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Premature ovarian failure and huge issues with HRT, please help :(

(6 Posts)
Belladonna82 Fri 16-Sep-16 13:26:57

I am 34 and lost my ovarian function 3 years ago due to cancer treatment. I was first put on a combi patch of 50 mcg estradiol/250 mcg norethiserone acetate. I had many symptoms of estrogen deficiency:
vaginal atrophy, recurrent urinary and kidney infections, hair loss, loss of breast and other female shapes eg my butt totally disappeared and eventually I got acne too which I've never had before.

This spring I asked my gyn for something stronger and I was put on bcp Yasmin which has 30 mcg ethinyl estradiol/3 mg drospirenone.
At first I felt better. My skin cleared up, my breasts and butt filled out and my hair looked healthier. But then came the weight gain! sad

In a couple of months I have gained 6 kilos! And I have bee dieting for the last 1.5 months but my weight keeps going up! I am totally freaking out about this and I feel horrible, bloated and depressed. I also have zero sex drive. But the weight gain is the worst, it terrifies me.

I have decided I need to get off these awful pills but what can I take instead?? I feel so lost. My doctor is not good at hormones so I need to figure out what I want and then suggest it. Since I'm so young I have to be on BCP or HRT for another 20 years. I really need to find something that works!

I looked at Angeliq but worried that 1 mg estradiol is too low?
Another alternative is Kliofem/Elleste duet with 2 mg estradiol.

Or should I try another BCP?

Everything seems to have weight gain listed as a side effect though.... :,(

PollyPerky Fri 16-Sep-16 14:54:03

Are you in the UK and are you seeing a consultant for your POI?
If not then your GP should refer you. The Chelsea and Westminster Hosp. London has one of the best clinics in the UK for this. You could also look at the website of the Daisy Network and ask questions on their forum.

The weight gain may be due to continuous progesterone. Evidently weight gain is not proven with any HRT so you also need to be careful you're not over eating and not recognising it smile

Has no one suggested a sequi regime for you- so you have oestrogen only for most of the month then progesterone for a few days to bring on a bleed? if you used oestrogen gel you could vary the dose every few weeks to see how you got on and a gynae may put you on long cycle HRT whereby you only have a bleed once every two or three months, which would cut down on the progestogen side of it.

Just a few ideas- I'm not a dr- but have learned a lot from my own meno consultant over the years, and reading a lot!

Belladonna82 Fri 16-Sep-16 16:15:09

Thank you for your reply. I had cervical cancer and for some reason my gyn/onc does not want me to have a bleed, I also have low iron levels and poor iron absorption due to radiation damage so I think it's wise in that respect to not bleed. But the continous route does seems to be the norm here in Sweden where I live. I sadly haven't been able to locate a meno/hormone expert yet. My oncologist is (understandably) more interested in treating cancer than what happens after and I feel she doesn't have time for my hormonal concerns. My GP on the other hand is great but as he says, he has no clue about how to treat this as it's not within his field of expertise.

I have eaten 1500 calories a day for the last 1.5 months and as I'm 5'9" my daily maintenance is about 2000. So I should be losing weight, but I keep gaining. sad Do you think that 1500 is too much? I used to eat well over 2000 when I was on the patches and didn't gain weight.

May I ask what regimen you are on and how much estrogen you take? smile
Does transdermal HRT generally have less side effects? As far as I can see the only transdermal option with both e+p available here is Estalis (same as Kliofem) which is what I was on before. Could wearing two patches instead of one be an option?

I have been reading about ovarian failure and hormones for hours every day lately but I don't feel much wiser.

Belladonna82 Fri 16-Sep-16 17:13:36

Regarding continous progesterone causing weight gain, maybe that's why I am gaining weight this time. I took Yasmin for years prior to my cancer and I didn't gain weight back then. But of course I only took it for 3 weeks at a time and then had a 1 week break.

PollyPerky Fri 16-Sep-16 17:29:04

I'm sorry to hear about your cancer. Did you have a hysterectomy or not? I'm wondering why you lost your ovaries but still have a cervix and uterus?
If you have had a hysterectomy, you only need oestrogen as your HRT.

Oestrogel- that's a gel form of oestrogen- is available in Europe and used a lot in France. Not in Sweden though?

What I use won't be relevant to you because I'm much much older and post menopause.

Your calorie intake sounds fine but it's unusual to be putting on almost a kilo every week with HRT.

I still think it might be worth you joining the Daisy Network because they have international members and they also have a medical chat session where you could ask the experts any questions.

Belladonna82 Fri 16-Sep-16 17:48:58

My ovaries were damaged from radiation and chemo. I still have them but they are "dead".

Thank you for the tip about Daisy Network, will check that out. smile

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