Ashermans Support Thread - for those seeking diagnosis, getting treatment or TTCing again after. All welcome.

[MummyAbroad]

Not sure how popular an Ashermans Support thread will really be as the first time I started reading about it I felt sick with fear and flipped the computer shut straight away!

I've since got a lot braver and much better informed, mainly by the lovely people on www.ashermans.org and Dr Adrian Lower

So now I've been diagnosed (finally) and am having an operation on 16th November. Anyone want to keep me company on my journey through treatment and hopefully TTC again afterwards?

Hello all,

I've only just seen this thread (having been on MN for 4 years!), had no idea it was here!

I just wanted to say that I acquired Ashermans six years ago after an erpc after a missed mc. Went on to have three further miscarriages, was seen by Adrian Lower, and had a hysteroscopy. Had a very thin endometrium measurement (c.4mm even at ovulation), flat endo scarring (patchy lining), and adhesions at the base of the uterus. I was told after the hysteroscopy that there was basically nothing more that could be done. I continued to have very short, light periods (and still do to this day) so was very, very despondent.

However, I went on to have two dc, so just wanted to say that there is absolutely hope for even cases which seem hopeless. Please don't give up.

I'm a member (though very inactive these days) of the AS yahoo group, and for those who might not know, a Facebook group has recently been set up which might be useful. The first is called ASHERMAN'S SYNDROME SUPPORT GROUP and is a private group only for members of this group. The second group is public and is called Asherman's Syndrome Awareness and Support.

Also worth mentioning (if it hasn't been already) that Dr Gallinat in Germany has a fantastic international reputation, and I believe the cost of travelling/staying there and seeing him is comparable with seeing Adrian Lower (who is very expensive!).

Only just refound this thread - have added to my watch list this time to try not to again.

Nothing really to add here though as such. Periods now fairly regular, around every 25/26 days and lasting about 1.5 days but pretty light througout. Def lighter and shorter than before I had DD, bt nothign like after I had had her, before my AS dx. And obviosuly no pregnancy, not that we are actively ttc, just not doing anything to prevent it.

Hi, sorry just wanted to add that I believe Dr Galliant retired recently, which is a real shame as mentioned above he has a fantastic reputation and was much cheaper to travel and be treated by him in Germany.

Hello (again to some of you) helenlouisey BialstockandBloom Hulababy !!

I always wondered if I really was the only one of MN with some experience of AS. Its nice (but sad) to know that there are more of us out there.

helenlouisey that is great information about how to get treated on the NHS. I think that should be in print somewhere on the yahoo UK site. Ever thought about asking someone to put it on there?

BialstockandBloom thats a great success story. I too have just conceived on a thin lining (5.5.mm) so thats great to know that it can be done. Did you have to have treatment again/have any problems after the birth of your first?

Missed happiness I wrote to you via the Yahoo support group. Hope you are OK xx

update from me: I had another bleed yesterday and so whizzed off for a scan. Heartbeat is a nice strong 157, still measuring exactly right for dates (7+3) so all is well. I also discovered that the bean is implanted in the fundus of the uterus. I had hoped that it would be elsewhere because that is where my dense scar tissue was. This could mean that the fundus is totally repaired and there was no permanent damage to the basal layer there, or it could be that the bean attached on a good patch right next to the danger zone. There is no way of telling.
I also learned that I have 2.6cm fibroid - not sure what to make of this yet, everything I have read seems to suggest that fibroids are pretty harmless and I havent had a chance to talk to my doctor yet.

Glad that the pg is progressing well right now. Good luck with it all :)

mummyabroad congratulations, that is great news!

I do suspect that if a post-ashermans pregnancy fails it usually fails very early on as the embryo fails to implant due to scarred/thin endometrium. All my subsequent miscarriages were very early (5/6 weeks) and we never saw a heartbeat with any of them. This is just my own theory really, though my consultant (when pg with ds) did agree that it made sense.

The fact that you have a strong heartbeat at just 7 weeks is fantastic!!! Will keep everything crossed for you for a smooth pregnancy.

No I never had any other treatment other than the original hysteroscopy before the birth of ds. After he was born my periods continued to be very short and light, but I conceived dd with no problems and had a totally straightforward pregnancy.

Sad to hear that Dr Gallinat has retired!

Oh and btw I have several (smallish) fibroids too. I don't think these are much to worry about - they might sometimes cause problems with conceiving (which obviously doesn't apply to you), or if very big can cause problems during pg, but again, this wouldn't apply to you as yours is really quite small.

