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?

so I am not pregnant!

I got AF and it is disappointingly light. Definitely less than pre AS, but at least it is something. I am trying not to panic that scar tissue is growing back, but the worry is there.

In my desperation to find a bright side I am focusing on the fact that at least I am saving money on tampons!

How did you get on with the GP Margaret?

Hi Margaret

Thanks for saying that, I too am trying to convince myself that everything is OK, but its so hard for the doubts not to creep in. I guess it could be that there is less lining in there than there used to be before, so therefore less blood and hopefully it might build back up, now that the scar tissue has been removed, but equally diminishing periods (that get less each month) is a sign that scar tissue has returned.. so I will always be a bit anxious about exactly how much blood comes out each month..gah!!!

I dont much like the sound of your GP! If YOU feel that an early scan will help give you peace of mind then I would push for it or go private (about £70). Most of the ladies on MN who have one one mc manage to get an early scan, why wont she refer you? And what tosh, that it wont make a difference, of course it will! (Sorry to talk about possible negative outcome, but if you had an undetected mmc it could put your future fertility at even more risk (infection)

It is well known at recurrent miscarriage clinics that many studies have shown that just with extra doctor care (scans etc) womens chances of successful pregnancy improve. It might well be a placebo affect but its standard practice with recurrent mc because it does improve the numbers. Can you bypass the GP and go straight to an EPU. Can you get seen by a midwife? (they can refer you for scans)

and now for some positive stories for you:
There is a fantastic message on the yahoo board today (Thurs, 2nd Feb) about a lady who had untreated AS and had 2 successful pregnancies. The title is "Ashermans Group Member" and her initials are K.P. You should read it, its v. positive

take care

xxx

Good point! (about getting BFP with not much period)

I have just started doing counselling (the stress of this is all too much) and realised how negative about everything I tend to be (result of too much bad news in too short a space of time, I have just come to expect it now!) I am going to make a bigger effort to think postively.

Please dont worry about bleating on, I dont mind at all. I totally agree with you about the anxiety not being good for you or the bean, I would push for that scan/self refer asap so that you can get a bit of piece of mind.

By the way, there is a thread full of ladies who just got BFP's after mc here. They have been with me on a TTC thread for a long time and are all very lovely. Do come back and let me know how you get on though xxxx

Great news that all is well!! I take it you got a scan? Please feel free to stick around if you want to, you are not a fraud by any means. So pleased that this pregnancy is going well xxx

hello Everyone - thanks mummyabroad for telling me about this thread.

I have come here because I have been ttc for a year after a mmc last feb. I think I have ashermans or similar, but no dr has confirmed this. Can I get myself referred to Dr Lower (I have Bupa insurance through work) even if I haven't got diagnosed yet? Would he do all the diagnosis work?

I have had all other tests etc already, and they have come back clear. I have also had various scans of my uterus and womb lining and they have all come back ok too. I have been thinking I have ashermans though because I have really light periods (new to me) that last only a day or 2, even if I've taken progesterone. I also have cramping, although this isn't agonising.

Thanks everyone. I went to bed very depressed yesterday after reading about this, mostly pissed off that I had my mc a year ago and no one has thought about this as a possibility.

I should say, when I had one of my scans they did spot the 3 lines. Does that mean I could still have AS? or does it rule it out?

Sorry for all the questions!

Hi Beatie

You can certainly just self refer and make an appointment with Dr Lower, I did. The first time I did a telephone appointment after sending him a brief summary of my history on email. He pretty much told me that I had AS over the phone based on this (I had a lot of big clues, no periods at all,failed the provera challeng twice and had a failed sHG)
When I went to see him for the first appointment he did a 3D ultrasound scan and could see scar tissue that way (be warned though, Dr Lower is one of the few doctors in the world who can do this, ordinary gynecologists can NOT see scar tissue on a 3D scan) I am pretty sure that in your case doctors will recommend either an sHG (in office procedure) or an HSG (done in hospital) to assess what your uterus looks like in a 3D state.

You said on the other thread that your mid cycle lining was over 9mm, this is very good as is having a trilaminar pattern, especially if you think your AS was caused over a year aog. I read that over time the body "knows" it is not expelling so much blood so produces a thinner and thinner lining. Having the 3 lines and thick lining certainly doesnt rule out AS (only a clear sHG/HSG/Hysteroscopy will do this) so I would get checked out so as to not have this hanging over your head. Dr Lower does take BUPA patients, so what have you got to lose? [email protected]

If you do get diagnosed with AS, please remember that it is a treatable condition. Personally I feel a lot better with my diagnosis and treatment plan than I ever did in the 7 months I spent post mc not knowing what was wrong.

