Ovarian Remnant Syndrome Help!

I had a hysterectomy/oophorectomy (left ovary), along with removal of left fallopian tube, part of my vagina and cervix, back in 10/2003. I was hospitalized 2 mos. later with peritonitis. I went back into the hospital (after several Gyn. visits having to do with bleeding/severe pain) in 04/2004, for oophorectomy (right ovary) and removal of more endometriosis and ended up with a tear in the vaginal cuff, leading to an infection. I began HRT (Estratest). In 10/2004, I wound up back in the OB/Gyn office with same probs with severe pain on right side. He sent me to the ER, where the surgeon gave me an unnecessary appendectomy. The surgeon called my Gyn to come assist because he found a strange mass which turned out to be an Ovarian Remnant. It is stuck on the Genito-Femoral nerve that runs from somewhere inside my pelvic region down my inner right leg...talk about painful, especially when I "cycle." Apparently, this thing is producing hormones on its own but not enough to sustain me in my daily functioning. I am up and down, feeling anxious, irritable, agitated. I have been seeing a Gyn/Oncologist. We are managing the pain but having to keep changing the meds, including the hormones. One type supposedly feeds the remnant while another puts it in a dormant state. One type feeds endometriosis, which is something we think might have crept up again. HELP!!! I have an appointment on Wednesday. I need a wealth of info., PLEASE! I'm at my wit's end and need guidance. My options are an open surgery where he strips everything, tries to remove the remnant from the nerve or either clips the nerve, or radiation- which the doc feels is not the way to go...me too. Any information is greatly appreciated! Thanks!

Hi, no experience with your problem, but am
praying for your healing. You've endured so much. Another
surgery must seem overwhelming.
How about a second opinion? Not understanding switching hormones--
sounds like no win options.
Hopefully other sisters will
offer some savvy on your condition.
Best to you,
Leigh

Awwww hendu!!!

Wow...you sound like you wrote MY book!!! I have had the same exact thing and you almost follow my problems to a tee!!! Kinda Freaky..

I also have had to keep going back to fix things and was one of the first on this site to deal with Ovarian Remnant Syndrome. ( ORS ) Being with a GYN Onocologist is the only way to go in my opinion. I love mine. When I first started researching the only info we here on the site could find related 98% to dogs.. lol Boy did I feel alone back then.

My last surgery to remove the Remnant was tricky at best. I had massive adhesions which just made a bad situation worse, plus a hernia due to them having to keep going back in every 5-6 months. Ya just get plain tired of it.

MY understanding of ORS and Endo is this.....HRT/ Estrogen feeds both. yes the remnant will produce it's own hormones which doesn't help as that feeds the Endo. Adding more of any kind of Estrogen in my docs opinion only made the matter worse. You have the added problem of this being on a nerve? Can I ask How your doc know's it's on a nerve? could it be adhesions just pulling all this in different directions? My Remnant showed several cysts had also grown on mine due to the added estrogen my primary had me on.

I know for me surgery to remove it was the only option to stop the pain. I was told by several gyn docs that a GYN-Onocologist is really the most qualified to do the surgery. They told me as the Ono was used to surgery on cancer patients they were more knowledgable in looking and finding the smallest cells and knew how to do such delicate surgery. I wish you lived in Florida I'd send you to mine!!!! She was the most wonderful patient doc I have ever known. The Cells of an ovarian remnant must ALL be taken out...or it will come back..strange I know, but it happens.

Yes this is a very painful condition and I do feel for you....you have the added problem of the Endo. This ovary will continue to put out hormones which feeds the endo and creates a viscious cycle.

There are a few links in the "resourses" forum that refer to this syndrome and WebMed has an article...but not a very infomative one. There is still a lot of research that needs to be done on this phenomonom (sp) There is just not a lot of info out there and Docs are just now discovering this to be a true complication of Ophorectomy.

If I can help....be a shoulder or just listen to the vent....I'm here.

There are other sisters here that have had this also lately...you can do a search for some of the posts by typing in " Ovarian Remnant Syndrome "

tons and tons of

Dawn

Dawn,
Many thanks to you for the reassurance you've given me! I have been feeling so isolated in the fact that not many have heard of ORS, much less understand it. I saw my GynOncologist today, and he says that he's ready to perform the surgery when I am since the pain stemming from the remnant is diminishing my quality of life. I am trying to hold off until my children are back in school, if that's at all possible, so that I might have a better recovery. How long was your recovery time from ORS Surgery? Is your doctor located in the Florida Panhandle? That's not very far away from Louisiana. I'm seeing a doc from Baton Rouge, now. A second opinion from a doc who has already performed this type of surgery would definitely be beneficial to me. You asked how we know the remnant is adhered to the genito-femoral nerve~ well, a surgeon and my regular OB/Gyn discovered it and tried to remove it at the time of my appendectomy. The two doctors decided not to pursue it at the time as to not damage the nerve, and that's when my OB/Gyn referred me to the oncologist. As with you, pathology came back on the part of the remnant that was removed, and cysts had grown on it, too. How many surgeries have you had just to remove the ovarian remnant(s)? A nurse tried to reassure me today that once the oncologist removes the remnant, it wouldn't come back. I have no confidence in that reply due to all the "Sisters" remarks! How did you manage the uneasy feelings of being agitated or irritated all the time? My doc says that it's due to being in chronic pain, and the way to manage the feelings is to manage the pain. Was this true for you? :hair:
Well, thanks for being so prompt with a response for me.

hendu12

Thanks, Leigh, for your thoughts and prayers! Yes, another surgery does make me a bit anxious, especially when I am needed so much by my children and husband. Even though trying to get through all this is confusing and tough, I feel blessed because my problems seem so miniscule compared to some of the other "sisters" out there!
hendu12

Hendu.

