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Tamoxifen & Pelvic Pain & Pressure

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24

Comments

  • yangguangcanlan
    yangguangcanlan Member Posts: 1
    edited May 2011
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    Hello Taniat and girls, 

    First of all, I want to say that this is the best discussion group I have found among all other websites regarding breast cancer.  I have got all the encouragement from you girls.  

    I took Tamox only for a week when I found out some rashes on my shoulder and random ones in other places, so after talking with my doc, I stopped the medicine until all the rashes were gone and was told to stop for another 2 weeks.  Now I am in the beginning of the 2nd week after the rashes were gone and start to feel the pelvic pressure and pain when I press down.  I was a little panic, "Now what?!" Thank goodness I found you girls here.  I am going to make an appointment with my doc and see if I can stop Tamox, since my body has not been doing well, even though I only took it for a week.  My stage is Stage 0 and non-invasive and did Radiation, so I really want to give up on this medication.

     For those who have to stay with the medication and the sympotom lasts, try to keep that area warm using an electrical blanket.  I am using it now and it really makes you feel more comfortable. 

     Taniat, I don't know why I even didn't think of consulting with Chinese medicine on this when myself is originally from China!  I will check it out!  Thank you so much.

    Hugs 

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited May 2011
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    Hi, i,ll post even though this thread has been inactive for a while just to say thank you to all. I can see that the cramping pain is common with Tamox. Unfortunately, beeing stage 3, i have to rput up with all the nasty nasty side effects :((((

  • linker12
    linker12 Member Posts: 5
    edited May 2011
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    I have that feeling almost all the time. I had it before tamoxifen(fibroids), like the 2 weeks before my period, but now have it almost all the time, and I haven't had my period since November. I haven't bothered to ask the dr b/c they said they didnt need to see me for 3 years, even on the tamoxifen.   I'd probably ask if it was a new symptom with a new med. And I probably should get a new obgyn!

  • [Deleted User]
    [Deleted User] Member Posts: 323
    edited May 2011
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    Linker, u absolutely need to be followed on a 6 month basis!!! get a new gyn and a new onco if yours is not seeing u either. Am no seeing ure diagnosis, but if ure on Tamox u need to be closely monitored, plus u need to have ure thyroid checked regularly. Endos hate Tamox for what it does to the thyroid. Keep us posted, yes?

  • Lindo2
    Lindo2 Member Posts: 1
    edited May 2011
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    Hi Everyone,

    I haven't read anything about this on the boards so here goes...I have been taking tamox since January (4 months).  For the last 3 months I have been getting severe abdominal cramping when I exert myself and get my heart rate up, eg. when I do cardiovascular exercise at the gym.  After 15 minutes I have to stop because the cramping is so bad.  I lie down for 20 min. and its gone, but it is really starting to wear on me.  I've been trying to "work back up to my usual 30 min" but I just can't seem to get there.  Now I don't want to do this exercise at all because it hurts so much.  Any with the same experience or ideas?  I never had this happen before tamox. 

  • Nad66
    Nad66 Member Posts: 1
    edited August 2011
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    Hi there, so glad I have found this discussion. I have been on Tamoxifen for nearly 3 years and have been suffering from the same symptoms as everybody else (pressure and discomfort at ovulation time) but usually they stop after 5-6 days but this time, it seems to go on longer and of course I am worried. Today I had a transvaginal ultrasound and now I am even more worried about the results. I am supposed to have a hysterecscopy in two weeks and in between an operation to kind of finish the reconstruction... so too many things on my plate and I feel very stressed. Any of you stopped taking Tamo after a few years (I was stage 0 non invasive and had radiation).

  • suebak
    suebak Member Posts: 31
    edited August 2011
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    I have been having pelvic pain and a swollen abdomen for a few months now.  My periods stopped for 3 months, whle I was having my rads.  I just assumed it was because of the rads it stopped.  Started tamox  last month, and have had my period twice since.  I actually have a pelvic ultrasound scheduled for Friday.  Had to cancel the last 2 because of the heavy bleeding.  Hopefully, I can get this over with on Friday. Of course, I am thinking, now I have ovarian cancer. 

  • ddeal
    ddeal Member Posts: 1
    edited September 2011
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    OMG!  I am so glad to have found this thread.  I have been on tamoxifen for a year.   I have had lower pelvic pain for a week.  I have an US scheduled for Monday.  But, of course I have convinced myself that I now have uterine cancer :(  I had DCIS, stage O and had a double mastectomy.  Is tamoxifen even necessary now that I do not have breasts? 

