* Author Topic: Diagnosed with POF and pregnant  (Read 11833 times)

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Offline maia74

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Diagnosed with POF and pregnant
« on: 8/02/10, 17:24 »
Hello

I wanted to share my story with anyone who would like to listen... I first signed up to this site when I was diagnosed with POF in late October. I was so upset and knowing that I was not alone made me feel just a bit better. Especially reading all of the mirracle stories...

I am 35 years old and my partner and I decided that it was time for us to start trying for a baby. I came off the pill in September and my body went into a complete overdrive. I suffered terrible hot flushes, night sweats and sleeplessness. Since I was traveling home (abroad) I decided to see a doctor. My doctor told me that I was not going to get my period that month and prescribed duphaston to help me get it back. She also took some blood tests. When the tests came back she said that my hormones were all over the place (fsh 40) and that was entering peri-menopause. I had no idea at the time what fsh meant but knew that it was not good news. I needed to travel back to the UK and decided to go for a private appointment with a doctor in London. I went to see a private GP (I was confused and desperate so did not want to wait) whom I asked for the recommendation. The GP did fsh test again (about a week later), promissed to call me to explain what it meant, charged 250 and that was last I heard from him. He did however referred me to his friend (by a text message) who I saw a few days later.

Then my nightmare started...  I went to see the doctor at his expensive office in Harley Street. He looked at me blood work and said that it's a high indication that I had POF. DID NOT mention that it was done right after I came off the pill, mid - cycle and not on day 3! Anyway, more bad news followed. After my scan he said that my ovaries were very small and that there was nothing there... I almost fell backwards and really still did not quite understand the implications. I was there alone but the doc continued to tell me that it was very unlikely I was going to get pregnant naturally and that the egg donation was my only chance to have a family. He even offered to get me an egg from my own country - believe it or not! I was completely and utterly devastated and can't remember how I drove home that night. The doc ordered more tests that were hugely expensive - some genetic and chromosomal tests of the value of 500 and the AMH test. That one dreadful visit had cost me about 1000 and the genetics were apparently done to find the cause of my POF.

I was put on HRT to get rid off the side effects and asked to come back in 6 weeks. During that time I did a lot of research, did accupuncture, cut out the alcohol and ordered DHEA from the US. My fake period returned and my hot flushes stopped as well. However  few weeks later came another blow... I received a letter from the doctor that although the genetics showed nothing my AMH result was 0.7 and therefore suggesting 'no meaningful ovarian reserve'. First of all I was dumbfounded that the guy I have just cried my eyes in front of and paid 1000 for the pleasure did not even bother to pick up the phone!!! It was a cold, impersonal letter stating that he would need to adjust my hormone levels (HRT) again in view of the results. I was so upset by the news but even more about the way it was brought to me. Call me naive but I thought that private doctors have more time to apply the human touch - but I was wrong... I was also wrong in thinking that that the private GP or the gyno would look out for me and at least MENTION the Lister Clinic that specializes in cases such as mine. But no, I was bounced around between pals - or at least it felt like it...

I decided not to back to my next appointment with him. I researched a bit more and found out that there are women out there who manage to get pregnant through IVF with equally bad AMH... I refused to believe that it was all over for me and what followed was a huge surprise... I stopped taking the HRT even though I still had another full month to go. I was very worried that my previous symptoms would return but decided to brave it. To my surprise none of them did! I don't think I had one hot flush, just a bit of wake-fullness but that was about it. I had no more tears to cry and decided to accept that what will be will be... Thought a bit about ED and thought that this could be an option for me to bring a child into this world. A month after I stopped the HRT I got my first natural period and it was right on time. I was so surprised because I was told that it was going to be unlikely that my periods would return. Two weeks later, I had really strong signs of ovulation and did a test which showed a surge (this was not going to happen either!) I tried to stay grounded and by then knew that there could be signs of ovulation but no egg released... Over all, I was happy because it meant that I could get a chance to see somebody at Lister. I was told that NHS would not take me on.

