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Tamoxifen & Pelvic Pain & Pressure

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13

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  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012
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    miri, I've long had what I've considered a mild case of Irritable Bowel Syndrome, though I was never officially diagnosed. I certainly have a very sensitive gut. About 6 months ago I started seeing a new gastroenterologist, who suggested I start taking a probiotic. So I did.

    It really changed my life. My gut issues were history! Now, I have to say that once I started taking Tamox the probiotic seemed not to work as well. I've been taking it twice a day, which might be helping a little but I don't feel like I'm "cured" the way I felt after I started the probiotic.

    So anyway, I haven't had the pelvic pain others have talked about. I realize it feels like "period pain" but my thought was that it's probably really gastrointestinal, which is why I suggested the probiotic. I don't have my uterus, so I know that any sort of "period pain" I might get would have to be coming from somewhere other than my uterus!

    (My gastroenterologist wanted me to take "Align," which is available at Costco but it's rather expensive. I decided on a cheaper, no-name type -- also from Costco -- and as I say it helped a lot prior to the Tamox. Perhaps I'll try the Align next time -- maybe one of those per day would do more than two of the no-names, for about the same price. Worth a try.)

  • miricurt538
    miricurt538 Member Posts: 2
    edited February 2012
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    Cycle, I hated to hear that you had started back having the Irritable Bowel symptons because I know how disappointing it an be to think you've got something under control and then have to deal with it again.  Our Gastro said my DH has a little of the same.  First he's constipated and then he has diarreah (can"t spell sh*^ anymorre.  I am wondering if the Tamox isn't causing bouel trouble with me because I do have a lot of gas, usually at the time my pelvic area is cramping. I haven't gotten me any probiotics yet but plan to.  Do you have any experience with kefir?  I've been studying about it and it sounds really marvelous.  You can buy it but I'd rather make mine.  I'll let you know what I come up with if you don't already drink it. 

  • LtotheK
    LtotheK Member Posts: 487
    edited February 2012
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    Huh, I am trolling around the boards, as I am having issues, too--an MRI showed fibroids and ovarian cyst.  I did not have these before Tamoxifen, so I really think there must be a correlation.  I've had pelvic ultrasounds in the past, too, so I'd know.

  • coraleliz
    coraleliz Member Posts: 158
    edited February 2012
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    Ltothek-What are they going to do about your cyst? & your fibroids? My pelvic pain improved when they reduced my Tamox dose to 10mg. I've recently gone back up to 20mg.

  • LtotheK
    LtotheK Member Posts: 487
    edited February 2012
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    Hi Coraliz, my doctor basically said "welcome to being a woman".  She's not too forthcoming about all the Tamox SEs, I've actually educated her on a bunch.  They will do a pelvic ultrasound.  My gynecologist says they don't do annual ultrasound for uterine lining, as Tamox always increases it and guarantees biopsies.  They go by irregular bleeding.  But, from what I can see now, this is moot--I'll be doing ultrasound for my pelvis thanks to these new inhabitants.

    I am so totally sick of having to be at so many doctors for tests:  MRI for breasts, ultrasound for pelvis, MRI/specialist for back pain, Endocrinologist for bone loss...and this is to say nothing of the regular stuff:  eyes, GP, dental, lymphedema PT, etc.  I'm so SICK OF IT!!!!

  • peachy-pie
    peachy-pie Member Posts: 20
    edited March 2012
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    Glad I found this thread.     About 3 weeks ago I started to feel as if I had a UTI or bladder infection.    By week 2 it seemed to have gotten worse,  so I visited my OB/GYN last week.   He sent me for a urine lab which came back fine.   And went for a pelvic ultrasound yesterday morning,  but won't know the results for that until Tuesday.    I now have lower back pain, pelvic pressure,  sometime anal pressure,  and I feel like I have to urinate alot,  but when I go it is not much.    Some people I talk to tell me I may have a prolapsed bladder because I had a hysterecomy 5 yrs ago.   But I got to thinking maybe it is the Tamoxifen,  and then read this post and now wondering if it has something to do with that.    I've been sick with worry,  because I do have one ovary left,  and my doctor told me I am now in the gray area beings I had breast cancer so he needs to check for that too.   My mind is torturing me right now,  I hope I can find out exactly what is causing this pain and pressure soon.   

