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

Hi Shroomer your story sounds a lot like mine, I had retained products after birth, no periods for 6 months (stopped breastfeeding at 1 month) and was dismissed by GP. I did go private at that point and get a 10 course of progesterone which did bring on a my periods (but lost them again later after mc and ERPC). Its worth asking your GP for this, because any AS specialist will want to rule out hormonal causes first anyway. This shouldnt be too hard for your GP to prescribe without needing to refer you. (But referral is obviously much better)
I would recommend you start charting now (see www.fertilityfriend.com) so that you can work out where you are in your cycle, if you are ovulating and when you are supposed to be bleeding. If you are offered an ultrasound scan, go when you think you are having your period (are you getting period cramps once a month?) and ask them if they can see any liquid pooling in your uterus - this could be trapped blood that is not escaping)

There are only 2 specialists that are "A list" both in London, but there are more UK doctors on the "C list" which might be outside London. I can have a look for you or you can access this info yourself if you join the group
health.groups.yahoo.com/group/Ashermans/

I cant recommend enough how helpful that group is, its an invaluable source of info and support.

Let me know if you have any more questions and how you are getting on xxx

I had my scan today at 6 weeks 5 days and all is looking good! Heard the heartbeat (120) and bean is measuring right for dates. So happy!!

Hi Becky,

sorry to hear you have Ashermans, it is a very scary thing to go through. Have you signed up on the yahoo group yet? If you havent yet, please do so ASAP. The information on there is very very valuable and there is fantastic support too.
health.groups.yahoo.com/group/Ashermans/
(There is a UK sub group too, but you will find more documents on the main group)

The best thing they do is keep lists of doctors who have successfully treated AS, which include NHS doctors too. Dr Anthony Trew who works out of Hammersmith is on the "A list" and there are a couple of others on the "C list" IT IS REALLY IMPORTANT THAT THE PERSON DOING YOUR SURGERY HAS LOTS OF EXPERIENCE WITH ASHERMANS CASES. As many women on the yahoo board will tell you, if your first surgery is not done correctly there is much more chance of your scarring getting worse not better. Lots of British women have pushed to get treated by Dr Trew and went on to have babies afterwards. You are entitled to ask for a referral to someone with experience in this area, you do not have to accept having your surgery done by any old gynecologist.

You need to find a doctor that has done at least one AS surgery a month during the last year, and who can show that the women they treated went on to have successful pregnancies afterwards. They must only use micro scissors for cutting, no lasers, and you need a 6 week course of estrogen (6mg) afterwards - NOT the pill as this thins the lining. A coil can be useful depending on where the scar tissue is, sometimes a stent balloon or spray gel is used instead. You also need to make sure they give you antibiotics via IV during the op or a five day course of antibiotics starting the day before surgery. If it doesnt sound like you will get this kind of care, then dont do the surgery!

There is a really good document called "Questions for your doctor" (on the yahoo group, files section) that can help you work through all the areas so that you can be sure your doctor is going to treat you in the right way. PLEASE DONT LET SOMEONE UNQUALIFIED DO YOUR SURGERY. That would really put your future fertility at risk.

I hope it gives you hope to know that I didnt have any periods at all either, and even though this classifies you as "severe" if the scar tissue is limited to your cervix area and preventing blood from escaping, this is one of the easiest places to remove scar tissue from. Provided that the surgeon knows what they are doing, you have a very good chance of getting this fixed and getting your fertility back.

Its really really worth making sure your first surgery is done right, that way it will be your ONLY surgery.

best wishes,

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

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!

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 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

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

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 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

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!

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