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?

Hi there - am joing this a bit late and hope some people are still there.

I have just booked in with my doc for treatment for suspected ashermans and I am a little nervous to say the least.

My story is very long and started 5 years ago when I had a trachelectomy for cervical cancer followed by an infected lymphocyst. After this my periods gradually stopped and after one failed hystroscopy I have put things on hold until recently as I couldn't cope anymore.

I have no periods, monthly extreme pain but no blood in my cavity, the only bit of good news is that on ultra-sound my uterus and endometrium doesn't look bad although I know that is not a guarantee.

So I am booked in on the NHS (can't afford private) for a lap with hystroscopy hopefully division of any adhesions and the a coil inserted for a bit.

That's me I guess - thank you for listening.

Becky

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,

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!!

I have a 1 year old son. I breastfed until he was 4.5 months old. Had regular periods before then, but have had none since the giving birth. I've had 1 D+C, had a c-section with my son, had retained placenta (bled for 10 weeks) so another D+C. I've been back to docs a couple of times about having no periods, and only with me last visit did she say she'd refer me. After some online searching I've stumbled across Asherman's. I realise that it could be that! I bet there are no specialists in the NE of England. Thank you for the links in this forum - I've got some reading to do...oh yes, and I'm now 40 and have been TTC for a year...time's ticking.

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

Fantastic advice - thank you. I will start charting. Before reading about AS (today), I asked GP if Clomid might help (on Monday), and she said that she wouldn't feel comfortable prescribing it because she didn't know enough about it. So she referred me to and NHS amenorhea clinic - early May (time keeps ticking though). I doubt I can afford to go to Dr Lower. I hate to think how much he might cost. I'm afraid that I will have to stay with the NHS.

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.

I've signed up to the Yahoo group so will read about the docs on there. The clinic I'm going to is one that deals with amenorhea - I doubt it specialises in it mind you.

So, looking at your charts, it seems that you had your op in Nov then got preg when you ovulated mid Feb?! That's good going! Did the op hurt much or is it just like an ERPC? Does the surgeon 'go in' in the same way (through vagina) or through the abdomen as in a c-s? I'm jumping the gun and have everything crossed that I don't have Ash. At £4k, I'd think about it. You should be on commission!

@ 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.

Wow - so it was all dealt with in 2 days - diagnosis and treatment! That was quick. that would keep the hotel cost down to - but did you have to stay in a hospital overnight?

You got a DVD?!! I'd love that sort of thing (yep, I think I'm a bit weird that way).

Dr Lower didn't give you long to get pregnant then. It mustn't take the uterus long to recover after the op so that it's receptive to an embryo.

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!

I've joined the fertility friend site and the yahoo site. I joined the yahoo group last night and not yet been approved, so I may not be able to take the questions you've mentioned to my doc on Monday.

On Monday my GP said she was going to 'examine' me: look at my cervix, feel my uterus. Not sure what she's looking for, but the appt will give me the chance to ask her if it could be Asherman's (logical answer: yes, it could be).

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?

I am now thinking about the possibility that I may have Asherman's non-stop. I'm getting a little angry with the GPs who have told me that 'my periods will come back, just give it time'. I don't think that I can cope with not knowing for more months.

So, I suppose that I could go to Lower just for a diagnosis - any idea for the cost of that?

If I do get diagnosed, can I then ask to be seen by the NHS specialist at Hammersmith?

p.s. I can't find Mr Anthony Trew on the web anywhere, but I can see a gynae at Hammersmith called Mr Geoffrey Trew - is this the man?

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.

£450-£500 is affordable for me.

I've gone goggle-eyed from all the reading around this subject I've done tonight. I've also been reading about hormonal causes of amenorhea, and read about milky discharge from breasts. So I gave my nipples a squeeze and - yes, milk! hmm.... Another thing to fret about.

I will push for the progesterone - a 10 day course isn't much if it can restart my periods.

I didn't know about the NHS' criteria. I breastfed for 4.5 months, had no periods in that time, still none and my son is 1 year old.

