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POF (Premature Ovarian Failure / Premature Menopause) - looking for info/people to talk to............

(41 Posts)
looneytune Fri 31-Aug-07 11:12:05

Hi

For those who haven't seen me on other threads, I'm 31 and on 2nd cycle of ttc dc2.

I had blood test done yesterday to see if I've started the menopause as I have a family history of this (mum was 29, her mum was in 30's and so was her sister). Ds is now 4.5 and with dh being 46, we really want to conceive asap (like everyone does once they decide! wink) so I'm looking ahead at options IF I'm not able to conceive myself.

I must say I've been very emotional about all this. We're all desperate for another baby in the family (incl. ds) and it's not helped by the fact I'm a childminder who has babies every day and the 2 I have at the moment started so young (7 weeks and 8 weeks, now 8 months and 6 months) and you really bond but at weekends it's back to just the 3 of us - ds is desperate for a little brother or sister.

I thought that if the result came back that I'm ok, then I'd be fine as thought it sort of could predict if you're likely to go through it in the near future. Well, Dr let me know yesterday that if I'm clear, I need to try and get pg ASAP as it could happen at any time and there is no warning from the blood tests.

At this stage, I can only think the route I'd want to take (if I had to) is IVF with donor eggs. Then I get all tearful about the thought that the baby wouldn't have my genetics etc. I know there must be lots of people who've had donor eggs and love their child to bits regardless and that's great, it's just so hard to think about it right now as this is all new and a bit of a shock.

I don't really know why I started this thread? Suppose I just want as much info as I can get, talk to people who know about this stuff, that sort of thing.

Anyone out there?

looneytune Fri 31-Aug-07 11:19:26

Oh, just read something about freezing eggs, anyone ever done this and mind sharing the cost?

pupuce Fri 31-Aug-07 11:25:44

Hi Looneytune

I had premature menopause , well actually I was diagnosed with Peramture Ovarian Failure (POF)... I was 36 and have no history of it in the family so complete shock.

I had a very high FSH result and was told that I would need donor egg or be VERY lucky one night! (The gynae said it's like russian roulette for you!)

Anyway I chose not to go for egg donation or HRT for that matter... I went to see a friend of mine who does Maya Womb Massages... I had heard lots about it... she did NOT promise to get me pregnant... but I went anyway as I was hoping to get my body back on track if possible... I had 3 massages... and another 3 massages a year later... I am sitting now next to my 9 months old smile

I have met the woman (recently) who developed this technique and she tells me that in the US a lot of her practitioners work in fertility clinics are there is clear evidence that the massages significantly increase the rate of success!

So I am great believer and I will see my friend again once I stop BF... as my cycle isn't back... maybe it will never come back (it had disappeared completely at 36).

So there is HOPE... but act sooner rather than later.... and personally I would suggest that if you go down a more invasive route you also look at this massage because it will increase your success rate.

looneytune Fri 31-Aug-07 11:56:08

This is great, I'm so glad I started this thread. I'm into alternative therapies for things anyway so will look into any options!!

I had seen POF get mentioned on here before but didn't realise that it was another name for premature menopause until I went on a website (http://www.daisynetwork.org.uk/index.html).

I'm so pleased you managed to conceive, I really am

Can you please tell me what FSH stands for? And any other things I may have seen mentioned and need to know about?

Because I've been on the pill for so many years (from age 16-31 with a break when had ds), I'm not sure what my cycles are like. I've had one since ocming off, it was late and only lasted 2 days and very light. BUT, I believe this can happen when you come off the pill so not reading anything into that now.

So, from what you know, even if you have frozen eggs or donor eggs, it's still very hard to get pg?

looneytune Fri 31-Aug-07 11:57:50

p.s. don't suppose you happen to be in the South East do you?

looneytune Fri 31-Aug-07 12:30:41

Any idea how I find someone in my area? So far having no luck on the internet

pupuce Fri 31-Aug-07 17:01:59

I am in West Kent and my massage therapist is in Dorking adn London. The lady I sued but there are others is
www.hilarylewin.com

FSH is follicle-stimulating hormone as far as I understand if it is high it means you are having a hard time with your eggs !
I believe from memory so please check and the inyternt is a good place to look! that 10 to 15 is a good number I had 89 and over that too.

I think with donor eggs (or frozen eggs) you have a much higher chance but personally I didn't want all the hassle of getting loads of hormones injected into me.... also getting donor eggs is hard!

looneytune Fri 31-Aug-07 17:48:58

Thanks for the info, will check out that website.

