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No periods three months after d&c. Ashermans? Help

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Ames123 · 28/07/2013 22:28

Hi everyone, I've been going out of my mind the past few days with worry so just decided I would post here to try to get some advice off any women who have been through situation as me.
I had a d&c on 29th April due to our baby having cystic hygroma at 13 weeks and docs spraying there was only 12 % chance of survival for the bab.
I went back onto my pill 2 weeks after d&c but had no period in between packs (microgynon) and have since finished 2 packs and had no period at all, just browny reddy discharge (sorry!)
I went to my gp and she suggested to come off pill completely which I have done and still had no period and that was three weeks ago. I have had Blood test and my hormones are normal and pregnancy test is negative.
Gp has referred me for an ultra sound scan/testing but I am worried that there are severe scras or adhesions in my uterus form d&c and that it why the blood cannot escape, as I have been informed that this is a condition called ashermans syndrome where the blood cannot escape due to thick scarring and so is re absorbed back into Fallopian tubes and can ultimately leave you infertile.? After everything I've been through I just want to try again and I am absolutely terrified I have got this thing and I am going to be left infertile.
Does anyone have any similar expertise and would anyone say I should be panicking if not having bleed after the two packs of pill?
I am finding it so hard to sleep or get on with things with this hanging over me, and to make it worse i have had pains on and off for past week in pelvis area. Doctor has made referral as an urgent one.
Please help, Amy xx

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greenwichgirl40 · 26/11/2013 17:20

Hi Amy

So sorry about your pregnancy loss.

How are you in terms of your cycle now?

I have Asherman's syndrome and had my surgery today and so am feeling pretty up to speed on this whole thing.

Let me tell you what happened to me in case any of it helps you...

I had my ERPC on 16th August after a missed miscarriage at 9.5 weeks. I then waited and waited and no periods arrived. Nothing. Not a thing.

Having started to become alarmed like you, I made a private appointment at the London Women's Clinic (around £400) for further investigation.

I was told that there are only really 5 reasons why your periods will stop:

a) early menopause - tends to be genetic - I was tested though as am 40
b) a thyroid problem
c) raised prolactin levels (this is the hormone that is present during breastfeeding and generally stops ovulation
d) unexplained hormone deficiency
e) uterine damage

Various tests were carried out (results took 7 days) which ruled out a) b) and c) above. I was therefore left with d) and e) .Although I was then offered the opportunity to have months of hormone treatment to see if it kick-started it, I knew instinctively that it must be the ERPC that had caused it. My whole life I have had a regular 28 day cycle then suddenly everything stopped. It was so obvious to me, that I didn't want to waste the money (and more importantly the time given my age) on a course of hormonal treatment that would make no difference at all if the problem lay with my uterus which nothing can fix except surgery.

I therefore self-referred to Adrian Lower ( who is one of 2 Asherman's experts in the UK, 2 weeks ago. He carried out 3D scans and confirmed a week ago, that I have Asherman's. The hysteroscopy took place this morning at the Princess Grace hospital in Marylebone.

He told me afterwards that the damage was slightly worse than it appears on the 3D scan (the cavity had closed with the lining stuck together). However, he is confident he has manage to fix it all in one op (sometimes two are needed). I now have a coil fitted to ensure new adhesions don't form and have a heavy-duty 4 week stint of hormone therapy to try to help the endometrium build-up again. Finally there will be follow-up scans after that to see if it's all OK.

Amy - speed is of the essence here. Asherman's is under-diagnosed and delay is not your friend. You have to act quickly and get yourself in the right hands as soon as you can (Adrian Lower or Geoffrey Trew) so in a sense it is very positive that this is on your radar.

Sadly all of this comes at great financial (as well as emotional) cost. I have had to pay privately for the treatment as Mr Lower is deemed a fertility doctor under my private cover. All told, the cost will be around £5K but I am not prepared to allow the NHS to just sterilise me, without my permission. Asherman's is not on the consent form for surgery. I am a solicitor and am intending to take legal steps against the NHS to raise awareness on this issue - but that fight comes second to getting all of this behind me. It may be too late for me to have another baby but it's not fair for reckless practitioners to make that choice without giving us the opportunity to give our informed consent. I personally would have taken the miscarriage drugs instead if I'd know of the risks.

Sorry - this is such a long post but I have found other information from other mums so helpful so thought I would tell the long story.

I hope for your sake, this isn't a problem that you will end up having though

Let me know how you get on though and remember - don't wait! This is very treatable if diagnosed early.


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