Recurrent Perintoneal Cysts after ovary removal

I posted back in Jan about some abdominal swelling &discomfort I was having after my ovaries removed on 12/16 for a 10.5 cm cyst. (had hysterectomy in  1999)  I went for a follow-up on 1/30 & my gyn said my discomfort and swelling was probably gas and that I should start wearing support panties & it should help. So I started chewing Gas-X bought support underwear.  The following Friday 2/7 I went back for my surgical follow up and he found a mass.  Was immediately admitted to the hospital and had a CT scan which showed a large cyst.  It was drained on 2/10 & I was sent home.  A week later I felt the same discomfort, called the MD and he said to get an ultrasound done & it showed a mass of fluid AGAIN after only 10 days!!! This time it was only 5 cm. It was drained a week later & when I went to see him this past Friday - he told me that if it recurrs I will need to see either a general or GI surgeon whom he will recommend.  Well - guess what - I have the same discomfort & bloating.  Am I losing my mind?!?  Could it really be back?  Has anyone heard of this?  I am going for an ultrasound on 3/14 - maybe they'll find nothing? Then I'll know I've lost it.  I return to work on 3/15 - need to - I'm going nuts sitting at home.  Please help if you can!

[Gatsby]

It sounds like you have Ovarian Remnant Syndrome.  bluesgirlIN (Dawn) knows everything about this as she suffers from it.  She should be along shortly and answer any questions you may have.  If not, just post a question to her and she will respond.
~Tascha

[xrayu2]

This remnant syndrome does not make oopherectomy sound very promising. I just wish doctors would be put their head into it like this when women come in with unknown primary cancer with tumors originating from the pelvic area.  Some docs will treat it like ovarian immediately and others act like it could never happen because these women had complete hysterctomies earlier in life.  I don't know that this statement has much to do with anything written in thread but it gave me a chance to shout from my soapbox.  Love ya Cysters!!

[Gatsby]

Gotcha, see I knew you would be here to help!!!  
~Tascha

[CindiSue]

Hey,how about the idiots who had 5 kids and had all the names start with J????? They laugh their butts off when I so around sounding like I'm trying to start a motor!   Je...JA...JU...Oh, YOu KNOw who I mean!!   Cindi  No respect. I tell ya!

[MrsT]

It is so reassuring to know that I am not alone - thank you everyone for giving a possible 'name' to what I am going through. I am going for an US on Tues 3/14 the day before I return to work - and I will mention to my Gyn/onc about thei ovarian remant syndrowm and see what he has to say.  Yes - I agree instant menopause stinks - but I have been on the estrogen patch and it seems to be helping!
Helen

[MrsT]

Thank you for your input -it helps so much to know that I am not alone and that I'm not imaging this!  I have been drained twice already - first the used Ultrasound guidance.  The cyst was 9.5 x 11.6 and contained 500 cc of fluid.  They went in through my lower abdomen.  Virtually painless!  Secopnd time the cyst was myuch smaller - only 2.6 x 5.6 and contained 45 cc of fluid.  They went in guided by CT scan through my very lower back.  Actually my butt cheek to be blunt. Again - virtually painless!  I felt like they thought I was making a big deal out of the second one - but the pressure and pain was there!  I'm heading back to work on Wed 3/15 for the first time since 12/16 - my surgery.  I need to feel useful again.  I feel some pressure and pain again - especially when I've been active(running to the store - picking up around the house)  They say to take it easy - so I haven't lifted or pushed a vacuum - y'know all the normal stuff they advise not to do after surgery - but come on already - I need my life back!  Should I get another US before I return to work just to check?  I have a script here for one - and I was told if it returns I'll need to see a general or GI surgeon.  But I want to work for a while and see how things come along - is this OK to do?

