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Tamoxifen & Pelvic Pain & Pressure

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fifiduqwa
fifiduqwa Member Posts: 1

I started Tamoxifen about a month ago and now seem to be having some pelvic pain and pressure. It feels like when you are on your period, but I am not and shouldn't be for another 2 weeks. Has anyone had this feeling before. I hate to always be in a panic and run to the doctor.

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Comments

  • prayrv
    prayrv Member Posts: 362
    edited March 2009
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    Oh yeah  - I have that, every month.  I was scared that I was going to start for weeks before I finally did.  It seems for me that it comes on a cycle - approximately 2 weeks before my period.  It lasts for about 3-5 days.  I've come to accept it as a side effect, and as long as I have no other issues in that area, I'm ok with it.  If it bothers you, call your gyn and ask what they recommend.

    Gentle hugs,

    Trish

  • dmh2418
    dmh2418 Member Posts: 5
    edited March 2009
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    I would check with your doc, I had thickening of my uterus and an ovarian cyst.  I had the same symptoms you described and ended up stopping the tamox for awhile.

  • wallycat
    wallycat Member Posts: 1,277
    edited March 2009
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    I'll have been on tamoxifen 2 years in june....this month (actually just this week), I started getting that pressure.  Of course I had ILC and I worry that it is omentum or bladder cancer.  Can't accept it might just be a simple side effect.  I had an ultrasound in november of 08 and 8mm thick uterine lining, which is considered "normal" on tamoxifen.  I feel like I have to pee more often on and off....if it doesn't resolve in a week, I'll probably go get it checked out.

  • 33skidoo
    33skidoo Member Posts: 42
    edited March 2009
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    I had a very large ovarian cyst grow to baby size in about 4 months.  Had to have it removed.

  • awb
    awb Member Posts: 213
    edited March 2009
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    I developed large ovarian cysts while on tamoxifen ---ended up with rupture and TAH/BSO--good to have a yearly transvaginal ultrasound to monitor BOTH the uterine lining AND the ovaries. Perhaps my surgery coud've been avoided if I had had one earlier.

    Anne

  • PT63
    PT63 Member Posts: 31
    edited March 2009
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    Tamox. made me have fairly rapidly growing uterine fibroids and thickening of the uterine lining.  My gyn monitored both via. transvaginal ultrasound.  These things are fairly common on Tamox. and may be the cause of your pressure feeling.

  • Kleenex
    Kleenex Member Posts: 310
    edited March 2009
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    I have that pelvic pressure thing, too, as described by Trish - shows up about 10 days out from my period, lasts for 2 - 5 days, then goes away. Very annoying. Interestingly, I experienced it BEFORE I started the Tamoxifen - it started in the months after my diagnosis, when I went off of BCP's after years and years. The Tamoxifen makes it much more noticeable and annoying. My onc (when I asked about it prior to the Tamox) said it wasn't anything to worry about, but I'll bring it up again when I see her in a couple of weeks, because it's annoying.

    Mine is more of a pressure thing - perhaps I have a high threshold for pain, because it doesn't feel like pain to me. It's more like there's something in there for a week or so - I notice it when I sit down or sometimes when I'm walking. Pain is never a good sign - it would be good to ask your doctor.

  • prayrv
    prayrv Member Posts: 362
    edited March 2009
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    Kleenex,

    I would be very interested to see what your onc has to say ( I think we have the same one ).  My appt's are not until May so I'm waiting until then to speak to her and my gyn about it.  For me, it's tolerable so it's no problem.  The increasing period flow and pain is becoming an issue though.  I have my tvu and yearly in May as well.  We'll see what happens then.

    Gentle Hugs,

    Trish

  • Kleenex
    Kleenex Member Posts: 310
    edited March 2009
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    Trish - we DO have the same onc. For my first follow-up, they'd had me scheduled with the PA. I thought this was odd, as my initial appointment back in Sept. was just an "intro" appointment, as I wasn't going to have chemo and hadn't yet started rads or Tamox. So this would be sort of my first "rest of my life" follow-up. I had a list of questions that I faxed in to the office, whereupon they called me and told me I was now scheduled with the actual oncologist. As I should be. I see her late next week, I think.

