educate me on ovarian cysts
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marycal that's wonderful news your pain is gone and I sure hope it stays that way. I always find when my hormones are at the highest is when the symptoms flare up, except the fatigue it seems to be a lot more frequently. I wonder if your bleeding is caused by your cyst broking, keep us in the loop with how you are doing. I have decided to hold off for now. My GP is sending out a referral to an onc gynecologist, but that was yesterday I seen my GP and don't expect to see the specialist for months, lol, I do live in Ontario! Although the good side to that is no surgeries anytime soon for this girl!
nem I wish that was my case, been on Tamoxifen over a year now....although maybe it's not even the Tamoxifen causing the darn cysts, likely is, but possible it's something else. We shall see what happens in time. I do appreciate you posting your experience, it gives me hope this too shall pass!
kec how did your appointment go? What was the outcome for Tamoxifen?
Hugs.
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Hi Marycal,
Glad your pain has left the building hope it never comes back. Sorry to hear about your heavy period. I was getting that too for several months and it was making me so tired I would sleep half the day way. It go so bad that I was feeling light headed and it caused me to have very low iron. My GYN gave me 600mg of Ibuprofen to take only during my period to reduce the heavy bleeding. I tried it last month and it worked my period was back to its normal flow before Tamoxifen! Happy Dance :-) Ask your GYN about ibuprofen.
My ultrasound came back good, but they want me to get another one done soon. I will be going back for round two on July 30th. They found a Corpus luteum cyst on my left ovary which according to my GYN is normal to have around your period and they normally go away on there own, but sometimes they can stick around after your cycle is over and grow bigger. I have two fibroids instead of 3 from the last time, but on has gotten a little bigger. The only other problem I have been having besides the cysts is I have had this bloating feeling for about a month now that won't go away. It is very annoying and I would love for it to go away. I have a follow up appointment with my GYN on Aug 13 about the ultrasound results, and hope she can help with the bloating issue. If it isn't one thing its the other. :-(
How are things going with you?
Thank you so much for starting this thread it feels so good to not feel like I'm alone in this crazy cyst Tamoxifen world. :-)
Hugs,
Sara
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Hi Everyone,
I hope you all are enjoying your summer. I had my pelvic US last week and the tech told me that the cyst on my left ovary ruptured and I have another cyst on my right ovary. She also told me that I had a "Narly looking fibroid" Not sure what to make of that comment, but hope to get more info when I see my gyn next week for the results. I also want to ask her why I feel like I have PMS symptoms all the time even when I am not on my period. This whole cramping and bloating thing is getting to be so annoying! :-(
How is everybody else doing?
Hugs,
Sara
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Hi Sara! Thanks for the update. (I'm pretty sure the tech shouldn't be telling you things like that to avoid confusion. Sheesh!). Sounds like your cysts are coming and going. I wonder if the bloating has to do with the fibroid. I have one too, but mine doesn't seem to bother me. I would be so annoyed with constant pms symptoms too. Please let us know what your gyn says! And thanks for the tip on the ibuprofen.
I didn't get a chance to try it as my gyn wanted me to come in immediately for an endometrial biopsy. Good times. As we all know, waiting a week for biopsy results of any kind SUCKS. Thankfully, it was benign. I guess because I had two really heavy periods in a row after not having one for awhile concerned them.vampeyes - for what it's worth, the RN that did my biopsy (never got to see the doc) said that she didn't think the cysts would cause the bleeding, but I don't know.
Regardless, as of now, all is ok. Thankful for that right now. I also wanted to thank all of YOU ladies for posting your experiences and coming back with updates, etc. This kind of connection and help is a bright light. Hoping you are all doing well. xoxo
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"Narly" lmao, I can not believe she said that to you Sara! Geez between the fibroids and cysts no wonder you are in so much pain! I sure hope you get some answers and solutions soon. Have you considered removal of the ovaries and tubes, but then that brings on a whole bunch of other issues.
Marycal - so glad your biopsy was benign! Are your cysts gone now? I have an ultrasound end of September to check on mine, I haven't felt the cramps for awhile so maybe they are gone? Instead just still dealing with the crappy fatigue, which may be caused by "chronic malabsorption" they found with my latest CT. I think a lot is hormones and my anxiety, both are bad around period time.
Let us know how you make out Sara, thinking of you.
