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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 03:33PM

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.

Dx 11/17/2008, IDC, <1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2-
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Jan 20, 2012 05:02PM marcast wrote:

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. 

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Jan 20, 2012 05:38PM cycle-path wrote:

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.

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Jan 27, 2012 06:13PM , edited Jan 27, 2012 06:18PM by miricurt538

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!!!

Dx 11/21/2011, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+
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Jan 28, 2012 12:43AM cycle-path wrote:

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.)

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Feb 3, 2012 11:47PM miricurt538 wrote:

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. 

Dx 11/21/2011, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+
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Feb 26, 2012 09:22PM LtotheK wrote:

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.

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Feb 26, 2012 11:40PM coraleliz wrote:

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.

Dx 2/28/2011, IDC, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2-
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Feb 27, 2012 10:43AM LtotheK wrote:

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!!!!

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Mar 17, 2012 10:19AM peachy-pie wrote:

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.   

Dx 6/10/2011, IDC, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 07/05/2011 Lumpectomy in one or both breasts: Lumpectomy in my right breast Radiation Therapy 07/18/2011 Chemotherapy 09/15/2011 Cytoxan (chemical name: cyclophosphamide), Taxotere (chemical name: docetaxel) Hormonal Therapy 12/05/2011
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Mar 17, 2012 02:52PM peachy-pie wrote:

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.   :(

Dx 6/10/2011, IDC, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 07/05/2011 Lumpectomy in one or both breasts: Lumpectomy in my right breast Radiation Therapy 07/18/2011 Chemotherapy 09/15/2011 Cytoxan (chemical name: cyclophosphamide), Taxotere (chemical name: docetaxel) Hormonal Therapy 12/05/2011
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Mar 20, 2012 05:36PM , edited Mar 20, 2012 05:41PM by Nunina

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*

Kidney Cancer Survivor (9/2008). ADH diagnosis 7/2011. Excisional breast biopsy 9/2011. Started Tamoxifen: 2/19/2012
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Mar 20, 2012 07:29PM peachy-pie wrote:

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.

Dx 6/10/2011, IDC, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 07/05/2011 Lumpectomy in one or both breasts: Lumpectomy in my right breast Radiation Therapy 07/18/2011 Chemotherapy 09/15/2011 Cytoxan (chemical name: cyclophosphamide), Taxotere (chemical name: docetaxel) Hormonal Therapy 12/05/2011
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Mar 20, 2012 10:09PM scrappylady wrote:

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.

Dx 12/28/2011, DCIS, Stage 0, ER+/PR+, HER2-
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Apr 12, 2012 09:04AM peachy-pie wrote:

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.

Dx 6/10/2011, IDC, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 07/05/2011 Lumpectomy in one or both breasts: Lumpectomy in my right breast Radiation Therapy 07/18/2011 Chemotherapy 09/15/2011 Cytoxan (chemical name: cyclophosphamide), Taxotere (chemical name: docetaxel) Hormonal Therapy 12/05/2011
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Feb 6, 2013 07:04AM cinvee wrote:

bump.

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

ALH/ADH bilateral, FEA left. In the last year: 4 core biopsies, 1 stereotactic biopsy, 2 lumpectomies, hysterectomy and right side oophorectomy. Tried tamoxifen, not a fit for me. PBMX scheduled for 1/14/15
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Mar 16, 2013 05:18PM Sandylu wrote:

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. :)

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Apr 21, 2013 08:34PM Sandylu wrote:

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. :( :( :(. 

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Jun 17, 2013 02:01PM BethCon1 wrote:

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..

Dx 7/10/2012, IDC, 6cm+, Stage IIIA, Grade 3, 2/2 nodes, ER+/PR+, HER2+ Chemotherapy 09/11/2012 AC + T (Taxol): Adriamycin and Cytoxan, plus Taxol Targeted Therapy 11/01/2012 Herceptin (chemical name: trastuzumab) Radiation Therapy 02/28/2013 Hormonal Therapy 05/28/2013 Dx 8/2013, IDC, Stage IV, mets, ER+ Radiation Therapy 09/09/2013 Surgery 10/17/2013 Prophylactic (also called preventive) removal of the ovaries Chemotherapy 11/01/2013 Taxotere (chemical name: docetaxel) Targeted Therapy 11/01/2013 Perjeta (chemical name: pertuzumab; also known as Omnitarg) Surgery Mastectomy of one or both breasts: Mastectomy of my right breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my right side
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Nov 7, 2013 10:31PM Reba2 wrote:

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

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Feb 11, 2014 04:52AM , edited Feb 11, 2014 04:52AM by Cozzoli

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

Veronica Surgery 05/13/2013 Lumpectomy in one or both breasts: Lumpectomy in my right breast Dx 5/14/2013, ILC, Right, 1cm, Stage IIB, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 05/23/2013 Lumpectomy in one or both breasts: Lumpectomy in my right breast Radiation Therapy 06/21/2013 Hormonal Therapy 08/23/2013
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Feb 11, 2014 04:06PM JansonA wrote:

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! 

Dx 1/25/2013, IDC, 1cm, Stage II, Grade 3, 1/4 nodes, ER+/PR+, HER2-
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Jun 23, 2015 10:15AM SummerAngel wrote:

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).

Age 46. Oncotype, left-side tumor: 9. Right side had multi-focal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 4/3/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 06/01/2015 Reconstruction of my left breast: Tissue expander placement; Reconstruction of my right breast: Tissue expander placement Surgery 06/01/2015 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) Hormonal Therapy 06/12/2015 Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM))
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Jun 23, 2015 10:29AM Stenokim wrote:

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.

Dx 12/12/2013, IDC, Right, 2cm, Stage IIA, Grade 1, 1/12 nodes, ER+/PR+, HER2- Hormonal Therapy 01/30/2014 Surgery 12/18/2014 Mastectomy of one or both breasts: Mastectomy of my right breast; Lymph node removal (also called dissection): Underarm (axillary) lymph node removal (also called dissection) , Lymph node removal (also called dissection) on my right side
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Jun 24, 2015 10:20AM SummerAngel wrote:

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!

Age 46. Oncotype, left-side tumor: 9. Right side had multi-focal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 4/3/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 06/01/2015 Reconstruction of my left breast: Tissue expander placement; Reconstruction of my right breast: Tissue expander placement Surgery 06/01/2015 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast; Lymph node removal (also called dissection): Sentinel lymph node removal (also called dissection) Hormonal Therapy 06/12/2015 Tamoxifen in pill form (brand names: Nolvadex, Apo-Tamox, Tamofen, Tamone, class: selective estrogen receptor modulator (SERM))

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