Hello,
I've posted about my post-op complication of peritoneal cysts a couple years back. The fluid pockets still require draining, although the volume and frequency are lessening. Would like to know if anyone has had or heard of a similar experience? It's just normal peritoneal fluid that accumulates in septated pockets amid my adhesions and pelvic organs. When I feel symptomatic I have the fluid drained by an interventional radiologist as an ultrasound guided procedure with local lido. Have not heard of many cases like mine, except Lynne's...hey Lynne are you out there and how are you doing?
Thanks,
Linda

Hi Linda

It was great to see you here again! How are you doing?

I am doing OK. I had an US done in December and my cyst appears to be GONE !!!!! The drainages combined with the Lupron injections seems to have worked. I am no longer getting the Lupron (it has been about 7 months since the last one). I will have another US in May to make sure it is not refilling....if so it will be back to the Lupron.

For those who don't know, like Linda, I had a very large peritoneal cyst. I also had mine drained several times but in addition to that I was treated with the Lupron injections. Since these cysts are related to the normal fluid secreations from the ovaries the decicion was made to put me into menopause early (I am 47 so it is not that early) in the hopes that by shutting down the ovaries the fluid would stop accumulating. So far, in my case, it seems to have worked!

Anyone else out there with this type of cyst??

Hi!Linda & Lynne
How did the doctor know which type of cyst you had? What are your symptoms? I find it hard to tell the difference between cramps & adhesion pain sometimes. I've had an ovarian cyst, at least they think it is one, for over a year and now it is giving me terrible pain. I've had CT, US & GI series done last year. I know I have adhesions that give me pain also. I started the birth control pill about 11 days ago to see if the cyst would shrink. I'm 46 and have a tubal ligation. I just started my cycle a few days ago. The cramps were sooo bad! I took 6 pain pills yesterday. I stopped the birth controll pills last night with my husband's encouragement. Today the pain is much better. I was told by 2 doctors, that they would not operate because of my Jpouch surgery. One radiologist was scheduled to aspirate it until she was doing the ultrasound and saw the Jpouch and said it would be too risky. Why is it so hard to find the right doctor to help me? I am seriously thinking of going to the ER at Cornell so it would be their burden to find the right doctor. But I really don't want to do that now. If either of you could suggest a GYN doctor in NYC, I would appreciate it. I live in southern orange county, about an hour north of the city. Thanks for any info. This is a great site to go to for help. It makes the world feel more friendly.

I went to the ER at NY Presbyterian last Thurday night. What a NIGHTMARE! We were there 17 hours. They did a CT Scan and Ultrasound. So at least I got the done.

I saw a GYN/ONC, Dr.Holcomb yesterday, Tuesday, about the pain and cyst. He now thinks it is a peritoneal inclusion cysts. I had mentioned this, prepared with the information from Lynne. He believes it is benign, but wants to be sure before they stick a needle into me to drain it. I am really nervous about the needle. I hope they have something to relax me during the procedure! My CA-125 test last year was 11.5, so I thought I was in the clear. Dr. Holcomb says they are not always reliable with younger women.

I am waiting to hear from him for an appointment with a interventional Radiologist at NY Presbyterian. I am so uncomforable with the bloating, nausea and back pain. The next appointment will most likely be next week. It seems like it is a long time from now.

I'm glad you were able to get in to see the onc/gyn. Will the interventional radiologist be doing the aspiration? It is so hard to wait especially when you are in pain and worried. Were they able to give you anything for the pain? I hope the radiologist can schedule the aspiration quickly.

The aspiration procedure was pretty easy...but like you, I was really nervous the first time. If I remember correctly they did give me something to relax me but it was a very quick procedure. They sent the fluid to cytology but the dr was able to tell me it did NOT have the appearance of cancerous fluid,or infected fluid and looked more like normal peritoneal fluid. I did feel relief from the pain almost immediately. I was a little sore and crampy the day of the procedure but by the next day I felt so much better.

I was told the same thing about the CA-125 blood test. My regular gyn was willing to do the test with the understanding that it was not definitive. If the numbers came back in the high thousands he felt we would want to do further testing...mine was 6.7!

For me the combination of drainage of the cyst and Lupron injections seems to have worked. My cyst is gone. I will have another US in June. I am not getting the Lupron injections anymore so they will monitor me with US periodically to make sure it doesn't come back.

