/ ovarian tissue my symptoms were giving cause for concern re ovarian cancer Had MRI which shows that the cyst is attached to ovarian ???

To my small bowel and the the pelvic wall fairly near to blood supply I am now awaiting surgery to remove cyst and ovarian ???? Can't be sure about cancer till op and no one knows anything about ORS ???

Confused scared and not very confident Any advice?

[Lily-Anne]

I am really interested by your post, sadly I'm no help though. But it could explain my recurrence. Remaining tissue left behind after TAH resulting in pelvic mass. I'd never heard of it, so this is fascinating.

Do keep us updated, and try not to worry until the results are in.

LA xx

[Linham in reply to Lily-Anne]

Apparently there is lots of information on this syndrome in the US some women have had 3/4 surgeries as the tissue is never completely removed Most women , like me , have been misdiagnosed and many treated for IBS

It was a complete shock to me to discover that I had ovarian tissue and then to be told that the symptoms I had been suffering for years would suggest that I may have ovarian cancer!

Another concern was the type of HRT I was given for 12 years may have contributed to the growth of the cyst. I think one of the inportant things about this is that any woman who has had her ovaries removed... Or thinks she has ... And has these kinds of symptoms should insist on an MRI and not just accept that blanket diagnosis of IBS ... And ask your GYN if he knows about ORS if I do then he/she should too

[TinaB1]

Hello, I'm sorry you're going through this. When I had an Ovarian cystadenoma, I had no Ovaries. It grew from remnants of tissue. Most cysts growing from remnants are benign. I do know that. Xx

[Linham in reply to TinaB1]

Thank you for that ! That is very reassuring x

[Leeds2015]

Hello. Can't comment on your specifics I'm afraid. Try not to worry too much before your op and maybe spend some time preparing a few meals to freeze and getting stocked up for your op. I would be interested to know about what hrt you were on. I was on Angelica for 10 years and part of me thinks this is a factor in me getting cancer. All the best for the op.

[Linham]

Thank you that's exactly what I am doing! Getting my Xmas shopping done and getting some food in the freezer

I can't remember the name of the HRT I was on it was more than 10 years ago that I stopped taking it

I will ask if they have that information in my files

I am anxious about what they will find during the op but also about the extent of surgery required and the possibility of having a bowel resection and stoma There's no way of knowing any of these things until the surgery so it's hard not to be anxious

Keeping busy helps

I am so sorry that you ended up with cancer and wish the very best for you x

[angeladale]

After my second operation to complete debulking , there was no visible disease ...all washed out and clean : but , the surgeon noticed some strange looking tissue and removed it . It proved to have micro OC cells , and I was given a couple of extra carbo / taxol ,having had the usual six already . It begged the question then , if there are latent cells , what triggers them to go mad in some , and not others , as in , recurrence .

Left " clean " , six months later it was back despite everyone's best efforts . As many of you know, I have continued this pattern of six months on chemo , six months off , give or take , with tumours held firmly at bay . Running out of drug options is an issue as I have become not resistant ,but severely allergic to drugs already used .However , we live in hope ....there seems to be stuff we haven' t tried . Surgeons do try to remove everything that looks dodgy , or could be a site for future disease ....but there are villains lurking , and no one knows when and where they will pounce , despite our best attempts to keep them out !

Very best wishes to all of you ....full freezers , forward planning , all help to give control .

[Linham in reply to angeladale]

Thank you I know that no surgeon deliberately does an incomplete job and I have no issues with that What I feel angry about is the years of dismissive treatment by GPs the lack of empathy during this hellish 3 months and the total lack of basic competence even administratively I would never have got to this stage without my own persistence and ability to do my own research I am fortunate that I am an ex nurse . it does not fill me with confidence

All my very best wishes to you for a positive outcome to your treatment x

[bluebell99]

Hi Linham

Your post is like a light bulb moment for me.

Five years ago when I was diagnosed and successfully treated for renal cancer, it was discovered I had masses on both ovaries. I had a bilateral oophorectomy with widespread adhesiolysis, (adhesions due to a previous abdominal partial hysterectomy some 20 years earlier.)

The right ovary contained cysts whilst the left contained cysts and a 10cm benign Brenner tumour. Due to the problems of the adhesions a small segment of ovary/tumour was left and observed to be growing very slowly by each follow up ct scan, the last being last year.

The monitoring was to be continued by ultrasound, which I had a week ago. Yesterday I received a letter that I needed more investigations and to report to the colposcopy suite on Wednesday. Now I am wondering, since I don't have a cervix anymore, if they are looking for something else, and going by your post, if it is bowel/bladder related.

I have been trying in vain to find information about Brenner tumours, only that they are rare. Nobody, not even the gynae oncologist could tell me what happens when a bit is left behind, hence the monitoring.

I have a feeling it may be not good news as I have been called back so quickly, but it is encouraging to know by all of your posts that I am not a rare and unusual case, (don't you just hate that description), after all.

I have never heard about ovarian remnant syndrome before but it does sound that is happening to me.

I wish you good luck and a good outcome for your op, fingers crossed.

[Linham]

You too ! There is lots of information from the YS on this syndrome I think the most important thing about this information is that women like me who have endured vowel symptoms bloating gas pelvic and lower back pain for years and who ate told its IBS can have the right tests done and if it is IRS can have surgery to remove the tenant and hopefully get some relief from years of pain and discomfort Matbe those of us who have hysterectomy should insist on regular MRI to make sure nothing is left and growing

[Hidden]

I had partial surgery 2005 and full hysterectomy 2006 and carbo taxol as my insurance policy. However I did recur in 2010 and I was informed then that the gynae surgeon could not remove my full left ovary because it was entangled in a major artery in 2006 and he was afraid of a bleed out. I think I was a challenge, I still am if you ask me. I was actually floored when told this because I knew nothing about it. He didnt discuss it with me or if he did post op I was unable to take it in. I remember nothing post op but waking up in recovery in gynae unit. So I have had recurrences and always will The strange thing is that this side was originally borderline and the right hand side was the one with malignancy which has not recurred on that site.

[Linham]

Initially I had gone to theatre to allow them to 'have a look' after two years of GYN problems including bleeding which lasted for 5 months almost on a daily basis It started off as an exploratory laparoscopy however what then happened was that a 12 cm cyst burst and they had to convert to an open procedure and carry out what they described as a'full pelvic clearance' They told me afterwards that 'everything was stuck down' that both my ovaries were covered in cysts and that another large cyst had been leaking which had caused adhesions I was told after my surgery that 'everything' was gone that I would never have to worry about reproductive cancer and that tissue samples from the surgery showed no malignancy .

So you can jmagine my shock when I was told that I had an ovarian cyst! There was no malignancy at the time of my original surgery it appears that some ovarian tissue was left and this is the result I am waiting for the histology report from my MRI but have been told that they will only be able to tell definitely what is going on and the extent of the surgery I require once they are in there . I still feel shocked that I have been treated for IBS all this time and no checks have been carried out to look for anything else and still very apprehensive about what surgery I might need and what they might find .