[CindiSue]

I am confused! If there is a cyst and they drain it but do not remove the cyst itself,  what IS to keep it from refilling with fluid? Why do they just drain it?   Cindi

[Gatsby]

What was your name again???  I have to make lists for my lists!  I have simply combined my kids names so that it doesn't matter.  I can say it and it could be either one.  
~Tascha

[gena5421]

i was diagnosed with endometiosis at age 12, at age 19 i had the first of my 25+ surgeries to include a hystorectomy at age 24.  i have had my ovaries removed on a numerous occassion, the last time being oct. 05 since then my left ovary has been found again.  i have been diagnosed with ovarian remnant syndrome and cant find much on it.  i have seen 40-50 doctors in pa and ny and all send me away, some say its in my head, some say my condition doesnt exist, some say my pain is phantom pain and some say im a drug seeker. i even had one tell me to see a counselor and get hypnotized and all my problems will go away.  in the menatime my pain is increasing in intensity and never goes away. any ideas or suggestions as to where to go for good help?

[Kimmiegator]

Gosh, I can't tell you how glad I am to find this site!  I too have been suffering with recurrent ovarian remants.  I had parts of both ovaries removed in high school - 20 years ago - due to cysts/dermoid, etc.  Then, in 2003, I had a total hysterectomy with both ovaries removed due to endo and massive cysts.  The left ovary was embeded in my abdominal wall and all adhered to m y ureter and artery (don't know name of it).  Dr. told my hubby and mom that I'd have to have a repeat surgery in years to come as he couldn't be sure he got all of the left ovary.  Well, 11 months later (in 2004), I had abdominal surgery (this time out of town as the GYN who did previous surgery wouldn't touch it again and referred me to GYN Oncologist at the University of FLorida Shands Hospital).  Guess what....same pain/pressure returned in 8 months!!!  Does anyone else know how to describe the pain - I try but it's hard to describe other than a pain/crampy/pressure.  Any way, I had another abdominal surgery in 2005 to remove the remnant by the GYN Onc at Shands again.  All lab tests came back in 2004 and 2005 as ovarian tissue, no endo.  Now, only 5 months post-op, I'm back on pain meds and my ultrasound from last week revealed another left ovarian remant, this time bigger than it was when they operated 5 months ago.  I'm loosing my mind!  I feel like I'm a hypochondiac and my hubby and mom are supportive, but this gets old.  I sometimes just want to run away but I have no where to go!  Does anyone know of any specialists who treat ORS?  Has anyone heard of radiation being used and the results?  I need to get this resolved, but my mind, body and finances can't take another surgery at this point.  Although I can't live with the pain.  I'm only 37 and I should be enjoying life and I'm too beat by the end of the day, I can't really be there for my family (have a 7 year old little boy).  Thank you for letting me vent - from the posts, it sounds like you all can relate.  Kim

[MrsT]

Well - here we go again!  I think there is another cyst forming. This will be the 3rd time!!!  There is peritoneal pain and pressure. (a polite way of saying pain in my crotch area) And my lower back and pelvic area.  I have an ultrasound scheduled for tomorrow evening - but that is if my 'script arrives in the mail.  Otherwise I have to wait until April 5.  I went back to work 3/15 (was off since 12/14) had an ultra- sound the day before I returned to work  (3/14) and there was no signs of any cysts, now 2 weeks later I am in all this pain. I have an ultrasound scheduled for tomorrow if the 'script comes in the mail - if it doesn't I have to wait until April 5. Can any one give me some encouraging words?  My gyn/onc is going to recommend wither a general or GI surgeon.  I can't understand why he is going to pass me off.  Does he feel there is nothing more he can do?  I don't understand. I will let you know how the ultrasound goes.

[rosie1961]

Hey. I'm from UK but found this site and it sounds exactly whats happening to me! 5weeks ago I got diagnosed with a very large ovarian cyst (the size of a melon apparently) I had had it for years just my doctor never noticed. For years I have been complaining of feeling sick, abdominal pain and most of all, weight gain. I have been so bloated for countless years. But recently I got really bad pressure on my bladder etc, which led to the diagnosis. I had the operation 3 weeks ago (03/20) apart from the terrible pain, I felt great and although still swollen, I definately see a difference in my weight after so many years. I now have the pressure on my bladder again, it is an incredible pressure. I feel like I need to urinate constantly. I was checked for a urinary infection, but it came back clear, I have since made an appointment with my consultant that performed the op to see what is wrong. but does anyone have any advice meanwhile? Thanks, Rosie.

[AnotherKatie]

Hello Rosie and Welcome....could you perhaps re-post this question as a new thread....way up at the top?  Do you know how to do that?  If not, post here and let me know and I will help you gladly  :)  It might not get seen way down here at the bottom...
Katie
PS how big are the melons in the UK?!! Isn't that amazing how big those darn cysts can get?