  • peachy-pie
    peachy-pie Member Posts: 20
    edited March 2012
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    Just read online to call your doctor if you have pelvic pain and pressure while taking Tamixofen!    That has to be what it is!     It says it is a side effect.   :(

  • Nunina
    Nunina Member Posts: 3
    edited March 2012
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    Girls, I started Tamox 4 weeks ago (Feb 19) and I am definitely experiencing pelvic pain and pressure. I already had my first period, which lasted only 4 days and usually they are 7 or 8 days. I think I am ovulating but the pain is not in my ovaries but right above/behind the pelvic bone (I get the ovary pain 30 minutes after taking the Tamox). The pain is really bad when emptying my bladder with a deep ache and I feel like I have to go #2 (but I don't)... Horrible feeling! I imagine that it doesn't help that I have endometriosis AND a fibroid on my uterus, huh? My next doctor visit (Onc, GYN and Nephrologist) is in May, 3 months after starting Tamox, but the pain is so intense that I don't know if I should see my GYN before then or wait until my period and see if it goes away. I am tired of doctors and pills and pain... *sigh*

  • peachy-pie
    peachy-pie Member Posts: 20
    edited March 2012
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    Saw my OB/GYN this morning,  my ultrasound came back normal.  2 small cysts on the only ovary I have left,  but he said it is nothing to be concerned about.   My bladder and everything is fine,  no stones and no cancer cells found.    So now he wants me to go for a colonoscopy.    I am going to have a consult with that doctor on 4/18.      My Onc. said I could stop taking the Tamoxifen for 2 weeks and it would not hurt anything.   I did not take it for 3 days, and the pelvic pain and pressure is still there,   but it is not as intense as it was.    My joints and bones also feel a lot better.   I don't want to risk the chance of the cancer coming back so I will continue to take the Tamoxifen.   But boy does it do some intense things to the body!    I was also told my bladder is slightly prolapsed,  but nothing to where I would need surgery or anything else at this time.    So here I am still wondering what is causing the pelvic pain and pressure.   It's worse when I am sitting in a chair or driving.   I feel a lot better standing or lying in bed.   Feels like something is being squished when I sit straight or bend over.   I just want it to go away!    Also lost 4 lbs in the 3 days I haven't taken Tamoxifen,  so it has been keeping the weight on me too.

  • scrappylady
    scrappylady Member Posts: 4
    edited March 2012
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    Peachy-pie...I am like you, hysterectomy w/one ovary remaining. On tamoxifen since 3/1 and am amazed at all these side effects that come w/it!! I have the same pelvic pain/pressure issues, as well as insomnia, weepiness and hot flashes, which really are the least of my worries. I have appt. tomorrow w/med onc. so have my list o questions for her. Totally was not prepared for all these side effects. wonder if they'll ultrasound my remaining ovary. Love these boards, makes me feel like i'm not going insane.

  • peachy-pie
    peachy-pie Member Posts: 20
    edited April 2012
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    How did you make out scrappylady?   I am sorry I just read your post today,  I haven't been on here in a few weeks.   I also had hot flashes in the beginning,  but they seem to have subsided now.   But I still don't sleep as well as I used to and I also find myself being weepy a lot more then usual.   I think the worst for me is the bone and joint pain.   I feel like I am 100 yrs old and it's hard for me to get around at times.    I wanted to start walking again,  but the pelvic pain and pressure stopped me from doing that.    It seems to have subsided for now,  so maybe i'll try riding my bike and see what happens.    So difficult to lose weight while on Tamoxifen too.    I lost 5 lbs when I stopped taking it for 1 week.    But the weight came back on when I started taking it again.   :(      Very depressing.

  • cinvee
    cinvee Member Posts: 28
    edited February 2013
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    bump.

    I am having the same pelvic pain and pressure.  Waiting for an appointment with my Gyn.

  • Sandylu
    Sandylu Member Posts: 2
    edited March 2013
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    Hello all. Well, here is my story. I started experiencing discomfort on the right side of my pelvic area like a muscle spasm during orgasm 5 weeks into taking tamoxifen.  This lead me to get an US which showed a 6 cm cyst on left ovary which lead to an MRI which showed right ovary had physiologic (normal, functional) cysts. When I had surgery, it was found that there was a larger cyst on the right just like the left; so I had both ovaries removed; still have my uterus which shows 7 mm lining and some small cysts which is expected from tamoxifen. The doctors do not think my cysts were caused by the tamoxifen. I wish I had an US prior to starting the tamoxifen as that would have shown the differences. I am 51 years old, so they try to say these cysts are normal for menopausal women -- they were hemorrhagic cysts. So now my breast dr says to stay on tamox as he thinks it will help with  meno symptoms. I am like how would I know I have them if I stay on it?? So I am now seeing a medical oncol next week. I only did radiation, my score for chemo was an 11 which claimed it wasn't something that I needed. I am still experiencing the discomfort during orgasm -- its like once I have the spasm, it is more tender down there. I was exercising no problem last week, but this week 3 days after orgasm, my right side started to bother me while doing the elliptical. It has only been a month since surgery, but I am betting you the tamox is what is causing this discomfort and strained feeling thereafter during orgasm. I don't agree that I should stay on the tamox either now that I don't have ovaries! I am afraid of the AI as well since it affects our bones. I wonder now if it wasn't for the tamox if  my ovaries would have been fine -- I do know if it wasnt for that discomfort, I never would have found out about the cysts. I have been so distraught over this. But I think if the doc doesn't suggest going off it, I am going to suggest it and tell her about this thread. I am wondering too if there is a waiting period to clean out my system first before going on an AI. Thanks for reading. :)

