Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: JuiceBoxedFox on September 30, 2019, 04:46:13 PM
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Hi! I was diagnosed with ovarian failure 3 years ago at age 32. We went through IVF (which required donor eggs due to my dead ovaries) and I was finally able to start HRT in April of this year. It's been a really rocky road with lots of side effects and I'm wondering if this is normal? I expected it to be pretty seamless but instead each regimen I've tried has its side effects. At this point I'm basically giving up and it's been devastating. Is it realistic to expect to feel normal and without any side effects?
So far I have tried vivelle (worked great but I didn't tolerate progesterone), progesterone 100mg pills (horrible mood swings), progesterone suppositories (gross grey discharge), combipatch (very frequent hot flashes all the time), and estrogen gel with the combipatch (still daily frequent hot flashes). My doctor's next suggestion is the birth control pill but that has killed my libido in the past, or Duavee. We're planning to try IVF again in January and honestly I just want to give up on HRT until after that. Since the vivelle worked fine my hope (?!) is to have a hysterectomy when we're done having kids so I don't have to worry about progesterone, but that seems awful too.
My doctor also does not think estrogen level monitoring is useful, which I can't understand. I'm in the US if it makes a difference.
I also wonder if it's normal to have a few months of hot flashes before symptoms get better on HRT? Is there a benefit to sticking it out? I hadn't really had any hot flashes ever before starting the combipatch.
I guess I'm just trying to learn where to set my expectations....
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Hi like you I started early so know how you feel. I've found it hard finding a hrt but when I do it dose help. Sometimes it can take a while until it helps I think 3 months is what they say.
I did get on well with Duavee but unfortunately very low so not sure this would be any good for you?
Also did you tinker with the gel amounts as can take a while until you get the dose right for you xx
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Hi like you I started early so know how you feel. I've found it hard finding a hrt but when I do it dose help. Sometimes it can take a while until it helps I think 3 months is what they say.
I did get on well with Duavee but unfortunately very low so not sure this would be any good for you?
Also did you tinker with the gel amounts as can take a while until you get the dose right for you xx
My doctor seems to think that 0.1mg daily estrogen is the max? I get 0.05 from my patch and 0.05 from the gel. I've wondered about increasing it too. I really wish she thought checking blood levels was helpful, I have a feeling mine are low.
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Welcome. We have the daisy web-site but I think that one has to pay for advice, might be worth while doing a search - it is for girls with early menopause.
Browse round. Make notes!
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Hi like you I started early so know how you feel. I've found it hard finding a hrt but when I do it dose help. Sometimes it can take a while until it helps I think 3 months is what they say.
I did get on well with Duavee but unfortunately very low so not sure this would be any good for you?
Also did you tinker with the gel amounts as can take a while until you get the dose right for you xx
My doctor seems to think that 0.1mg daily estrogen is the max? I get 0.05 from my patch and 0.05 from the gel. I've wondered about increasing it too. I really wish she thought checking blood levels was helpful, I have a feeling mine are low.
You have to think of your bones ect too, I'd go back and ask for the blood test see where your at. That seems a low dose I'm not expert but I was on 2mg of the gel, anything lower and my flushes and night sweats did not stop.
I'm here if you need to chat though as I know it can be very lonely starting so young, I never joined the daisy network myself as had to pay but I've had lots of help on here over the years so your in good hands xxx
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You have to think of your bones ect too, I'd go back and ask for the blood test see where your at. That seems a low dose I'm not expert but I was on 2mg of the gel, anything lower and my flushes and night sweats did not stop.
I'm here if you need to chat though as I know it can be very lonely starting so young, I never joined the daisy network myself as had to pay but I've had lots of help on here over the years so your in good hands xxx
Thank you, it's so nice to talk to others who are going through this as well. I did have a bone scan earlier this year which showed osteopenia. I emailed my doctor again today to ask about testing my levels and possibly increasing my dose but all the doctors either seem to not know anything about HRT or think there's a one dose fits all approach. It's crazy how much persistence it has taken just to get to this point!
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Blood tests for hormone levels are reliably un-reliable ::).
Many go on symptoms, however, World Wide medics don't seem to have menopause in their radar >:(. Some don't believe that a woman can be in menopause unless they have hot flushes/flashes and many don't believe that women can have 'early' symptoms >:(
Do read the vaginal atrophy threads, at least you can be in the know for those symptoms.
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Blood tests for hormone levels are reliably un-reliable ::).
Many go on symptoms, however, World Wide medics don't seem to have menopause in their radar >:(. Some don't believe that a woman can be in menopause unless they have hot flushes/flashes and many don't believe that women can have 'early' symptoms >:(
Do read the vaginal atrophy threads, at least you can be in the know for those symptoms.
It's crazy isn't it? I'm quite read up on the topic which is what made me seek care despite my doctors not finding it important, but I've had a hard time finding much clear evidence for specific hormone regimens or what to expect with therapy. I was hoping this might be a good resource. Is my experience with symptoms and side effects pretty common here?
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Yep. It's The Change, does what it says on the tin ::)
Maybe put your symptoms into the search box here, 1 by one and see what pops up? Make notes ;-).
I don't think women are prepared for it. We get told about periods ....... and most of us are aware that elderly ladies get hairs on their chins, saggy under-arms, have hot flushes .............
:welcomemm: nice to have you on board!
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I'd maybe change doctors if possible, even ask to be referred to a meno clinic. I went from endometriosis to having my daughter to meno. I had to ask the doctor after two years of periods fizzling out (before I was 26 days and really heavy with horrendous pains) and really bad hot flushes to just test meno to rule it out.
My FSH levels came back at 98! I was 27 and post meno!
I'm 45 now and one thing I have learnt is you must do your own research and push for things from the doctors. Don't give up. Or settle for something your not happy with. You know your own body.
Xxx
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I went through meno @ 38 started immediately on 2 pumps of oestrogel and 100mg of utrogestan used vaginally, been on this for for 15 yrs and will not stop in a hurry, both are bio identical hormones and well worth giving it a try.
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R U in the UK Cassie? well done on getting support so quickly.
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Juiceboxedfox Dr Hannah Short specialises in menopause and hormonal issues. She has written fantastic articles on FB.
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Hiya. Juice box. Great username :)
I have a slightly different view about blood tests. For me they were important in backing up what i was telling doc about symptoms. I dont think she took it seriously when I said I felt I was getting nothing from the gel even though I was on maximum dose. until she saw the low test results. She then realised that after 3 months I wasnt absorbing the gel.and so.no point in continuing and switched to patch.
So for me the test was useful. I have no ovaries so there is no ovarian fluctuations which are what make tests unreliable in women with a cycle.
X
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Same here TC. I was on Duavee for a year and felt my hot flushes coming back so I asked for my bloods to be tested and sure enough came back low. As I have osteopenia I want to make sure I'm getting the right dose x