Anyone diagnosed POF / early menopause?

[DeeDee1977]

I've recently been diagnosed with POF / early menopause at the age of 36 and am desperately trying to connect with other women in the same boat.

How are you coping? What are you doing to help? I've just started a blog here
toferyilityandbeyond if you want to read about me and get in touch.

My stats are pretty dreadful: FSH 38.6 and AMH 0.6 but I am determined to remain hopeful!

Please get in touch if you are going through similar and need to talk!

Just wanted to offer a story of hope at 37 I had amh 0.1 fsh 11.9 . I tried naturally for 3 years 2 mc on route lots of drs saying to use donor eggs. I used dhea etc which I am sure you've heard about alot of threads on here talking about the same issue refer to. Have you definitely got pof I had a dor diagnosis. There is a subtle difference. Have you stopped having periods. I was still having them which made diagnosis v shocking at the time.
Anyway I just celebrated miracle ds 1st birthday. It was a horrible horrible 3 years.
Also fin the network54 high fsh forum (can't work out how to link just now) a bit American but lots of support.

Andcake thanks so much for your reply. I'm actually not sure, now you ask, whether they said DOR or POF, it has all been so emotive and I've read soooo much online now, it's all sort of in a bit of a confused mess in my head! They've certainly said I've got extremely low reserve.

I hadn't had a period for 18 months after stopping bf-ing my DD1. I just thought it was that I needed a bit of a kickstart after bf-ing for 13 months and toddled off for my scan expecting them to tell me everything looked fine and maybe some clomid to get things going.

Since I've been doing acupuncture and taking supplements, I've had a period and am now ovulating, according to my ovulation sticks!

The drs keep talking to me about donor eggs as my only option too :(

This DHEA stuff, can you get it in UK?

Your story gives me so much hope, thanks for replying x

Its probably hard to tell if you have been bf. but its a gutting diagnosis. I bought dhea online here www.biovea.com/uk/category_dispatch.aspx?CID=6#.UhI8BpK1HdZ was told to by my dr at the recurrent mc clinic to buy online.

Glad you've got your af back. Actually although I am older and had a previous dx of dor my periods have been terribly wonky since stopping bf in February and I am praying that it isn't the menopause. Ive been trying to find something to kick start them back to relative normality. I had acupuncture before and hated it. I think it actually contributed to a chemical pregnancy and made me very stressed.

Also your FSH score is pointless unless its done on day 3 so once your periods are returned get it done again.

Also the good news is you have had one successful pregnancy.

Also this book is meant to be insightful
www.amazon.co.uk/Inconceivable-Womans-Triumph-Despair-Statistics/dp/0767908201 she had high fsh and used diet etc to correct.

Hello I'm going through a similar thing so thought Id message and say hi and to offer support. Fsh result in July of 12 suggesting low ovarian reserve. Progesterone is low and currently waiting on my amh result which I'm expecting to be low as well. Next fc on 9th Sep to discuss what our options are.

I'm currently doing weekly acupuncture, yoga, trying to eat healthy and taking a multitude of vitamins that I'm starting to rattle!

Some very lovely people on here have come on to give their success stories which gives me some hope.

It's such a horrible diagnosis isn't it. Have you spoken to anyone in real life? I've told a couple of friends and although they are sympathetic it is difficult for them to understand.

What are the next steps for you or are just going to continue to ttc naturally?

Andcake really useful posts, thank you. I thought dhea was actually a drug so hadn't looked into it, but it looks like its just another supplement?

That's interesting about the acupuncture. It doesn't bother me, in fact I'm just happy to have a 20 min lie down while they're in! I don't feel particularly different afterwards either, but it's obviously having a dramatic effect on me, as I've had 1 period and have just - according to my ov sticks and temp - ovulated! Amazing after just 6 or so weekly sessions. My guy is also amazing to talk to, I feel like I really unload and get things sorted in my head after seeing him. I'd recommend it to anyone, but interesting to hear that it doesn't suit everyone.

