IVF - Miscarriage- Adenomyosis - Endometriosis UK

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IVF - Miscarriage- Adenomyosis

Hallj10 profile image

Hi ladies.

I am going through IVF.

Had 2 miscarriages. They thought I had a tshape uterus but after MRI been diagnosed with adenomyosis.

Been started on 3 months Prostap. Having horrible side effects worse insomnia and nausea.

Due a FET after a check scan after the 3 months.

Looking for positive stories.

Jenny

12 Replies

An anyone relate to my story x

Hey, I have adenomyosis and currently on my first injection of Prostap before my first FET. I'm having three monthly injections. I only had my inject on Wednesday but so far I've been extremely ragey!

Hallj10 profile image
Hallj10 in reply to Mrspug45716

Hi. I am nearly 5 weeks in now. The beginning I had lots of nausea from the rising oestrogen then since it’s dropped I’ve done nothing but have hot flushes and not sleep.

It’s horrible. Had a few very low days too.

Hope you have a better experience than me.

Hoping I only need the one. Scan is booked for 06 Sept to see if I can have the next FET.

I am just unsure how the next FET will go. Obviously they normally give oestrogen and progesterone but surely that will

Make the adenomyosis come back quicker.

Jenny

Mrspug45716 profile image
Mrspug45716 in reply to Hallj10

I wouldn't worry about the oestrogen they give you for the FET as the Prostap has an anti-inflammatory effect for a while after you are on it. I think it lasts longer if you're on it for longer. This is the protocol that is shown to help with adenomyosis so you're on the right track!

I'm so scared about insomnia and depression as I have a history of severe depression. But I have no choice but to bear it all. My biggest fear is a failed FET as my consultant has told me that I'd need three months of Prostap for every FET I do! So that's only 2 a year! I just don't want to be doing this for much longer. We started IVF November last year so it's been almost a year so I'm feeling like I'm losing patience having had three rounds of IVF, and Surgery so far, then three months of Prostap...

Hallj10 profile image
Hallj10 in reply to Mrspug45716

Hi

Sorry for the delayed response.

That’s good to know about the oestrogen. I’m worried about the nausea once my oestrogen starts to rise again.

I am still having terrible night sweats. Drinking a litre a night and constantly on the toilet. Gave up on sleeping meds. Just make me more crazy and have horrible dreams and still don’t really sleep through the night sweats. So no point waking up with the meds dragging on.

Last 4 weeks for me. Scan on the 6th Sept to see if I can have my next FET.

Hope your getting on ok?

Jenny

Mrspug45716 profile image
Mrspug45716 in reply to Hallj10

Hey,

Not long now for you, 4 weeks to go!

I just had my second shot of Prostap today so I'm 4 weeks in, 8 more to go! Although I'll probably start my oestrogen after 2 weeks following my last shot so it should actually be 6 more weeks to go until I start the FET drugs. Did you have bad side effects from the start of your 3 month course of did it get really bad after a while? Mine have been manageable but I am waking up constantly through the night.

Hallj10 profile image
Hallj10 in reply to Mrspug45716

Yeah I had the Prostap 3 injection so it’s the long lasting one.

The sleeping and sweats have been the hardest thing. I was getting brain fog at work but not sure if that was more related to the sleeping tablets.

My mood was a bit up and down to start but ok now.

Had lots of nausea to start with the initial rise in oestrogen.

Jenny

Mrspug45716 profile image
Mrspug45716 in reply to Hallj10

Hey, hope you're getting on OK. I'm finding the insomnia the hardest part for sure, I can manage the other side effects with regular exercise but the lack of sleep is hard.

Can I ask, were you told whether you'd need to go on Prostap again for another full three months if your FET failed and you started another one? Obviously I'm really hoping that both of us have success first time but I've been wondering what will happen for the next FET. I hate the thought of another full three months on Prostap each time you try.

Hi. I’m not too bad. I still have night sweats on and off all night but managing to sleep around them kind of. Think i must be adjusting to them. Can’t wait for it to be over though.

I was worse when I was taking things o sleep as still don’t sleep and just woke up doped up and still sleepy. Gave me brain fog.

I unfortunately only have one embryo left from this cycle so If it does not work I would need Prostap and down regulation again as the hormones for the egg retrieval may make the adenomyosis come back. I don’t think you need another three months after each FET. Just if you need to start again.

All hopes on this last embryo. Have my scan 6th Sept.

Where are you in your treatment now? X

Hi there, just joining this thread! I have recently been diagnosed with adenomyosis after a Receptiva Rx test showed positive for BCL6 protein, alongside the other symptoms and a family history.

I have had two failed FET with normal PGT tested embryos pre diagnosis. My doc suspected I had this though before my first FET and so I did 6 weeks of Prostap (2 shots) before my first FET.

I wasn’t too bad on the side effects - similar hot flushes and some nausea… I’m not sure about the sleep issues as I’ve been having trouble sleeping anyway since starting on this journey last year.

I had one embryo left but I’ve decided to do another egg retrieval now before implanting my last (I want more than one kid and was advised best to bank some more now).

Then I also now have to do three months of Prostap before my next transfer which I’m gutted about as I was preparing for a transfer this month before I got these results. The waiting game is so so hard. Would love to keep up to date with how you ladies get on.

Hallj10 profile image
Hallj10 in reply to Lola124

It’s such a hard journey.

I should have made more embryos before I did the Prostap 3 months and my last FET but heinsight is a wonderful thing. I honest thought my last embryo would work after treatment as my first 2 did implant but ended in miscarriage.

I will make more embryos and pray I don’t need more Prostap or look at my sister being a surrogate for me.

Need to know my chances moving forward really. Speaking to the specialist Saturday.

Keep in touch. Jenny x

It’s so hard to know what to do. Every which way has so many pros and cons. Half of me is regretting doing an egg retrieval first - whichever way I’m sure there’s doubts given the sacrifice and emotion tied to it. We’ll get there, hope your appointment goes well. Xx

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