Secondary Amenorrhea - need advice/insight

jazzlewazzle

Hi All, I am 32, and I have only had about one real period in about 7 years. I had anorexia for 4 years and my periods have only returned once since recovery. I am well recovered now - perfect BMI for the last 2 years but still not menstruation.
So I have had some tests and my doc thinks I could have premature ovarian failure as my estrogen levels are the same at that of a post menopausal woman.
I have done a little reading on the subject but most info is from the US.
Has anyone else experienced POF?

I am distraught - I would like to have kids but I am not also at very high risk of Osteoporosis (I am ready have osteopenia) and heart disease.

I guess I will have to go on HRT to reduce the risks of the above - but I would like the option to become pregnant in the future. But I have read conflicting info - some says its not possible to reverse POF - other says it is.

Can anyone share with me info either from their own experience or recommend somewhere where I could get info?

Also, if I need more specialist help on this, should I go to a gynacologist or endocrinologist?

PS Mods I do not know if I am in the right forum or not. I came here as it deals with infertility and so on.

Thanks in advance.

Moonbeam

*mod note*
I have moved this to the trying to conceive forum as I feel this is where the most experienced posters to help you are.
As always no medical advice please.

Thanks

jazzlewazzle

Moonbeam wrote: »

*mod note*
I have moved this to the trying to conceive forum as I feel this is where the most experienced posters to help you are.
As always no medical advice please.

Thanks

thanks a million...

LegacyUser

Hi there,

Just wanna reply as this thread is quiet. I'm very sorry to hear your diagnosis.

I'm not a POF expert - far from - though I've fought a battle with very reduced ovarian reserve, and after numorous ivfs I'm now in my late 30s and pregnant. Of course that is different from POF. I imagine that you're not a candidate for IVF. So is it reversible? There's a lot of info in alternative medicine that says it is. I've seen an acupuncturist who swears that she's helped an 38 year who was diagnosed as post-menopausal to get pregnant. Although the acupuncturist probably believes this, I'm sceptical. Fertility is a very mysterious thing, even the specialists admit. The hormones can fluctuate. It says in my Zita West Fertility book that conception can and does still occur even when ovarian reserve is almost unreadable - but we're probably talking one woman in 1000. The good news is that you're only 32, so if you have any eggs left they may still be quality... there are books written about how the right diet can turn things around. Again I'm skeptical.

But here's where I would start the research: The Lister Clinic in London are world experts in this area. They may not deal with a certified POF case but it might be worth an enquiry. Also. although I'm skeptical about alt therapy, there is a Chinese medicine practitioner in London, a woman, who has apparently worked miracles on women who've reached the end of the IVF road/PoF cases. That's not just anecdotal. The Guardian wrote an article on her a few years back. Sorry I don't have details, but get googling.

Also I know of one woman with very reduced ovarian reserve who is pregnant years after her diagnosis - she puts this down to maintaining a healthy BMI (not underweight) and extreme clean living.

Then there are donor eggs. You have lots of time to come to a decision on that.
There are two other infertility sites with a lot more ttc activity that I can't mention here I imagine, where you'll meet lots of women with POF & those who have chosen donor and never looked back.

Sorry I can't be of more help. Well done for beating anorexia. Don't let this defeat you.

Tarini

Hi there Jazzlewazzle hope you get this message. I am 31 and have POF. I was told nothing you did can cause it, its an autoimmune disorder which means that possibly, maybe your body is attacking the follicles as they produce. Also I heard that people who have POF can be carriers of Fragile X or Turners Syndrome. So have you been tested for this? It is very important that you attend an endocrinologist. I am going to one but only see them every 3 months and think its all a bit slow moving for me. I will get the results of my chromosome test in January.

Are you trying to conceive? I am looking into IVF but I don't know if this will work for me as my FSH levels were almost 90 and my estradiol levels were 30. I hear if your levels are over FSH 15 it's nearly impossible. I rang the Rotunda HARI clinic and everybody was really nice but they said that they have not had a successful pregnancy yet with this condition. The Cork Fertility Centre also sounded a bit pessimistic when they heard my levels. Even so, they are sending me for an AMH test to see if I have any quality eggs and my fiance is being sent for a sperm test to check that he is not infertile.

My endocrinologist said that the FSH levels fluctuate every month and I have a chance of producing maybe one egg a year. The chances of fertilising this egg is maybe 5 percent. It's a very sad condition to be diagnosed with so young. Some doctors have suggested egg donation for me but I absolutely refused blank. Why would I go through labour for a child that will not be related to me? I may aswell adopt because there are enough children in the world who need homes and are not already related to me so might aswell adopt than receive an egg donation.

Have you thought about going abroad for treatment where it is cheaper? I am thinking of travelling to Asia where techniques are cheap and advanced. Would be nice to hear back from you. Chin up xxx