Please dont hesitate to PM me if you have any questions. Here is a link to a web site about the peritoneal cysts. It is a bit technical but I did find it helpful.
[URL=http://www.ajronline.org/cgi/content/full/174/6/1559]
(I hope the link works)

Sorry that you had such a bad experience in the ER ...I hate the ER...the drs there don't have a clue about JPouches and I always feel really nervous when I have to explain the surgery and my new anatomy to the dr and at the same time know this person is going to make decisions about my health!!! It is a scary experience!

I hope you get some relief soon...both from the pain and worry!

Hang in there.
Lynne

Lynne

An interventional radiologist at NY Presbyterian will be doing the aspiration. The GYN gave me pain meds. I am so bloated. It feels like I ate a whole watermelon! The GYN never mentioned anything about Lupron. I don't know if I am ready to go thru menopause, yet. I guess I am old enough though, almost 47. The few weeks I was on Birth Control pills, I had all kinds of side effect. The emotional roller coaster was really hard on my family. What kind of side effects did you have with the Lupron injections?


The ER is really scary. You are so right about the doctors being clueless. I was relieved to see Dr. Lee's associates there in the morning. Didn't have to explain any thing. That is so comforting after explaining everything during each conversation all night long. I really don't think the US radiologist knew what a Jpouch was.

I am really surprised that more J-pouchers don't have this problem. It sounds like it is common with patients that had abdominal surgeries. I was misdiagnosed for 2 years, though.

Thanks for answering all my questions. I'll let you know how the IR does next week.


Barbara

I had an interventional radiologist at NY Presbyterian try to do the aspiration yesterday. He was not able to penitrate it because it was moving and too soft. Now I have to hurry up and wait! Again! When will this be resovled? I am sick of being in pain! I expect open surgery will be the next course of action. It is amazing that some doctors just say to live with the pain and take pain meds....

Barbara,

I just sent you a private message and am reading your posts now. To reply to your last posting DO NOT HAVE MORE SURGERY!!!
It's the darn adhesions an scarring that have caused our problem to begin with.

I've had Dr. Remzi, Dr. Bellinson (GYN-ONC) and Dr. Shen from Cleveland Clinic all tell me this...I went to Cleveland for advice on how to treat these cysts and fortunately (knock on wood)I've been tolerating my symptoms and quality of life enough that I have not had to return to them to do any invasive procedures.

Go to my IR doc in Philly and try another drainage before you allow a surgeon to muck around in your pelvis...I had a surgery at Mount Sinai, NYC 3 years ago to cut out the membranes and lyse adhesions, and I'm still posting here about my cysts, enough said.
Email me anytime, I'll help however I can.
Linda

I will be having Laporascopic surgery to drain my cysts on April 21. Does anyone know how long it will take to recover?

This message has been edited. Last edited by: GA Peach,

Hi GA Peach
I am not sure how long the recovery following laproscopic drainage of the cyst.

I had mine drained (aspirated) by an interventional radiologist. I really had no restricions following the drainage except no tub bath for a day but I was able to shower. I had just one small "incision" where they put the needle in and it was covered by a regular band aid for a few days. they used consious sedation so my "recovery" was pretty much just waiting for that to wear off. I'm not sure if this helps at all? Are they planning to remove the cysts? Or just drain them? I hope you feel better soon. Good luck on the 22nd. I will be thinking of you

Thank you, Lynne. According to my surgeon, my "mass" is made up of many small cysts. I could've had them aspirated by a radiologist but my surgeon said it would be very risky due to the mass being located very close to my bowel...didn't want it punctured. Are there usually limitations as far as lifting things?

Sheryl

Sheryl, that is how the Dr described my "mass" also. He said it was like a balloon filled with small grape-like "cysts". Yes, puncturing the pouch or bowel is a risk with aspirating it. When I had it done they used US and CT scans to guide the needle. The rational I was given for drainage by the Interventional Radiologist rather than surgically draining or removing it was that the cysts are caused by adhesions and scar tissue and further surgery just causes more scar tissue and the cyts usually come right back?? But since they are planning to drain yours laproscopically it sounds like they are trying to minimize scar tissue/adhesions also? Doctors all have their own theories and not wanting to risk puncturing jpouch or the bowel certainly makes sense.

I didn't have any restrictions about lifting after the drainage. I just had to keep the site where they put the needle in clean and dry for a day or so. It was a pretty simple proceedure and I felt fine after it. Just had to wait for the conscoius sedation to where off.

Unfortunately my cyst refilled several times and I ended up trying a different treament. I got Lupron injections every 3 months for a year. That really helped and the cysts have not refilled. (Knock on wood)

I hope all goes well for you when you have the drainage. I will be thinking of you.