Circle back to a year ago, I was preparing for my prophylactic Salpingo oophorectomy. I was consumed by the loss of not being able to conceive another biological child (earlier posts discuss this in more detail), knowing that my surgery was only months away (I turned 40 last Aug and recommendation for ovary/tube removal in BRCA+ women with my background is by 40).
I did my due diligence, researched online and asked my OB surgeon what types of HRT methods work best. He said, without question, patches. In my case, I need a dual patch that contains both estrogen and progesterone, since I was told that leaving my uterus was perfectly fine (research indicates most ovarian cancers related to BRCA, start in the Fallopian tubes and do not effect the uterus). I was not, however, informed that there is a more rare form of uterine cancer potentially connected to BRCA. Apparently this info. is newer (at least that’s what I was told by my Dr). He said, however, he is not concerned and that consensus is still Fallopian tubes and ovaries only.
I was also not informed about one of the crappy side effects I’ve been experiencing with my dual patch, called breakthrough bleeding. I read about it prior to my surgery, so I was aware, but not informed that this is a greater possibility with a dual patch vs. an estrogen only patch (for women who have their uterus removed – they are candidates for estrogen only).
The first 6 months of my estrogen/progesterone combo patch went smoothly. There were no hiccups aside from determining that I needed to switch out to a new one around the 3.5/4 day mark (technically they’re supposed to last 7 days, but realistically don’t). Then all of a sudden, in early January, I started to get menstrual type cramping, bloating and bleeding, as if my period had arrived. I was alarmed since there were zero issues for 6 months.
After speaking with my Dr he said I’m getting breakthrough bleeding and that it can be a problem with dual patches. He also said, quite nonchalantly, that I probably should’ve taken my uterus out! **SHOCK AND DESPAIR ENSUED**
He gave me a few options to try:
1.) Estrogen only patch with oral progesterone
2.) Oral estrogen and oral progesterone
3.) Estrogen IUD w/ oral progesterone
4.) Combo IUD – which is very new to the market
5.) Remove my uterus
After some Q&A, I decided to try option 1. I gave it a good 4 weeks and it did NOT work out. I was a hormonal mess. My emotions were all over the place. The oral progesterone gave me an awful yeast infection. The worst yeast infection I’ve ever had. Plus I think the last time I even had one was like back in college, so it took some time for me to realize what was going on!
Basically all of the hormonal changes that were occurring in my body due to the HRT switch, were wreaking havoc on my vaginal area, disturbing the balance needed to keep things “status quo” down there (as status quo as it can be after an oophorectomy). The oral progesterone was the culprit. Yeast infection is a possible side effect (probably more likely than not). And no, I was not informed of this! Grrrrrrrrr….!!!!!!!!!
I decided to go back on the dual patch after specifically asking my Dr if breakthrough bleeding is dangerous. It is not. But here’s the issue, my breakthrough bleeding has continued and is now happening almost every day. **ARGH!!!!!!!!** It’s clear I need to pursue another avenue, but I do not know which avenue to pursue yet and I certainly do not want to have another surgery to remove my uterus. I am already planning on having breast revision surgery this year, which will be the 6th surgery I have in 5 yrs.
Additionally, the dual patch is not perfect. I start to feel crappy (hormonal, sad, easily agitated), typically around day 4. So I’ve been changing my current patch to a new one on day 4, but I am not sure how that is effecting or not effecting my breakthrough bleeding (considering each patch is technically to be used for 7 days).
I have an appt with my Onco soon and will be speaking with her about these issues and concerns. I need to find an expert to discuss all of this. Not sure if that expert is a OB/GYN Onco or a Dr who simply specializes in surgical menopause at a young age/HRT, etc.
I am not considering going off HRT. That’s due to the long-term benefits of staying on it – reducing risk of osteoporosis, dementia, heart disease, and other ailments.
BRCA life is not an easy one and does not end after cancer, mastectomy, treatment, oophorectomy, etc. It is continued medical maintenance for balance and quality of life. I am feeling frustrated but hope to gain some helpful guidance soon.
I also hate being a “guinea pig” with all this. I’ve felt that way since I first learned I was BRCA at the age of 25 (back in 2005). The medical community did not know enough back then. It’s been trial and error since.
‘Til next time BRCA’nites and Breasties – Thanks for reading.