Should I be screened?

[chelytoad]

OK here is my deal...I am 31 year old female who has had chronic pelvic pain for quite some time now.  As a teen I was diagnosed with a transvaginal septum, a duplicated cervix and a septate uterus.  I have ALWAYS had really heavy painful periods. I was put on birth control pills at 15 because I was having two complete periods a month and even on the pill I still have cramps and 7 day periods but they aren't as bad.

For the past four years or so I have been experiencing pain in my right side--about where my ovary is. I get shooting pains during ovulation as well as a general throbbing. I have a family history of endometriosis so I recently underwent a lap to diagnose that. I do NOT have endometriosis. Instead, I had endosalpingosis and endocervicosis.  Quite a few implants were removed--all were benign.  At the time of the surgery, it was noted that my right ovary appeared somewhat larger than my left.

Due symptoms, Ultrasounds, etc. my doctor suspects I have adenomyosis so I am to have an MRI done soon.  

Here are my questions/concerns.....is the size difference between my two ovaries significant? I would think if it was my doctor would have said something so I wasn't concerned until a friend of mine with ovarian cancer mentioned that is all that should up on her early ultrasounds, etc. Did any of you with ovarian cancer have endosalpingosis, endocervicosis, and/or adenomyosis? I am just curious as I cannot find any information on the web about these conditions and/or the growths they cause on their own.  The only info I have come across mentions that they often accompany ovarian and other reproductive cancers but didn't not specify if that was coincidental or if they can serve as an early screening.

In addition to my pelvic pain I struggle with IBS. It has gotten worse over the past year along with my pelvic pain. It wasn't until recently that I found out that ovarian cancer often has a GI component to it.

While my doctor is running various tests do you think it would hurt to run a CA-125? I just want to make sure that we don't miss anything.

Thanks! Sorry so long!

[hopeshell]

Thanks for asking.  I am doing well.  I was extremely fortunate to be staged early (1a).  I am adjusting to all of the changes brought on by the surgery.  I was fortunate to not have to have chemo.   I have follow-ups every three months to check for recurrence.  

It is really good you are trusting your gut about your health.  I am glad you are having an MRI because it will be able to put your mind at ease about cancer.   I had one and it showed the cancer well.  But, it doesn't show endometriosis or endosalpingiosis.  I wish you well and hope you'll keep us posted on how you are doing.  I know the frustration of not having answers for years. Hang in there.  It is my personal belief that when our hormones are off and we have other disorders causing inflammation that it gives cancer cells a chance to grow.  We all have cancer cells - they just have to get a chance to take hold.  Genetics and our immune system sometimes aren't able to keep them at bay.  Early detection is the key.  Hope you have a Happy New Year!  

[Brownie3321]

Chely - Just wanted to say trust your instinct. I will be praying for you and wish you the best. With love, Deandra

[chelytoad]

Thanks. I just have this nagging feeling something is going on and find it odd that they didn't find endometriosis but found endosalpingosis instead. We are still investigating so we will see I guess....

How is treatment for your cancer going? I hope you are doing well.

Thanks
Michelle

[hopeshell]

Yes, they found endosalpingiosis when I had the TAHBSO for ovarian cancer.  I had never heard of it.  But, like you I was plagued with very painful periods since I started menstruation at the young age of 9 1/2.  I also had a transvaginal septum.  I had a surgery to remove ruptured and painful ovarian cysts when I was 15.  They didn't find endometriosis then but did find it when I was dx.  My gyn/onc thinks the endometriosis and endosalpingiosis were the reason I had such horrible pain for years but really didn't have anything to do with the cancer.  The symptom that was most prominent for me with the ovarian cancer is that I had urinary urgency and constantly thought I must have a bladder infection.  The CA-125 isn't very reliable in premenopausal women but mine was high before my dx and I am 37.  Drs. don't really take notice too much of the results in the the absence of an ovarian mass in a premenopausal woman.  Trust your body and follow up as needed.  I have read several things on endosalpingiosis and remember reading they don't think it is related to cancer.  Good luck to you!   Shelly

[junamgen]

I would think it is a good idea to have a ca125 test done which is another piece in the puzzle.  Best wish

Peace
Jun