Another couple of weeks passed and I felt that I was coming on with my period. I had cramps, I was tearful and I was extremely tired. I complained to my mom all the time that I felt like I was ready to give birth to a cow. Unfortunately, there was no sign of my period. I thought that maybe I was a bit unrealistic to hope for a timely arrival of the AF and accepted that it was not likely to happen. NEVER in my mind a thought passed that I may be pregnant. I was told it would not happen... BUT, as another day passed I found a HPT at home and took it. I swear I did not even look at it intently. I peed and left the bathroom only to return to find PREGNANT :o. I kept waiting for the NOT to appear to the left of PREGNANT but instead got 2-3 weeks... I was completely shell shocked and kept staring at it all the time, even shaking it a bit  ^idiot^. But the result would just stare back at me.

I am now 5 weeks pregnant and I am not sure what will happen. I very much hope that I will stick it through but I am also realistic that it's very early days yet... The most important thing for me is that I did manage to get pregnant naturally despite what the doctor had said. He had not even given me nor my body a chance to see what would happen. I had to pick up a fight to have this chance.

The reason I wanted to share this story (in such detail) is to make everyone who cared to read on to realize that doctors really do not know it all - even though they seem like they do! If I had listened to the guy I would have probably be arranging for DE and not even trying anything else. He seemed so sure that this was the only option. It also seems that one has to be cautious with the doctors in the private sector and go for the recommended ones. It's a huge business and as my NHS GP said, may at times be a money driven.

I do hope that this too long of a story  :P may give some hope to ladies out there. Don't give up, know your stuff and beware of money -hungry doctors!

M

Offline HopefulK

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Re: Diagnosed with POF and pregnant
« Reply #1 on: 8/02/10, 21:39 »
Thank you so much for that, as someone who's been told my FSH is 18 and that means I have little chance getting pg on my own with IVF already mentioned.  So great to hear someone else with a high FSH have a positive result.  Sending loads of sticky baby dust to you have a happy healthy 9 months.
z

Offline maia74

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Re: Diagnosed with POF and pregnant
« Reply #2 on: 8/02/10, 21:58 »
Hi

I have heard and seen women getting pregnant with much higher fsh than yours. While I considered IVF I have heard a lot of good things about the Lister clinic and that they are willing to take you on as long as you have periods. They are private however and I was already thinking how I would save up to go there after all of my previous expenses... I would also recommend accupuncture, I have heard that it may help to lower fsh. I did just that and took wheat grass - some say that it can help too although it has not been confirmed. I thought to do anything I could to help the cause... right?

Good luck!

Offline Han72

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Re: Diagnosed with POF and pregnant
« Reply #3 on: 9/02/10, 10:02 »
Maia - Congratulations hon! ^BFP^ ^BFP^ ^BFP^ ^BFP^  thanks so much for sharing your wonderful story, I think I'll add it to the miracle story thread!  Out of curiosity, who was the doc on Harley St???  

I have to say I'm not surprised that you were told to give up. FF is full of stories of women who've been told to give up but who've then gone on to get pregnant either naturally or via tx.  It seems to me that many docs and gynies in particular suffer from a real God complex.  They refuse to take note of medical advances that go against whatever their core beliefs are and the result is that you get situations like this. I really think the issue is not so much the specialists all clubbing together, (you'll even find the docs within the same clinic disagreeing with eachother on certain points!)  I think that in some cases its their arrogance prevents them from thinking outside the box, others seem to be too busy to keep up with the research and most of them are too nervous to try anything that hasn't been fully researched with double blind studies and all the rest of it...  Thank gawd for FF is all I can say! :)

In any case, I'm soooo glad that you proved 'em wrong! Wishing you all the very best for a happy and healthy pregnancy and beyond! ^reiki^ ^reiki^ ^reiki^ ^reiki^ ^reiki^ ^reiki^

xxx

Just need to add that the opinions expressed on this thread are personal opinions and not ff opinions
sorry boring I know but just have to say it