Thanks BilaystockandBloom thats really good to hear that you didnt have any problems in childbirth after you first DC and could have another without treatment. I am not planning on having more than 2DC myself, but am still worried that I might end up with AS that needs treating after childbirth.

Thanks for the fibroid info too, I am not worried really (in comparison to everything else I have dealt with it does seem less scary!)

I will still be holding my breath for later scans though. I believe my mmc was caused by AS which I got from a D&C after the birth of my first (retained placenta) It was detected at 14 weeks at which point the baby measured 9 and half weeks. It was explained to me that because a lot of time had passed until it was detected the embryo can shrink so there is no way of knowing how old it was when the heart stopped beating, but some time after 9 and half weeks. I think I am only really going to start relaxing about this pregnancy once I have made it passed 14 weeks. 7 more to go!!

10weeks+4days

Good scan news from me dates and heartbeat are both spot on what they should be placenta seems to be well attached but its in the dodgey spot so there is still the risk of accreta (to be monitored) but I've bascially been told that there is very very very little chance of an mc now. Its fantastic news, but also fantastically hard to really believe. Makes me realise how good I have been at preparing for bad news and dealing with it - hopefully the news will sink in and I will start to believe I am really having a baby

No mention of the fibroid this time, so I guess that it is pretty insignificant.

Best wishes to anyone battling AS - the battle can be won!!

Hi All,
I have just reg on this website today as i really need to talk!
I was diagnosed with AS in jan after ttc for 6 months. I had my operation in Jan and was told by Mr Trew that it is all clear and I am good to go! He told me my case was moderate and I had no need for hormone replacement only the coil was fitted for 4 weeks.
He also said my endo lining was very good and thr only negative was my age .... I have just turned 39!
He could not really say where the AS came from but most likely a C -section from my second child.
I know I am very lucky to have 2 children....a girl and a boy and I know a lot of you girls are ttc your first but I am so desperate to have another baby it terrifies me the thought of the AS coming back. Mr Trew said " You had AS and now it is gone"! He is one of the best in the country and my husband says we need to trust him and not self diagnose!
Granted we have only been really trying since end of Feb but because I have read so much on this condition I am so scared the scaring will come back.
I also developed Post partium thyroiditis after my first and will have this condition always so am feeling a bit sorry for myself due to all these post pregnancy conditions!
Mr Trew could not really ID the cause of the As but could also be due to pregnancy loss at 22 weeks or C-Section although I went on to have 2 successful pregnancies so not sure but think C-Section!
I am sorry to go on and on but I have been to see Mr Trew on countless times and guess am so worried. He would have advised me to have a second check if he thought necessary ....right?? He seemed so happy with the outcome the main topic of conversation was not the AS but my egg reserve. It is fine for my age but still low so am I causing myself unnecessary anxiety ??
Any advice would be great!

x

Hi maryman I can totally understand all the anxiety and worry. I worried my way all through treatment, and many times convinced myself it hadnt worked and would all go wrong again - but now I am 13+2, baby is measuring great for dates has a strong heartbeat and nuchal results were all good!!

I also got lots of "dont worry you are fine" from Dr Lower - he didnt recommend any follow up checks after treatment - just straight to TTC- and this made me so nervous. I think after all the mc trauma, infertility, bad news etc I just got to a place in my head where I thought it was better to assume the worst first, until proven otherwise, and I just couldnt trust him when he said "its all fine". I am still a bit like that with this pregnancy, but the more good news I get, the easier its getting to start believing again that good things can and will happen to me.

So, I guess I am saying that perhaps you should try and trust your doctor (I know a lot about Dr Trew's reputation from the International Ashermans Support group, and I wouldnt say that about just any doctor) He knows a lot about AS, so if he says you are alright scar-wise, you really do have very good reason to believe him.

best of luck with TTC, hope to hear good news from you soon,

xxx

Hi MummyAbroad,
Thank you so much for replying and big congratulations on your pregnancy. From what I have read you seem to be doing very well?
I now feel at ease and think that is the way forward. I guess having just gotten AF I was very down and considering all my friends are trying for a third I feel I will be the one that will try the hardest!
This I know is classic feeling sorry for myself but I am so angry I have this condition.....one that could be prevented but nobody seems to have a clue it even exists!
Anyway.......as you say good things can and will happen so I will keep you updated as to how things go.
Thanks again and good luck with your pregnancy and keep updating!

XX

Hi, I am new to this thread and just looking for some advice if anyone has the time to post. I had a normal delivery of my DS 17 mths ago, and an ERPC for a missed miscarriage at 9 weeks in February this year (twins, had died at 6 weeks).