  • MTnester
    MTnester Member Posts: 147
    edited September 2011
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    I've been on tamoxifen for two weeks and have had pelvic bloat and mild discomfort since day five. I have a pre-cancer history of ovarian cysts. I thought maybe what I'm feeling was all in my head, but now I'm not so sure. Glad I have an appointment with my onc in a week.

  • hondagirl
    hondagirl Member Posts: 26
    edited September 2011
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    ddeal-did you have any type of microinvasion?  I am surprised they would prescribe tamoxifen with a mastectomy and clear margins.

  • dawnzdreams
    dawnzdreams Member Posts: 1
    edited October 2011
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    Hello Ladies! So glad you are here!

    Ok - I am 5 years since diagnosis and at nearly 4 years since last radiation. Here is my lower abdominal/tamoxifen story.

    About 2-3 months after starting Tamoxifen I started having lower abdominal pain...after 3-4 days I called my oncologist and the nurse told me to go to the ER. They gave me a shot of morphine and a CT scan. Morphone did NOT take the pain away, but gave me a horrible headache the next day and I have since refused to ever have it again! CT showed nothing.

    My pain can feel like broken glass scraping at the inside of my uterus...it used to go away every month after a few days. At about 6-7 months into treatment it started and got worse everyday until I could not take it anymore and I stopped taking the tamoxifen for 2-4 weeks and the restarted. Again in a few months the pain started and would get worse until I stopped for a few weeks. I went through this several times. My Oncologist said that tomaxifen has nothing to do with it, it does not cause pain...I knew it was the tamoxifen as it only happened on tamoxifen and stopped soon as I stopped taking it.

    The last time (a year ago) I decided to go see my GYN. She ran an ultrasound in her office and started shaking her head...of course I said "WHAAAAATTT???"!!!!!! Sure enough my uterus wall was 9mm thick and she said it should never be more than 6 mm thick. So I had a biopsy last November and it was negative, however it was her first in office biopsy and I worry about that, of course.

     She told me that a little bit of cramping is worth it to avoid breast cancer. It seems no matter how much you tell the doctors they do not understand how bad it hurts and you can only take it for so long until you have to stop taking it. Sometimes I want to say...ok, smash your hand with a sledge hammer...."Now, a little bit of throbbing should not keep you from writing notes or normal activities! =)~"

    So, I stopped taking my Tamoxifen. I am due for a annual biopsy to monitor the situation. I have no medical insurance and live 3.5 hours from my oncologist as I live very rural. I am also 90 minutes from the closest mall. But, I have my small farm I always wanted. =) I could not afford my medical expenses and it has been 14 months since my last oncology visit, and I am due this november for another biopsy - not sure if I will get it as I still owe $400. I have paid about $400 but not made a payment in 6 months as my fiance lost his job....first missing work over my cancer and then he got sick and lost his job. Go figure!

    But - this is why I am posting....11-12 months off of Tamoxifen and now just the last two weeks...I am having the SAME pain back!!! Yeah, I am spooked! I also know that means I better go get that annual biopsy!

    Any lady that stops into this thread and taking tamoxifen and has lower abdominal pain...I want you to know that you are NOT crazy! Not one of my doctors took my pain seriously and now, in reality, I am at larger risk for a reoccurance. My Aunt died from breast cancer 14 years after her first diagnosis. It is important we try to stay on top of it.

    My fiance's surgeon, when he found out I was on Tamoxifen about 3 years back...he asked if I had a hysterectomy. He said he will not even give his patients tamoxifen with out one, because he felt the risk is too high. Now, every doctor is different...and a hysterectomy was never recommended to me, but yet...they also had never heard of women having pain with tamoxifen. This is at UK hospital in Lexington, KY - supposed to be the best hospital and why I traveled 3.5 hours! (Should I scream now?).

    Anyone who has a doctor who tries to act like it is in your head....show him/her this thread! Also - go right away and get an ultrasound and biopsy if needed!

    (((Big hugs girls))) we deserve it! I will keep you posted! Good luck to all of you.

  • Beeb75
    Beeb75 Member Posts: 114
    edited October 2011
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    Also, consider the possibility of a UTI. I started having pelvic pain/pressure and also blamed it on tamoxifen. But I realized it was pretty low and "bladderish" so I tried a course of antibiotics and it cleared right up.

