Ovarian Cyst Rupture?

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NotVeryBrave
NotVeryBrave Member Posts: 1,287
edited October 2018 in Hormonal Therapy - Before, During, and After

Hey everyone - I'm not sure if this is the right place to post this or not. I'm not even sure yet if it's what I'm dealing with at this point. I woke up the night before last with some abdominal discomfort, kind of crampy feeling. I was able to go back to sleep, but it was still there in the morning and then became absolutely horrible rather quickly. The pain was all across my lower abdomen and into my legs and back. My legs both hurt and felt weak. I started to feel kind of dizzy as well, but that might have been from the pain. I went back to bed and it slowly got better over about an hour or so. Now I just feel a little bit of discomfort and occasional stronger pains.

My periods stopped over a year ago during chemo. I was on Tamoxifen from September to December and have been off it since due to a number of SE's (severe leg cramps, problems with concentration and depression, constant vaginal discharge). The Tamoxifen also gave me feelings of pelvic pressure and pain at times as well as feelings like ovulation pain. I asked for a baseline US before I started it and both the GYN and MO said no - that it's not standard of care and they would assess if needed for bleeding or other symptoms. Of course, no one cared that I had "other symptoms" since I wasn't bleeding.

I'm concerned because, while I'm thankful that the pain is greatly diminished, the amount of pain I was in yesterday was enough to have me thinking of calling an ambulance and I've never done that. I want to know the cause of this pain and I worry about ovarian cancer, too. I had genetic testing done with my BC diagnosis and it was negative, but I've had an aunt with ovarian cancer, as well as pancreatic, prostate, and lung cancers in my family.

So I went to see my PCP today and am going for abdominal and pelvic US tomorrow. He gave me the options of doing nothing, doing the US, or doing a CT. Anyone have anything similar? What was the outcome or treatment? Any advice?

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited March 2018

    I developed ovarian cysts when taking Tamoxifen and one ruptured. The symptoms were very much like you described. After the rupture I went to my gyn again and she confirmed the rupture with a pelvic ultrasound. I'm not sure if she could see the "rupture" itself, but I had already had an ultrasound a few weeks before due to the pelvic pain and pressure I had been experiencing, which is when she found the cyst in the first place.

    Editing to add that there was no treatment. At the time she found the rupture, she checked the other ovary and found that a new cyst had formed on that side (in just a few weeks!) She said she was certain the cysts were caused by the Tamoxifen (I was, too, as studies show many premenopausal women develop them while taking Tamoxifen) and there was nothing to do to prevent it. I ended up discontinuing the Tamoxifen, these side effects were only a few of the ones I experienced.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2018

    I was prone to both ovarian and breast cysts from a pretty young age and had a lemon sized ovarian cyst rupture a number of years ago, pre-TAH/BSO and breast cancer. It was exceedingly painful, initially thought it was a ruptured appendix at the ER. Same as SummerAngel - no treatment except for pain meds, but I will warn you - the pelvic exam might be uncomfortable if you are still experiencing pain.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited March 2018

    Thanks for the input. I had an ovarian cyst that bothered me once, probably 10-15 years ago. I saw my GYN that time and had an US that showed a complex cyst. It was uncomfortable but not really painful. I guess it just resolved over time - there was no follow up or anything.

    I heard back from my GYN today. She considers me in menopause with my FSH level and no period for over a year. She said something about not expecting cysts in menopause unless it was already there before. Good grief. This is why I wanted the baseline.

    So the twinges I was feeling became worse again tonight. Still not as bad as yesterday morning but from my groin into my waist. How long does it take to go away?


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  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2018

    For me - I had outright pain, and took narcotics, for several days, then discontinued them but felt discomfort for probably a week. I have a very high threshold for pain - after a number of my breast cancer surgeries I took nothing stronger than Tylenol, but the ruptured cyst really hurt. The doc explained that this is akin to internal bleeding because when the cyst ruptures there is no exit for the blood and fluid so it takes a while to absorb and work itself out, but in the immediate aftermath it is an irritant. Hang in there!

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  • Sara536
    Sara536 Member Posts: 7,032
    edited March 2018

    You might want to rule out possible diverticulitis before assuming the pain is from a ruptured ovarian cyst. Just after starting on anastrozole, I ended up in the ER with incredible abdominal pain which a CT showed to be diverticulitis. Diverticulitis can be deadly if not treated quickly so just “toughing out" the pain when you don't really know what is causing it could be a big mistake. If I were you, I would get a second opinion from a doctor who is not an oncologist. I hope all goes well.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited March 2018

    I'll have the US this morning and see what that shows. The ache is still there, but not the really bad pain. Maybe it's a cyst that hasn't ruptured but is pressing on something.

    My MO hasn't been consulted at all. I'm not too fond of him these days and I think he feels the same. I saw my PCP and emailed my GYN. The PCP considered diverticulitis as a possible cause, but I have no bowel changes or fever. I will do a CT if needed but hoping the US is enough. US is best for ovaries.


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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited March 2018

    I also had nagging pain for a few days after. The cysts caused me nagging pain as soon as they formed. The cyst that was discovered on the other side after the first side ruptured continued to cause nagging pain for a couple of months, after I stopped taking Tamoxifen it took a while for it to resolve. I no longer have cysts or pelvic pain (which makes sense, as I had never had these issues before Tamoxifen, either.)