Since then I have had 3 periods, but they have been much lighter than the periods I used to have years ago before going on the pill. The last 2 have started with a couple days brown-ish discharge and then red bleeding for another 3-4 days or so. To some people this would be like their normal period but it is much lighter for me. I saw the GP yesterday as I had had 2 days of brown discharge and cramps and had convinced myself I was not going to have a period, so he prescribed progesterone tablets for 10 days to as a "test" to see if it would give me a period, but I haven't taken them as I started light vaginal bleeding a few hours after seeing the GP. I can see how they would help test for Ashermans syndrome in someone having no periods, as it would indicate there could be a blockage to flow, but not sure how they would help me. I am considering waiting another cycle and it still low flow going to see Dr Lower to ask for an ultrasound to look for Asherman's syndrome. Or maybe I am worrying unecessarily as it seems a lot of posters with Asherman's have had no periods at all, rather than very light flow. (Also positive ovulation tests mid cycle). I just wondered what people think about progesterone tablets to help test (but not give diagnosis) for Ashermans and if their periods were light rather than absent?

thank you

Hi Sky44,

Sorry to hear about your mmc and subsequent problems.
I talk regularly on a yahoo group health.groups.yahoo.com/group/Ashermans/ which has over 1000 members, all of whom have or have had Ashermans. Many many of the ladies on that group had periods and had Ashermans. This would happen if you have scar tissue in the uterus but it does not completely block the exit near the cervix or cover the whole uterus. Your periods would be lighter, and you are right, doing the "progesterone challenge" would not be useful. Taking the progesterone helps rule out hormonal causes of amenorrhea (no periods) but if you are bleeding anyway then it doesnt make sense to artificially bring on a bleed.

I myself experience both situations - AS with and without periods. First I had an ERPC for retained placenta after my son was born. My periods got lighter, but were still regular. Then I had a mmc, another ERPC and then lost my periods altogether. After surgery, Dr Lower told me my cervix had been completely scarred closed but the scar tissue was easy to remove (because it was only a few months old) but the scar tissue in my uterus was harder to remove because it had become dense and calcified (it was 2 years old)

A good way to get diagnosed would be via HSG or sHG. Can you ask your GP about an HSG? This is where they insert contrast dye into your uterus and then take x-ray pictures. The dye sticks to scar tissue and blockages can be seen where the dye cant get past.

Do come over to the group and ask some more questions, it was founded 10 years ago and has a lot of documents/files that you will find helpful to read.

best wishes

Hope you ladies dont mind me joining in the chat, wouldnt mind getting some advice. heres my history:

2003 - had a termination (D&C) as fell pregnant 1 month after meeting my now husband we were both very young and i was in uni, we deeply regret this now

2008 - got married

2010 - started trying for a baby, fell pregnant after 1 month, went on to have a missed miscarrage at 7 weeks discovered at 12 weeks scan, miscarrage would not happen natually so opted for a D&C, recovery went smoothly period returned after 4 weeks as normal.

2001 feb - found out we were expecting again. had some brown spotting at 7 weeks, went for scan, found out another missed miscarrage at 7.5 weeks of identical twins, wanted to have medical manageent but was advised against this by consultant so went on to have another D&C. she then done RMC testing on both myself and hubby and fetus. All came back normal. fetus tested 2 normal males.
Only problem is this time it has been 9 weeks and still no period. i have some brown spotting 6 weeks post D&C all the signs my period was coming but nothing. my consultant said to wait another 3 months and if nothing happens she will investigate futher but i think this is too long? i have been reading alot about this Dr Lower, Do you think i should wait? any advice would be greatly appreciated.

Thank you

Hi. I was on here back in March, when I suspected I might have AS. I had a hysterosalpingogram yesterday (where they insert dye up cervix then take x-rays). As I suspected they couldn't get the dye up my cervix - it was blocked. So AS looks increasingly likely. I now have to wait and see what my local NHS consultant suggests next, but I think it will be a hysteroscopy. I'm 40, so I don't have time to play with in terms of TTC; but I already have one child - so I doubt I could get referred to Mr Trew on the NHS. Which seems to leave me in the hands of a surgeon who may not have treated someone with AS before. I'm guessing an operative hysteroscopy would be too expensive for me - >£3000?