  • appl6160
    appl6160 Member Posts: 1
    edited October 2011
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    I am so glad to read the posts and find out I am not the only one experiencing certain symptoms which don't seem to be "common," or even heard of, according to my oncologist.  I sailed through surgery and radiation feeling good  only to feel pretty crummy since beginning Tamoxifen 10 weeks ago.  The emotional swings, nausea, fatigue and loss of appetite have  gotten better the past 10 days and I am thankful for that.  Like others above, though, I have now begun to have the lower abdominal cramping. I am only 6 days past my last period.  I have a family history of endometrial cancer, so do not want to wait until my gyn appointment in 3 months.  I will see how it goes this week and make a call to the doctor if it persists much longer. 

  • peggy_j
    peggy_j Member Posts: 89
    edited November 2011
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    Thanks everyone for this thread. I had similar symptoms of bloating these last two months (for 3-4 days, the week after my period. weird). Going to see the GYN next week. Thanks again for sharing your info.

  • B123
    B123 Member Posts: 239
    edited November 2011
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    I am on 10mg Tamox a day because I couldnt bare the 20mg, I am 2 weeks in and have bloating, pressure in the pelvic area along with diarrhea.  My stomach is gurgling and anything I eat goes right through me.  This happened 2 weeks in when I was on 20mg, so I stopped and felt so much better, my onc told me to do 10mg and see what happens, so I did but now its starting all over again, exactly 2 weeks in.. Not sure what to do???  Im afraid to go off of it but I cant leave the house or even the bathroom when Im on it, is this something that will pass or am I having a reaction?

  • peggy_j
    peggy_j Member Posts: 89
    edited November 2011
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    I didn't realize that tamox could create problems with the digestive tract. I wonder if there's any way to improve the situation, like probiotics or ???

  • PLJ
    PLJ Member Posts: 65
    edited February 2012
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  • pawprintgirl24
    pawprintgirl24 Member Posts: 6
    edited November 2011
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    hi all! i too have had this pain like cramping and today i had an ultrasound and tomorrow i go see my onc.what do you feel about a hesterectomy?? i don't want to do all these biopsy waiting for results all the time.i would like to live life and i can't do that with cramps all the time. boy we are already moody enough!!LOL

  • rgiuff
    rgiuff Member Posts: 339
    edited November 2011
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    When I first started tamoxifen 3 years ago,  I had pelvic pressure and gas pains, as well as my uterine lining thickening up to 10mm in the first year.  My Gyn wasn't concerned, so neither was I.  Eventually, this all settled down, and on my next ultrasound, 6 months later, the lining was 5-6mm and the pressure had gone away.  I guess my body got used to the tamoxifen.  I would never give up my uterus without a fight.   I do think I would feel a difference, especially during orgasm, if it were removed.   Pawprintgirl, maybe things will settle down for you too and you could then avoid this type of surgery.

  • peggy_j
    peggy_j Member Posts: 89
    edited November 2011
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    rgiuff, thanks for posting your experience. Good to know that the lining can decrease, too, over time. I never thought of it as our bodies getting used to tamox.
  • peggy_j
    peggy_j Member Posts: 89
    edited November 2011
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    As an FYI, I saw my GYN last week about the pressure/bloating I've been feeling the week after my period. She said that uterine (endometrial) cancer usually comes with irregular bleeding (which I don't have) but with my symptoms it was worth doing a US to check out the ovaries + uterus. She said that women w/ BC are at slightly higher risk to get ovarian cancer. (news to me). Anyway, US showed the ovaries are good but a thickening in the uterine lining. Since I'm on tamox, she's recommending a uterine biopsy to be safe. Just wanted to share this in case anyone has similar symptoms and is debating seeing the doc. During one of my talks w/ my MO I asked about these other risks and she said they set a very low bar when it comes to investigating symptoms. Anything usual gets investigated right away. Guess this is how it plays out. Oy!  I finished rads in May, had major sleeping problems in Aug/Sept and just when those calmed down these other symptoms flared up. Guess it's always something in the land of BC!  Thanks everyone for sharing your experiences. It's been helpful for me.

