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Ashermans experiences

(9 Posts)
Enp2019 Sun 21-Jul-19 16:48:35

Hi
I’m hoping to make a private appointment tomorrow with a leading specialist at Harley Street regarding possible Asherman’s syndrome. Obviously this needs to be diagnosed but I would like to research worst case scenario so I’m prepared for that too.
Any experiences?
What happened in the first consultation?
What was waiting time/fees like?
How long did you have to wait to Ttc?
Thanks xx

ChocolateGateaux84 Sun 21-Jul-19 19:34:00

I have no personal experience of asher man's myself, but I have a friend who has, I know its quite a niche diagnosis. I believe its a diagnosis made by elimination, rather than a 1 off test but can't be sure.
From what I know they will be looking for an exceptionally thin lining, like 1mm-2mm, rather 6-7 that some think may indicate Ashermans.
There are 3 layers 2 your lining. The top 2 repair themselves easily. Hence why people can have scratches etc.
However the bottom, basal, layer does not repair. Abrasion to this layer can cause permanent scaring. This in turn can cause lumpy uneven endometrial growth and in turn a problematic thin lining - Ashermans.
Sorry if I've rambled
As I said it's a pretty niche area so wasn't sure how many replies you'd have and didn't wanna read and run
Good luck with ur consultation
Xx

MummyToALittleMonster Mon 22-Jul-19 11:59:55

Asherman's can only conclusively be diagnosed by having a hysteroscopy to actually view the lining. The same procedure can also be used to remove the scars/adhesions. It is quite a niche speciality so it is important to get a consultant who has Asherman's experience. It probably took me about a year to find a consultant who agreed to operate and then a wait of about 8 month to have the hysteroscopy on the NHS. If the amount of scaring is small then you can get the all clear to TTC soon after. If it is more extensive then the consultant may put it a balloon (not as bad as it sounds!) or a coil after the hysteroscopy to allow the lining to heal and then give hormone pills to build up the lining. I was about 4 months post operation before I was given the all clear to TTC again. There is a couple of Facebook groups which I found useful 'Asherman's Syndrome Awareness and Support' which is global and 'Asherman's Syndrome Support UK & Ireland' which is for the UK.

thankfulbee Wed 20-May-20 11:35:45

@enp2019 I know this thread is really old, but how did you get on with your visit? I am also hoping to see a specialist, Mr Lower, in early June as I have some concerns about my periods not resuming after an ERPC back in April.

Enp2019 Wed 20-May-20 11:44:15

Hiya. I’m actually going back in June to see him following another missed miscarriage. He was amazing! We were told we were infertile and he sorted us out, bit expensive but obviously so worth it! We found out we were pregnant the first month we started trying again (although obviously this didn’t work out either). During this next appointment he’s going to check for any damage following my recent D&C and run a test to check for “sticky blood” in the hope we can avoid more upset. He really is professional and makes you feel like an actual person rather than just a number which I was made to feel on the nhs. Please let me know if you have any more questions. Hope you’re ok xxx

thankfulbee Wed 20-May-20 12:11:28

@enp2019 Oh that's wonderful to know, although I'm so sorry to hear about what you've been through sad

I have posted my background here which I know probably sounds like I am over-reacting, but I am very similar to yourself from your OP in that I am taking the worst case scenario route.

Although I do respect the NHS, I don't trust them to do things quickly, or act appropriately when it's something highly specialised - I know I could keep waiting or ring my GP, but I just know I won't be taken seriously. As you say, it is expensive, but even if things are OK, I will be happy to get some expert reassurance.

If I can ask, how did you find your first consultation? With COVID, I am a little frustrated as I believe in the past both the consultation and a scan (which I want) could have been conducted on the same occasion, but now everything is via telephone/video.

Enp2019 Wed 20-May-20 12:16:00

I honestly understand everything you’re saying, I have the exact same feelings. I was palmed off so much last year and it really frustrated me especially given the fact by the time I took it into my own hands I was infertile and in so much pain. My GP just told me to come back if I was still in pain 6 months later- whaaat?!

Yes we had the consultation and the scan together and it was really useful but obviously it’s all up in the air now given COVID 🤦🏻‍♀️

Enp2019 Wed 20-May-20 12:20:49

Have you been checked for an infection? A scan for retained tissue? They had left the placenta in last year which caused a manic dash to A&E from falling so ill from the infection. It was only then did they scan me and confirmed “a mass” which was later confirmed as the placenta 5 weeks after the initial D&C. I also basically screamed at them when I was in A&E for a HCG test and it came back at 2401. It was only then that they took me seriously. It was a combination for the two D&Cs and the infection which resulted in my “quite severe” ashermans so definitely make sure you don’t have an infection x

Enp2019 Wed 20-May-20 12:25:28

...or retained product

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