Yep, I'm determined to get my fsh done again on day 3 - but of course here's hoping all this bd-ing we've been doing might actually get me pregnant??? Got to stay hopeful eh?

Fingers crossed for everyone x

yorkiebilb hey good to hear from you, I only got my diagnosis 1st July so around the same time as you.

How you holding up? I'm ok at the moment, feeling quite positive because I appear to be ov-ing which in itself is amazing considering. But I have very low days, too.

They never mentioned my progesterone actually, what's the significance of that?

I keep having "donor eggs, donor eggs, donor eggs' thrown at me, but I want to give it a good go naturally first. They said as my figures are so bad it's unlikely I'd even be successful with clomid or IVF.

Yep I'm doing acu, millions of vits and supplements, meditation, and am seeing a nutritionist for advice so am eating pretty healthily (biscuits are healthy, right??!). I am trying to destress as well but I'm naturally stressy so that bit's hard! I'm also bbt charting and doing daily ov tests to keep track of what's happening.

I haven't spoken to many people, mainly because I know they'd find it difficult to understand, but also because I feel really embarrassed and ashamed. My husband says that's crazy, I wouldn't feel like that if I'd been diagnosed with cancer or something, and I shouldn't with this. I know he's right, but it feels so yuck. Premature menopause at 36! I still can't believe it.

Good luck to you x

Yorkie - interesting you should mention progesterone. Before ds ( my sticky bfp) I am sure taking b6 50 mg helped. I knew for years I was ov but had a short luteul phase probably due to poor egg quality as a result of my poor amh etc.

My mantra in the three yrs of trying was all I needed was one good egg. It was just finding it

Hey tofertility good to hear you're feeling okay ish esp. Now you're ovulating. That's really good!

I have good and bad days and quite an anxious person as well (DH would say very anxious!) so the waiting for test results and appointments feels like torture to be honest! I can't seem to think about much else at the moment!

What supplements are you taking out of interest?

andcake I haven't tried b6 as my luteal phase is 12 days which seemed okay so I thought ovulation was fine but my level was 27 and they like it to be over 30 so something isn't quite right. Maybe I could try next cycle...

the b6 won't hurt - its the best £3 i ever spent getting the 50 mg b6 from H&B i think it got me my son ;-)

stress - I was always a very anxious person more so with TTC - i think it doesn't help - yoga really helped me and if you look at the DR malpani's site he thinks it helps
blog.drmalpani.com/2011/04/i-have-low-amh-level-what-should-do-i.html

Yorkie I know what you mean, it's all I think about too. I know that's probably not healthy but I think it's completely normal and understandable given our circumstances.

I hadn't really thought about progesterone till you mentioned it and now I'm kicking myself that I haven't got b6 in my regimen!! I'm going to get some asap!

I'm taking wheatgrass (completely, completely disgusting), baby asprin, magnesium, royal jelly (which I think makes me nauseous), agnus castus and an all round multi vit.

Andcake I have done yoga in the past and quite enjoy it but am so bad, I'm very inflexible and I can't focus my mind on being quiet for 10 seconds! Maybe I'll give it another go.

I'm 3dpo and having all sorts of weird cramping going on so my mind's in overdrive.

xx

Hello,
I've just been diagnosed with it too. I actually wasn't ttc (just thinking about embarking on that route) but went to my GP with some symptoms, which she has diagnosed as premature menopause. I am keen on a referral for a second opinion on the diagnosis, but she won't agree to it, citing the "NHS funding crisis". Has anyone else had that experience?

She's separately investigating if I'm eligible for fertility treatment on the NHS.

I'm absolutely gutted.

hackneylady Hello. First of all did yr gp take bloods? I don't think prem menopause can just be diagnosed on a few symptoms? The symptoms are actually quite vague and can indicate other things. What age are you, if you don't mind me asking?

I had all my bloods done and a scan of womb and ovaries before I got my diagnosis. And then I paid to get a 2nd opinion privately - which was unfortunately the same :(

If you haven't had yr bloods or a scan done I'd say you have more investigating to do! If yr gp won't agree the ask to see another in the surgery!!