HUGS
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After spending almost 2 hours at my gyn office I came away with some good news and some confusion. The good news is that my cyst on my ovaries are simple ones and nothing to worry about. My "Narly looking fibriod" is not that bad only 2cm. Not sure what happened to the other 2 that were on the last two US maybe they were camera shy. My gyn thinks that my fibriods are not the cause of my bloating or cramps since it is only 2cm. However she said it could be related to Tamoxifen, but she isn't sure. She suggested using an IUD progestin birth control to help with the cramps and heavy periods. The really fun thing I get to do next month is have a endometrial biopsy! She tried to do one today, but my cervix did not want to open wide enough. :-) Overall I am glad that mostly everything is okay. Although I am thinking of making an appt with my PCP to see if she can send me to another gyn for a second opinion or run some other test to see what the cause of my pain is just so I know and can stop thinking about it.
Marycal glad your endometrial biopsy came back clear. I know the heavy bleeding can really throw you for a loop and make one worry! I hope your periods can get back on track soon. When do you see your gyn next? Hope your periods aren't so heavy in the future. Do you have any advice for the endometrial biopsy? what is the pain like before and after. Should I have it done before or after work?
Vampeyes Thanks for all the HUGS! to answer your question I don't think I would want to remove my ovaries, or tubes unless they were going to try and kill me like my breast did. My gyn said if I wanted to get rid of my fibroids I could have a hysterectomy. I told her no I already lost a breast I don't want to lose any more body parts now.
Thank you all for listening and your support and love it really helps me not lose my mind and I don't feel alone in this uncertain Tamoxifen journey.
Hope everyone else is doing well.
Hugs,
Sara
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Sara and Vampeyes and Marycal, thanks for keeping this thread alive. My symptoms are so similar it’s a relief to hear of others in the same boat. Doctors’ responses are so odd at times, I swear they act like I’m making this up, so thanks for being here to share.
Sara, definitely go for the second opinion if possible. Your doctor wants you to add more hormones, I know in the form of the PR part not the ER, but still! About the biopsy- I’ve had two now and they’re no worse than anything else our bodies have been subjected to. Good luck and keep us posted
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I'm about three months into the full dose of Tamoxifen. In that time, my estradiol serum shot up incredibly high. This doesn't seem to concern my oncologist but it did concern my GYN. Did an ultrasound and it showed the standard "Tamoxifen Effect" (as the radiologist described) in my uterine lining - thicker and "cysty." The one small cyst I had before I started had doubled in size and there were two other large-ish ones on my other ovary. I'm not happy about these changes and see my oncologist next week. We had talked about starting ovarian suppression too but I am still on the fence about that, as I've gotten differing opinions from some well-respected oncologists. Seems there is definitely a gap in knowledge right now about what is really best to do -- and it's not always super clear for some women, depending on your situation. I really don't think I want to stay on Tamoxifen or at least not the full dose. So I'll discuss if a smaller dose may work in partnership with Zoladex to provide enough benefit and also discuss the percentages again. It's not an exact science for sure and so super hard to navigate! Thanks for starting this thread. It's helpful to see what others have learned.
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Hi how's everyone doing?
Well I've been to the gynecologist three times to try and get this biopsy done. Unfortunately my cervix has been stubborn even with medication, misoprostol, and it would't open wide enough. So I go back next month and try dilators hope it does the trick.
Falcorner, thank you for your encouragement about getting a second opinion. I asked my oncologist about the progesterone IUD, and she said it was fine to take with tamoxifen. Still plan to do more research on the subject before making a final decision.
Just a general question has anyone had really intense menstrual cramps a few days after they've stop bleeding? I've been noticing a pattern with this during my last few Cycles. Pain doesn't last long but it's very intense and I feel like I can't function. My best friend during that time is my heating pad.
Hope everyone's doing well
hugs to all,
Sara
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Hi Sara! Sorry I haven't been on this site much lately. Your cramps sound awful! The only time I've felt something like that was once when we think a cyst ruptured. Do you think that could be happening to you? I think they should be able to tell on ultrasound, but I guess the timing is important. Have you gone back in for a biopsy? How did it go? If you haven't done it yet -- it didn't hurt that much and I could've done it before work. I had some discomfort afterwards, but like Falconer said, it's not worse than anything else you've gone through. Any decisions on the second opinion?
BT39 - the "Tamoxifen Effect". And yet there are still so many providers that say Tamoxifen does not cause cysts, etc, etc. I have a friend who has a lot of family history of breast cancer and her doc told her she should go on Tamoxifen as a preventative. He literally said it has NO side effects. What?? Ugh. If you feel up for it, come back and let us know what you've been finding out and what you've decided to do.
