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So just curious if anyone else has experienced massive ovarian cysts with the j-pouch? Ive always been told by my OB that I have heavy cysting every cycle and there is nothing they can do about it except put me on the pill. Which Im not really cool with. I dont take pills anymore. Unless for absolutly killer pain.
Well this is what was happening to me. I was getting the most painful stabbing pains. It was becoming more often and happening right after my cycle, not just before. Like it had always been. So finally my gastro doc found a OB that would even take me as a patient. Within one visit he said I have a very large ovarian cyst on my left ovary. I went in for a ultrasound and found out a week later it is a 14cm(5.511in) complex ovarian cyst. Its made up of hard mass and liquid sections. They said its very complex and has to come out asap. Now Im just doing the waiting game. Because of the complexity of the cyst and my preexisting abdominal surgeries. The surgery has to be performed by a OB oncoligist. While the surgery is being done they are also going to do a lymph node biopsy and check a small growth on my left kidney. I really never throught ovarian cancer would to be something I would have to concern myself with. But the more and more I read. Its very posible.

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sonja-
so sorry you are having this situation. I have nothing to add except for you to try and relax and find some peace prior to your surgery. Maybe try to stop reading the internet for now, but rather a good novel. Hopefully this cyst is benign.

Also.. just wondering if there will be a colorectal surgeon present.. to "care" for your jpouch during your surgery?
best wishes.
L
Sonja,
I have had my pouch for 17 years now, but 6 years ago I was in the same situation as you are right now. I had my ovary and fallopian tube removed by an OB oncologist who was in close contact with my j-pouch surgeon in case something came up during he surgery. Terrifying experience, because they often can't know if there is cancer until they get in there. But don't forget to remember that it's not always bad news. I had the surgery and everything went well. I understand your fear and really, really know what you are going through. I'm here if you need me.
Best of luck,
C-jay
CJB
Sonja - I live in Washington State, and I too have "something" that needs to be removed eventually. I say " something" because they are not 100% sure. My oncology surgeon thinks it is a benign tumor. We have been monitoring it for over two years now. Really, the only constant is change. It is now 7 cm X 4 cm X 4 cm. In spite of the fact that the size and complexity keeps changing, my doc says it won't go away. We will check it again in three months and then, if it has grown, I will probably have to make the decision to have it out. As I'm sure you know, this terrifies me.

One of the things that scares me the most is that my surgeon says there's an 80% chance it can be done laproscopically, but my gyno, who is blunt but I totally trust, scoffs at that and says, "He's dreaming." He is at a respected practice, has experience with j-pouchers and appears calm and confident. I just wish for certainty.
kta
To add to my info. and the whole uncertainty thing - at one time they thought it was a hydrosalpynx (sp?). My j-pouch doc mentioned it could be fluid filled areas that j-pouchers get. So no one really knows what it is, but, again, the oncology surgeon is pretty sure it's a tumor. I want a second opinion, but the doc I want it from is in the same practice so that is awkward and I want a totally unbiased opinion. Guess it is time for more research.
kta
I had some simple cysts on one ovary and my ObGyn kept following them with ultrasounds every 6 months. She finally told me I should have a complete hysterectomy since I was over 70 and beyond childbearing age. Interestingly, I had absolutely no symptoms! So.....a year ago I had the hysterectomy. I had an oncology OBGYN surgeon do the surgery upon recommendation of my regular ObGyn. He really wanted to do it all laparascopically but when he tried to do so, he couldn't because of the number of adhesions I had. So, he opened me up along the same scar left when I had my colectormy. I had a very easy recovery and the scar looks great.....almost gone! My J-pouch was done in 2001 with takedown in 2002. I'm still in awe of how easy this surgery was for me. Best wishes!
C
Oh, gosh! I hope mine goes as well. He wants to leave the uterus since I have so much scar tissue, but take both ovaries and the one tube I have left. I am 55 so have no issue with losing those parts. I just want to protect the pouch. I could live with the bag, but really hated it when I had it. I have sensitive skin and by month two, I got so raw under the wafer that it came off. I was sitting watching TV and suddenly felt warmth running down my side. It was 8 at night. I didn't trust any ER to deal with it so waited until the next morning when my ostomy nurse was in. I slept in my recliner with my hand holding that damn bag on all night. The nurse was awesome. She calmed me down and showed me how to deal with things. The skin never really healed until the wafer was gone and then it took a full year for it to look normal again.

So many reasons to be scared, but we are a tough bunch. We have to be.
kta

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