Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Asherman Syndrome

9 replies

CrazyDiamond30 · 13/07/2023 22:02

Has anyone experienced/been diagnosed with asherman syndrome?

Looking to fully understand the symptoms and side effects, physically and mentally.

OP posts:
Hopefulhoney6 · 14/07/2023 08:44

Yes - I was diagnosed in March this year. Also known as intrauterine adhesions I believe.

It is caused by an operation on your uterus - a D&C/ERPC for a miscarriage (my cause), a C-section or other op eg for endometriosis. My symptoms were that I tracked my cycles with OPKs/BBT so knew I was ovulating, but when my period should have come I didn’t bleed. I got a bit of spotting but not much. This is because the lining isn’t able to build up due to the scars. It also means an egg can’t implant if you’re TTC. Some people also get pain as the blood tries to escape, but I didn’t. After three months of this, knew something was wrong and didn’t want to wait for NHS referrals etc as wanted to TTC again so I went to see Mr Lower - one of the few experts in the U.K. on Ashermans.

I saw him middle of the month (when your lining is meant to be thicker) and he could see it didn’t have the trilaminar (triple layer) structure, it was patchy and not thick enough. He diagnosed me there and then with it. Booked me in for a hysteroscopy under general anaesthetic for the middle of the next month (that’s when he likes to do it), and put me on high dose estrogen. I had the operation, then had a copper coil and high dose estrogen / progesterone to stop the scarring re-forming. I had a re-scan after he had taken the coil out, he felt it had been successful - back to the triple layer structure and I was lucky enough to get pregnant the next month. I’m awaiting a scan with him on Monday to know if the pregnancy is viable.

Physical side effects for me have been fine, I would never “know” I have Ashermans in terms of pain or anything, but finding out you have it and you are infertile until treated (as the egg can’t plant in the lining) is tough. Mentally it’s been a long journey and I have had to stay patient, but I’m glad that I found out three months after my D&C and had the means to be treated quickly. You’re never cured of Ashermans and the scarring could return. There’s also a higher chance of pregnancy complications like pre term birth. Financially, it can be expensive. I think the treatment with Lower is probably £6k/£8k all in including the hospital fees. I was lucky enough to have my BUPA cover most of it and I have paid £800.

If you think you have it, the first step is being diagnosed. If you have been diagnosed then it’s about getting it treated by an expert asap. Mr Lower does several operations on this a week with a very high success rate from first op. Some NHS gynaecologists never even see it!

There is a very useful Facebook group which would give you more info: https://facebook.com/groups/ashermanssyndromesupportuk/

as well as this question list; https://www.ashermans.org/information/what-to-ask-your-doctor/

CrazyDiamond30 · 14/07/2023 12:05

Thanks so much for your reply! I also had D&C last year. My periods were normal-ish for about 4 months I'd say, then they've gradually got worse. I'm wondering if that's maybe because tissue builds up over time? If that's whats happening - I don't entirely understand it. My cycles have changed and they're now about 40-45 days on average. Alot more pain too.

The worst thing about it for me is the PMS when I'm normally due on my period is really bad, but because I don't actually come on for so long, it gets so much worse and I struggle to cope.

The bleeding is also different but it's definitely a period.

I've been to the drs multiple times but not mentioned asherman specifically. I'll have to call them back and get the ball rolling to see what's what!

OP posts:
Hopefulhoney6 · 14/07/2023 13:06

Hi - really sorry you had a D&C too.

Tbh from what you have described, it doesn’t sound like Ashermans Syndrome. Ashermans doesn’t affect your hormones in any way, but from what you have described - longer cycles, still bleeding, bad PMS it sounds like your hormones might be out of balance.

With Ashermans most people’s cycle length doesn’t change and there is no / little bleeding when a period is due - that is the key. You have a normal cycle hormonally but the scarring means you can’t build up a lining or if a cervix is scarred, the blood can’t escape.

It’s obviously been over 6 months since your D&C so I would push again to see the doctor and get referred to a gynaecologist and get your bloods test - they can do an ultrasound, or maybe even a hysteroscopy to see what is happening inside. But (with no medical training) I don’t think this sounds like Ashermans from mine and other people I know’s experience. Good luck.

CrazyDiamond30 · 29/08/2023 19:03

I'm wondering if my symptoms are just because I'm due on for so (so so so) long. I'm currently on day 47 of my cycle - 19 days late.

OP posts:
FrankieSpencer · 16/10/2023 12:46

Hi, not sure how you got on, but I was diagnosed with Asherman’s in April this year following a D&C for an MMC in October 2022 and still very much going through treatment.
If you still have any questions, feel free to ask!

CrazyDiamond30 · 16/10/2023 16:01

Hi! Thanks for your reply. What were your symptoms? I appreciate someone has said that my symptoms don't sound like it's this, but wondering if it's more just because I aren't having regular periods. Thank you!

OP posts:
FrankieSpencer · 16/10/2023 20:10

The only symptom I had was very light periods, they went from 5 days moderate to 2/3 days spotting - just brown, not enough to fill a pad per day (sorry tmi!).
Ashermans normally presents as light periods straight away but they can get lighter and lighter over time. I’ve had one hysteroscopy where my scarring was treated and a chemical pregnancy since then, but my periods aren’t much heavier since and I have noticed they’re getting longer in between (from 28 days on the dot to 30-34 days now).
I’d say if your periods aren’t getting lighter then it’s more likely a hormonal issue - certainly not an expert though :)

CrazyDiamond30 · 13/02/2024 20:28

Jumping back onto this as I've finally had an appointment for an hysteroscopy and I'm unsure wether I should go, mainly just because I've got to go quite a fair way and arrange time off work etc when I'm not sure if there's anything 'wrong'

My periods are roughly every 6-7 weeks now. They're much lighter and much more painful. I experience terrible PMS symptoms and also more recently noticible migraines.

Does this sound normal?

Also what are hysteroscopys like, are they very painful?

OP posts:
Lmcx · 19/02/2024 13:40

Hello,

I know this an older thread but I’m just wondering if someone may be able to offer help.

I suspect ashermans, consultant does not. Long and short of it, I had RCOP for 11 weeks, medical intervention only.

very light periods ever since, went from 6 days to 3/4 days, I am now 8 months on. Went for a pelvic ultrasound, was told everything looks good. Asked what my lining was, was told 10mm (cd11).

after the apt I thought ok, maybe I can just put my lighter periods down to unexplained. But I spoke to someone who said she had a thick lining (9mm) and was still scarred!!

given my consultant reluctance to think it’s a possibility that I have scarring, I’m worried I’m now going to be told everything is fine.

is it possible to still have scarring at 10mm lining (that’s pretty normal according to google?)

I have no idea what to do or how to push for myself when my consultant calls ☹️

any advice would be appreciated xx

New posts on this thread. Refresh page