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staciedaisy 11-07-2011 10:46 AM

Not cancer, but was a close one! Need some advice Please
Ovarian Cancer runs in my family, my grandmother and all of her sisters died from it. I have always been worried about it, and have joked with my hubby that is what I will get when I'm older.

I lucked out. I am 28.

I had a yearly exam in July, before that I had some severe short pains in my side that I figured were cysts bursting, I had never had any issues before and never even had a cyst that I felt. But with my family history I thought I would tell my doctor anyways.

She examined me and told me by uterus was swollen, I felt some very uncomfy feelings during the exam and she decided that I may have a cyst and wanted to do a sono due to my family history. The sono was scheduled for a week away.

This was not an OBGYN, just a family doctor, I actually thought she was and had been going to her all through my 20s, kind of found out the hard way that she was not an OB!

That night I had crazy pressure and cramps and just horrible feelings, I ride a motorcycle and was on my way with my hubby somewhere, and had to pull over due to about passing out on the bike. I decided that was no bueno and called my gal Dr but only to get the nurse to call back 2 days later and to tell me that I probably didn't have a cyst and to just wait for the sono. I was so upset and felt like total . I took it upon myself to call the sono place myself, and had them squeeze me in that day.

Turned out I had a huge "cyst" on my left ovary, they referred me to a real OBGYN at that time. The call i got for the nurse to tell me this was not very pleasant and I let them know how I felt about their "caring service"

After speaking with my new OB, we decided to have surgery to drain the "cyst' that Friday, it was Wed. I was so excited and relieved to get this over with.

Friday came, and the 15 minute surgery they told me, ended up taking 3 hours. When the doctor tried to drain the "cyst" my ovary fell apart. It turned into being a tumor that was attached to my ovary. My awesome surgeon was able to "widdle" as he said lol my ovary together and remove the tumor. He took a biopsy of that ovary and the tumor.

I woke up and couldn't believe how late it was, I was so out of it and finally all of this new info kicked in that Sunday when I woke up crying wondering what the heck happened!

That next wed I got a call from the Dr, he advised me that it was a non malignant tumor, however my ovary tested positive for meniscus cystadenoma (sorry for the spelling, I can't even google any info on this) He told me that my ovary will keep producing these tumors, and there is a 25% chance that it could be cancer each time. He said this condition was very rare, and he has only diagnosed 1 other gal with it. He told me that ovary needed to go by the end of the year!

Welp a few months later, after a pretty long recovery (still having issues through out the month) i'm scheduled for surgery this Friday. I am pretty nervous, so many thoughts keep popping up. He told me my other ovary looked fine, but all I can think of is it's not, and I'm not going to be able to have kids if I decide to one day.

Has anyone gone through losing just one of your ovaries? My doctor assured me that I will not go through any type of menopausal symptoms, that my other ovary will kick in and make up for everything!!

Thanks for reading! LOL made me feel better to type all of that out!

Ninety Nine 11-08-2011 10:57 PM

Re: Not cancer, but was a close one! Need some advice Please
What a busy month for you! I hope your surgery goes well on Friday and that you recover quickly.
As far as your situation goes, it sounds like you have found a very good surgeon who you are comfortable with - and that he may have uncovered the condition that is leading to so many ovarian cancers in your family. (I also have received the "this is a rare condition" determination from a doctor. Googling on rare conditions is frustrating as there is little info and you are left to try and figure things out on your own!)
I think you are smart to get this second surgery behind you so that you can heal. Maybe the most important thing you have learned is that you should continue to listen to your body and trust your instincts.
I am sure you are concerned over maintaining the health of the remaining ovary so you can have children. Can your OBGYN advise? I myself would be concerned that the second ovary would start to have issues. What would you need to watch for and how soon should you start thinking about children now that you are down to one ovary? Maybe the OBGYN can advise or refer you to someone who can help?
Good luck on Friday! I am recovering from different type of surgery and, though it went well, it is a long process getting back to "normal."

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