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Tamoxifen & Pelvic Pain & Pressure

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  • dtad
    dtad Member Posts: 771
    edited March 2017
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    Hi everyone. Pelvic pain and pressure could also be interstitial cystitis. It mimics UTI symptoms but there is no infection. It can be caused by lack of estrogen. I have it and its not fun! There are meds and diet for it. Hope this helps...

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited March 2017
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    Hi all! Jumping in with an update on what was causing my extreme pelvic pain and pressure. I had no pain prior to starting tamoxifen in May 2013. No period cramping, etc. Then within a month of starting tamoxifen I noticed the pain during ovulation. It continued to worsen and started happening more throughout the month not just at ovulation. I finally had had enough and went back to my GYN last April. She thought it was interstitial cystitis. She referred me to a urologist also in April who diagnosed high tone pelvic floor dysfunction. I was referred for PT, had slready stopped tamoxifen end of February, and by August my pain was gone. I only had two meetings with the PT, once in June and once in July. I started suppressing my ovaries in September with Zoladex and started femara in November. Absolutely no pelvic pain. In mid February I underwent a total hysterectomy and BSO. I'm continuing on femara. Still no pelvic pain to speak of. The urologist I saw said, in her opinion, based on my history that it was definitely brought on by tamoxifen. I am so relieved to be pain free.

  • Rozigl
    Rozigl Member Posts: 1
    edited July 2017
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    I am sorry to bother you I know it's been a long time since you used tamoxifen after you stopped how long dose it take for the prusser on your bladder to go away if any one could help me that will be great. I have been using tamoxifen for a month know I have a lot of side effects but the worsted one is the bladder prusser that dose not want to go away if you could help me with any suggestions that will be great thank you.

  • moderators
    moderators Posts: 8,184
    edited July 2017
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    Hi Rozigl-

    We're sorry to hear you've been experiencing this! You might want to check out a more active thread, our Bottle of Tamoxifen thread, and post your question there. Lots of members are active in that thread and someone might have some advice for you! https://community.breastcancer.org/forum/78/topics...

    The Mods

  • dtad
    dtad Member Posts: 771
    edited July 2017
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    Rozig....hi there. I mentioned this before but since this thread has not been active I think its worth mentioning again that this could be interstitial cystitis which can be caused by lack of estrogen. I have it and its very uncomfortable! There are medications and supplements you can take that might help. Let me know if you want more details. Good luck to all navigating this complicated disease.

  • Bmg
    Bmg Member Posts: 3
    edited January 2018
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    I'm on aridmedex for about a year and now having pelvic pain I'm so nervous that it's cancer Had a vaginal sonogram and said my ovaries were normal not sure if it would have shown endometrial cancer ugh I have ptsd

  • dtad
    dtad Member Posts: 771
    edited January 2018
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    Bmg.. read my post above yours. It could be interstitial cystitis. Good luck and keep us posted

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited February 2018
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    Bmg, it could also be pelvic floor dysfunction. Mine was brought on by tamoxifen.

  • Nancy618
    Nancy618 Member Posts: 318
    edited September 2018
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    Found this thread because I'm post menopausal, started tamoxifen a week ago and after only 3 days, started having what I can only describe as menstrual cramps and a vaginal discharge.

    I tried to tolerate it, but this is day 4 and I'm miserable. Called my MO even though his nurse said to give it time and not to call for a few weeks. This much pain wasn't in my wheelhouse when I agreed to that!

    Talked to his other nurse and asked if it was normal on tamoxifen and she said NO. We determined it's not a UTI or vaginal infection. She was going to talk to the doctor and call me back. Still waiting.

    I haven't seen a gyn in over 2 years because the one I had kept moving and I got tired of that. Need to find a new one and make an appointment.

  • MadisonWi
    MadisonWi Member Posts: 1
    edited October 2018
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    Just had my first session of Taxol for breast cancer. Came home with pelvic pain. I have had a hysterectomy!! I don't understand and wonder if anyone else has had this happen to them.

  • moderators
    moderators Posts: 8,184
    edited October 2018
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    Hi MadisonWI-

    We want to welcome you to our community! But we're sorry to hear you're experiencing this pelvic pain, we hope it isn't too uncomfortable! Have you spoken to your doctor and let them know about this side effect?

    The Mods

  • dtad
    dtad Member Posts: 771
    edited October 2018
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    Nancy...I know this is an old post but you seem to have the symptoms of interstitial cystitis. I have it and could give you some info if you are interested. Good luck and keep us posted

  • sm627
    sm627 Member Posts: 142
    edited September 2019
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    Hi Everyone,

    I'm so happy this thread is here. Has anyone found any solution for their pelvic pain / pressure? I know stopping tamoxifen would probably make it all go away. But if anyone has found an alternative I would love to hear it.