[pearland]

Hi! I am new to this site. Yesterday, I had a grapefruit size cyst drained from my right side. Two doctors...one a gastro the other a gyn said it was a lymphocele caused from my past surgeries. I had a hysterectomy in 1997, colon resection in 2000 and a colon stricture in 2002.  The radiologist said it is a cyst caused from remnant lining where my ovary was. I thought removing my ovaries would remove the problem of cysts. After reading the comments I have been enlightened.

[suzsen]

Pearland, am I glad to hear from you!  Did your lymphocele just suddenly show up years after the surgery?

I was told by a radiologist today that he thought I had a lymphocele or maybe an inclusion cyst, its at the top of my vaginal cuff where my cervix & uterus were removed during a partial hysto 4 years ago.  I KNOW it wasn't there until recently, as I have had ultrasounds every year due to family history of ovarian cancer, and they didn't see anything.  

Suddenly, about 3 weeks ago, I began having pain during sex, rectal pressure, gas pains, then it switched over to bladder pressure and difficulty urinating.  

First UltraSound thought it was a 4 cm cyst on right ovary, but that was followed by CT that said both ovaries were normal, the mass is 5 cm and located between the ovaries at the top of the vagina. Went for another ultrasound, it confirmed the CT, said it's a septated cyst.  The radiologist told me this is harmless and I should just leave it there unless it caused pain or other symptoms (I don't think so, buddy).  It hurt like heck when he had the US wand pushing anywhere near it.

What do I do now?  Is this for my gyn, or a general surgeon?  Can it be drained, or does it have to be removed?  Can it get infected? Rupture?  Will it go away by itself? And why would it suddenly appear 4 years after surgery?

I just thank heavens it's not malignant!

[pearland]

I have had pain in my rt side, pain when my bladder was full, and pain when I had gas or prior to a bowel movement.  I was told by the surgeon and my internal medicine doctor that it was adhesions, but no one ordered a ct scan.  I have had pain since 2002.  In march I thought I was getting diverticulits again so I went to a gastro doctor and he ordered the ct scan.  That is when I found out about the lympocele. I went to a gyn and she concurred it was a lympocele, but when I had it drained last week the radiologist said it was an ovarian cyst from the remnant lining.  I am waiting to hear from doctor on the report. The surgeon who operated on me last said my adhesions are so bad that he had to spend two hrs just getting to my colon. That is why I think he damaged a lympnode during surgery and it is not an ovarian cyst.  I am please that after four years my pain is gone although the radiologist said the cyst may come back. There is no history of ovarian cancer in my family.I learned one thing from all of this.....when you aren't satisfied with the diagnosis....get a second opinion! or third! or whatever it takes!

[delly evans]

I am pleased that i am not alone or a nut case
I am 42 and have years and years of ovarian troubles
had some large cysts  anything from 12cm  and  very regular
i had a hystrectomy when i was 35 and left the ovaries in tack but have since had them removed one by one
i have had 7 laparotomys and loads drained by ultrasound
in the last two weeks i have had major surgery striping the pelvic area AGAIN............
and they found four cyts   attacted to bowel bladder appendix etc
I know when they are back yes bowel pressure and a general unwell feeling
its only been two weeks and i have this feeling it will be back again ......
thanks for your time
delwyn evans   new zealand

[stam72]

I am elated to find you all! I'm 33 have been having such similar problems!  And I thought I was going insane until I saw this sight!  I had a hyst for uterine cells hyperplastic in 04, then oopherectomy due to a 10cm cyst in 05, then a needle aspiration through my butt cheek 6 mos after that, now a new cyst and back to the gyn oncologist after another 6 mos!  3 cysts in less than a year on my left with pelvic pressure and pain and people telling me I'm bringing it all on myself like I'm a hypochondriac.  I lost my mom to cancer two years ago and I pay attention, I don't want to be sick, I'm not sick....I'm trying to fix a problem!  Thank you for creating this website.  I am frustrated with being sent to an oncologist who sees the worst and like myself wonders what I'm doing there but my gyn won't take chances with it. The first cyst was muc aden, the 2nd cyst epithelial cells , this one, don't know yet.

