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

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.

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

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?

Hi Schroomer I hope you turn out to be a fraud (IUSWIM) it always the best outcome to find out you dont have AS Lots of hand holding on offer till then!

There is a doc on the AS site called HSG vs sHG that you might find useful. Its something I had to look closely at myself. The crux of the matter is this:

hysteroscopy is the only way to "see" scar tissue, so once the camera is in there you get a 100% accurate picture. However diagnositic hyst is a bit of a waste of theatre time and there is a risk of developing IC in later pregnancies if you repeatedly dilate the cervix, so most A list doctors want to do an operative hyst only and do the diagnosis part via sHG/HSG.

It means you end up in the unenviable position of knowing you have AS but not exactly how bad until AFTER you wake up from the GA and its all been taken care of.

sHG (saline solution squirted in uterus and 4D ultrasound scan pics taken) This is IMO "easier" (less painful/uncomfortable) and is done in the doctors office, not hospital. Its also better for detecting scar tissue (but this does very much depend on who is looking at the images) always ask for them to be recorded on CD so you can show it to an expert afterwards.

HSG (contrast dye which sticks to scar tissue is squirted in uterus and x ray pics taken) This has the advantage of showing if your fallopian tubes are open as well as the state of your uterine cavity. Its done in hospital by a radiographer and gynecologist. (again ask for the CD)

Dr Lower also diagnoses via 4D ultrasound alone, he is the only doctor that does this, but as you can see from missedhappinesss post, it isnt always accurate.

If you have scar tissue blocking your cervix (as I did) then blood cant get out and liquid cant get in, so the sHG or HSG will "fail" and this itself will give you your AS diagnosis (though sometimes it is just called cervical stenosis (blocked cervix)

Doctors in the USA routinely do both sHG and HSG and then the operative hyst.

In conclusion, because you are having no periods at all, there is a chance that your cervix is blocked with scar tissue, in which case I wouldnt do a hysteroscopy because the doctor may just try to force their way through and make things worse. I would try a sonohysterogram (sHG) because its the least stressful/invasive/expensive and if the doc has trouble "getting in" then you need go no further. If it does work, then you could move straight to the operative hysteroscopy where they can do an HSG at the same time to check the state of your tubes.

I said early push for the HSG because I gather from reading on these boards that that is what the NHS usually offers first - but its well worth asking for the sHG. Maybe they do this all the time and I dont know about it? If you were thinking about going private sHG would be a lot cheaper.

Right, I think I have written too much now, hope I havent confused you!

Hi missedhappiness

Thank you

It sounds like you have already informed yourself a lot about Ashermans and you did absolutely the right thing asking them not to treat you in the diagnostic hysteroscopy. (Your doctor does sound lovely too, you are lucky that you saw someone who recognised AS)

There are many many women on the support groups website who will tell you that they had their first surgeries with someone who was "the best" but who hadnt treated AS before and ended up with worse scar tissue than before. Its really important that the person who does your surgery has seen many cases - ask them "how many have you treated in the the last year?" "did those women have successful pregnancies afterwards?" Also check that they are following certain protocols (NO lasers, use estrogen therapy afterwards, use a stent/coil to separate the walls of uterus afterwards etc) You can read about these protocols in detail in the files section of the group. Using these methods + being in the hands of an experienced surgeon will greatly increase your chance of a successful outcome.

I would recommend Dr Lower because he has years of experience and specialises in this type of surgery (and I had a positive outcome!) He is not the best in the world though. I believe the best doctors are in the United states and Germany. If you are ever unsure how to proceed or want a second opinion I can really recommend writing to Dr March in california - he answers emails for free and even reviewed my HSG slides for me for free. Do ask some of the other ladies on the group for their recomendations too - there is another "A list" doctor in London, is Dr Trew (Hammersmith NHS, but does private too) and there are 4 or so other names on the "B" and "C" lists. I've just checked for you and Dr Saridogan is not one of them, but its worth posting a message to the group asking if anyone else has been treated by him. You can find all the doctors names, contact details and comments by patients they have seen on the groups file section.

I was diagnosed by Dr Lower by my history alone (I had failed the progesterone challenge twice and my local doc tried to do an sHG but couldnt get the instruments in my cervix) Dr Lower did do an ultrasound the day before the surgery in which he identified scar tissue on the cervix. After the surgery he told me that he also removed a 1cm patch of dense tissue from the uterus which he had not seen before.

