Tamoxifen - anyone end up with pelvic organ prolapse????

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gentianviolet
gentianviolet Member Posts: 316
edited November 2018 in Hormonal Therapy - Before, During, and After

After 4.5 years on tamoxifen, I now have pelvic organ prolapse (POP), not that I wanted to travel a new road. But I can't help but think that the tamoxifen may have contributed to this new condition. I assume that whether it is an AI or tamoxifen that it would not matter as far as the pelvic area is concerned, it hates not having some estrogen. Obviously there are many factors involved in POP but I just was wondering if others had a similar problem and mine has gotten bad enough over the last year and a half that I am having surgery in two weeks. Anyone that can give me some insight on whether they faced a similar issue would be appreciated. Sending good thoughts.........

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2016

    Sorry, I have not personally experienced this condition but wanted to send positive wishes regarding your upcoming surgery. I certainly agree that our "lady parts" like having some estrogen activity!

    Perhaps by responding here and bumping your question up, someone else will see it and offer pertinent advice.

    Will yours be an outpatient procedure?

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2016

    Hi vinrph

    Thanks for your concern, I appreciated your post even though you do not have this problem........I sincerely hope you never have to learn about this issue.

    This is an overnight procedure with 2 to 3 weeks of taking it very slow. I ended up going to three different urogyn docs to find one that would do the procedure that I wanted. My first two were male and the last one was female. Finally someone that understood my request!!! Apparently male urogyn have a very rigid opinion of what women (surgically) should and shouldn't do with their vaginas.

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  • muska
    muska Member Posts: 1,195
    edited March 2016

    Hi gentianviolet, pelvic organ prolapse is a vey frequent condition amongst aging women and I don't think it is directly related to your taking tamox.

    Last year, a close family member who was 86(!) at the time had it surgically fixed. The surgery was in the morning, they kept her overnight for observation, discharged the next morning. She is doing great. And btw, she never took any hormones or had hormonal treatments.

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2016

    Muska - I am aware of all the different factors that can enter into pelvic organ prolapse and I did not mean (in original post) to imply that tamoxifen was solely responsible. But the question was meant to find out if others, whether on tamoxifen or an AI, had experienced this issue. I do believe it is something that women don't really discuss as openly as other female issues.

    Thanks for your comment and sending good thoughts.

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited March 2016

    When I started Tamoxifen at age 53 & not yet menopausal, I became incontinent. I saw 2 different urologists. One thought it was the estrogenic effect of the Tamoxifen. The other thought it was the anti-estrogenic effect. This did get better over time. It has been suggested that I get a hysterectomy due to repeated uterine polyp formation & thickening of the lining causing funky bleeding. But, really don't want to make matters worse for myself again. Hysterectomy can cause pelvic floor problems also. Anyway, I think your issues could be related to Tamoxifen. Would love to know what procedure you're having. Good luck with your upcoming surgery!

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2016

    Hi Coraleliz-

    Yes, I, too, had incontinence within a month on the Tamoxifen. But I was 69 when diagnosed so I guess being of that age I was not surprised. Although I suspected tamoxifen didn't help the prolapse which followed, I also had a delivery of my first born that included forceps which could be a part of this picture. But my regular gyn kept trying to get me to use estrogen vaginally to help the prolapse........which we all know may not be the best thing with BC, however it certainly helps women that don't have to watch hormone levels. By the time I came off tamoxifen the prolapse was extreme yet the incontinence corrected itself within three months as well as all the hip/knee pain issues I was having.

    The procedure I am having is called a Lefort colpocleisis. Basically it is closure of the vaginal canal, which provides all the support needed to correct various prolapse problems. This surgery is 95 to 98 percent effective so that a prolapse does not happen again. Soon I will be 76 and my main focus was to find the surgery that had the highest odds of a permanent fix. Yes, I love sex (penetration) but at this point I need to be as sure as I can that the inconveniences of a prolapse, of which there are many, don't resurface with future surgery corrections. The second urogyn, a male, immediately asked me if my husband understood what this surgery meant for him. Unbelievable! And of course my husband knows just this surgery means. My husband words were, "It's your body, you need to do whatever your comfortable with."

    It has been a long road of research to decide what surgery to do but it all came back to my best odds of not suffering a recurrence with the prolapse.

    Thank you for asking about the surgery. Sending good thoughts.

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  • ntguthrie
    ntguthrie Member Posts: 1
    edited March 2016

    YES! At 49 I had a mastectomy for DCIS right breast. At 61 I had a lumpectomy on my left breast (stage 1 tumor) with radiation and started on Arimidex. I had EVERY side effect named. I stopped taking it after 30 days because I could barely get out of bed in the morning. My oncologist put me on Tamoxifen. She told me it was the gold standard. I had hot flashes and vaginal discharge which were awful!! Nobody ever mentioned pelvic organ prolapse. Within 2 years of taking Tamoxifen, my bladder looked like a baby's head crowning! I saw a Uro-gynecologist. She had me coming for electronic stimulation every week. It made NO DIFFERENCE. After almost 5 years on Tamoxifen, I took myself off of it. I believe it caused my bladder prolapse! I've only been off of it about 3 months and I noticed a difference today. It seems to be better! I decided to google it today and that's how I ended up here on your post. I wanted surgery to fix it, but have decided to give it a bit more time. Good luck with your surgery.



