primary ovarian insufficiency

[JasmineLuianna]

Hello,

Can anyone help me?

I am 37 and still having my period.

I am worried that the hrt will mess up my cycle as it is 28 days and my cycle is 25, so it will be out of balance with the patches befer long. is that bad?

I dont know. I just want the best chance, and information

I have just had my second blood test for FSH levels. They are at 65. it says im after menapause but my symptoms just started.

I am now on hrt to relieve the symptoms but I am so unclear about what is happening to me and why.

I want children, and I am trying now I've heard the news of this hormone being high.

[DianeArnold Partner Nurse Fertility Network UK]

Hi Jasmine. Have you been told you are no longer producing eggs? If so,you may need to use an egg donor to have a family. Perhaps you need to check your AMH to see if it is possible to use your own ovaries? Hopefully you have been referred to a fertility specialist. Good luck. Diane

[JasmineLuianna in reply to DianeArnold]

Thank you for your reply Diane,

I have not been told that i dont have eggs. just that because my FSH level is so high that it is unlikely ill conceive.

I am still having periods so i am still ovulating.

The dr doesn't know much about it all unfortunatly. He has referred me to a specialiset but the waiting list sounds like its over a year.

I am on hrt to releive symptoms but not sure what i need to do or where to go for answers in regards to the condition and whats best to do

[DianeArnold Partner Nurse Fertility Network UK in reply to JasmineLuianna]

Hi. Wherever you have been referred, see if you can get a cancellation to bring your waiting time down. Diane

[mandp82]

hi there, hope you are ok. Do you know what day of your cycle they did the FSH test on? It should have been day 2-5.

I have a very low ovarian reserve but found my FSH fluctuated a lot from month to month. AMH (blood test) and AFC (internal scan) are more accurate at looking at your reserve of eggs. Most private clinics offer these tests on their own usually a few hundred pounds in total. I know it’s not free but it might be worth doing it if the nhs wait is over a year. Sorry to hear this.

[MontsJ]

I wanted to recommend a book called POI and Early Menopause, lots if info there and the authors are on social media

The Complete Guide to POI and Early Menopause amzn.eu/d/92bGfO0

I don’t know the exact answer to your question, what is your luteal phase length? I think from what you are saying I think it may be less than 14 days.

[Lana2009]

Hi Jasmine,

So I have POI. My FSH was and the same when I found out. I was also having symptoms. I also still have my period. I was told I’d need donor eggs. I was devastated.

Your FSH is the hormone that tells your body to ovulate. So the fact that it’s working hard and means it’s struggling to do so.

Unfortunately you can have a period but not ovulate or ovulate infrequently. Annoyingly my gp only tests FSH to diagnose but in terms of IVF, AMH if the most important as it tells you how many eggs you have left.

When I found out about my FSH I had already started trying. I went for an ovary scan where they could see one ovary wasn’t doing anything but the other was ovulating! I was so relieved. Also My FSH had Actually dropped to near normal levels and most of my symptoms disappeared. So we decided to try with my own eggs. However when I got to my clinic for ivf they tested my amh and is was very very low (less than 0.7). This meant that it was extremely unlikely that I would be able to have children with my own eggs.

We did try a round with my own eggs but even on the strongest of medications nothing happened - no follicles developed at all!

We then moved to donor eggs.

Are 3 embryo transfers I now have my 2 year old twin girls.

Not going to lie, I really struggled emotionally with the grief of losing my genetic connection to my children and all that symbolised for me! So it might just not seem like an option for you right now. And you might not need them but I’d suggest looking at the Daisy network - it’s all bout POI and if you’re on facebook consider joining a group called Daisy Mums. They are an awesome group! I can give you lots more resources if you want to PM me!

Sadly GPs aren’t specialists in this area and often get it wrong! So I’m pleased you’ve been referred to a as specialist 🙂

Am happy to anise any other questions, it can be such a difficult time and thing to get your head around!

Also to say HRT is good! It will help and it won’t matter about ivf or getting pregnant. It will help to regulate your period. It might take a few months but essentially your periods are trying shorter because your hormones aren’t balanced anymore. This is really common is both POI and perimenopause (all women go through this before menopause and it can last up to a decade before going through menopause itself!)

Sending you a big hug!!

Xxx

[Katsi]

I had very low AMH when was doing IVF. It was less than 0.12 at 39 years old. It went a little bit higher after I started vitamins, exercises, supplements but still was very low. And I gave birth to my daughter 2 days before I turned 41.

AMH is only an indication that conventional IVF will lots of fertility drugs will not produce many eggs. And i confirm that from the experience. However, it it does not mean that you can’t get pregnant. If you ovulate you can get pregnant, you could try natural or mild IVF as I did. If there is no ovulation in one cycle, it’s not over either.

If you don’t have an easy access to a doctor, perhaps you could buy a home fertility monitor to track your hormones at home so it would give you an idea of what’s happening in your body and if you ovulate.

I hope everything works out well for you, please keep faith!

[Poop84 in reply to Katsi]

What that's naturally or via ivf if you don't mind me asking x

[Katsi in reply to Poop84]

it was from mild IVF ( femara 2xday and Pergoveris 87,5 IU / day), I also had DHEA supplements (100mg), ubiqunol, vit D, for around 3 months before and spent a lot of time hiking in the nature as it was pandemic and had reduce 60% of work schedule.

[Spicycurry]

What day was FSH tested? You can do oestrogen priming which helps follicles grow at even length. You take norethisterone or similar from cycle day 14 and then start hrt on cycle day 21. Then you stop norethisterone on day 28 of your cycle and keep taking hrt until the first day of your period. This is the plan that worked for me. You can also take omega 3, ubiquinol, vitamin d and wheatgrass. These help with fsh. You should avoid wheatgrass when you start stims. You could mention all of this to your ivf clinic. At 37, you still have a chance.