CVID Female Issues Community Group

A place where CVID patients and supporters can discuss topics specific to women of all ages. (Women only please)

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Ovarian Cyst and thickening of the Uterus Lining

I've been having a significant amount of pain "down there" after sex, bowel movements, and kind of just randomly whenever. It's kind of like severe menstrual cramps that make me kind of dizzy. After bowel movements the pain makes me exhausted, and doctors are trying to figure out what's causing my pain. My PCP sent me for an ultrasound 2 days ago, and she just called to tell me that the ultrasound found a cyst on my left ovary and shows that the lining of my uterus wall is thickened. She told me that they will do another ultrasound in 4-6 weeks to determine whether there are any changes to the cyst size or changes in the uterus lining. I'm not sure whether the cyst might be caused by the increased thickness of the uterus (and that's a normal thing, or whether that's a bad thing as well). I wish I'd been able to talk to her in person because I think I was kind of shocked by the news of the cyst. She also said that there's an indication I might be hemorrhaging into a nodule (can't think of the word she used) and that the blood is turning it into a cyst.

The good news is that i have an appointment to see a gynecologist in April, so hopefully he can help me understand it better. I would love to hear whether any of you have had something similar and what caused it.





All of these things, though problematic, are fairly common, at least in our world. I have had several cysts, some of them are referred to as 'chocolate cysts' because they are filled with dark blood, fibroids and your standard everyday cysts. They can cause allot of pain but do not always need to be removed. Many of them burst on their own, or are just reabsorbed by your body. Your new gyno should be able to determine the seriousness of the situation.

Their is a name for the thickening of the uterous and I cannot give it to you exactly, but it's something like adenomus, or something. It is sort of like a spongy, heavier uterus than normal. That also can create discomfort and extra bleeding. It sounds like you may end up having to consider hysorectmy or myomectemy or some kind of surgery. The only real good news is as you age many of these symptoms lesson. For me, there was no more waiting after years of pain and laporoscopies, and surgeries we finally decided to do a complete hysorectmy. Unfortunately, once the surgeon got in he had to abandon the whole thing. I had way too many adhesions from prior surgeries that caused everything to sort of matt down. He told me if I wanted to, I could possibly find an oncolgist surgeon to try to do the surgery. After awhile I just gave up and dealt with things as they came up. Now, I have vulvodynia so badly I cannot endure a pelvic exam. I won't go on further, but you get the gist.

If you are having pain after a bowel movement as well as after intercourse it sounds to me like you have adhesions that are probably connected to your bowel. Pelvic pain is a very difficult problem to have. Answers are hard to come by and there are few success stories. Here I am at 61 still having significant enough pain to be considering a pelvic block. I have been afraid of doing it for some unknown reason, but I am getting desperate now. It supposedly works for 6months to a year. As long as you know there is no cancer or worse, your prognosis is great except for the pain. I hope your new dr. is a good one and can help to relieve some of your symptoms. With the enlarged uterus they used to just remove them, but I am thinking now there may be something they can do that is less drastic.

Good luck and let me know what you find out.
Group FounderPrincessButtercup

Thanks Fezzy, that helps me understand more. I talked to my friend (who has had a few ovarian cysts), and she explained that many of them just get reabsorbed by the body. I sure hope that this is that kind, but the thing that concerns me is that over 20 years ago I had sharp pain in my left lower abdomen area when I would bend over. They did an external only ultrasound on me (I wonder if they just didn't have vaginal ultrasound wands back then?) and they found nothing. My family doctor (different from the current one) said that perhaps it was due to constipation as that is also where the small intestine loops and he suggested that perhaps it was "kinking up" when I bent over. The fact that I had pain that long ago is what worries me that perhaps this isn't a transient condition. I certainly hope it is though.

Left sided pain is almost always an intestinal issue. Chances are you were experiencing some type of colitis and it resolved itself, which often happens. You could have a small diverticuli in that area or it may just be the location that is an issue. Your doctor may have been right. You are beginning to sound more and more like me. I have had nothing but pain and anguish with my abdomen and sexual organs. Things didn't really start to get so bad until I was in my 40's and 50's. I did have problems with endometriosis in my 30's but I could still function. I would get sick sometimes after sex, but of course, no one had a clue why. From there it just went downhill. 3 miscarriages, 2 divorces, the shop got closed down, which btw did not really help. I continued to have pain issues and infections.

Now I know that allot of the infections I'm still getting down there are a result of the fact that I have no IgM at all. I think that makes a big difference. IgG helps some but once those pelvic infections take hold I have to go on a pretty heavy dose of anti-biotics to get back to 'my' normal. I'm at the point now if I stand too long or walk up too many flights of stairs, I can get an infection. It seems insane and no one would ever believe it unless they understood CVID.

As usual, all my best to you.


Just out of curiosity do you know what your IgM levels are?
Group FounderPrincessButtercup

Hi Fezzy, Thanks for your responses. I know that my IgM is low, but I don't remember how low. We just moved and things are still crazy here. I hope I remember to post a response when I find my test results. :)

I hope you're doing well! :)

I still think that very low IgM levels could be connected to the infections that we so easily get down there. There is not enough research out there for me to easily find right now, but someday we may know it for sure.

In the meantime, don't push yourself too hard. Just plain old 'over-doing' it, whatever that is for you, could be enough to really aggravate things. I hope you remember to let me know the test results.

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