It's a horrible place to be, I know, but don't give up hope, I am determined not to!

x

Thanks. She did an FSH test, which was on the high side of normal. I queried this, saying, if my FSH is normal, how can you say it's premature menopause? Her answer to that was that premature menopause can start without it yet showing up in the FSH levels and that she was making a judgement based on my symptoms.

She also did LOADS of other blood tests to rule out other causes of the symptoms (they were all clear).

I'm 38. My symptoms started when I was 37.

I want exactly what you had - further tests and scans - in order to get a more confirmed diagnosis and that's what she refused today. :-(

Thanks for your kind words.

Oh, that's so frustrating! My experience of the NHS with this diagnosis is that they are SO inconsiderate of people's emotions. They just land the diagnosis on us and expect us to just toddle off going 'oh, alright then!' :(

I got referred for the scan and bloods because I hadn't got my periods back after bf-ing my DD for 13 months. I waited till she was 2 before going to the drs because we wanted to TTC again. I hadn't had a period in 18 months or so by that point. So I guess I presented as 'fertility issues' initially, I certainly wasn't having any menopausal symptoms that I was aware of!

If your FSH is on the upper end of normal, I'd say it's not time to panic yet - mine was 38.6!!! Are you having periods? Did they do the bloods on day 3 of your cycle? FSH fluctuates through your cycle.

I don't know what your other symptoms are, so don't want to say much more than please don't give up hope.

We went private for a scan and AMH test, it cost us £300 but at least then we had all the information properly presented.

I want to finish by saying despite them writing me off and telling me I had no eggs left, I had a period last month and am now temp charting and doing ovulation sticks and I just ovulated 4 days ago!!! We're hoping, hoping, hoping that we caught it. Time will tell! x

PS tofertilityandbeyond Have you heard of an organisation called the Daisy Network? They're a charity that supports people with premature menopause. Their boards aren't very active, but joining them (£20) gives you access to a network of volunteers who will offer a listening ear and informal advice.

www.daisynetwork.org.uk/what-we-do.htm

Oh sorry, tofertilityandbeyond I cross-posted!

Yes, I found the way the news was given to be cavalier in the extreme. She delivered the news, offered me HRT and looked at the door. No mention of fertility (!) - I had to ask.

In our area, you go to a walk-in bloods clinic on the day of your choosing, so I worked out to go on day 3 - she didn't mention it, I'd found out through my own research.

I'm still having periods, but they've becoming irregular, and I'm having night sweats and joint pain.

I'm going to pay to go privately. I'm so cross on behalf of all the people who aren't in a position to.

Do you mind my asking, if you're in London, where you went?

And to be honest, it's not just the fertility issues that are bothering me. I'm upset at the thought of a whole system packing up 14 years before it's meant to. I just find it all a bit upsetting and weird.

It is so depressing. I have all these feelings of shame, guilt, loss (of my vitality, my womanhood, my femininity), I've been so down on myself. I can only imagine those are typical reactions to being given this diagnosis, so the way we're dealt with is so poor.

I was told my next step was hrt as well. I'd walked in the door wanting to TTC and was walking out of the door being told hrt was my next step! Talk about devastating!

I am in London and I went to Create Health on Harley Street, as they offer a 'fertility mot' service which is exactly what I wanted; bloods and scan and someone talking me through the results properly. They're ok but they seemed to leap very quickly onto talking about donor eggs which just felt insensitive - but I guess they are a business after all.

Anyway, as I say I am going to remain hopeful for now. I've been getting acupuncture and hey presto, a period and now I've ovulated! I'm sure you're doing as much googling as I am, and you'll have no doubt come across success stories too. I wish you all the best, keep in touch! x

Ps thanks for that link! I hadn't heard of them!

Yep, I recognise all those feelings!

Very best of luck with it. I'll keep my fingers crossed for you.