  • Sandylu
    Sandylu Member Posts: 2
    edited April 2013
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    Hello all! Well, I been off the tamox and guess what??? No more muscle spasm during orgasm.  I also sustained from orgasm for 5 weeks, but I truly believe it was the tamoxifen that cause the spasm and the cysts. Well, I am trying to now look on the bright side of things and realize that w/o my ovaries, I decreased the risk of BC returning. I been off the tamox since March 16th. I decided to go off it on my own and then the medical oncol who I never seen last year when diagnosed said I should have gone off it once I had the ovaries removed, but if you recall my breast surgeon thought it would help with meno symptoms!! I never should have let him dictate my meds, though the med oncol said she would have put me on the tamox as well. I never thought I needed a med oncol because I didn't need chemo, but I was wondering why no one was ordering blood work, etc. and here it is the med oncol who would order it.  I have to go on the Arimidex now and been waiting to clear my body with the tamox. I should go on now, but think I will wait until May 1st.  I am really afraid of what it may do to me now. :(:(:(

  • BethCon1
    BethCon1 Member Posts: 77
    edited June 2013
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    Hello all. I've been on tamoxifen for less than a month and I have been getting pelvic pressure and lower back pain. It also feels like the start of a bladder infection, but it doesn't hurt when I pee. I go from feeling like I might have to pee to omg get me to a bathroom I have to pee! I get a terrible deep ache when I have to go. Thank goodness I found this thread. I have an appointment with my onc next wednesday, but I'm wondering if I should just call the gyno..

  • Reba2
    Reba2 Member Posts: 1
    edited November 2013
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    hi....just reading through and wondering if you stuck with the tamoxifen? I have been taking it since July and the increasing pain in my pelvis in becoming unbearable. I'm a runner too and the joint stiffness is so painful I can barely move! I'm contemplating continuing the use of this drug. Wondering what u found out? Hope you're in good health! Thanks

  • Cozzoli
    Cozzoli Member Posts: 7
    edited February 2014
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    Glad I found this thread. Ovary or pelvic pain woke me again. My gyno  and onc say there is no relationship b/w tamoxifen and this so called pain. Thanks for letting me see that this isn't a figment of imagination. Can go back to sleep now......zzzzzz

  • JansonA
    JansonA Member Posts: 1
    edited February 2014
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    finding this made me feel better!!! I get a tiny feeling on my left side before my periods lasting 7 days or so! After my period comes it's gone, although they are not regular now that I am tamoxifen! I am thinking it's just something that can wait until my gyno appt  in 2 weeks! 

  • summerangel
    summerangel Member Posts: 182
    edited June 2015
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    I'm bumping this thread because I started Tamoxifen about a week and a half ago and in the last few days developed pain/pressure in my pelvic area. I'm wondering if this type of SE goes away with time. I hate it! It feels a bit like menstrual cramps but I've never really had cramps before (except extreme cramps during a miscarriage once).

  • Stenokim
    Stenokim Member Posts: 76
    edited June 2015
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    summer, I have the same thing. Mine didn't start right away but I now have it quite frequently. I've been on tamoxifen for a year and a half.

  • summerangel
    summerangel Member Posts: 182
    edited June 2015
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    Wow, that's too bad! I was hoping it would get better with time. It doesn't seem to be a common SE, either. I'm not sure if I'd rather have hot flashes or this, though, as they seem equally annoying!