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited March 2018

    So ... had the US today. I don't have the report and the tech wasn't the type to say much about what she was seeing. My PCP called and said everything was normal except a 1.8 cm cyst on the right ovary (pain was on the left) and the uterine lining is 1 cm thick. He wants me to follow up with the GYN.

    The lining is considered thick for menopause, but I'm always complex. My periods stopped because of chemo and never restarted. I took Tamoxifen for 3 months and quit it 3 months ago. My FSH shows menopause, but the LH and Estradiol don't. Ugh.

    So now waiting to hear from GYN.


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  • vampeyes
    vampeyes Member Posts: 1,227
    edited April 2018

    Notverybrave - have you heard anything yet?

    I developed the same pain 3 days ago, it's only getting worse. I sat down ( more like plopped) tonight for dinner and felt the pain shoot through the vagina and radiate in the pelvic region. Sometimes I think a big fart would help, but this pain is worse than gas. Guess I will be contacting the doctor on Monday if it didn't go away. 😢

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  • gb2115
    gb2115 Member Posts: 1,894
    edited April 2018

    My cysts tend to hurt for a day or so. Sometimes rather severely where I decide if I get any other symptoms I will go to the ER, and then it gets better. I was getting them pretty regularly after starting tamoxifen, but now that I think about it, it hasn't happened in awhile.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited April 2018

    I haven't heard from the GYN - she was supposed to be away this week.

    I did get the report - simple vs follicular cyst on the right ovary (pain was on left). Endometrium measured 1 cm - normal for some part of cycle for premenopausal, not normal for postmenopausal. Radiologist recommendation is follow up US in 3 months.

    I have not had any more instances of that kind of severe pain. I get occasional twinges on both sides. Who knows!

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  • vampeyes
    vampeyes Member Posts: 1,227
    edited April 2018

    My pain is better this am thankfully! I guess time will tell, but I am really hating the Tamoxifen. Took a second longer to convince myself to take it just now. Woke up to a very vivid dream, that took convincing it was just that - a dream!

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  • vampeyes
    vampeyes Member Posts: 1,227
    edited May 2018

    Just wondering how things are going NotVeryBrave. My pain came back again, going to mention to my oncologist next week when I see him.

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited May 2018

    No further bad pain. I get the occasional twinge on both sides that reminds me of how I felt when I'd ovulate when I used to have cycles.

    My GYN wants me to follow up as radiology advised - repeat sono at 3 months. I'm to let her know and be seen if I have any more bleeding. I think the bit of spotting I had was just due to the vaginal US probe.

    I remain off any hormonal therapies for now. Too many SE's with Tamoxifen even before these current issues. If my MO agrees that I'm in menopause then I'll probably be recommended an AI, but I have concerns since I already have osteopenia.

    Actually planning to find a new MO as I'm not impressed with my follow up care.


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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited June 2018

    OMG. I can't stand it anymore. Nothing ever seems to be good news and you never get off this crazy train.

    I just got a call from my GYN. The follow up US shows the endometrial lining has increased from 1 cm to 1.6 cm and the right ovarian cyst is now like 2+ cm. She went through possibilities of endometrial biopsy vs D&C vs laparoscopy for the cyst. Good grief.

    So I guess I'm going with the D&C - probably not until August due to vacation schedules for me and the doctor. And they will repeat hormone levels as well. Apparently it doesn't matter whether I'm in menopause or not. An increasing lining without shedding is a cause for concern.

    I want this taken care of and yet if I hadn't had the original pain that had me getting the sono, I never would have known anything was wrong. It's exhausting.


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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2018

    So ... I got my period back after a year and a half. At least I guess that's what happened. So typical - right as I was leaving for a 2 week vacation!

    This could be good - as in an explanation for the uterine lining thickening. Since I'm not at home, I haven't contacted the GYN to discuss it. It seemed like a pretty normal period, though. I do wish that I knew what things looked like afterwards.

    Wow. Almost 52 and back to cycles? Now they're really gonna want me on the Tamoxifen.


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  • vampeyes
    vampeyes Member Posts: 1,227
    edited July 2018

    I wonder if you will still have to do the D&C not that you have a period again. How's the pain? Thanks for keeping us updated NotVeryBrave! :) Enjoy your vacation, we are camping this weekend so my luck is like yours and I expect my period will show up the day of. lol

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2018

    Yeah - I'm wondering the same thing. If the lining was so thick, seems like the period would have been worse. Or maybe it was like that before? Or maybe I didn't lose all of it? Who knows.

    Second real day of bleeding was pretty uncomfortable but complicated by flying across the country in a direct flight. No pain with the ovaries any more.

    And yes - we're visiting National Parks and tent camping every few days, interspersed with hotel stays in the recent super hot west. Timing is everything!


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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2018

    I realized that I never updated this post!

    I was advised by my GYN to have another US in "a week or two" - which I couldn't do since I was away. I figured I would wait and do it after the next period, but another period never came. I finally had the scan done last month - all normal. No ovarian cyst at all and lining of only 0.3 cm now. I requested having my hormone levels rechecked and they have moved further towards menopause now.

    No one seems to think that I would have had any of these problems from only 3 months of Tamoxifen. I'm not sure. Since no "pre" exam was done, it's hard to say. I'm now waiting until I see a new GYN in December to determine the best thing to do. My MO - who pushed me taking Tamoxifen - has now changed his tune. He now doesn't think a "re-challenge" is in order, citing my mental and emotional difficulties from the last time as more of a concern than my physical ones.

    I worry about not taking anything but worry if I do. I seem to have kind of extreme reactions to medications.

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