[pearland]

I went to the GI doc to get my report from the cyst aspiration. The fluid was benign. I had an ovarian cyst.  Now I need to find a good gyn to follow up because he said it may re-occur.  Ya THINK! After reading all of your stories I am better informed about the future.

[pearland]

I was scared until I found this website.  I am 55,and I thought all my female problems were over when I had my ovaries removed in 2000.  My children are your age.  I have one that thinks if I lose weight all of this will go away.  NOT! It has just been a few weeks since the aspiration and the pressure on my bladder and bowels is coming back.  I hope to find a gyn with experience in this area.  I live near the Houston Medical Cntr so there are plenty of good doctors around here. You are doing the right thing keeping up with your health issues. Hang in there!

[asin]

respected mam/sir,

     i am now 19.i have been operated two years ago for ovarian tissue.they told that the tissue was gorgarious and twisted so the ovary should be removed.so my left ovary and fallopian tubes were  removed.now for the past three months i have another cyst in my right ovary and i consulted my presonal doctor she gave me birth control pills.the cyst is now 3.5cms so they told no neeed to be operated if it grows we could do it by laproscopy..is it advisable for me to go by laproscopy mam/sir.please i would like to know whether i cud give birth to a kid.if so will it be healthy like others.i am confused so i am not able to concentrate in my studies even.is there any special centre to cure this problem..can i marry a person if this problem exists.

[delly evans]

i had operation march 2006 for another batch of cyts mind you  have no ovaries long gone ........
i suspect i have another one back  bowel pressure that is unbearable at times  and i think i have got  to  know my own system  specialist agrees that i have never been wrong with my  calls
yes you get sick of people saying get over it maybe its in your head .................not
and you find it very hard to hold down a full time job due to being sick all the time
delwyn evans

[pearland]

Well....it has been four weeks since my cyst was aspirated and I had an Ultrasound tday and the cyst is back.  Also the fibroid cysts in my breast are inflamed.  I don't know if this is normal. I would like to read any comments concerning what is next for me.

[stam72]

To Asin, to my understanding, the probability of you having children in the future sounds up to whether or not they perform a cystectomy (just removal of the cyst) or another oopherectomy/salpingoectomy (take the ovary and tube)...it may be possible to just seperate the cyst depending upon what they see when they get view.  You can marry of course with or without the ability to have children to someone who loves you as you are and adopt any of the many children who need homes! And you can hold onto the hope that the cyst is just a cyst.  My prayers are with you.

[mrsh04]

Help!!
I just found this site and I can't believe there is others like me.  Long and short of my problem is 03-07 had right side ovary and large mass removed-non cancerous with right tube. Still sick after surgey had many, many ultrasounds and ct's to reveal on numerous times that my left side had up to eleven cysts on it.  I finally went to Lahey in Massachusetts in Sept and two weeks later they did a complete left side ovary with another large cysts-non cancerous and my swollen, twisted fluid filled tube.  My cervix and uterus was also removed at this time.  I had many complications from needing a blood transfusion to being in the hospital for almost two weeks with cuff celetuis (? spelling-sorry), infected hemotam which was from the loss of blood inside or so I'm told.  I still feel like total **** and just want to feel fine again!!! I have been sick since I gave birth to my second child in 2004.  I've had to stop working but I'm not clinically disabled to collect anything. I have a six and three year old and can't do half of what I want to.  I also now have bowel control problems while I sleep.  I just had another ct scan and was told I have alot of ovarian cysts.  How can this be?  I'm not depressed but I an extremely frustrated!!!!I need a great doctor and one who really knows what they are doing and talking about.  Thanks for any help and support.

[lorifr1]

I just found this site too. I am 52 and had the full hysterectomy and removal of both ovaries in Feb. 2005. I am wondering whether I am being paranoid or not. I don't have any pain. However, I am consistently gaining weight. I 'think' I feel what seems like a cyst on my right side, this seems very similiar to what I felt before I found out I had a 4cm sized cyst that caused the hysterectomy in the first place. But when I called my Gyn, his nurse said since they removed my ovaries, it couldn't be a cyst. She suggested that I see a GI. Since I have no pain, I feel a bit 'baby-ish'. Am I being paranoid?