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  • 16 months of pain in lower right abdomen, now complex cyst!

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    Old 05-22-2018, 05:35 PM   #1
    Lauren19
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    16 months of pain in lower right abdomen, now complex cyst!

    16 months ago I began feeling pain in my lower right abdomen. It started as a dull ache but occasionally I had bouts of more severe pain. During one of these times I went to the ER where they did a CT scan with contrast and found nothing. They also did an ultrasound and found a very small 1cm simple cyst on each ovary, which they said was unrelated and to ignore it.

    Pain continued, felt like someone surgically inserted an apple into my ovary-area. Over the next year I had a total of 5 ultrasounds, all showing NO cysts and no fluid (those tiny ones went away after the ER trip). Pain continued intermittently. Sometimes severe, sometimes gone completely, but it always comes back.

    Saw a gastroenterologist who had me on a 6 week exclusion diet (no gluten, lactose, tomatoes, or citrus) that didnít help. Did a colonoscopy that was 100% normal. Gyno checked repeatedly for cysts and UTI and all showed nothing.

    1 year after this all started I got pregnant. Had a missed miscarriage at 8 weeks. During the ultrasound my doctor discovered an oblong 6cm para-ovarian cyst. Went for a D&C for the missed miscarriage and at my follow up ultrasound 6 weeks later, they discovered a 2nd cyst, this one complex and on my ovary (5cm).

    I am absolutely terrified of getting an ovarian cancer diagnosis. Iím also so confused about the recent findings...did I have these all along and thatís what had been causing my endless pain? Did I just develop them and itís completely coincidental that Iíve had pain in that exact spot for 16 months now?

    My doctor ordered a CA 125 blood test and Iím so worried Iím making myself physically sick. Just imagining that this has been growing inside of me for over a year now, and I tried to do all the right things, but failed myself.

     
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    Old 05-22-2018, 06:54 PM   #2
    Titchou
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    Re: 16 months of pain in lower right abdomen, now complex cyst!

    The CA-125 test is notorious for false positives. Am surprised they would do that. Sounds like you have chronic cyst issues.

     
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    Old 05-23-2018, 12:24 PM   #3
    STLouisgal
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    Re: 16 months of pain in lower right abdomen, now complex cyst!

    I too am surprised by how many doctors do the CA125 test when it's known for being useless in diagnosing ovarian cancer. A number of benign conditions can cause it to be elevated putting women at risk for unnecessary organ removal as well as needless fear and anxiety.

    The large majority of ovarian cysts are benign, even complex ones. So the odds are definitely in your favor that you don't have cancer. Most cysts resolve on their own too, no intervention needed.

    My organs were unnecessarily removed after my gynecologist used ovarian cancer scare tactics when I developed a large complex cyst. It was benign as proven by the frozen section. So all he should have removed was the cyst itself (cystectomy). I have learned more than I ever cared to know since my surgery 12 years ago. Studies show that the uterus and both ovaries are essential our whole lives for optimal health and well-being. Most women don't realize and aren't provided with all the repercussions of hysterectomy and/or oophorectomy.

     
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    Old 05-23-2018, 01:28 PM   #4
    MSNik
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    Re: 16 months of pain in lower right abdomen, now complex cyst!

    Many woman get cysts regularly; especially around ovulation. It means nothing...but they can be incredibly painful especially when they rupture. Usually they do rupture, the pain is horrible and then the fluid is reabsorbed into the body and once again you feel fine, until the next time.

    I would not get yourself overly worried about this. You have had so many tests and this would explain why sometimes there is nothing seen, while other times 'cysts" are there...but one has nothing to do with cancer in MOST cases.

    Try to relax and talk to your doctor about what is causing the cysts and what you should do when you have pain. When I have had them previously, usually hot compresses or a warm bath help...over the counter Ibuprofen was my go to as well...but talk to your gyn!

    I hope you feel better soon!
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    Old 05-23-2018, 04:30 PM   #5
    Lauren19
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    Re: 16 months of pain in lower right abdomen, now complex cyst!

    Thank you all so much for the responses, I canít tell you how much I appreciate it. My doctor saw me again today because I started bleeding this morning (had my period last week so it wasnít that). By the time I got there I was no longer actively bleeding but there was a little blood left. She didnít think this was anything to worry about, just one of those things that happens, and unfortunate that it happened while Iím dealing with the complex cyst. I also got my CA-125 back and itís 13.9. My doctor said she would leave it at that and see what happens in a couple months, except for my unexplained pain so she is having me see a gyno-oncologist for a 2nd opinion. She said she will NOT take my ovary, and the most she will do (if she feels it necessary) is do a laproscopic exploratory to look at the area with my chronic pain, and the cyst.

    This same gyno-oncologist actually consulted on my ultrasounds today over the phone and said that my complex cyst is non-vascular and has no nodules or septations (I take it these are good signs) and that it looks to be filled with a mixture of blood and debris. Iím not sure what that indicates, and I didnít think to ask because I was so anxious. She also said it does not look like a dermoid cyst or an endometrioma.

    I guess the conclusion is that, were it not for my chronic pain in that exact spot where a cyst has now formed, this would not be a cancer risk, but paired with my chronic pain it is worth a second look.

     
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    Old 05-23-2018, 08:40 PM   #6
    Lauren19
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    Re: 16 months of pain in lower right abdomen, now complex cyst!

    Quote:
    Originally Posted by Titchou View Post
    The CA-125 test is notorious for false positives. Am surprised they would do that. Sounds like you have chronic cyst issues.
    I thought it must be chronic cysts too, but Iíve had a total of 5 ultrasounds (mostly done as I was experiencing the pain) since this began that all showed nothing - followed by my most recent ones that picked up the cyst. The ultrasound techs also looked for fluid in my pelvis and found none. I asked my doctor at a follow up today if thereís any way itís been cysts all along and she really felt strongly it would have shown up on a scan at some point.

     
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