  • redheadace1
    redheadace1 Member Posts: 2
    edited March 2009
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    I am definitely experiencing pain and pressure almost all the time now. Started Tamox in January. It gets really bad around my period. If my bladder is the least bit full, it hurts with a deep ache. It doesn't help that I have an 8 cm fibroid on my uterus. I feel like I'm about to give birth! Yuck! And no one really seems concerned about it. I also get severe constipation on the Tamox, and with all of that going on, there's just not much room in there. I'm seriously considering a hysterectomy. I'm too chicken to go off the Tamox. Arrgghh.

  • wallycat
    wallycat Member Posts: 1,277
    edited March 2009
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    Turns out I had a 1 day period and the pressure stuff disappeared.

    Now I worry about the 1 day period Yell

  • valsgrandma
    valsgrandma Member Posts: 3
    edited June 2009
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    I have had such a strange reaction to Tamoxifen - after only six days.  I am post-menopausal

    and started getting pelvic pressure/pain - similar to when I was expecting my period.  My Ob/Gyn

    and Onc said this wasn't possible. A chemo-friend of mine went on Tamoxifen at the same time and she experienced similar symptoms after less than a week.

    I had a sonogram just before going on Tam - I insisted on having another one this week, which

    would be three weeks later.  My uterine lining doubled, from 5.2 to 9 in just two and half weeks.

    I haven't taken the Tam for a week - they want to see what happens.  I still have the pain.

    Has anyone out there experienced anything like this?   Thanks. 

  • Seashell49
    Seashell49 Member Posts: 11
    edited June 2009
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    Hello,

    Yes!  The Tamox is probably causing you this discomfort.  I developed this pressure as you describe which got worse and worse.  I then began to have bladder problems.  I went to my GYN and had a Ultrasound which revelealed I had developed Uterine Fibroids and my uterus was the size of an 18 week pregnancy.  The location of the fibroids was crushing my bladder.  My GYN conferred with my Onc and I had a complete hysterectomy in Nov.  Keep an eye on things because my GYN said that Tamoxifen does cause other "female" problems.  Good Luck Smile

  • valsgrandma
    valsgrandma Member Posts: 3
    edited June 2009
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    Thank you, Sheashell49, for your reply.  The pressure is gone, but there is still some pain,

    and I will go on Tamoxifen again, at a lower dose of 10mg/day, in about two weeks.  If that pressure starts again there will have to be a discussion with my oncologist about how to proceed. I don't think the doctors know all the different, individual reactions to this drug. 

    Sorry to hear about all the problems you had with your uterus, etc.  Thanks again for the advice. 

  • AlohaGirl
    AlohaGirl Member Posts: 7
    edited December 2009
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    I'm glad to find this thread!  I started tamoxiven about 6 weeks ago and the last week or so I have had increasing pressure/fullness in my pelvic area.  If I press on it, it hurts (but otherwise doesn't hurt, just feels uncomfortable).  I have been wondering if it is from the tamoxifen, from the copper IUD I had inserted about 3 months ago, something else, or some combination.  Sounds like it is most likely the tamoxifen.  This evening I'd also been wondering whether this is something that can wait until next week when luckily I already have my annual gyno exam scheduled.  Unless it gets much worse, I think I'll just plan to talk to my gynecologist about it then.  She is terrific, and I figure that way if it is the IUD not the tamoxifen I'll be at the right place (the oncologist probably can't help with that).  Otherwise the only side effect I've had is (possibly) slightly low platelet counts.  (Not sure whether that is caused by the tamox though; they didn't count the platelets on the bloodwork I had done before I started.  I think I'll have more info on that when the results of my latest round of bloodwork come back later this week.)  Argh ...

