Really suck and need advice

[zoomies1]

Hi All,

I'll try to keep this as short as possible but any advice would be gratefully received!

Rough timeline -

• Nov 2018 had the mirena coil removed (just turned 37).
• Dec 2018 got pregnant
• Feb 2018 ERPC followed by extremely light periods - maybe a day and a half, just needed a liner
• Jan 2019 pregnant again just as I was starting at the NHS fertility clinic
• end of March ERPC and now no periods at all.

The tests carried out in Nov / Dec 2019 were okay , not great but not terrible. A scan didn't show any signs of scarring in my uterus so the GP says I just have to wait.....'perhaps I'm just stressed'. I'm not stressed. Well, I wasn't.

I can't proceed down the assisted route because I'm not having periods so can't have the hyscosy (sp?) and the GP says there is nothing she can do to bring on a period as it wouldn't be a real period anyway.

I turn 39 in August and I am completely stuck. DH currently doesn't want to try IVF but I don't want to leave it any longer and would like to try once. I would be happy to keep trying naturally but if it takes another year it could be too late, especially if we just lose it again. NHS won't do any testing until after three losses so there is every chance that is what would happen.

What do I do to at least get my periods back? I have lost seven months on one failed pregnancy! I am still ovulating every month (BBT and OPKs). I heading into cycle five.

Ha! Sorry - that was meant to say 'Stuck' not 'suck'

I'm so sorry for your losses @zoomies1 ❤️ I think you do need to at least see a gynecologist - I didn't realise it was possible to ovulate and then not have a period?

Due to your age you are eligible for recurrent mc testing and some areas do after 2 anyway. The only thing I'd say is the wait is likely to be long and my rmc isn't even open yet (Tommy's Birmingham).

Also you're eligible for a fertility referral, again due to your age and how long you've been ttc.

I'd go back to the GP (can you see a different one?) and ask that they start you on the fertility tests with a view to a referral.

After my first loss, I was referred to a community gynecologist that I saw at another GP surgery within a few weeks - she wasn't looking at fertility but I'd try to push for that too. X

I’d be going back to your GP to ask for a referral to the fertility clinic/ gynaecology. Sounds like something is going on if you’re not having periods for so long and a scan alone doesn’t rule out Ashermans (scarring of the lining of the womb). This normally needs a hysteroscopy to look at the lining directly to diagnose. It could be a number of things but given it’s been a problem for >1 year with no firm diagnosis then it doesn’t seem right not to look into it further especially given you are TTC and into your late 30s. x

@VenusStarr thanks for your response.

The GP was confused and called a gynaecologist who was also confused apparently. She told me that women who are breastfeeding don't have periods but can still get pregnant so I should keep trying....?

Apparently the rules have changed and regardless of age, I get no further investigations until after three losses. I had a referral for the fertility clinic and had my first appointment the week I found out I was pregnant back in early Feb. They won't see me again until the hyscosy and I can't have that until I have a period. I don't qualify for any NHS IVF so I would have to do that privately anyway.

I always seem to be one step behind and it is so frustrating.

That sounds like not helpful advice @zoomies1

The GP can prescribe you something to bring on a bleed - I've never had it but begins with an N, it's worth a try? You could then at least have the hycosy?

I'm sorry the fertility clinic aren't being helpful either. No wonder you're feeling stuck!

I wonder if your GP would refer you to Professor Quenby - she's in Coventry, don't know if that's feasible for you.

This might be terrible advice, but part of me wonders that if you're tracking your cycle, not ttc for a bit and so you know you're definitely not pregnant so you can have the hycosy? It's not great though as you're still none the wiser about why you're not bleeding.

As @Lemongrass1 suggested, it might be worth pushing for a hysteroscopy too which is the camera in your uterus. Mine picked up and they then removed a polyp (no idea it was there as scans showed nothing). My fertility clinic did this as part of their initial investigations.

Or, would you contact a private clinic (assuming you'd be up for trying ivf as an option). It might be worth having a consultation at least to get another opinion considering the GP and gynecologist has not come up with anything useful!

Are you getting any spotting at all when you're expecting your period? Just wondering if you could have scarring, which a scan wouldn't show, you'd need the hysteroscopy.

I'm sorry this is so frustrating for you xx

@Lemongrass1 I went privately for a hysteroscopy after the first MMC but there was no evidence of scarring. That obviously doesn't mean there isn't anything there now but I feel that they would just do another scan and send me on my way.

I will take your advice though and push for a second opinion from my GP and ask for a referral to a gynaecologist. At the moment, they want me to wait another month.

Thing is - to complicate matters, I have been referred separately to another gynea because some lumps appeared down there and I have now been told it looks like I had Lichen Schlorosis in my early 20's and the lumps may need to be biopsied as I have a higher risk of cancer! That was my Monday.

Today I have arranged for collections for two pregnant team members and had another baby bomb.

To be honest, all in. I'm not in a great place right now.

@VenusStarr no spotting.

I will look up Professor Quenby, thanks for the suggestion.
I might bite the bullet and go through my work BUPA to contact the Ashermans specialist in London as well.

You are right though that an artificial bleed might still allow me to have the hycosy and at least it would move me further along the path.

I have considered making an appointment with a private clinic. Just need to pitch it to DH as I know he won't want to pay (we can afford it but I think he is bitter that he doesn't know anyone else that has had to)

I'm sorry to read your other update about the Lichen Schlorosis and lumps @zoomies1 you've got so much going on and it would be helpful if you could get someone who will properly listen to you and investigate.

I've not seen Prof Quenby but her secretary is very nice. I did go to the implantation clinic at Coventry.

If you are able to see an Asherman's specialist via work that would be good, even if it's just to check and rule it out.

My dh is similar in that he's able to patiently wait for the nhs whereas I know how easy it is to fall through the net. Although he is now open to going privately and seeking out our own answers, but that's taken a while. I've learnt to be my own advocate. I think having a plan and ruling things out for piece of mind goes along way, as does having someone who knows what they're talking about who will listen to you. Xx

Thanks @VenusStarr you're very kind and that has really helped xx

@zoomies1 the ashermans specialist covered by BUPA is Adrian Lower. I've been under his care on and off for 3years and I can highly recommend him. BUPA don't fully cover him but he is worth every penny over that and we wouldn't have the son we had without him. I had almost the same as you - no period after ERPC which a scan showed nothing but in scoping my cervix was completely 'obliterated'. Fast forward to retained placenta and the scarring returned, again only visible directly. Now about to proceed with IVF and FET as my lining is so thin it's unlikely to hold a naturally conceived pregnancy and if it fails it would not withstand another loss. Good luck, it's an agonising journey but I feel like I have answers with Mr Lower.

@swishswashswoosh thanks.
I have called and made an appointment with Adrian Lower. Its just a virtual consultation so more waiting but at least I am taking control where I can.

Good luck with the IVF. I really hope everything works out for you!

Good luck @zoomies1. I hope you get the answers, and results you want 👶🏻