    I've been on tamoxifen for almost 2 years now and the pressure in pelvic pain is starting to get very annoying.

    Thank you all for sharing your stories it brings me great comfort. Sending good thoughts to all.

    Hugs to all,

    Sara

  • flashlight
    flashlight Member Posts: 311
    edited September 2019
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    Hi sm627, I'm postmenopausal and a lot older than you, but I had the pelvic pain/pressure about 2 weeks after starting 20mg of Tamoxifen. My GYN ordered an ultrasound and found a large Fibroid. One I probably had for years and the Tamoxifen supplied estrogen to it. I dropped my Tamoxifen dose to 10mg and took only that for a few weeks then started taking 10mg in the AM and 10mg in the PM. This helped me, but my GYN wanted to do a D&C. Last month I had the D&C. They did a biopsy of my lining and they removed the Fibroid. Both biopsy's came back negative! My GYN said Tamoxifen would thicken my lining and could cause some pelvic pressure. So far so good.

  • sm627
    sm627 Member Posts: 142
    edited September 2019
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    Hi flashlight,

    Thank you so much for writing . :-)

    I'm glad to hear that all your tests came back negative. That's wonderful that taking 10mg has worked better for you. About how many weeks did you just take 10mg of tamoxifen for and when did you start to increase it to a.m. and p.m.? Did you notice a significant decrease in the pressure you're feeling?

    I discovered I have fibroids to three of them thanks to the ultrasound. I guess they too woke up because of tamoxifen and all the extra estrogen. Did your GYN happened to know if tamoxifen causes fibroids to grow bigger?

    I'm glad your fibroid was able to be removed. With it not being there do you notice a difference in reducing pain?

    How are you doing overall with tamoxifen? Thank you so much for sharing your experience it's helped me a lot. I'll ask my oncologist next week if I can do 10 mg I hope she says yes.

    Thanks again and I hope you have a good day. ;-)

  • flashlight
    flashlight Member Posts: 311
    edited September 2019
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    sm627, I think I did the 10mg for about 5/6weeks. So many things have happened since then!! Yes, I noticed a decrease within a week. Since I'm postmenopausal the Tamoxifen did wake up that fibroid! My GYN said it acts like estrogen in the uterus. If you are still having your period I think it still can thicken your lining, but then you are able to shed it monthly. If it can thicken your lining I bet it can boost those fibroids. I feel so much better. So far I am doing well on the Tamoxifen....knock on wood!!

    I was not familiar with your type of breast cancer and looked it up. Having cancer has been a learning experience. I wish the best for you...

  • sm627
    sm627 Member Posts: 142
    edited September 2019
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    Hi Flashlight,

    So happy for you that Tamoxifen is working better for you now that you are taking 10mg. I sure hope it stays that way. How many years do you have to take it for? Hope you don't have anymore health issues. I think breast cancer is enough for a life time.

    You sure are right about breast cancer being a learning experience. I didn't know a thing about my phyllodes until I looked it up. When I found out it was such a rare kind of tumor, and discovering it wasn't even a diagnosis option for breast cancer. Org. It was hard for me to wrap my head around. Glad I could do a write-in for my tumor on this site. :-)

    Thank you for the well wishes. I hope things continue to go well with you sending you lots of good thoughts. Hope the journey stays nice and calm for you.

    Thank you for your help.

    Hugs,

    Sara

  • Falconer
    Falconer Member Posts: 801
    edited September 2019
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    On the couch as we speak bc I am bowled over with the pressure in my pelvis. It seems to peak during ovulation time,

    But who knows if I'm actually ovulating. I've had two endometrial biopsies with no concerns but no answer as to how to relieve the pressure and pain. It's almost like early labor cramps. Ugh.

  • flashlight
    flashlight Member Posts: 311
    edited September 2019
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    Hi Falconer, Did your GYN do a transvaginal ultrasound? If you go to questions and put in thickened lining on Tamoxifen there are a lot of post on this subject. My oncologist just kind of said its normal for your lining to thicken and unless you have symptoms like abnormal bleeding we are not going to worry about it. That is why I went to my GYN. Maybe, you need a new one? I hope you can get some answers and relief soon.

  • Falconer
    Falconer Member Posts: 801
    edited September 2019
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    Yes to two TV ultrasounds. One a year since starting Tamoxifen. Fun times.

    There is nothing to see except thickened lining, you’re right. But my abdomen feels like a bad balloon full of jagged rocks.