  • rgiuff
    rgiuff Member Posts: 339
    edited December 2009
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    I've been on tamoxifen for a year now and I get that same pelvic pressure/tender feeling that you are all describing.  Sometimes, I also get signs that my period is coming, but then nothing happens.  I haven't had a period in 8 months now, so I know that this is tamoxifen related.  The pressure feeling seems worse when I have gas and then eases up after going to the bathroom.   I had a transvaginal ultrasound done 2 months ago and it showed borderline normal uterine lining thickness and multiple follicles on the ovaries.  I don't always have this pressure feeling and wasn't having it at the time of the ultrasound, so am curious to see with the next one if things change.  I'm scheduled for another in Apri, but if the feeling were to get really more intense, I'd probably ask to do it sooner.  If I see any signs of impending uterine or ovarian problems, I will quit the tamoxifen as I don't feel its benefit is worth the risk of major surgery and the loss of body parts.

  • AlohaGirl
    AlohaGirl Member Posts: 7
    edited December 2009
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    Thanks for the response, Rose.  I agree, if I have too many problems and surgery would be required to repair them I would go off the tamoxifen too.  Hopefully neither of us has to make that decision though!  I'll report back if I learn anything interesting at the gynecologist next week.

  • kk69Z
    kk69Z Member Posts: 38
    edited December 2009
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    I also had a pelvic "twinge". I had it about 2 weeks and went to GYN. He found nothing and sent me for US and vaginal thing where they stick that rod in you. Anyway after that I went for a Cat scan and found nothing. It kind of comes and goes.

  • Kleenex
    Kleenex Member Posts: 310
    edited December 2009
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    AlohaGirl - when I saw my gynecologist earlier this year (May, I think), we discussed birth control options. He wanted to make sure that I knew that Tamoxifen can unfortunately enhance fertility in some women. But he also specifically said that I could NOT use an IUD while taking Tamoxifen due to the potential effects of Tamoxifen on the uterus, so I'm surprised that you have one in while you're taking it. He also ruled out that new fallopian tube blocking procedure - Essure or something?  Anyway - let me know what your gynecologist says!

    And hmmmmm - I don't know if anyone's checking my platelets - could be part of the seemingly large collection of blood tubes they take at my 6 mo followups...

    Coleen

  • AlohaGirl
    AlohaGirl Member Posts: 7
    edited December 2009
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    Thanks, Coleen.  Interesting that your doctor says no IUD while on Tamoxifen.  Neither my med onc or gyno said anything but I will ask when I am there.  Could be something that got missed, though I did mention the tamox to the gyno and the IUD to the med onc.  Or maybe it is the kind of thing that is more likely to exacerbate side effects and the docs thought they wouldn't say anything unless I had any?  I could see that side effects could be exacerbated since I understand that the copper IUD apparently tends to increase menstrual flow and cramping so it must be doing something to the uterine lining. (I didn't get a hormonal IUD for obvious reasons.)  I know my gyno does the Essure procedure and one of my friends had it and has very positive things to say, so maybe I'll end up going that way ...

    They probably are checking your platelets.  I think it is part of the CBC.  They did one on me before I started tamox (except the platelets weren't counted because they all clumped together and they would have needed to use a special tube or something), one after I'd been on for about a month and then another one on Monday (1 1/2 weeks after the prior one) because of the platelet count.  I don't know whether low platelets are a common side effect -- I could just be one of the few lucky ones!  (Or maybe my platelets are always slightly below "normal" and I just never knew before.

    We will see ...  

  • cd1234
    cd1234 Member Posts: 40
    edited December 2009
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    I have been on Tamoxifen for three months and just started feeling kind of bloated and crampy in my uterus / ovaries. I feel like I am going to get my period, but I have not had one since February. I have been searching all over the Internet for information on Tamoxifen and the bloated crampy feeling, but can't find anything. Glad I found you all.

  • Kleenex
    Kleenex Member Posts: 310
    edited December 2009
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    AlohaGirl - both the IUD AND the Essure procedure were no-no's, according to my gynecologist, due to the Tamoxifen. Let me know if your gynecologist has comments regarding this stuff!

    Coleen

  • dbOak
    dbOak Member Posts: 6
    edited December 2009
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    I'm having this same feeling for the past week -- slightly tender when I bounce at all and feel like I have to pee more often, like when I was pregnant. Have been on tamoxifen for about 3.5 months. Periods are not back yet since chemo. Maybe I should call my gyn?