Just a quick response as I just got home from the castle today from gallbladder surgery,

No the surgery wasn't near as bad as the hyst...in fact I felt relief IMMED!!! it was a wonderful thing..lol

Yes I still had the 6 week recovery but more from not doing damage to the insicion than anything else. I did go thru immed menopause again tho due to the lack of hormones from the ovary so be prepared there.

I'll post more when I can sit longer..



Dawn

Oh, my goodness! Yet, another surgery...you poor soul. I wish you the speediest of recoveries!

Wow! Immediate relief sounds really good to me right now. Going through surgi-menopause again sounds rotten!

Well, get yourself some rest if you can. I look forward to learning more from you. You have helped me immensely!

hendu12

Hendu,

I'm up a little bit this am and feeling a little Whew...I've got more gas now than with any of the other surgery I've had!!

In answer to your question of if the remnant can come back. It depends. I had earlier this month thought that maybe mine had due to all the pain in the same spot that it had been in before, but after a trans-vaginal ultra sound it showed nothing so we are assumming at this time it's adhesions or a possible bowel obstruction. ( another surgery down the road...whooo hooo). I'm glad it's not the remnant. My Onocologist had assured me that she made sure she got everything. I believe her now! That is the key. That is also the reason it is preferred that an Oncoclogist do the surgery as I stated before. Most surgeons aren't familier with this complication, haven't done the research and go in and just remove the remnant as with a normal Ophorectomy. This can't be done. The tissue/muscle/ adhesion must be looked at carefully to get ALL the cells. As long as this happens it won't come back.

Ovarian Remnant is caused by cells or tissues of the ovary being left behind, this can be caused by dense adhesions and the doc not being able to see where all of the ovary is, working to quickly to remove the ovary in the first place, or the ovary haveing had so many cysts it's hard for the surgeon to tell what is what. Research now states this.

The surgery was a relief for me. I felt like a weight had been lifted and felt immed pain relief. Sounds crazy, but once the internal pain was gone everything else was a breeze to deal with. My surgeon also had to change my surgical site as they had gone in my "bikini line" so often, she said it would be better healing for me, and she wouldn't have to fight the scar tissue that was sure to be there. So yes, I have a different line now, but with her surgical skill it looks way better than my bikini line ever did!!

I live just outside of Orlando...not so close to the panhandle....But I have to say your Onoc. sounds like he/she knows her stuff. They have tons more schooling than a GYN-Surgeon, and a lot more experience in this sort of thing. Again...they are much more used to doing delicate surgery and going after the tiniest cancer cells. This is no easy feat.

If there is anything else I can offer or if you have anymore questions please feel free to ask!! I'll be here for you.

tons of

Dawn

WOW !!!! I am not alone. I am 32 and have had 3 seperate surgeries to complete the removal of my crevics/uterus (1-07) R ovary and tube(6-07)and L ovary and tube 3-08. I also had surgery in 4-08 to repair a rare type of hernia in my abdomin (not the cause of other surgeries). Started menopause immediatly after L oopharectomy. Then miraculously, after six weeks of recovering from 2 abdominal surgeries and the lovely gifts that come with menopause, I felt amazing no more hot flashes or night sweats and no more pain. This only lasted for about three weeks. I woke up one morning experiecing the unmistakable pain of a cyst rupture. I thought I was crazy so I waited it out and felt better in a few days. Only to have it happen again 10 days later. This time the pain was to bad to not see my doc. An ultrasound showed fluid and what appeared to be an ovary? Dr. mentioned ORS but wanted to try birth control again (6 different trys before removal of last ovary. 2months go by with several ruptures and loss of quality of life. Repeat US 2 weeks ago shows 2 ovaries several complex cysts, massive amount of fluid (cysts may be continuously leaking), and possibly a FETUS yes I said a FETUS. The pregnancy test came back negative but my blood work shows that I am producing the hormone level of a very fertile woman with all her reproductive organs. I am to see a specialist in GYN and robotic surgery at the Detroit Medical Center in 3 weeks the hernia surgery has also failed. My Doc is hopefull that they will be able to fix this during the ORS surgery. I have 4 children 14,12,5&3. Avery loving husband who also happens to be a firefighter and is gone 24 hrs 3 days a week. And I work on the days that he is home. I have a pretty high tolerance for drama and pain but this is ststing to seem like a losing battle. Every surgery comes with the promise of an end to all the pain and I am beginning to wonder if I will have to endure this forever. I am in a great deal of pain today, usually I am a bit more optomistic. Any advice would be greatly appreciated. Thanks! Grace