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?

Dilema10,

Oh I am so sorry, I did misunderstand initially, I cant imagine what it must have been like to lose so many babies

As pebbles pointed out it looks like you have more than one issue to work through, have you thought about getting some counselling? When I was pregnant with DS my relationship with DP was in a mess and I was worried about ending up a single mum and unsure if I even wanted to be a parent. I did 4 weeks of intensive counselling (twice a week) and it really helped me get clear answers to my questions. I think counselling is particularly useful when you go in with a list of questions you need to resolve, (which you already have), and just work through them with a professional until you feel confident that you now know what you want.

The Miscarriage Association offers counselling, you can ring them or contact them through their website.

I also agree with pebbles that its worth starting your investigations by getting the AS problem sorted first, as this can have health implications as well as fertility problems.

pebbles good luck at the doctors dont forget to tell them you are in agony hope they refer you to the gynecologist straight away!

Hi. Thanks for your helpful replies. Yes, I think some counselling would help me. I will contact the Miscarriage Association you mentioned. It's just such a big committment, but nobody I know seems 'unhappy' that they had one! Even my Mum tells me not to bother having one! I suppose I just don't want to miss out on that experience, as I'm sure it's like nothing else you will ever know. Thanks again. xxx

Dilema

I am definitely in the "happy I had one" camp too :-)

Do let us know how you get on. xxx

I've just been diagnosed with ashermans, it was caused by treatment for late miscarriage. The doctor told me that the scarring is confined to one small area of uterus and is mild. He said that he will perform a hysteroscopy with division of adhesions, and I will not need hormone therapy or a coil.

I need to schedule this and I have 2 choices of dates, one is cd4 I normally only bleed for 2-3 days at most the other is cd 14. Am I mad to schedule earlier day as I want to ttc asap. And how long will after procedure will we be able to resume ttc? TIA

Hi ItsallKickingOff,

sorry that you have been diagnosed with AS, I found it all so very scary when I first found out about it all. I can totally understand your rush to TTC too.

However, if you want my advice, I would NOT rush into the surgery. It REALLY is worth while taking your time to get more info first.

Have you joined the yahoo group via www.ashermans.org? If not, please do so asap. It is not any ordinary website group, there are hundreds of ladies on there sharing info about diagnosis, treatments and doctors who specialise in AS. It really is invaluable information.

I have read hundreds of AS stories on that site now and looked through their archive of files and it seems that the vast majority of women who need more than one surgery or have unsuccessful results do so because they did not have their AS correctly treated the first time around (i.e. not by an expert, or by someone not following protocol) If if is not done right, you can end up in a worse situation than your are in now.

Having a coil or stent fitted and a 6 week course of HRT is standard practice by AS specialists (there is a file in the archive section comparing how different AS doctors treat patients - nearly ALL A list doctors follow this protocol) Most AS doctors will let you TTC after a repeat HSG or sHG shows no scar tissue (normally done six weeks after the op)

Where abouts is the scar tissue in your uterus? If it is in the upper part, HRT is normally given. Only if it is confined to the cervix, they may say it is unnecessary (likewise the use of a coil). I had my cervix scarred shut and a 1cm area of scar tissue in the upper part and was given HRT and coil. There are no studies that have been done that "prove" that the use of HRT is effective, but if you look at the results of different surgeons the ones who give HRT have the best outcomes for women. If I were you I would insist on getting it. The two most important questions for you to ask the person doing the surgery are: how many times in the last year have you done this type of surgery (should be doing at least one a month) and of those women how many went on to have pregnancies and live take home babies? - these results should speak for themselves - look at some of the AS specialist results in the archives of the yahoo group if you want to see some encouraging stories)

By the way, how does your doctor "know" if it is a mild case or not? Hysteroscopy or a laparoscopy is the only way to see the extent of AH (an HSG or sHG can show scar tissue but not accurately show how much) You would normally expect to find out how bad the scar tissue is AFTER the hysteroscopy.

You should also have the hysteroscopy done under ultra sound guidance - was this mentioned? This is VERY important as otherwise your surgeon could just create more scar tissue if they are performing "blind"

Sorry about writing a book I just feel really passionate about passing on the information that has helped me so much. If I hadnt discovered the yahoo group I would have been ingnorant of all this stuff and wouldnt be were I am now. I know you want to TTC asap, but please take a bit of time to make sure you are getting the correct kind of care.

take care and let me know how you get on,

xxxx

Hi all,
I read this thread with interest.
I thought I had Asherman's after a mmc and
two ERPCs (first was incomplete). I did not get my periods back after either ERPC.
I ended up having a complete cervical stenosis, but no AS and had two full-term pregnancies after it was removed. Just to share my story. The best of luck!

Hi glimmer,

Thanks for sharing your story, its nice to hear such a brilliant outcome - two!

I have never heard of cervical stenosis - just googled it. Its sounds very much like another name for AS that is regionalised to the cervix area? Or is it really something different? I read a really interesting article on the yahoo group about different type of scar tissue and different names for AS. It does seem to be an umbrella term, and there are certainly varying degrees of the condition.