So, I presume that I should be able to ask for lots of details from my results rather than just be told whether or not it's showing I have a problem?

pupuce Fri 31-Aug-07 18:08:02

Well I would ask for the results... and then you can do some research on the web!

looneytune Fri 31-Aug-07 18:13:50

So I presume if I just say I want all the details of test results, they'll give be loads of gobble-de-gook and I can research, rather than having to know what to ask iyswim?

pupuce Fri 31-Aug-07 18:33:48

Well ask if he can give you the hormone level results... and that should be enough to get you going... if they are "bad" he SHOULD refer you to a gynaecologist.

looneytune Fri 31-Aug-07 18:38:06

That's great. Dr is great and she said she's the fertility queen so she knows her stuff on this! Just that I was told to phone reception for results first - I'll ask them what you said and take it from there.

Thanks so much for all your advice

pupuce Fri 31-Aug-07 18:48:37

I'm crossing my fingers for you... but don't despair if they are bad... it might not be the end.... it is just a longer road smile

BTW - Women with POF have a 10% of concieving I think that's un-aided... I am one of those (well I did get massaged).

I liked that website
http://www.pofsupport.org/information/doctors_faq/drfaqsantoro3.htm

Popi70 Sat 01-Sep-07 09:18:51

Hi,
I was also diagnosed with POF at age 36 and without a family or personal history but some months after I managed to get pregnant. I think that to be pronounced as POF you must have two high FSH and LH readings at 2 weeks or more apart from each other and lack of menses for at least six months. Are you suffering from other symptoms such as hot flashes,dryiness - no cervical fluid or loss of libido? There is also an intermediate state called DOR (diminished ovarian failure) and the chances of naturally conceiving then are 25% rather than 10%. As for IV with DE, a POF friend at her late thirties just had a successful one at a clinic in Barcelona. She's now pregnant as well and very happy about her choice as the service was tailored for international clients, the staff were suburb and it was very affordable considering the situation here.

dizzy36 Sat 01-Sep-07 12:36:17

hi, hope its ok for me to jump into conversation.

I have had elevated fsh since as early as april 2005 when I was 37 (maybe earlier as that was 1st time tested) it was showing as 14 and has stayed elevated. I had private fertility treatment (iui and chlomid) which didn't work and the consultant told me last year that I had an almost zero chance of conceiving because of my consistently high fsh levels. I think he was being very negative. I am almost certain I ovulate every month....opks show LH surge, ewcm, and have post ov symptoms due to prog increase. which apparently only occur if you ovulate.

I have not given up hope and is lovely to hear positive stories. I already have a 7 yr old DS who would be a brilliant big brother.

I beleive that our path/destiny is set out for us and all we can do is try an help things along by making the right choices. If I am meant to have another child then I will have one and I will do my best to help make it happen.

Can I ask if anyone in perimenopause/early menopause who still had periods noticed any significant changes in their cycle and/or in themselves i.e irregular periods, heavy or light, changes in mood?

looneytune Sat 01-Sep-07 12:56:03

pupuce - thanks for that info. I definitely like the idea of trying the massage if needed

Popi70 - thanks, it's great to hear another sucess story Did you do anything special or was it natural? I don't understand all the abbreviations and don't know what the tests are (Dr told me straight away as she's an expert but she said all the tests so quick, I didn't catch them). I'm a bit confused as the Dr told me if I've started the menopause then that's it, the chances of getting pregnant shoot down (probably where the 10% comes from) but I was hoping that levels could sometimes change gradually and could be monitored? I'll come back to this thread once I have the results as it may help me understand them more. As for symptoms, tbh, I'm not being checked because of any symptoms as I don't know what they are, I'm being tested because of my family history. I've had hot flushes then get cold for the past couple of years but I put that down to being a childminder and always busy with the kids? I used to be sex mad and must say that changed a few years ago and I have times when I really want it but the rest of the time I could take it or leave it. Dryness.....hmm......dh has commented within the last year that I've changed down there but I'm not sure if this is anything to do with POF?

dizzy36 - of course it is, the more the merrier as far as I'm concerned - want as much info/hope as possible. I'm a bit confused about the fact you tried things to help you ovulate? I thought that POF meant eggs were no good or had almost run out? hmm See how much I know eh!!! blush. I'm really confused about whether or not I ovulate because the other day I felt twinges in my side like stitch and then a day or 2 later I got a little EWCM (this was yesterday) but then again, I got that when I was on the pill and I thought the pill stopped you ovulating??? [confused] As for periods, I can't really comment as been on the pill since I was 16 (with about a year break for ds). This is my 2nd cycle after coming off the pill and the period I had was after a 32 day cycle and was very light and only lasted about 2 days. BUT.....I believe this can happen after coming off the pill so can't take that as a sign of my periods changing. Do you mind me asking how long you have been ttc for?