From what you have described it sounds like there is not a huge amount of scar tissue there, so hopefully with just one surgery you could be TTC again 6 weeks after. Please make sure that the right person does your surgery though - I dont think Dr Lower is the only possible candidate - but it should be someone who has had successes in the past and uses the same protocols as the doctors who are on the groups "A list". There is a great document called "Questions for your Doctor" which you can use to quiz your potential surgeon. Its really worth taking your time over this decision and doing as much research as poss.

You have done the best thing ever joining that group, you will get tons more support and info there and there are some truly amazing and inspiring stories. Hope yours in another one of them someday soon!

Hi missedhappiness I am so sorry for your loss, reading your story is really heartbreaking and I understand just how terrifying the thought of losing your fertility is.

I am sorry that Dr Lower has not been able to help you so far. He is not the only doctor who treats Ashermans, although he does have a lot of experience. Who did your hysteroscopy? Did you get given a DVD of it? (If so you can send this information to other AS specialist doctors and get their opinion) Do you have a good idea what percent of your uterus is scarred? and where the scarring is? When I first asked Dr Lower how bad my case looked he said he did not like to use conventional classifications because it did not take into account how treatable the scar tissue is. I for example would have been classed as very severe because I didnt have any periods at all, but the scar tissue that was blocking my cervix was the easiest to remove. I guess what I am trying to say is dont panic that you will never be able to have children, that is not necessarily the case.

I would really recommend you sign up to the international support group that you can find here. You will see lots of positive and inspiring stories from women who have successfully had babies after having very serious cases of AS diagnosed. I myself got treated by Dr Lower in November and am now 7 weeks pregnant.

Have you considered emailing Dr Lower to tell him what you have just found out? Did you like his treatment? If he did not spot your scar tissue then I would assume that means it is quite small? If you wanted another expert opinion then Dr Trew in London (both private and NHS) has as good as if not better reputation as Dr Lower.

Feel free to ask me as many questions as you like, I would love to help share what I know if its useful.

Its certainly a lot to take in! and most of it is scary reading too! Do take lots of breaks and give yourself some time to digest all the info.

So, you have gone more than 6 months since giving up breastfeeding - I would definitely ask the GP to investigate your amenorhea. Part of the "standard" blood tests they do is a test for prolactin (the hormone associated with breastfeeding and which can suppress periods) - absolutely worth investigating before looking at AS as a possible cause.

This page has good info on what some of the other standard tests are and what levels are normal so you can compare your results (ask for a copy if/when you get them)

If the progesterone doesnt work and your bloods come back normal that would be the time to go to see an AS specialist for review and/or pushing the NHS for an HSG.

Dr Lower charges £205 for the consulation + £250 for the scan which you will get on the same appointment.

Sorry! It IS Geofery Trew (not the first time I have made that mistake, dont know why I keep getting it muddled!) not Anthony Trew. Dr Trew does both NHS and private, but I am afraid I have no idea how much he charges (worth phoning and asking?) I have no experience of trying to get NHS treatment after a private diagnosis - but I would imagine going through Trew might be better? This is a good question for the UK yahoo support group, I am sure someone will have been in your shoes before.

I really would try and push for the progesterone course first. I am sure that this 10 day course of drugs is not expensive and so it shouldnt be too hard for your GP to prescribe it. There could be a hormonal cause for lack of periods, and this is the first thing to try to rule that out. How old is your son or to put it another way, how long have you not had periods for? The NHS's standard criteria for investigations is to look into things after 6 months of no periods. However when I went I was fed that line that "after a baby it can take up to a year" (even though I wasnt breastfeeding!!) I really should have pushed further and quoted some NICE guidelines at my GP but I didnt know anything about that stuff then. You ARE entitled to investigations after 6 months.

You are right in that it could take a few months on the NHS, they will want to do blood tests (worth doing, lots of useful info there for TTC in general) and then refer you to a gynecologist for a scan to check for cysts and then if you are lucky an HSG. If i were you I ask for the progesterone and then push to be referred to a gynecologist asap. Dont let the GP get too involved in trying to treat you, they dont really know anything about fertility issues, its the gynecologist who is the expert there.

I can understand the anger, its very frustrating not to be taken seriously. All I can say is, be your own advocate, educate yourself and be insistent until you get the treatment you deserve. Its well worth getting a proper diagnosis, the alternative is no fun at all.

I can PM you the questions.

Be prepared for your GP to say "ashermans is very very rare, i doubt you have it" or (worse) "if you do have it, it is incurable" dont listen!!!

Do you think your GP would refer you for an HSG if you asked?