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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Dear ntguthrie,

    Welcome to our community. We are glad that you found us but so very sorry about your experiences with pelvic organ prolapse. Thank you for sharing your story. Please keep us posted on your recovery. The Mods

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2016

    I had the Lefort colpocleisis on Tuesday morning and after one overnight at the hospital the catheter was removed and I was released. Surgery lasted about 1 hour and 45 minutes. I have not had what I would call pain more pressure that is very uncomfortable. It still takes me some time to pee as she did a cystoscope so the urethra is somewhat swollen, however I am hoping this resolves in a few days. I stopped any pain meds last night and opted for a small glass of wine with dinner tonight. So far all is healing as I think it should. I am typing this on my phone and it's almost impossible to hit these tiny keys in the correct order. I will log on with my computer tomorrow and give a fuller account. Sending good thoughts.

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  • treelilac
    treelilac Member Posts: 245
    edited March 2016

    gentianviolet, thank you for posting this as it answers some of my own questions. I hope you have a speedy recovery and never have to be bothered by prolapse again!

    I felt I had prolapse tendency while briefly on Aromasin. It was like re-living a late pregnancy when the baby was sitting very low. Worse yet, because Aromasin also caused constipation so I strained hard. I promptly stopped the AI and things appeared to revert to normal. Later I told my ob/gyn nurse, she seemed astonished but didn't dispute the possibility. I was 46.

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2016

    After the surgery was over the doctor told me that with 75 year old vaginal tissue and the size of my prolapse, a Lefort colpocleisis was the only surgery I could have gotten that would give me my best chances of no relapse.....95 to 98% totally corrective. Loved hearing that because I really did not want to have to repeat this operation at even an older age. Until you suffer a prolapse it is (much like have bc) impossible to realize how this alters one"s life......the bonus being it is not life threatening like bc.

    The operation went as planned except she said my anterior prolapse was larger than anticipated and she had to allow extra time to deal with the amount of excess tissue. She did a D and C and along with the cystoscope she did a minor repair to the rectum. The swelling from the cystoscope has gone down and peeing is now easier. I was trying to be careful of constipation while on the pain pills and it ended up that now that I no long had to wear a pessary (which pressed against the large bowel) I had no problem and had to stop the stool softeners after stopping the pain pills.

    I am a bit sore, not even close to pain, and I am on my fourth day out from surgery. For older women looking for a solution for their prolapse, look up colpocleisis, if sexual penetration is not your main concern. Sure I will miss it but I would rather be able to pee and poop with no problems because I do that on a daily basis. And I surely don't miss that bulge that was ever present whenever I stood up, not to mention trying to maneuver it when I sat down. Lady parts are not fun when they don't stay in there normal place. This is a subject that women seem embarrassed to speak about or admit to. I see the doc in about 10 days for my first check up.

    Hoping all are well this Easter season and sending good thoughts.


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

    I ran into this thread and I am bumping it up to the top because I think the information should be out there. I noticed someone on another thread describing pelvic organ prolapse although she did not have a name for it, so I searched for it and found this two year old thread. It is very possible that tomoxafin use, AI’s, or just low estrogen could encourage prolapse. There are many other ways of treating it short of colpocleisis. The least invasive option being the use of a pessary which is a non-surgical fix. If your lady parts are distressed from tamoxifin or AI's, go for the donut style pessary because it has no rough edges. It's amazing to me how most women never hear about prolapse unless it happens to them. But our society dosen’t do a good job of teaching us about our bodies, does it...

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  • YESproblems
    YESproblems Member Posts: 4
    edited November 2018

    THANK YOU!!!!

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  • YESproblems
    YESproblems Member Posts: 4
    edited November 2018

    IMPORTANT NOTES: I've been in the fitness industry since 2002. Up until 2007, I was a Personal trainer with free weights. I have been teaching ONLY Pilates, 4-6 days a wk(I own a studio) since stopping the free weights style. I pretty much Kegal, AT a MINIMUM, 50 x's a day. I have had 3 kids all natural/vaginal deliveries. I take yoga on my free time. If I"m lucky, that's 1-2x's/wk but usually it's once every other wk. I try to jog 1-2x/wk , but sometimes, 3 wks will have past before I get another jog in.

    I wax my "bikini area" as well as more areas ~2-3 a yr. In doing this, MYSELF, I use a mirror...about a yr ago I noticed that, what I THOUGHT was the end of my cervix. I remember thinking, well, perhaps taking T, the lack of hormones are making some changes in there. At this point, no other thoughts, not even a concern for myself,

    Jump to 5 days ago. November 1, 2018. I'm waxing. within 2" from the vaginal opening I see, AGAIN, what I THINK is my uterus, with a bit of a red cherry looking spot near, what looks to be, a tiny hole (which is closed) Now, I'm frightful...Is my uterus falling out??

    I get an appt to see a DR. the next day. GREAT NEWS, it's NOT my uterus, it's my bladder, stage 1/2 prolapse. REALLY!!!!!?

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  • YESproblems
    YESproblems Member Posts: 4
    edited November 2018

    THANK YOU for sharing

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  • Annie-B-7-14
    Annie-B-7-14 Member Posts: 52
    edited November 2018

    yep, happening to me. Looking at surgical repair in January...

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