Endometriosis

Jac987

Morning folks

Has anyone had any experience of endometriosis-like pain (without bleeding but with discharge) after starting tamoxifen? I had a lumpectomy in June, started tamoxifen 2 months ago and finished radiotherapy 2 weeks ago. I had been on the progesterone only pill for 17 years for endometriosis prior to diagnosis and the mini pill before that. I'd never found anything else that sorted out the pain.

I've spoken to the macmillan nurse and my gp, had a urine test, swab, (all normal) pelvic test, have a blood test for endometrial cancer booked in and am on the list for an ultrasound scan (6 weeks wait). I've also asked to be referred to a gynaecologist asap (if the endometriosis is back i want the lot whipped out pronto!), but she hasn't until the results of the other tests are in. The focus is the possibility of cancer rather than the pain, despite an assurance from the macmillan nurse that my gp would fast track me to the gynaecology department.

I was planning to go back to work tomorrow and spoke to my boss last week about a phased return and duties and so on. Now I feel that i'd be setting myself up for failure to go back to my stressful job with continuous pain. But there doesn't seem to be anything on the horizon to address the pain. The nurse advised me to come off the tamoxifen a week ago but the pain is still here and I can't see my oncologist earlier than the scheduled appointment in 2 weeks.

Has anyone been in a similar situation and can they offer any advice?

Thanks

Jac

flashlight

My daughter has endometriosis and I understand how frustrating this is. My GYN and Oncologist told me Tamoxifen will thicken your lining and sometimes this will cause cramping discomfort/pain. It acts like an estrogen in the uterus. They would not be concerned unless you started spotting/bleeding. Because of this side effect I wouldn't think you should take Tamoxifen. I would ask if the Tamoxifen feeds your endometriosis. I've read on this site it takes a while for the Tamoxifen to leave your system. Are you thinking of having a D&C done? That way they could remove the thickened lining and do a biopsy. I feel bad that you have to wait so long for an ultrasound. Maybe once you see the GYN they will get you in sooner and have a plan. Good luck to you.

Jac987

thanks flashlight. I will check that out with the macmillan nurse and the oncologist. I did mention the endometriosis to both the breast cancer surgeon on diagnosis and the oncologist when he gave me the tamoxifen but they certainly didn't tell me this 😐

MemberNow

Hi Jac,

I have been on tamoxifen for 3 years now and have recently started having really bad cramps during my periods. I got the ultrasound done, it only confirms the thickness of the uterus lining but as per the doctors, endometriosis cannot be diagnosed with u/s.

So, I met the gynaecologist and will be undergoing laparoscopy soon to confirm the diagnosis. Tamoxifen does have a rare side effect of endometrial cancer (reason for my freak out), but as the other user mentioned above, I have also read that tamoxifen is usually not prescribed for someone with a history of endometriosis.

If I end up getting diagnosed with Endometriosis, I will be sure to ask my MO to see what other options I have if I come off Tamoxifen. It’s scary either way!

I hope you get your diagnosis sorted out before you start work! Stay strong!

P.S: I am in Australia, so the wait times to see specialists are different from that in US

Jac987

I am amazed that I have been given tamoxifen when I have a clear history of endometriosis and I gather that history increases the likelihood of bread cancer!!

I'm in the UK so nhs funding makes waiting time longer but if I can get a clear answer from one of the medical people I can pay to go privately. Pity the poor folk who can't afford that 😕

flashlight

I read a post that said Do the doctors and/or NP really read your history and do they hear you. It doesn't seem to matter where you live this seems to be a growing problem. Wishing you the best....

Autumngal24

I have severe endometriosis, and my Onc is suggesting ovarian suppression along with AI, as Tamoxifen would wreak havoc on my uterus. He said he would never suggest due to the uterine thickening associated. I would see if you can try this option instead. I'm in "chemopause" right now, and honestly my endo pain is nonexistent, so I would think the ovarian suppression would have the same effect.

Jac987

hi autumngal24

I've seen my oncologist and he's asked my gp to put me on a course of Zoladex (in order to stop the pain and enable me to go back on the tamoxifen), and the ultrasound is Monday week and I have a gynaecologist appointment the day after which at least gives me a timeline. I just don't understand why such a focus on drugs though, especially given the side effects with Zoladex. My uterus has given me nothing but pain and at 53 I'm not going to miss it so it seems glaringly obvious to just take the lot out and by magic I will have no oestrogen being produced, the pain will go away and no danger of any of the cancers of the bits down there. Remembering being prescribed danazol in my 20s and the side effects of that I'm hoping the gynaecologist will agree ☺