Ask as many questions as you like, I dont mind!

Thanks mummyabroad I sent a long email to the link on Dr Lower's website and am waiting to hear from him/them.

I see my other consultant (private too, but I've been paying for her/the tests) on monday so will discuss with her, but I spoke to the nurse there this morning and she said they will refer on to Dr L and also will share all scans etc. She said it didn't sound like AS, but I'm aware that she's not an expert, and also there is no explanation for the light periods. I don't live in London, but it's easy to get to, and I work there, so I will fit in an appointment pretty easily.

it's frustrating because I had my mc a year ago, and time is ticking on..(i'm 40 now eek!). but it would be good to get some answers.

Sorry this is all about me. have you got the all clear to ttc now?

Hi Beattie You are doing the right thing taking matters into your own hands and getting investigated. The good news is that Dr Lower is very quick, if there is a problem and you need surgery there is no waiting about. I got seen and treated straight away (although surgery is usually done early in your cycle so you have to factor that in) His office number is 2074862440 if you want to make an appointment, as for his PA Gill, and explain you are a new patient.

Be really cautious about advice from your other consultant (unless they are on the AS lists!) I have met a lot that were really nice and helpful but really dont know how to treat AS at all. Can you get signed up to the yahoo group and read some of the files before your visit? There is an excellent one called "Questions for your Doctor"

I got the all clear for TTC from Dr Lower right after surgery - he said that once I finished the HRT and coil follow up (which was 6 weeks) I could start. I felt a bit nervous about this though so I contacted Dr March in the USA and he has a stricter criteria (and extreemly good results) he recommened clear HSG (which I have since done and he has OK'd) and scan to show good lining. I am actually getting that done today - it should be at least 7mm and trilaminar. Lots of ladies have concieved with less and been OK, but I will feel so much better if I am OK by Dr March's standards as he is considered once of the very best.

Wish me luck xx

Bugger. Had my scan and the endometrium is only 5.5mm, the pattern was "almost trilaminar" Have written to Dr March to see what he says but its Friday afternoon in this part of the world, so I probably wont hear anything till Monday. Bugger bugger bugger.

Hi Margaret Yes, I have sent stuff of for Dr March's review, hopefully he can advice what the next step is, if this really is something to worry about or not. If needs be I will pay to do a phone consultation with him and go from there. I would love to go and get seen by him (he is in Los Angeles) but having just spent a small fortune on Dr Lower it would be totally crippling financially. I think its a case of cross that bridge when if/when I come to it.

I am still TTC in the meantime ( )At least its taking my mind off things

hi everyone!

I got an email back from Dr Lower who said that he thinks it is unlikely that I have asherman's with an endometrium of 9mm, but that I can phone him if I want. My other consultant also thought it very unlikely that I have this, and she did another couple of tests on me yesterday (thyroid etc) which could explain lack of bleeding, so I'll wait for those results first before thinking about what to do with Dr Lower.

Still no explanation on why my periods are so light though!

Hi Beattie Well that seems like really good news. If you want to get another expert AS opinion you could try sending the same email to Dr March in California ([email protected]) he has treated thousands of AS patients so certainly knows his stuff.

Its good that your consultant is testing you for everything, there must be a good reason why periods would suddenly become so light (and you have cramping) Hope you gets some answers soon. xxx

Bugger bugger bugger.

I heard back from Dr March and he is recommending I have a diagnostic hysteroscopy

Reasons why I dont want to have a diagnostic hysteroscopy:

1. I dont know who I would trust to do it in Costa Rica, flying to London/USA would be ludicrously expensive.

1. It will be done while awake and someone will tell me "its not painful, just uncomfortable" and they will be lying.

1. I will be incredibly anxious about the results and possibly have a full blown meltdown if they find scar tissue still present.

1. If I do get pregnant again in the future I will be at greater risk of developing incompetent cervix because of having done this procedure a few times.

So, I am currently 10DPO with a near perfect chart and absolutely excellent SWI timing this month, and praying for a BFP so that this problem just disappears!!

Hi margie thanks for talking me through it. You are right, each of those problems is actually surmountable, I just was getting all miserable because I really didnt feel like doing any more problem solving. I just wanted it to be over.... and in a way it might well be...

I am getting very feint lines on cheapie internet tests. I would love to do a big song and dance and announce it as a proper BFP, but I am only 12 PDO, AF not due for a couple more days so its still very early and might not be sticky. Thanks for crossing those fingers for me, it might well just have done the trick!

MargaretIsland You are now! I have had blood HCG done twice, and all is looking good

Had a gush of blood on 13DPO which was a big scary, but not bled since.

hope you are well. xxxx