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Anyone going through this? Premature Ovarian Failure

(24 Posts)
FruitfulC Fri 10-May-19 13:58:15

Hi all, so I have had 3 interesting tough years: dad was diagnosed with cancer ( he beat it in the end ) and MIL passed away after her 3 years fight with cancer and I was off work due to stress and coping with it all.

Then my period stopped!

I saw my Gp, had several blood tests and FSH ,LH levels came back really high. Doc said I have POF and that my only chance to have a family would only be with a donor egg or adoption. I have no history of this in my family so this is strange to me and I believe that my stress really messed up my hormones sad
I am only 31 and really want to start a family.
Was devastated by the news but I took it as a challenge to do all I can to heal my body, with my diet, supplements and lifestyle change and DH is super supportive.
I find that the other countries offer a lot of support around this rare condition or maybe I just haven't looked well enough?
I am hopeful that I will be a mother of my own ..
Is there anyone going through this or knows someone who is going through this healing process? Please share your thoughts, suggestions, knowledge or anything that has helped or is helping you ..
Thank you ( sorry for such a long lost)

PaintBySticker Fri 10-May-19 14:11:12

Hello. I’m sorry this has happened to you.

Not exactly the same but when having investigations for secondary fertility I found my ovarian reserve was very low (low antral follicle count, high fsh and low amh) and ivf unlikely to be successful. We had our second child with donor egg ivf but it took a long time to come to that decision and it’s not for everyone.

Taking a natural approach to improving your health generally can only be a good thing but I don’t know if it’s likely to reverse pof. Good luck with everything. I found the Fertility Friends forum useful and you will definitely find women you’ve been through the same thing as you there.

Andcake Fri 10-May-19 14:26:22

I went through this ...I did eventually get pregnant as I still had occasional periods. But it was 3 years of hell..I would love ds to have a sibling but my periods never really returned after him.

Yoga helped me a lot..being able to control at least something about my body.

Also it's not as rare as you may think...I have come across a few in real life as well as a lot of support on the network 54 high fsh forums.

FruitfulC Fri 10-May-19 14:30:55

Thank you PaintbySticker for your reply. I know donor eggs are not for everyone and notwithstanding I will absolutely love the child whatever the case may be. It is just hard to accept that that is the final answer.
I am quite a positive person and spiritual person and I hope these little steps and changes can go a long way.
The book 'The Hormone fix' by Anna Cabeca is really helping so far, I will also check out the Fertility friend's book as you suggested, thank you smile

FruitfulC Fri 10-May-19 14:39:08

@Andcake so great to know that you were still able to conceive , this is a hard challenge and expensive one too.
In this challenging time all that is needed is support and I am not sure where I would be without all the support around me.
I have so far cut down on dairy, gluten, and having more veggies and started my acupuncture sessions which has been helping with my symptoms and Hot flashes have reduced a lot! So I believe something is working I guess.

hoping2018 Fri 10-May-19 22:30:51

The daisy network may have some helpful stuff x

Lauren83 Sat 11-May-19 04:52:02

I was diagnosed with POF at 29 due to severe endometriosis (AMH 2/FSH 27/AFC 4) tried own egg IVF but they said donor egg only after a failed and cancelled cycle, I did have a son through donors eggs last year and then caught naturally when he was 8 months and due DS2 in 6 weeks

BaruFisher Sat 11-May-19 05:15:35

I’m so sorry to hear that. I had the same though at an older age (38) and also after dealing with bereavement (my dad died from cancer just 3 months before)
After a lot of discussion DH and I decided we would not go down the route of donor eggs and IVF. Making that decision allowed us to grieve and come to terms with the situation rather than always going through the rollercoaster of emotions that comes of battling infertility that I have seen so many friends go through. Being older than you did make the decision somewhat easier to make as we knew there could be difficulties conceiving in late 30s anyway. Think carefully about what is right for you and your DH.

Almost 7 years later we are childless but have come to terms with it and live a very happy life. Our relationship has gone from strength to strength and we have been able to create a better work life balance which we would never have afforded to do if we had DC.

I just wanted you to know that a happy future is possible if things don’t work out or you decide not to go ahead with treatment.

Best of luck to you both whatever you decide

Ilikeviognier Sat 11-May-19 08:06:56

Sorry to hear this. Are you having periods at all? If you are, there is definitely hope for natural conception. At your age any eggs you do have are likely to be good quality and you only need one.

Not quite the same but my amh was low and fsh high age 34- I still managed to get pregnant so it is possible.

Andcake Sat 11-May-19 16:25:12

I also set myself a deadline 40 for me of moving to donor eggs.

I didn’t spend a lot of money in reality as no ivf clinic would help 😂

Dhea and b vits helped - I had a few miscarriages before dc and had times when my period stopped for months.

Jingers5 Sat 11-May-19 16:34:04

I have pof, tried ivf but to no avail. I went on to get donor eggs. I have two beautiful kids that l would not change for the world. It was difficult at times as it was a grieving process but it was a worthwhile journey.

Explorers10 Sat 11-May-19 16:54:40

Can I ask how high FSH is for premature ovarian failure? Is this when FSH is above 10?

Jingers5 Sat 11-May-19 17:00:31

My doctor once told me that fsh can change each month, so one month it could be fine and the next month high. Mine was 8.9, then 29, it varied alot.