Okay - first things first - it feels very strange being a member of Mumsnet, because I'm not a mum. Although I'd very much like to be, and that's what has brought me to the website.
To explain, I strongly suspect I have Asherman's but I have been too scared to Google it - until today. Tomorrow morning I have an appointment for a hysteroscopy. After months and months of avoiding looking it up on the web, tonight I have come home from work feeling tearful, poured myself glass of wine (on a Tuesday night!) and opened the laptop. Hence my registration on Mumsnet and this post today.
So here is my background: I am 34 and fell pregnant for the first time in October last year, sadly miscarrying at 6 weeks. This completed naturally and within two months I found out I was pregnant again. But at 10 weeks I began to bleed and it turned out I had a missed miscarriage - the embryo had stopped developing at six weeks. I tried to let the miscarriage complete naturally but three weeks later a scan showed some retained tissue. So I had no choice but to have an ERPC (this was 3 March 2011). 12 weeks later, my period had not returned. I knew about Asherman's so I mentioned my concerns to my GP but she was very dismissive. I went back two weeks later and she agreed to refer me to a gynaecologist. A scan showed all was well except for my womb lining, which was very little (3mm springs to mind - although I could be wrong) so I was referred for a hysteroscopy - which is the appointment I have tomorrow morning. I am scared stiff. I should mention that, although I don't consider my periods to have returned, I have had spotting and horrendous cramps (like I've never experienced before) over my last two 'cycles'. I don't particularly expect anyone to reply to this message - I am just getting my feelings off my chest and am finding that writing this is quite therapeutic. My husband is lovely in many ways but he doesn't have the first idea what I'm going through and there's not really anyone else I can talk to. Thank you for reading this x

sorry for not replying to anyone recently. This dropped off my most recent list and I forgot to check it. How are you all doing? Anyone still around?

xxx

forgot to say, I am 29 weeks pregnant now and all going well

Thank you everyone for all the input on here - I am scared stiff of being diagnosed at the moment after a hellish few months/years.

I got pg last Feb and had a mmc at 10 weeks - I found it devastating. I had a D&C as that is the only mc management here in Greece. Got pg again pretty quickly, but had bleeding from the start... During the pregnancy I got my results back for blood clotting disorders as part of mc screening. My gynae looked at the results and said they were fine, only when I saw another gynae (after I mc'ed again) it turns out I have a blood clotting disorder and need to be on heparin injections though pg.

I had another D&C (which my current gynae thinks was criminal, given my history) and then 2 weeks later after persistent bleeding and numerous phonecalls and consultations with the useless first gynae, I was diagnosed with a retained placenta and a third D&C was needed.

I discussed, at the time, the risk of Asherman with my dr (not the initial one, but one I should have gone to from the beginning) and she did admit that it is quite high, given the whole history, but that she would do her best, be careful and put me on hormone replacement to help the endometrium recover.

Well... the hrt finished last week... I have had period pains, but no period at all. Spoke to my dr who said we should wait another few days. I am scared stiff, very very worried and waiting to see if my period will ever come back. There are times during the day that I feel suicidal, yet your stories alone have given me hope! Thanks all, and especially mummyabroad for your time and input - you give hope and advice at a much needed time.

Hello everyone (Its MummyAbroad with a Halloween name change)

escapeartist I have just answered your PM, so sorry to hear about what you have been through.

Good to hear that you had hormone therapy after ERPC, sounds like you found a good doc there. What dose were you on and for how long?

I am 37 weeks now, and all is looking good. There were no obvious signs of placental problems at the last scan although it is a bit low, my doc wants to do a C-section though. Not for any AS related issue but just because they are a bit C-sec mad here in Costa Rica, she is using the "big baby" excuse, all is hanging on her weight estimates at the next scan on 26 oct. I am dead scared of a c-sec causing more scarring issues later on, but on the other hand I am so grateful to have got this far and just want a healthy baby at the end - whatever it takes!

Hope the days are treating you all kindly,

MA xxxx

Well, I have waited a very long time to post this...

My baby boy Max was born on 1.11.2011, weighing 7.2 llbs - all healthy and gorgeous and lovely!

During the C-section it was discovered that I did have placenta acreta (in the fundus, where my scar tissue was), but the doctor was able to deal with it pretty swiftly, no major blood loss, and I recovered really well afterwards.

I am so grateful and happy to have this gorgeous healthy baby with me finally, I hope anyone out there suffering with AS is encouraged to know that you can get a happy ending, good luck to everyone. xxxxx

What a nice ending!

I'm going to see Mr Lower next week. Following MMC, then a few months later by TMFR almost a year ago, we have failed to conceive. My periods have become irregular and light. Also have a lot of cramping from mid-cycle to period.

I'm really nervous about it the whole thing. Worry that even if we do conceive then there might be something wrong again.

Glad to see others have had positive outcomes though and Mr Lower seems to be a good person to investigate.xxx