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

(131 Posts)
MummyAbroad Wed 10-Nov-10 21:14:03

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?

kat2504 Wed 10-Nov-10 21:22:51

Just saying hi! Followed your tests and diagnosis on the other thread and think you are doing a fab job on educating people about this condition. I had never heard of it before.
I understand the fear but from what I have read the operation has a good chance of allowing you to ttc again? hope this is the case!
All the very best with the op, hope you don't freeze too much over in our colder climes. And well done for bringing this to our attention because it certainly isn't something the docs warn you about when you m/c.

MummyAbroad Wed 10-Nov-10 23:48:13

Hi Kat!

Thanks for bumping my thread grin I hope I will be TTCing again soon. Some women do need more than one op though, but I have decided to be delusionally optimistic grin (today anyway!)

I think it is something that doctors should warn you about after childbirth as well as mc, when the risk seems to be greater.

I had an ERPC a month after birth of DS and seem to have developed the condition then, I have since read many similar stories on ashermans.org. Apparently your uterus is much more fragile when all stretched out after a birth.

I definitely think that any woman who doesnt get her periods back after either situation should be assessed a lot more quickly than is the currant practice.

I can see how being handed a leaflet about AS right after your mc would be far too scary though...shock confused There needs to be a balance between not freaking people out unnecessarily and getting the right people the right treatment quickly. At the moment its all a bit slanted to one side.

wait till I rule the world though.... mwaoohahahahgrin

sh77 Wed 17-Nov-10 14:59:44

I did lots of reading on this before my ERPC. It seems that there are very very few Asherman's specialists in the NHS. Adrian Lower is very highly regarded and uses minimally invasive techniques to treat Asherman's. I contacted him as my it took a v long time for my periods to return. Thankfully they turned up before I planned to see him. I think he only practices privately though - could be wrong.

MummyinEngland Wed 17-Nov-10 16:59:34

Hi sh77

Yes you are right, there are only a few AS specialist in the country in fact. You can find a list of doctors and their contact numbers on the yahoo group accessed through wwww.ashermans.org. Adrian Lower only accepts private patients, as I have not been in the UK for a while I am not entitiled to NHS care so this is the only option for me anyway.

I had a hysteroscopy and division of adhesions with him yesterday and recovery is fine (feels like bad period pain but OK with paracetomol and hot water bottle) I am going back to see him tommorrow to find out what his prognosis is for me, unfortunately when I saw him after the op I was still groggy and forgot to ask how it went!

I am feeling very relieved to have finally had treatment though smile

MummyinEngland Thu 18-Nov-10 17:10:16

I have had treatment (hysteroscopy) and the doctor said that he got ALL of the scar tissue out! I am very pleasedgrin grin grin

I have had a coil fitted which will be in for 6 weeks while I am on hormone therapy and then after that I can start TTC grin

MummyBellsAllTheWay Mon 29-Nov-10 18:23:54

Bump just to see if there is anyone else out there.

Hulababy Mon 29-Nov-10 18:28:27

Hi. Only just seen this. How did the op go? How are you feeling?

I was dx with Asherman's Syndrome a few years back (2007) and had a couple of ops to remove the adhesions, followed by hormone treatment. t was a tough few weeks/months but I have come through the other side. My treatment for AS finished Jan 2008. I had Clomid to help with TTC for 6 month slater that year. Sadly for me TTC baby 2 has not been successful, but I am now pain free and although my periods are still very light and very short, they are present and they are no longer accompanied by the excruiating pain.

My AS was caused by adhesions forming following the c section with DD, in 2002. Took a long time to get a dx.

MummyBellsAllTheWay Mon 29-Nov-10 19:17:23

Hi hulababy

I am feeling fine thanks (physically) I am finding it hard to really accept that I am "fixed" though. I think I might feel better when I have had my first period, until then I am still a bit paranoid that maybe it didn't work. (although I am very confident that dr lower did a good job and wouldn't have given me the green light if there were still scar tissue to worry about.)

I'm very glad you are in pain anymore.

So are you still trying for number 2?

Xxx

Hulababy Mon 29-Nov-10 20:25:33

Officially I guess we still are. Not doing anything to prevent it, but haven't done anything to prevent it since DD was 2 and a bit (around Sep 2004) so doubt it will ever happen now.

Do keep an eye on how things go, esp re periods. Apparently adhesions can return.

Fingers crossed evrything is now okay for you

MummyBellsAllTheWay Mon 29-Nov-10 20:36:33

Thanks, yes that is my big worry. I am taking a risk because I came to London for treatment but won't be able to stay long enough to get follow up care. I fly back to costa rica where i live on Friday and have to find a local gynaecologist to remove the coil and then maybe do an hsg. Dr lower has said that I can ttc as soon as the coil is out but if I do an I will have extra reassurance (I can send him the pics to look at too). it's a scary decision, it would be great to just go ahead at ttc and avoid any more invasive tests but if I do that I might not survive the worrying that will inevitably follow..

So do you feel that your scar tissue has returned? Are you thinking about getting diagnosis/treatment again?

Hulababy Mon 29-Nov-10 21:08:38

I am not sure TBH. I don't have the pain I used to have but my periods are still very light and very short (a day at most really.) But as no pain who knows? Not going for further tests - took so long last time.

I went NHS for my dx and treatment and was very lucky with my consultant. It was just getting the initial referral that literally took years!

Many people do successfully have children after treatment fr AS. There is a MNetter who has done IIRR. So hopefully you will be ok, fingers crossed.

Have you got hormone repacement tablets to take following this op? I found the high doeses of HRT very difficult - much more difficult hat the ops or what I expected.