  • Carolinagrl
    Carolinagrl Member Posts: 1
    edited December 2011
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    I am so grateful to have found this thread, thank you to all who have posted.  It really validated what I experienced within 5 weeks of going on Tam.  I have had multiple fibroids for years and had prolonged sometimes heavy periods, but these were never enough to prompt me to seek relief for them.  However, within 5 weeks or so of going on Tam, I developed pelvic pain that I had never had before.  I had an endometrial biopsy (as I had some bleeding) and two different kinds of ultrasounds - Clinically, aside from my uterine lining being 10 mm,  they were all fine except they showed an ovarian cyst, a LOT of fibroids, and then they actually couldn't see my right ovary because the fibroids blocked the view.  I went off the Tam and by the next evening, ahhh, no more pelvic pain.  Long story short, I found an ob-gyn/oncologist who strongly recommends I have a full laparoscopic hysterectomy with bilateral ooph.  Today for the first time, I feel some of that same pelvic pain and I wonder if things are still settling down from the Tam, or if the fibroids are just really starting to become a pain.  I'm stressed about having this surgery, but I also consulted with my medical onco, and she also supports this.  I am definitely concerned about surgical menopause, but I do look forward to having no more fibroids, no more periods, no more pap smears, no more uterine and other ultrasounds, no more endometrial biopsies for every weird bleeding episode, reduced chance for uterine and ovarian cancer, less natural estrogen flowing through my body (will go on an AI after the surgery).  Still what a journey this is.  I had DCIS, and like another poster said on here, sailed through my lumpectomy and radiation.  I definitely didn't expect all this other stuff to follow.  Wishing you all the best in your treatment plans, and your doctors, and wish you a much happier and healthier year ahead.  :) 

  • Claire-uk
    Claire-uk Member Posts: 2
    edited January 2012
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    My pain/pressure started 6 weeks in. I was so panicked I paid for a pelvic ultrasound rather than wait 3-4 weeks for an NHS appointment. The results were reassuring and I'm not worried about ovarian cancer any more. Or not as much - anxiety seems to be my new hobby.



    My main problem with the pelvic discomfort is that it's worse after running. Has anyone else had this experience? I can put up with it as long as I know running isn't doing any damage to my poor old nether regions.

  • coraleliz
    coraleliz Member Posts: 158
    edited January 2012
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    Claire-I'm a runner & have been on Tamox just over 3 months. My pelvic pain is helped by running, even if it's the last thing I want to do.Core work also helps. My biggest problem is the pain  keeps me awake at night. But for now I'm being taken off Tamox for dizziness & vision issues.

    I've had pelvic pain issues in the past & getting docs to do ultrasounds on me has always been frustrating. Because I'm thin, they think poking at my ovaries & uterus is good enough. Unfortunately they've missed cysts this way, one as large as 11cm. I'm sooooooo dreading the Gynecological SEs of BC.

  • kennard4
    kennard4 Member Posts: 1
    edited January 2012
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    I started Tamoxifen about three weeks ago.  I am not having pain really but a lot of gas and bloating!    Anyone else experiencing this?  Should I be concerned?  Any products out there that might help?  Thanks for your help!

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012
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    Kennard, have you tried a probiotic?

  • Claire-uk
    Claire-uk Member Posts: 2
    edited January 2012
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    Thanks! I have neglected the crunches recently (cancer's a great excuse for ... everything!) Perhaps more work on my core and pelvic floor will help.



    Has anyone been told what actually causes the dragging pain and pressure? It feels like my organs have rearranged themselves. I won't get to see my oncologist for a couple of weeks and my GP was vague.

  • marcast
    marcast Member Posts: 1
    edited January 2012
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    I am so glad I have found this discussion board. It has been a great help to me. Thank you! I have been on Tamoxifen for 8 mos and my body is definitely not the same.  My periods have stopped, I have been experiencing pelvic pain & pressure which comes and goes.  I have constipation & bloating, dizziness and shortness of breath.  I live with alot of anxiety over all these symptoms and with the worry of possibly developing other types of cancers, such as uterine.  I have also developed a uterine fibroid and an ovarian cyst.  My gyno says that they are very small and that they are nothing to worry about but I am worried!   I am going to speak with my oncologist about possibly getting off the Tamox or lowering my dose to 10mg.  I just am not sure if in my case the risks do outweigh the benefits.  I had stage 0 non invasive DCIS with lumpectomy and radiation. Thank you to everyone for sharing your stories and your advice. 

  • cycle-path
    cycle-path Member Posts: 64
    edited January 2012
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    For those with constipation or other gastro issues on Tamox -- have you tried taking a daily probiotic? I added this a few months ago and it's been pretty much life-changing for me. I'm sure it's not a miracle cure for everyone, but probiotics aren't expensive and I think they're worth a try.

  • miricurt538
    miricurt538 Member Posts: 2
    edited January 2012
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    Cycle-Path, did you have these kind of symptoms, or just on here with your great help?  I started Tamo on Jan. 3 and for the last week have been experiencing pelvic pain and the very same symptoms that these ladies speak of.  Since I didn't remember ever hearing about this SE I wasn't sure what to think.  Guess if it keeps up I need to call ONC office.  Since I haven't had rads I'm not sure I wan't to go off Tamo.  I haven't had any gastric problems but will try theprobiotics  and at 71 it has been quite a while since I had a period!!!