  • Kleenex
    Kleenex Member Posts: 310
    edited December 2009
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    Always good to ask about things that make you nervous - I think one lesson we unfortunately learn here in CancerLand is that we are the ones who know what our bodies might be up to more than anyone else. Some doctors seem to go all out and do uterine biopsies or at a minimum transvaginal ultrasounds to monitor the uterus/ovaries - mine has pretty much just said that what I experience is annoying but normal and not particularly dangerous. It's also not fixable, because what would calm the reproductive organs down would be a nice dose of hormones, which my body abuses...

  • taniat
    taniat Member Posts: 3
    edited February 2010
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    Hi,  I have just started tam and have been reading these comments which has really helped.  I am experiencing really bad pain, and don't feel the doctor's really know if this is going to benefit me specifically - only can throw a statistical number at me.  What I would like to know is:  has anyone - or do you know of anyone - who has stopped taking tam and not had a recocurrence of breast cancer?

  • taniat
    taniat Member Posts: 3
    edited February 2010
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    i also wanted to add:  i am trying alot harder to 'listen' to body these days.  i am concerned that the pain in the pelvis is my body trying to tell me something ......

  • rgiuff
    rgiuff Member Posts: 339
    edited February 2010
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      I'd been frequently having this pressure feeling in my pelvis on and off, along with annoying bladder symptoms, like stress incontinence if I don't get right to the bathroom as soon as I feel the urge.  Since my periods started up again in January and February, after almost 10 months of no periods, the pressure and bladder symptoms went away.  Right now I'm having it again though, and counting the days since the last period, I should be starting ovulation about now, so I'm thinking the feeling is related to stimulation of the ovarian follicles.  Am due for the next transvaginal sono in April.  I will try to observe over next month or two if the symptoms continue in this pattern and will try to schedule the sono during time when I'm having the symptoms.  Have also noticed along with all this, much to my dismay, almost complete loss of good orgasmic feelings, worse than ever. 

    I have much to discuss with my Gyn on the next visit in May, as I'm not ready yet, feel too young, to have to accept all this as the new norm.

  • lotstolivefor
    lotstolivefor Member Posts: 1
    edited February 2010
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    Wow!  I can't believe I found this thread.  I've been on Tamox. 2 months now and I've been experiencing substantial pain and pressure in my lower abdominal/pelvic area.  I've been complaining about it to my husband for a couple weeks now.  Wonder if I should make an appt. with my doctor. 

  • Sparrow
    Sparrow Member Posts: 80
    edited March 2010
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    I've been taking Tamoxifen for about 6 weeks and I've had pelvic pressure and pain since week #2. I saw my gynecologist last week about it.  I'm having a transvaginal ultrasound to hopefully rule out serious problems, although my doctor didn't seem too concerned.

    She put me on 800mg of ibuprofen for the pain but it's only helping a little bit.  I'm so tired of feeling this way.  I would love to throw my Tamox out the window and never take it again  but I know it's lowering my risk of recurrence. My QOL is seriously suffering. 

    Have any of you who have posted on this thread found any answers?  What was the problem and what did you do about it?

  • taniat
    taniat Member Posts: 3
    edited March 2010
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    Hi Sparrow

    I am not sure if I found the answers but I ended up stopping the tamox after only 12 days.  I really feel strongly that my body was screaming at me not to take it - my body couldnt cope. 

    My pain started at the end of week one, and it was too much for me to  bear.  Pain killers did nothing to stop the pain.  I understand how you feel about lowering the risk of recurrence, as I worry about that too.

     I have started taking chinese herbs called Chai Hu Shu Gan Wan that I get from my natropath.  They do a similar job to Tamox but no where near as potent, and hey, my body is going really well now.  I have also cut out red meat and only eat it occasionaly  as I am trying to stop the intake of estrogen through my mouth. 

    I dont know the answers, but one thing I have learnt is to listen to my body and for me personally, when I was in pain, my body was telling me something. 

     Good luck with everything.