Ilikeviognier Sat 11-May-19 17:50:17

I think it has to be quite a bit higher than 10 for POF. Higher than 10 indicates low ovarian reserve which isn’t quite the same. POF is when the ovaries fail a lot sooner than they should and the numbers are more extreme

Lauren83 Sat 11-May-19 18:01:20

Like PP said when mine was around 10 I was told I low reserve, it's only after failed and cancelled own egg IVF and it went to nearly 30 they said it was POF and it was donor eggs or nothing. With regards to own egg IVF the suggested upper limit tends to be around 10

FruitfulC Mon 13-May-19 11:13:23

Thank you everyone for sharing your stories which is really encouraging. My FSH levels went from 11 to 83 and I haven't had my periods in 13 months now sad
However since I started seeing my acupuncturist, this has indeed helped. I started spotting at my second visit , so taking some herbs + acupuncture to help increase my blood flow. Supplements, yoga and regular walks and staying positive are really helping . I am positive about this smile

ckc45d10 Tue 14-May-19 12:38:24

Happy to hear you are staying positive! Have you also considerd CoQ10 or ubiquinol? Research suggests it may support fertility as well.

BoRoni Tue 14-May-19 13:57:32

Hello ladies,

Hope you don't mind if I join in the conversation.
I have just turned 40. We have been trying for a baby in the last 3 years without any sign of pregnancy. Last year I was sent to the fertility clinic where they found out I have fsh ranging from 32-64 and AMH below 1. Crudely the consultant informed me my only chance to have a child is via donor egg. IVF also out as we are not eligible anymore and also my fsh too high..
Lately I stared to have hot flushes which freaks me out The irregular cycles were much better to live through... and now add to the list of issues I have positive opk for 4 days in a row which quitter possibly again another sign of menopause.. ( def not pergnant).. Every single cycle I get a new problem..
Im so sad!!!

FruitfulC Tue 14-May-19 14:17:01

@BoRoni Thanks for joining the conversation.
I am so sorry this is happening to you too sad
This is exactly how it started with me, my Doc broke the news to me in such a cold manner . What are you doing at the moment? Has your doctor already suggested HRT? My doctor said he wants to put me on HRT but I refused it as I want to see what changed holistic treatment can make. Have you considered holistic medicine?

I really hope it goes all well for you.

RedPandaFluff Tue 14-May-19 14:24:34

Hi ladies - I thought sharing a little of my story might help.

When I was 32, after two years of TTC, I was diagnosed with POF - FSH was 35 and AMH less than one. I was devastated and couldn't get my head around donor egg IVF and having children that were genetically not my own. We stopped TTC and I tried to get on with my life. I took every supplement imaginable though, and made all the lifestyle changes, but had even worse results a couple of years later, and ended up on HRT.

I'm 39 now and a couple of years ago the urge to have children became very strong. I fell in love with my sister's little boy and my close friends' babies, and realised that the genetic link doesn't matter to me any more. After a long, difficult 18 months of donor egg IVF cycles, I'm finally 7+5 and so, so happy (although I'm terrified on a daily basis that I'll lose it!)

I just know that this baby is mine and I love him/her already. And I'm just so incredibly grateful to my amazing donor.

I think you just need to take some time and your emotions and instincts will eventually lead you to the right path. There's no need to make hasty decisions - the good thing about donor egg IVF is that time is less of a critical factor so this takes some of the pressure off.

I wish you lots of luck in whatever you decide!

Magnificentbeast Tue 14-May-19 14:57:13

I'm sorry you're going through all of this @FruitfulC. Your situation is very similar to what I went through a while back. I had been through a bereavement and had lots of other stress and anxiety.

I put my symptoms down to stress until we started trying for DC2 when I was almost 38. I was eventually told it was POF and our only chance of conceiving was via donor egg. I was grieving and was quite adamant donor IVF wasn't for us. I read up on it loads, changed my lifestyle and found a wonderful acupuncturist. The acupuncture was worth it just for the good it did my overall sense of well being. I also took Chinese herbs. Like you I rejected HRT and I found lots of other natural avenues to pursue.

My age at the time added pressure as I knew my chances of conceiving without IVF were lower.

In the end we opted for donor IVF. We had one viable egg but it was all we needed. DC2 arrived almost 5 years ago as a result of that cycle. I got my positive test on my 40th birthday!

DH and I agreed that we would give donor IVF one shot only and I didn't want to keep trying into my 40s. I think the deadline really helped in a way.

You are younger than I was so that's a positive. Try not to panic. It's very emotive I know.

Best of luck with it all.

BoRoni Tue 14-May-19 15:21:28

Hello FruitfulC,

I was not prescribed with hrt. My GP said until we are trying not to start the HRT as it may negatively affect the pregnancy. I got fluoxetine for the hot flushes but im not started to take them because the flushes gone away im the last two weeks but thay are back as of yesterday so I might start using them now. I have tried acupuncture but not a slightest improvement so I have stopped. Im taking fish oil, colq10 and normal vitamins during tcc. I have been through a lot of supplements but honestly everything is sooo out of sync I dont know if it because of the herbs or menopause..
I'm loosing hope..

FruitfulC Tue 14-May-19 16:10:43

@Magnificentbeast and @RedPandaFluff thank you so much! Your stories are super encouraging! I will try to exhaust all options whilst on this journey and at the same time staying positive .

@BoRoni I know it's hard especially when I see babies everywhere I go and wishing I could get one easily too, but I am determined to try my hardest this time .

ckc45d10 Tue 21-May-19 19:41:44

Sorry to hear about what you are going through!
Yes, ditto for CoQ10, and a water and fat-soluble form absorbs better.

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