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Diagnosed with POF and pregnant

31K views 93 replies 14 participants last post by  Choccupcake 
#1 ·
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 :eek:. 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
 
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#2 ·
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
 
#3 ·
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!
 
#4 ·
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
 
#6 ·
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

 
#7 ·
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
 
#8 ·
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
 
#9 ·
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
 
#10 ·
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
 
#11 ·
Maia,

Thank you for sharing your story. You have given me so much hope as I also have an AMH below 1. NHS doctor has told me ED is the only way to go.....he believes that I don't have any ovaries and thinks the AMH & FSH results confirm this. Still getting AF regularly though and while this is happening I am not giving up hope of an ovary being present. I'm currently waiting for a second opinion consult to come through - just praying this doc won't write me off so easily.

Wishing you lots of luck and best wishes for the remainder of your pregnancy!

Pixie xx
 
#12 ·
Hi Pixie

I had a scan today and it showed a strong heart beat! I was overwhelmed also because of the journey I had taken to get here. After the scan I spoke to my new pregnancy doctor today that also has interest in women with POF who believes I was potentially misdiagnosed. He cannot say for sure but what he can say is that he would not serve me a 'death sentence' without more thorough investigation. He also said that although the chances for women with POF to conceive naturally are low - nobody can say that it's impossible!

I'm not sure what your diagnosis is and how you can get periods without ovaries.... What I know is that you must get another opinion! And if necessary, yet another one. I will never again trust just one doctor's opinion (unless I know one well). Despite the fact that they don't like to admit it - they can be and are at times wrong.

All the best of luck  ^hugme^ and thanks for your kind wishes  :-*

Maia
 
#13 ·
Maia - Congratulations on your scan - so pleased for you.  ^pray^it all goes well for you.

You then, absolutely must take your new born and show him/her to those heartless docs!!!

Glad you found a sympathetic doc as well -hope things go smoothly.

I also remember Little Jen, writing about her sister - that's an inspiration for us all and one of the first stories that I read when I first made tentative steps on FF.

well Pixie
Regular periods can only mean one thing - hormones and ovaries functioning!!! Hope you manage to get a scan soon and get a better second opinion too. Don't give up - there are positive stories, and believe in them,
Simone x
 
#14 ·
Oh Maia...so exciting!  So glad that everything is going well...we are all rooting for you!  ^hugme^
And of course...hoping to follow in your footsteps!  Also wonderful that you have found a sympathetic doctor with vision.  All that anguish...and quite possibly for nothing.  Enjoy your pregnancy!!!!

Pixie...Simone is right...if you have periods you must be ovulating.  I know that we are not doctors...but how else?

I received some very interesting news at my clinic yesterday (New Hope Fertility Center in New York)...I am 39...going on 40 in April...and I am considered to be young there!!!!  Whilst we worry about our low AMH (they never even mention it) and our "high" FSH...I had a long chat with the clinic's co-ordinator who told me that some of their patients have FSH in the 100s...every time I go there they make me feel more and more normal, healthy, positive.  The Director doesn't even like us to be called patients as he doesn't like the negative connotations that we are somehow ill.  We are not ill...we just have some challenges and the clinic tailors events to you and what is happening with your body.  The clinic also very much believes in not wasting good eggs that can result in healthy embryos and hence babies...unlike so many clinics that abandon treatment due to "insufficient" eggs (has happened to me in the past).
Like Simone, I really urge you to look into a clinic that will tailor to you and stop trying to make you fit into their ideal.  Above all, a clinic that believes in you and so will support you in the process.  It makes a huge different to your emotional state and mental approach...which if positive must help a good outcome.  Good luck and let us know how you get on!

Simone chuck...nice to hear you!  :)

Un abrazo
Momito
xxxx
 
#15 ·
Hey Momito,
Your clinic sounds great - just to be treated as a normal person, how lovely. You feel like you have a big sign hanging around your neck - high FSH/low AMH. You know I think there is something to be said for the self fulfilling prophesy -It's a lot to do with your mindset. If you're told, you're infertile. it's not going to put you in a positive frame of mind. You're simply not going to think it's possible. It set me off into a depression for months!!!

And they're so right about not being called patients- I like it!!!! And as for age - like all of us these days, we all still feel so young.( Not had the no sleep and exhaustion of a young baby yet). I turned 40 in January but 'last year', when I was told that I 'was somewhere in the 5 yr wilderness before the menopause' - I felt 49 and not 39!. It was such a shock. -
And to hear that you're one of the youngest in your clinic - what a breath of fresh air!!!! I'm so so glad, it's going well because I remember you were suffering jetlag and naturally concerned about the second cycle. Hope all is going well and you're not missing dh too much. It'll all be worth it I'm sure.

Much love to all, ^reiki^ ^reiki^
 
#16 ·
Hey Simone!

Great to hear from you and no doubt we will be crashing into one another on the other thread too!