I've been feeling fine (knock on wood) and am back to having no periods or pain or anything. I'm hoping the same for everyone else! xo
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Hi Marycal,
Glad you are feeling well and not in pain hope it stays that way. I do have some good news I talked to my MO in September and she let me reduce my tamoxifen to 10mg instead of 20. I've been taking the 10 mg for about a month now and over the last week or two I've noticed a big difference in side effects. The intensity has gone way down and I feel like I can function better. :-)
As far as the biopsy goes I went three times with no success. My cervix is being stubborn and would not cooperate even with medication to help move things along. I have an appointment on November 13 with a different GYN I hope the fourth time is the charm.
Other happy news is I finally went on a vacation to Hawaii. it was only for 4 days but spending time on the beach and breathing fresh air that wasn't filled with smoke so relaxing and peaceful. I'll include a picture below.
Sending good thoughts to all and lots of hugs. Sara
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Hi all. Wow it's been a while since I've posted on this site, but I started reading to see if there were other people having the same issues as me. Looks like there are! I had really bad (like really really bad) uterine fibroids about 10 years ago. Doctors immediately wanted to do a total hysterectomy. I was still getting my period so I was scared to do something that would put me in instant menopause. I found an interventional radiologist who was doing a relatively new procedure called fibroid embolization. He said it might not work for fibroids as large as mine, but it did! Even my gyn was surprised. So surprised, that he made me find a new gyn. Bye felicia!
Fast forward to 2015, when I was diagnosed with breast cancer, 6 months after my brother was diagnosed (RIP). Oncotype suggested that I didn't need chemo, the benefit was small, so they started me on Tamoxifen even though I hadn't gotten my period in about a year. Bones weren't very strong so Arimidex wasn't first choice. I've been taking the big T for almost 4 years now. I had to get an endometrial biopsy a couple years ago (benign) for a some bleeding. No problems since then.
But the last couple months I started feeling bloated and needing to pee right away. So I thought it could be the fibroids again. No UTI. I just had a pelvic ultrasound yesterday, and the tech told me I have calcified fibroids, even though she's really not supposed to say anything until the radiologist looks at it. I'm waiting for the "official" results, but I hope I don't have any ovarian cysts. It still worries me, since I've always had to push my doctors to do anything (like biopsying my breast "cyst"). Thanks everyone for sharing your stories, really helps calm my nerves!
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Loving is Living - I am so sorry for the passing of your brother. As for ovarian cysts I use to stress all the time about them, it wasn't just the pain, but the fear of cancer. I had a complex cyst and a simple cyst, I had read so much stating that complex cysts didn't go away and guess what, mine burst and it's pretty much gone as of my last ultrasound. Stay on top of those doctors to keep an eye on what is going on. I hope that you are not suffering with too much pain. Thinking of you.
xxx
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Thank you vampeyes ❤️ I got the results of my US. A small calcified fibroid and thickened endometrium. My doctor thinks it's better to do another endometrial biopsy, just to be extra careful. So I'm scheduled to go in tomorrow. Those are so painful 😣 but I'd rather be safe than sorry.
Lots of love to all!
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Oh no LovingIsLiving, I am so sorry you are going through that awful procedure today. Oh hun, I will be thinking of you and sending good vibes your way that hopefully it will not be a painful one! HUGS girl, you got this.
xxx
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Reading through this in hopes of, as the original poster put it, deciding what level of freak-out to employ. I had a TVUS a couple days ago after blood test revealed a super high estrogen level and was found to have a "cystic mass" on one ovary and a couple smaller ones on the other. CAT scan is next to get a better look. From intensive googling and searching these boards it sounds like tamoxifen can cause both elevated estrogen levels and ovarian cysts, so I'm trying not to be too worried. Reading through this board, no one came back and said their cysts turned out to be malignant. Also, since about 2006 I've had 3 TVUS procedures and one abdominal CAT scan to check on a fibroid and none of them have ever revealed an ovarian cyst until now. Furthermore, I had the BRCA testing during last year's treatment and that came back negative, so it doesn't seem I'm particularly high risk. So I'm thinking it's all the fault of tamoxifen, but hoping for reassuring news.