blueberry79 Sun 02-Sep-07 07:55:10

Hello there. I too have v high FSH. There is a lot of bleak info out there in the medical world but I have found lots of hope elsewhere. I am trying acupunture and TCM - it needs to be someone who is well-reknowned and a fertility specialist and knows exactly what they are doing as herbs can be unhelpful if inappropriately used. I am seeing a lady in London - look up www.zhaiclinic.co.uk. She gets incredible results by changing the conditions and balance inside your body and redirecting blood flow to the ovaries and uterus to improve egg quality and reduce fsh. (ignorantly described by my doc as mumbo jumbo!). She has helped countless women conceive naturally where IVF etc has failed for them - one of my friends saw her after 2 years of ttc and was pregnant in the third month of treatment - in that time her temperatures normalised and her EWCM icreased dramatically. A lady in the States called Randine Lewis who does a simiilar thing has written a book called The Infertility Cure which I absolutely recommend and has a website called The Infertile Soul (google it). I also recommend a book by Julia Indichova called Inconceivable - look on Amazon - it's very inspirational. I believe there is plenty you can do to increase your chances....smile

looneytune Sun 02-Sep-07 08:31:28

Blueberry - thanks so much. I must say that I've been very up and down with it looking really bleak (as you said) and then seeing these different methods which I'm very interested in hearing about

A lot for me is the not knowing. I COULD be fine and have made a big fuss about nothing BUT because the Dr said even if this result is ok, I could soon have a totally different result, I wanted to research in advance!!

I'm hoping to have my results on Tuesday/Wednesday so will come back and share them so I can get to understand them (as my experience of Dr's is that they never really go into details but I like to know everything!)

Popi70 Mon 03-Sep-07 19:08:29

Looneytune,

I got pregnant on my own - well with a lot of help from dh, 'daily and persistent help' I must say wink. If it's of any help, I think that the following link explains nicely what POF is: www.nichd.nih.gov/publications/pubs/pof/upload/premature_ovarian_failure.pdf

When I was dx, I was then offered more blood tests to see whether it was due to antibodies working against my ovaries. Autoimmune disorders are linked with POF. The good thing about finding that there is a cause like this is that at least with the right medication one may hope that things may improve. Unfortunately mine was sort of unexplained so there was nothing I could do other than try and hope. We had also started looking into domestic adoption. I guess that when you are first dx you think it is the end of the world - if you want children, that is - but gradually you come to terms and realise that there are more than one ways to make a family.

popi

dizzy36 Mon 03-Sep-07 20:42:46

Sorry if I sounded confusing looney tunes. When in perimenopause/early menopause/POF it means we're running out of eggs and there is nothing we can do about that. We can however do something to improve the quality of those eggs, or so I have read in numerous books, Julia indichova being one of them. By changing diet and lifestyle (quite dramatically by the sound of things) it is possible to improve the quality of the remaining eggs.

My second pregnancy ended at 5 months in Jan 2004 due my baby having Downs Syndrome.That and my high FSH tells me my egg quality is not good. I could still have plenty of eggs but they're all just crap! I'm doing lots of research to find out how can improve their quality.

pupuce Tue 04-Sep-07 09:44:21

Dizzy, I lost my periods for a long time but after the massages they came back but were quite light and every 21 days... then they "went again for several months and I ahd another 3 massages and this time they were much heavoer (normal) and were every 21 days.

looneytune Tue 04-Sep-07 14:54:19

Thanks everyone, no time to reply to each individual as got 2 mindees sleeping upstairs and need to help ds clear some mess before getting them up. Just wanted to say I phoned the Dr's and have been told my results are ok. I don't know what they are as the receptionist didn't understand them enough to know what to tell me and I didn't know what to ask for. I'll see if the nurse can tell me when I go for the other blood test results on 14th.

Anyway, very relieved and trying not to think about the fact the Dr still told me I don't have time on my side. At the end of the day, I've heard enough positive story and heard about alternative therapies so I'm just going to continue having lots of sex and fingers crossed I won't need any help wink

Thanks so much for you all taking the time to help me, I will try and get on later and reply to each of you seperately

looneytune Tue 04-Sep-07 14:59:48

Blood tests, not results (on 14th)

Popi70 Tue 04-Sep-07 17:31:01

looneytune,
this is excellent news. i am expecting a little girl at the moment and I would hate to think that she would have no choice but to have POF as well.
popi

FeeMac Wed 05-Sep-07 14:01:56

Dear Pupuce
I've been following this thread from afar and just joined Mumsnet! Please can you clarify if you meant the lady whose email address you put down is who you sued? I thought you were recommending her and have just booked for a Maya Womb massage, but having just re-read over what you wrote I'm wondering if I should cancel.
I was told I have 'occult premature ovulation failure' last Friday due to high FSH readings - my last was 16.1 but they do fluctuate back down to as low as 2. My turn for IVF on the NHS has just come up but I'm not allowed treatment unless FSH goes down below 10... I'm guessing I shouldn't have waited for the NHS for the last two and half years!
I had a m/c at 12 weeks in 2004 then nothing since.
Now doing some serious detoxing & eating organic, no sweeties, no caffeine & no booze! I'm determined to prove them wrong and that I can still conceive.
I've just ordered that Unconceivable book too.

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