My doctor told me that the cervix is the easiest area to remove scar tissue from. I also had my cervix completely scarred shut (no periods, and impossible to perform an sHG) but also a 1cm patch of scar tissue in the upper part of the uterus, so I am still a bit worried about possible regrowth.

I have finished HRT now and have an appointment to get my coil removed on Wednesday. I am really nervous as it is with a new gynecologist (again!) but also getting exited that I can TTC again very soon!

Anyone else out there with success stories??

update from me:

I got my period/withdrawal bleed today and it is not as heavy as the last one. Spirits have fallen as dramatically as the hormones.

I just had my coil taken out! spirits back up!

...and down again!

Having failed to hear back from Dr Lower in London about whether its safe to TTC, I have written to Dr March in the USA who is recommending I have an HSG first.

So TTC is on hold again and I am getting scanned tomorrow and then in for an HSG the day after.

Hi there pebbles!

Nice to have some company (was getting bored of talking to myself) but I am very sorry its because you are worried you have AS.

I am really glad you are getting checked out, I do know exactly how you feel though about desperately wishing for it all not to be true. At least you will be able to trust the diagnosis 100% this way, Doctor Lower has a vast amount of experience in looking at scar tissue so he will know it if he sees it. If there is any, dont forget to ask "how easy is it to treat?" In fact, before you go to your appointment, have a look in the FILES section of the yahoo group and find one called "Asherman's Syndrome Questions.doc" in the "Getting Started" section. There are about a million questions on it, but if you read it and highlight some that are relevant to you its a good way to get prepared and make the most of your appointment. Good luck xxxx

I have had my HSG done. The local doctors here said it looked clear - and Doctor Lower has said I can go ahead an TTC (without HSG) so I have started already , but I am still sending my HSG results off for a second opinion anyway (I am so used to being worried and paranoid, its just second nature now!) I feel good that I did the HSG, hopefully if there was any scar tissue reforming it has been jet washed away and my uterus will be all squeaky clean ready for the egg and swimmers!

Please let me know how you get on

xxx

yes I am charting, and checking CM and checking cervix and using OPK's. After all this time, I am not nearly relaxed enough to "see what happens",its more Mission Impossible style all out dedication.

Having said that, I have a cold at the moment though, so temps are up the spout... doh!

I am getting another scan on Thurs to check the lining, should get some good info about how follicles are doing too, so that will help

When is your scan? xxx

will be thinking of you (and logging in frequently to see how you got on)

I really hope if there is anything there, its tiny and very treatable. xxx

GOOD LUCK!!!

how did it go threelittlepebbles? Feel free to PM me if you want.

I had my scan done, I am disappointed because my lining is only 6mm (8-13 is "normal") and is not trilaminar (showing triple stripe, indicating it is consistently thick) I was all confident that I would be getting the all clear from the other doctor with my HSG results, but now not so much. Will have to wait a few more days until I hear back.

Back to worrying and waiting!

OH MY GOD!!!!! I AM IN FLOODS OF TEARS (OF JOY!)

Dear MummyAbroad
Your HSG demonstrates a normal uterine cavity. Next step is an ultrasound of you uterine lining at midcycle to assess endometrial growth and development. The lining should be more than 7 mm thick and have a trilaminar pattern. In order to verify that the timing is correct, the ultrasonographer should see a preovulatory follicle on one of your ovaries. Some of the above is ?technical stuff? but the ultrasound folk will know what all that means.

Charles March MD

"Techincal stuff"! isnt he sweet!

Hello marge

Oh wow! what big news! Congratulations! Try not to panic too much about the scar tissue, now that you know its there you can look for the right care. Lots of women on the AS board have made it through with untreated AS. The fact that your lining was quite thick and that you did get pregnant seems to suggest that your case is not severe. When the uterus fills with amniotic fluid, scar tissue will be visible on a scan (its a bit like a natural HSG/sHG) so you should be able to get a clear idea of what the situation is. You can even see if the embryo/placenta has implanted near scar tissue or on a patch of healthy endometrium.

Bleeding in pregnancy is quite common with untreated AS and it doesnt always affect the outcome, so be prepared and try not to get scared.

If you get scanned anywhere try and get the images burned on CD so that you can send the images off to Dr Lower/Dr March.

Print off some of those files from the yahoo group and take them to your GP to educate them a bit. The biggest risk you face is at delivery when you might have problems with retained placenta. Scans nearer the time will give more info, but you may be better off having a cesarian than a natural birth.

As far as my results, I am just thrilled with the clear HSG. For me that means green light, but as you know, we have started TTC already. If there is nothing this month (I'm, 9 DPO) then I will get a midcycle scan next month. I know Dr March is always keen to see a healthy lining before giving the green light, but there are so many women on the AS board who had successful pregnancies with thin linings and other doctors who give the go ahead despite thin lining, that for me its not the most crucial thing. (Last month it was 6mm, so I was only 1mm off target anyway)

Hope you are feeling Ok. Let me know how you get on with the GP.

xxxxxxxxx