  • AmyfromMI
    AmyfromMI Member Posts: 115
    edited July 2015
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    Hi. I just found this thread. Wanted you to know that I've been on tamoxifen since May 2013 and my pelvic cramping and pain started almost immediately. I never "suffered" from cramps or pain during my normal periods. At first, the pelvic cramping and pain started about a week to ten days from the end of my period (during ovulation). They lasted 5-7 days. Recently, I started getting it during my periods. Now, it seems to be a constant thing. I have also had my period every two weeks for the past two months. I had a TV ultrasound in June which was normal. Pap and pelvic also normal. I'm scheduled for an endometrial biopsy the end of August. My choice for a late biopsy because of vacation plans and the kids' summer break. I'm 47 and praying for natural menopause to set in. My mom was 40. Why can't I be like her? I should be having fewer periods at my age! Not more. Sigh...

  • trish01254
    trish01254 Member Posts: 30
    edited July 2015
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    me too. Crampy feelings that kind of felt like gas pains/constipation. Pain was real bad last week. Went to ER ct scan and ultrasound. 9cm cyst in left ovary and 1.5 cm thickening of lining. Gyn/onc has recommended hysterectomy and ovaries removed. I m 51 and no periods since March. Been on tam since sept. Scheduled for 8/18 hoping for laparoscopic.

  • CidneyI
    CidneyI Member Posts: 32
    edited July 2015
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    This may be a stupid question but here goes anyway. If the ovaries are removed, does that mean in some cases you can stop taking Tamoxifen?

  • thunderstorm
    thunderstorm Member Posts: 1
    edited January 2016
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    hi there,

    hope you sorted out what it was.i too same problem and i have only taken 7 tamoxifen so i stopped it. what was your outcome? from very worried lady ciilla x

  • shelleym1
    shelleym1 Member Posts: 111
    edited January 2016
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    I have pelvic pressure/pain during ovulation now. My gyno checked me out and said everything was normal. I didn't have it this month, so not sure if that means I didn't ovulate or what. I sure didn't miss the pressure. I've been on it since June 2015.

  • jpr143
    jpr143 Member Posts: 19
    edited March 2016
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    So glad I found this forum. I started Tamoxifen in Oct. 2015. I began having pelvic pain in January 2016. An internal ultrasound found that I have two cysts on my left ovary and my endo lining is beginning to thicken. My OBGYN said the cysts were small and the thickening of the endo lining was normal for tamoxifen. He didn't seem to think Tamoxifen was causing my pain though and sent me to a urologist because sometimes I have bladder pressure, lower back pain and flank pain too which he thought could be kidney stones. A CT scan of my lower abdomen showed no cause for concern yet I still have this nagging pelvic pain. I was beginning to think it was all in my head until I read this forum. I believe the Tamoxifen is the cause of this pain but will continue to take it unless the pain gets worse. Right now it is no worse than menstrual cramps, which by the way I haven't had since April 2015, chemotherapy took away my periods. I'm guessing they are gone for good. I also have been having terrible constipation. I have been diagnosed with IBS with mainly constipation but it has become worse in the last couple of months.

    I do hope there is some relief down the road! Thank you all for posting.

  • Gardengirl72
    Gardengirl72 Member Posts: 3
    edited March 2016
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    Hi Ladies,

    I've been on Tamox as a preventive since Feb. just last night I experienced the pain and pressure. It felt like the cramps I would get when I had a cooper IUD. I had to take Advil to fall asleep. I'm also 14 days out from my period so I'm ovulating. I also feel like I'm peeing more. I thought it was my imagination. My hip and knees have been giving me problems too. I'm seeing the Gyno next Friday. My thought process is this worth it? I told my oncologist all of my concerns and she feels the benefits outweigh the risks. I'm scared I'm trading one possibility of cancer for another.

  • Pennylyon238
    Pennylyon238 Member Posts: 1
    edited March 2017
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    Good to hear that tamoxifen causes pelvic and abdominal pain. I called my ONC Dr. and she said to goto the Obgyn. I went there and they said my ovaries/uterus seemed to be fine in size but my bladder was not emptying when I went to bathroom. My urine sample did NOT show I had a UTI, but since the sono said that about my bladder, I suspected something was wrong. I have had UTI's earlier in my years so I started Bactrim (I had some stockpiled) to see if it was related to that. My bladder seems to feel better but I still have some pressure/pain. I think I will call my ONC. It must be the tam

  • moderators
    moderators Posts: 8,184
    edited March 2017
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    Hi Penny, and welcome to Breastcancer.org! You've come to the best place for information, advice, and support.

    According to the main Breastcancer.org site's page on Tamoxifen, pelvic pain and pressure is a side effect of this drug. Of course, you'll still want to bring it to the attention of your doctor to be sure it's not a more serious issue, but know that it is a common effect that, as you can see, many of our members deal with.

    Please continue to check in and let us know how you're doing! Thank you for joining and posting, we look forward to hearing more from you.

    --The Mods