Offline ANonnyMouse

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Re: Diagnosed with POF and pregnant
« Reply #4 on: 9/02/10, 10:23 »
What an amazing story! Thanks so much for sharing it with us and here's to your happy ending  ^pompom^ ^congrats^ ^clapping^

hello Nix and Hopeful  ^wave^

Offline simone hart

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Re: Diagnosed with POF and pregnant
« Reply #5 on: 9/02/10, 15:54 »
maia - thank you so much for sharing your experiences with us at FF. I found it really helped to read others experiences when I was going through the anguish of the tests and being told different things by different doctors. It makes your head spin but it is consoling to know you're not alone.
 Congratulations on your exciting news ^dancing spot^ ^clapping^ ^clapping^ ^banana^ ^banana^ I wish you all the best for a fabulous pregnancy. Really hope this works out for you ^pray^

I can share your disgust with the private doctors who seemed highly exploitative. So sorry for your bad experiences. like Nix said, some docs are very quick to reel the 'speech', without spending more time exploring all options. It actually hasn't been that many months since you came off the pill so it does sound a little like it was your body readjusting again. I also wasn't sure what day the doctor tested your FSH but if it wasn't day 3 ,then it doesn't count.

It's also good that you came off HRT. Don't know if you can conceive on it but you certainly didn't need it - so good not to follow advice to the letter either!!!
You recommend wheatgrass and acupuncture, I noticed, but  you also mentioned that you were on DHEA. Are you still taking it and do you think that may have helped at all? I've been on it for 2 months( been told you need 3 to 4 months for it to work) and although I'd heard about it before, I was worried about going on it without my consultant recommending it, as it is a hormone and not a vitamin tablet per se.

Thanks again for sharing your expeience with us, ^hugme^ ^hugme^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^

simone x


Offline maia74

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Re: Diagnosed with POF and pregnant
« Reply #6 on: 9/02/10, 20:59 »
Hi

Thank you for your kind words! I had first heard about the DHEA while I researched my diagnosis. It is highly recommended by the Center For Human Reproduction in NYC who have had some great results with women with POF. I did not have any side effects and only stopped taking it when I found out I was pregnant. I also took Agnus Castus but this is more for my crazy hormones than anything else. My intention was not to take everything that I came across but stuff that would go together. I have no idea frankly if any of it has helped but I figured that it was worth the try...

Xxx M

Offline Pipster1978

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Re: Diagnosed with POF and pregnant
« Reply #7 on: 9/02/10, 23:02 »
Maia,
Yours is such an amazing story and it has given me so much hope.  :) It shows that test results and a bleak prognosis aren't always forgone conclusions. I'm reading more and more about spontaneous BFP's for ladies with POF. Wishing for miracles for everyone on here and I wish you a happy, healthy pregnancy,
xxx

Offline Momito

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Re: Diagnosed with POF and pregnant
« Reply #8 on: 10/02/10, 23:04 »
Maia...this is brilliant news...congratulations!   ^fairydust^ ^rainbow^ ^fairydust^

Your story reflects a lot of the poor advice being handed out to women who are being told they are over the hill...the treatment handed out to you was heartless...BUT you must be so thrilled at being pregnant...it is wonderful news!  I am beginning to think that the AMH test is not very indicative of anything...quite a few women with supposed undetectable levels are getting pregnant...either naturally or with treatment...and after being told that ED is their only option.

All power to you and your DH...all the best for the next 9 months and enjoy your pregnancy (in between the nausea!).  It is a wonderful thing...and thank you for bringing hope to others.

Much love
Momito
xxxx

Offline maia74

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Re: Diagnosed with POF and pregnant
« Reply #9 on: 11/02/10, 14:57 »
Hi

Thanks again for all the kind words! Just a few months ago I was looking at posts on this site that gave me hope... I am happy that I can share my experience and reciprocate. My AMH was on the floor, literally... However, this test result can't actually predict if one will be able to fall pregnant or not. It is an indication of the ovarian reserve. There are many stories of women getting pregnant with low AMH and I am certainly one of them. After the devastating diagnosis I decided to take one day at a time. After a while I was beginning to get my head around DE but I promised myself that I would do anything in my power to try IVF with my own eggs (despite what the doc has said). There was one particular story that stuck in my mind  (on this site) and it was written by a sister of a girl who was diagnosed with POF and went on to have twins through IVF. Her body reacted so well to treatment that it was a surprise to all. So, I thought, you never know until you try!

I am quietly hoping that everything will be OK  ^pray^ and thank you for all the good wishes!!!!  ^hugme^ It means a lot.

X M

 

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