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.

hello,
I am 37 with no children. After trying for the first time got pregnant. Unfortunately at 13 weeks at december 2010 i had a missed miscarriage, baby died at 10+2. opted for medical management but there was still placental tissue left and i had to have a D&C in January.Since then i had two periods on time but very very light and short only 1-2 days almost like spotting. I always had short and light periods but these were different.
I have been diagnosed today with level 1-2 asherman's after a hysteroscopy today. Before this when i self diagnosed my self and went to see Dr Lower in London. he did an ultrasound and told me that does not look like asherman's but may be a left over tissue from D&C. I was so happy and relieved. But today after the bad news i am devastated and the thought of not having any kids killing me. I don't know what to do. Shall i still go and see Dr lower even thought he couldn't diagnose it. Just want to die. Please help.

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.

hi mummyabroad,
thank you for your quick respond, and best wishes with your pregnancy. I hope you have a happy pregnancy and healthy baby.
my hysteroscopy was done in NHS hospital in Whipps Cross by a lovely doctor Dr.Ms Shahid. When i explain to her my problem with my periods she was right away suspicious of Asherman's and did a ultrasound, saw some trapped fluid in cavity but was not sure and she arranged a urgent hysteroscopy. Meanwhile just to clear my head I went and saw Dr Lower, after an ultrasound he saw some abnormality was positive that it wasn't asherman's. I have emailed him today waiting for response and i have just joined the group ashermans.org.
after hysteroscopy she told me, i have healthy endometrium on left side of the uterus but right side had some scar and was mild-to-moderate. she said she didn't cut anything (because i told her not to do anything if it was asherman's.)but she just separated scar tissue with the tip of hysteroscope, she showed me some to me it look a lot. she also recommended a doctor, Dr Ertan Saridogan, she told me she knows him and he is one of the best. But i have never come across to him on internet.I understand you are happy with doctor Lower,(I don't want to keep chasing other doctors since I have limited finances.) would you recommend him, did he diagnose you with ultrasound. what is his success rate.? I really feel so unhappy and I am afraid i wont feel normal ever. To see such a strong women like yourself is really encouraging. I know it is a lot of questions, thank you for your help.

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!

MummyAbroad is a one-woman support network.

MissedHappiness we can hold each other's hands as we learn more about Asherman's. I'm at an earlier stage than you in that I don't know if I have it or not (so may be on here fraudulently!).

MummyAbroad - Do I ask my GP to refer me for a hysteroscopy or a hysterosalpingogram (HSG)? you said to push the NHS for an HSG, but I also saw on the Ashermans.org site that the hysteroscopy is classed as Gold standard for diagnosis. The website also says:

◦Sonohysterography (SHG) or hysterosalpingogram (HSG) (these procedures are not as accurate as hysteroscopy, but will confirm patency of tubes if infertility is a problem)

What do you think?

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 ladies, just thought I'd pass on some information which may be useful regarding getting seen by Mr Trew on the NHS. I was diagnosed with Asherman's a year ago and joined the yahoo group straight away, at the time there was a lady battling to get NhS treatment by Mr Trew, and she posted the following advise as to how to go about it

• Mr Trew practices at a "Fertility Centre" and to be referred to him on the NHS, you have to be referred as a "fertility" patient and must fit the following criteria.

www.hfea.gov.uk/fertility-treatment-cost-nhs.html

• If you need NHS treatment and do not have any living children, you can be referred to any NHS Dr for treatment under "Patient Choice" if unhappy with the care at your local PCT and can fit in the previous criteria. IF NOT, then you need to do the following.

-If you have a living child or do not fit in the criteria, you must have your
GP fill in the Request for Treatment. The local PCT then meets and either agrees or disagrees on the approval (whether they want to agree to pay for treatment). If it is declined, you can appeal again to the PCT. Once you are approved you will have a PCT ref number which is the PCT's guarantee to fund the treatment. If the PCT agrees, apparently all other fertility criteria gets thrown out the window.

• If you are not getting the help or treatment that you need, SPEAK TO YOUR MP!!!

I hope his might be of some help