Doc wants me to go for transfer this cycle...a couple of cysts developed since I was here last...they seem unconcerned and said that it was just a reaction to the clomid (whilst low stims I think I've been on quite a high dosage...the pharmacist seemed to think so!!  50mg a day for 10 days...).  Anyway...they said that the cysts should sort themselves out (they were described as being follicles that instead of having lovely little eggies inside, were basically sacks of blood...eeeuuuk!  that should spontaenously disappear).  Anyway...I am on estriadol in preparation for transfer...oohh aaah...despite it happening earlier than we thought am pretty excited!  Doc prefers to do just one...if I lose one...then he can try to understand why...if I lose both am back at square one.

Also wanted to say that the fact people have noticed a difference in you (the friend you bumped into at the supermarket who thought you might be preggars...) shows that all the hard work you are putting into your preparation and being healthy is having a good effect.  You've already got the glow girl!  And you are so right...knowing that the clinic believes in you is so important...if you go and they are dismissive and negative...good God...how on earth is that supposed to make you feel about your chances?

It is really hard when starting out to know where to go, who will give the right advice, who will give you a chance?  Doctors have fixated on ED...and whilst I don't wish to knock it...it does give a chance of having a family to those who otherwise really wouldn't be able to have one...it seems to be the easy option in cases that simply need a bit more tailoring.  One size does not fit all.  Have felt the devastation of being told that ED is my only chance too...if it hadn't been for my DH insisting on a 2nd opinion...well from there I picked up the chalice until we found the New Hope.  I know that there is a chance it won't work...but there is also a chance that it will...so I hang onto that!

Much love to all you girls out there...keep on fighting!

Momito
xxxxx ^sunny^
 
#17 ·
Ah, I feel all nice inside - all positive stuff. :) :)
I read this thread before the other thread, so you'll see I've asked you questions that you've answered here. ;D

Sending you lots of ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^

Let's hope more of us will be joining you Maia, ;)
 
#18 ·
Hi girls,

I can't say enough god things about my current doctor. My second scan was also perfect and the reason I am writing this is not by all means to rub it in BUT because I was convinced that my previous test results (high fsh and very, very low amh) would somehow influence the development if the embryo. Well, I was told today that this is not the case. All is going well so far and even though I know that I am not out of the woods just yet (9wks) I am keeping my fingers crossed.

In essence, according to my previous doctor, my ovaries were not producing 'good' eggs and women like me would find it hard to carry a full term pregnancy - so there you go...

Please do not give up hope and fight for your right to get help that you deserve  ^bigbad^. Don't let anybody tell you that they know for a 100 per cent how your body works!!!

I am keeping my fingers crossed for all of you/us out there.  ^hugme^  ^pray^ ^pray^ ^hugme^

Maia

 
#19 ·
Hi Maia,
Wow! I'm really glad to hear your update and that everything is going well. I've been at a low ebb recently and reading your post this morning has perked me up no end. I've just re- read your initial post too. Like you, I was diagnosed in October and told my ovaries were tiny and that there were no follicles. Well, I've now had 2 natural periods. One last month and one this month. I thought this would never happen again. Knowing about your amazing story gives me the courage to keep fighting and believing.

I'm really glad that you are getting good care and I hope that the doctors realise how significant your pregnancy is. I've had very good support from my consultant but you are proof that they can't predict on the basis of results what the future might hold. Sorry- I'm going all 'mystic'. In fact, one of my POF friends has nick- named me Mystic Egg. Anyway. I'm rambling!

Keep us posted on how things are going with your incredible news and keep happy and well,
Pippa x
 
#20 ·
Dear Maia,

Really glad that your pregnancy is going well. ^hugme^ ^hugme^ Thanks for the update too - I really appreciate it and I know that others do too.
We do have our low days - and your good news keeps us going - and fighting on.

Love Simone x

Lots of ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^ ^fairydust^
 
#21 ·
...wonderful news Maia...we love hearing positive stories!

Pipster...keep on the good fight...if you have periods of course you have ovaries...what are those docs on about?!

I have my first egg transfer on Monday...have become rather nervous and anxious...trying not to be but it is hard...so keep your fingers crossed for me.... ^pray^

Momito
xxx
 
#22 ·
congrats, what a great but also awful story of how people can be given such advice. I was told at the age of 19ish that my ovaries were like pickled walnuts and that my only hope of baby was with egg donation. I am currently carrying my second miacle baby and luckily had been with my DH for a few years bfore we got our 1st shock miracle :eek:! Im sure I could investigate my original diagnosis further but im just happy they were wrong nd im too busy these days!
 
#24 ·
Hi Maia...how is everything going?  Well we all hope!  ^reiki^ ^reiki^

Fran...another miracle story...pickled walnuts or not...your ovaries seem to be working pretty well!! 

Thanks for sharing your experiences with us...these positive stories do give us strength and it is also lovely to be able to celebrate your successes with you!

I'm on my 2ww...should know early next week...so keep your fingers crossed for me!!!

Lots of love
Momito
xxxxx
 
#26 ·
Fran - thanks for sharing your miracle story with us - I've had some very disappointing blood tests back and so your story is just what I needed.
Hope it's all going well!!!
Momito - hello again - hope you're enjoying being PUPO!!!
Hello Bonita - nice to meet you!
Love Simone
 
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