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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: Tamoxifen & Pelvic Pain & Pressure

Topic: Tamoxifen & Pelvic Pain & Pressure

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Mar 2, 2009 12:33PM

fifiduqwa wrote:

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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Mar 2, 2009 12:44PM prayrv wrote:

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

Dx 4/27/2007, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 2, 2009 03:10PM dmh2418 wrote:

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.

Dx 6/20/2008, DCIS, Stage 0, 0/0 nodes, ER+/PR+
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Mar 2, 2009 03:23PM wallycat wrote:

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.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Mar 2, 2009 05:30PM 33skidoo wrote:

I had a very large ovarian cyst grow to baby size in about 4 months.  Had to have it removed.

Dx 8/2007, IDC, 1cm, Stage IV, Grade 3, 1/1 nodes, mets, ER+/PR-, HER2-
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Mar 2, 2009 05:42PM awb wrote:

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

"I don't know what the future holds, but I know who holds the future"

Dx 9/5/2003, LCIS, Stage 0, 0/0 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Mar 2, 2009 05:54PM PT63 wrote:

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.

Dx: 11/2006, IDC, 1 cm, stage 1, grade 2, 0/6 nodes, ER+/PR+ Her2-, Bilat Mx, Tamox since 2/2007 - 2/2012

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Mar 3, 2009 08:39AM Kleenex wrote:

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.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Mar 3, 2009 08:52AM prayrv wrote:

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

Dx 4/27/2007, IDC, <1cm, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 4, 2009 09:59AM Kleenex wrote:

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.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Mar 5, 2009 05:25AM hopefor30 wrote:

I have noticed this feeling of fullness as well and it happens just about the same time -- in the middle of my cycle --I think it is about the time of ovulation.   Not only do I feel full, but sometimes I get very constipated at this time as well -- drink loads of prune juice, etc., but it still takes a week for the full feeling to go away.

I have had one pelvic ultrasound which showed endometrial thickening -- had a biopsy and gyn said it was fine -- not to worry, but of course I do.    Plan to talk to my onc more about it next month.

M.

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Mar 5, 2009 06:28PM redheadace1 wrote:

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.

Dx 6/08, DCIS stage 0, Grade 1, ER/PR+, 0/0 nodes, lumpectomy 7/24/08, finished rads 10/16, thinking about Tamoxifen

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Mar 8, 2009 05:07PM wallycat wrote:

Turns out I had a 1 day period and the pressure stuff disappeared.

Now I worry about the 1 day period Yell

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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Jun 6, 2009 09:21PM, edited Jun 7, 2009 02:52PM by valsgrandma

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. 

Dx 9/11/2008, ILC, 2cm, Stage IIa, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jun 9, 2009 05:14PM Seashell49 wrote:

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

<3 Cast all your anxiety on HIM because he cares for you! (1 Peter 5:7) :)

Dx 10/5/2012, DCIS, 1cm, Stage 0, 0/2 nodes, ER-/PR-Surgery 10/26/2012 Mastectomy (Both)
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Jun 9, 2009 09:22PM, edited Jun 9, 2009 09:24PM by valsgrandma

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. 

Dx 9/11/2008, ILC, 2cm, Stage IIa, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Dec 1, 2009 10:39PM AlohaGirl wrote:

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 ...

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
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Dec 2, 2009 08:57AM, edited Dec 2, 2009 09:00AM by rgiuff

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.

RoseG

Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-Surgery 05/20/2008 Lumpectomy (Left)Radiation Therapy 08/20/2008 ExternalHormonal Therapy 11/19/2008 Tamoxifen
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Dec 2, 2009 09:25AM AlohaGirl wrote:

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.

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
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Dec 2, 2009 10:49AM kk69Z wrote:

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.

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Dec 2, 2009 01:57PM Kleenex wrote:

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

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Dec 2, 2009 03:17PM AlohaGirl wrote:

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 ...  

Dx 2/18/2009, DCIS, Stage 0, Grade 3, 0/0 nodes
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Dec 2, 2009 03:38PM cd1234 wrote:

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.

Dx 1/15/2009, ILC, 1cm, Stage IIa, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Dec 2, 2009 06:33PM Kleenex wrote:

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

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Dec 12, 2009 01:11AM dbOak wrote:

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?

TCHx6 done (April-Aug 09), tamoxifen started Aug 09

Dx 2/3/2009, IDC, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Dec 12, 2009 07:59AM Kleenex wrote:

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...

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Feb 16, 2010 03:46PM taniat wrote:

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?

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Feb 16, 2010 03:46PM taniat wrote:

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 ......

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Feb 17, 2010 02:19PM hopefor30 wrote:

I posted over a year ago in the middle of this thread and  now I am back -- increased fullness and pressure feeling.   Had an ultrasound -- my uterus is enlarged and the lining is 25mm!   I had an MRI done and an endometrial biopsy -- I am freaking out!   Saw a new gyn who wasn't overly concerned, but I am worried that something is growing in there that shouldn't be....now I have to wait for results....hope I don't need a hysterectomy, but I am terrified that I will.

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Feb 17, 2010 02:19PM hopefor30 wrote:

I posted over a year ago in the middle of this thread and  now I am back -- increased fullness and pressure feeling.   Had an ultrasound -- my uterus is enlarged and the lining is 25mm!   I had an MRI done and an endometrial biopsy -- I am freaking out!   Saw a new gyn who wasn't overly concerned, but I am worried that something is growing in there that shouldn't be....now I have to wait for results....hope I don't need a hysterectomy, but I am terrified that I will.

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Feb 18, 2010 07:29AM rgiuff wrote:

  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.

RoseG

Dx 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-Surgery 05/20/2008 Lumpectomy (Left)Radiation Therapy 08/20/2008 ExternalHormonal Therapy 11/19/2008 Tamoxifen

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