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Just an update from me: I reduced my Tamoxifen dose in Sept. to 10 mg for 5 weeks and did a repeat TVUS. In just 5 weeks, the lining was half what it was and the cysts were almost completely gone. The Tamoxifen had caused my large cysts, which I was able to show, and I didn't want to start with biopsies. My estradiol, which was sky high on 20 mg, also dropped way low again when I was taking 10 mg. Large cysts can produce large increases in estrogen, so the GYN thought the Tamoxifen created the cysts and the combo of the Tamoxifen and cysts (but mostly the cysts) created the spike in estradiol. I added Zoladex injections -- which was suggested I consider anyway -- to quiet the ovaries down. It worked and things are generally back to "normal." :-) The lining is much, much thinner and the cysts are gone except one that is tiny now. In case this is helpful for anyone to know!
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Thanks, BT, that is helpful and somewhat reassuring. I had my CAT scan last night and am still waiting for the results of the ovarian marker blood tests. It's been a week and I'm just about beside myself. I keep coming back to read through this thread, because it seems like everyone who posted similar symptoms to mine turned out just fine, but I'd forgotten how awful the waiting is.
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Hi PurpleCat - I am thinking about you and hoping you got some good news from the CAT scan and blood markers. Waiting is indeed horrendous. Tamoxifen definitely creates a lot of activity in our uterus and ovaries. Hopefully it's just all benign activity. I hope you report back with some good news.
BT39 - So glad to hear back and that everything is fine! So interesting that the cysts created the spike in estradiol. Thankfully you figured that out. Nice work!
sm627/Sara - Hawaii! I guess it was awhile back at this point, but yay!! I'm sure that was an amazing break. I'm so happy that you went to 10mg and got some relief. That's wonderful. Did you ever get that biopsy? Hope all turned out well.
Nothing new on my end (still knocking on wood!)
Hugs to you all. xo
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Thanks, Marycal. The waiting isn't over yet, unfortunately. The imaging was was reassuring, but the clinician is concerned about the high estrogen and has referred me to a gyn/onc surgeon who can't see me for almost 3 more weeks. Fortunately, I have my checkup with my surgeon next week and am planning to discuss this all with her.
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So glad I found this thread! I've been on tamoxifen for 3 months and have a 4.5cm hemorrhagic cyst on one ovary and the follow up u/s showed more cysts on my left. I'm having mild pain, frequent urination and bloating, we are just watching and waiting. I have never had issues with cysts before, I know this is the tamoxifen. I don't see my MO until the summer, my initial follow up was postponed because of covid-19. My Gyn has been following it, she isn't too concerned but has warned me about ovarian torsion and to call her right away if I experience "fetal position inducing pain" that I will need emergency surgery.
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Hi deweygirl - I had a very similar experience! I started getting cysts within the first few months as well. My gyn felt the same way, watching and waiting and really just concerned about the torsion. I hope your cysts have gone down and you're feeling less pain, etc. I am about to have a check up appt with my MO and it made me realize that it's been months since I've even thought about my ovaries. I haven't felt any tinges or pain and in general have been feeling pretty good (except of course all that goes along with living through a pandemic). So I just came on to see how everyone is doing and to say hi and say that, at least for me, the cysts have definitely come and go, caused pain, etc and then didn't. I don't know if things are ACTUALLY ok down there, but for now anyway, I don't feel as worried.
Sending you all hugs!
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Hi Everyone,
Sorry it has been so long since I was last here. deweygirl I sure hope things are getting better for you I know how it feels to be in pain and have so many problems down there. Sending you lots of hugs and good thoughts. I hope you were able to talk to your MO about the problems you have been having.
Marycal Glad to hear you are doing better I hope it stays that way now for the long term. How did your appt go with your MO? Sending you good wishes.
My update is that sine being on 10mg of Tamoxifen for the past 10 months things have gotten better that's why I haven't been on BC.org that much. Most of my side effects have become mild and the really horrible cramps, heavy periods and cyst problems have gone away. I had my endometrial biopsy last November and that came back clear. I asked my GYN if I could have yearly US just to check on things and she agreed, so I had on this past June. My uterine lining was a little thicker then before but still considered normal. However they want to do another US in September just to make sure things are alright. I have an appt on 9/8. My GYN had me talk to another doctor to get there input about follow up care and that doctor said that a US was not needed unless I had systems. However, I told her that due to having cancer before along with having a strong family history of cancer I would like to have a US done annually while on Tamoxifen just for peace of mind.
Covid is a different story I have been laid off since April, and I was told last month that the preschool I work at will be closed for the rest of this year. Dealing with EDD is next to impossible to get a hold of, so I am trying to find some kind of job that is outside so the risk of getting covid is less. Right now I am thankful that my family is healthy and safe.
Wishing you all good health during these crazy times.
Hugs to all,
Sara
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