Hi Schroomer No I wasnt in overnight. I went in for surgery about 8.am and left hospital about 1pm ish. I always recover from GA really quickly, but they have to keep you at least 3 hours after the op to make sure you are OK. I do know other ladies whose surgeries and recovery times where much longer though. I didnt have to stay in a hotel as I stayed at my mums (I am from London) so no hotel or babysitting costs!

Dr Lowers strategy for TTC after surgery is different from a lot of other AS specialists in Germany/Australia and the US. Elsewhere the standard practice is to do an HSG 6 weeks after the op to check all is OK, and if necessary sometimes and in office hysteroscopy (not under GA, not in hospital) After an op sometimes scar tissue can grow back, so the idea is to break it up while its still thin and filmy. IF you can show that ALL scar tissue has gone for good and is not growing back, then there is no need to hurry to TTC. However Doctor Lower's strategy was to try to get pregnant asap, before scar tissue has a chance to return. (a growing uterus in pregnancy will not allow scar tissue to take hold)

In the end I did a combo of both, decided to have an HSG which was clear, by my mid cycle scan showed thin lining (=possibly scar tissue), so I still tried to get pregnant quickly. TBH I dont think there are many AS sufferers who are NOT in a hurry to get pregnant! The idea of the high dose estrogen for 6 weeks after the surgery is to create a thick womb lining quickly, again so scar tissue will not grow back. This means your best chances of getting pregnant are while you have this nice thick lining, so sooner is better than later from that point of view too.

Must confess, I havent actually watched my DVD yet - bit squeemish I guess!

@ commission (but its true!! - if only!)

Yes, I spent 8 months with no periods ping ponging between different gynecologists who were no help at all, then things moved really quickly once I signed up to that group. I found Dr Lower's details through them, called him and he basically diagnosed me over the phone (not possible for everyone, but by then I had had 2 failed progesterone challenges and failed sHG so it was quite a clear case) I flew to London, had a diagnositc & surgery plan scan, then the next day hysteroscopy under General Anasthetic.

For me recovery was quicker than for ERPC - bleeding for a couple of days, cramps managed with paracetomol+codeine, up and about the same day of surgery and resumed normal activities following day. Yes, they go in through the vagina (the name of the instrument they use is a hysteroscope - you can attach things to it, like camera and small micro scissors) I was also scheduled for a laparoscopy at the same time (through abdomen, but not like a c-s, its keyhole surgery) but in the end it wasnt needed. This was because I had mentioned that I had a fever at one point after the mmc, and Dr Lower explained that this may have caused an infection which may have blocked my fallopian tubes too) Laps are also done if endometriosis is suspected. Dr Lowers procedure with me was to do HSG first (dye inserted in uterus, x rays taken) this confirmed cervix was completely closed - as expected after failed sHG. Then he did the hysteroscopy, and then repeated the HSG again to check uterine cavity OK and both tubes open. I got a DVD of the whole thing to take home

Dr Lower gave me a three month window in which to get pregnant (after removing coil and finishing hormone treatment - 6 weeks) after which he said I would need to see him again if we hadnt managed it. Got pregnant on that 2nd cycle (thank god!) Charting helped enormously but its tricky when you have a little one waking you up at night. If it wasnt for charting and seeing that I was having a normal cycle I think it would have taken me a whole lot longer to realise I had Ashermans.

When you look at the files in the yahoo group - look for one in "Getting STarted" called Questions For Your Doctor - its great to take it with you to your appointment.

Here use this link to my chart to sign up and we will both get 5 free VIP days.

I am impressed that NHS has an amenorhea clinic - I moved to Costa Rica 6 months after DS was born so never got the chance to go back to my GP. Dr Anthony Trew (hammersmith) is an A list doctor working both private and NHS. If there is anyway you can push to get seen by him, go for it! (It cost me about 4K to get treated by Dr Lower -still hurts to think about the cost but I am always very glad I did it) There are a couple of other "C" list doctors in London too. There are several women on the UK version of the yahoo support group who have successfully been treated by the NHS and gone on to have babies, the key thing is not to let anyone inexperienced do your surgery.

If you can get your GP/amenorhea clinic on side and in agreement that AS is worth looking at as a possible explanation it will be then easier to ask to be treated by someone with experience, rather than any old gynecologist. Its well worth pushing hard to get the right care, all the women I have spoken to who have had repeat surgeries and unsuccessful outcomes have had their first surgery done by someone who wasnt familiar with AS.