MummyBellsAllTheWay Tue 30-Nov-10 08:29:03

Hi hula yes i am on 6 mg of oestrogen, and will be combining that with progesterone later. so far it's ok but I have only done a couple of weeks...

I didn't have any pain, apart from normal period pain which I got when I should have been bleeding (I was charting, so I was expecting to bleed but it never came)

I know lots of women on the yahoo group who had light periods after surgery and needed further treatment
to conceive. Who did your first surgery? Was it Dr Trew? Have you got any other info about your endometrium like how thin your lining is or if they can see the " triple stripe" ? You can get this info from a normal scan.

I know what you mean about taking a long time to get diagnosed. Unfortunately, I think this is the norm for most AS sufferers. I got my scarring from an erpc for retained placenta a month after giving birth. I didnt have periods but this was ignored by the nhs. then I went to costa rica and was treated privately after having a mc, they kept looking at hormonal problems and at one point thought it was a molar pregnancy. Eventually I found out about ashermans myself and came to see a specialist in London, I am very glad that I did or I think the problem would have continued
for years more ( and I would have had to endure more mcs)

So if you don't mind me asking, what kind of symptoms did you get from the hrt? ( I have already had constipation, not fun! ) also what is IIRR?

Take care xxx

Hulababy Tue 30-Nov-10 19:35:32

Just looked up my history from when i first posed on the ashermans.org site.

Re. lining: My cervical lining at mid cycle was just 2mm – should be nearer 11/12mm.

Symptoms

- No or light bleeding each month
- Intense pain around time menses is due
- Pain around mid cycle time
- Infertility
- Cervical lining very low

I was treated on the NHS at the Royal Hallamshire Hospital in Sheffield, My Cinsultant was Mr TC Li.

Hulababy Tue 30-Nov-10 19:39:12

I was on 8mg of the HRT for 8 and then combined with progesterone for the later half of the treatment.

I suffereed really badly with the hormones - very emotional, very up and down moods, lots of down moods really, very weepy, etc. I couldn't work during the treatment due to the level of hormonal/emotional goings on - I worked in a male prison doing 1:1 work with inmates, so not a safe environment when not 100% on the ball.

I remember starting a thread on MN at the time as I was really struggling.

MummyBellsAllTheWay Wed 01-Dec-10 09:16:08

Male prison! Wow! Cant imagine how you coped with that.

Maybe that extra 2mg makes the difference, I am not feeling too bad on 6, however, i have had crampy period pains for the last two days and no blood! Starting to get worried... Can I ask, do you / did you chart? I have been taking my temps but not sure if I can trust my chart because of the oestrogen, would it suppress ovulation? I started taking around cycle day 10 and already had large follicles growing.

Hope you are well xxx

MummyBellsAllTheWay Sun 05-Dec-10 16:50:00

I got my period!!! <<pops champagne cork and passes round some glasses>>

Dr Lower is now officially my hero. grin

Hulababy Sun 05-Dec-10 17:02:42

That's great

I haven't temped or anything for a long time -- years now. Sorry.

MummyBellsAllTheWay Sun 05-Dec-10 17:09:31

Sorry yes, forgot to say, I did solve the mystery about temps/oestrogen.

Temping worked, and ovulation was not suppressed because i hadnt started taking the pills at the beginning of my cycle. Next cycle temping wont work though as I will be taking the pills from day 1.

threelittlepebbles Mon 06-Dec-10 15:07:27

Message withdrawn at poster's request.

MummyBellsAllTheWay Mon 06-Dec-10 18:19:09

Hi threelittlepebbles Yes, come in and make yourself comfy smile

Sadly, self diagnosis seems to be the most common way to find out you have AS. I have been reading the boards of the yahoo group (I really recommend you join it and have a read of their archive files explaining about diagnosis and treatment -follow the link in my first post) and have read many many stories exactly like yours.

I hope you get lucky and get a sympathetic GP, but most ladies experience is that even gynecologist are poorly trained to recognise and treat AS, and you will be told that you cant possibly have it because it is "very rare"

If you manage to get your referral for a scan (I really think they will only do it if you fabricate stress that you have a lot of pain) they will not be able to see scarring with a normal ultrasound. But they CAN tell you how thin your womb lining is, a very thin lining (<8mm just before ovulation) is an indicator of AS.

The only way to get a definate diagnosis is to have an HSG test (they insert dye in your uterus and take xrays) or much better and sHG, in this test they insert saline solution and use 4D scan to see the scars. (although a sonographer with no experience of AS will not see them) Dr Lower, who treated me, is the only doctor in the UK who can diagnose from a 4D scan (without saline solution) He charges £205 for a consultation and £250 for the scan.

HSG's are offered to women on the NHS who have been trying to get pregnant for more than a year (but as you have been pregnant you will not qualify- madness!) or if you have absent periods for more than 6 months and your periods cant be induced by taking hormone tablets, or if you have unexplained pain that points to some kind of structural gynecological problem.

I strongly recommend that you be your own adovate when you go and see your GP, read as much as you can and be prepared to either be fobbed off or come up against plain ingorance as sadly most doctors are very poorly informed about AS. And one last thing, dont believe anyone who shakes their head at your and announces your are permenantly infertile! AS IS curable as long as you get yourself in the hands of the right doctor (there are AS experts on the NHS too, you can find thier names on the yahoo group) So many women are scared witless by ill informed doctors telling them there is no hope, there most definitely is! grin

Do let me know how you get on,

best wishes xxx

Dilema10 Mon 06-Dec-10 18:36:07

I'm so glad that someone has brought up Ashermans. Following a D&C for a miscarriage in Australia (they do not use the pill method there), I contracted severe Asherman's and my procedure had been carried out by the Director of Gyneagcology at the hospital where I worked. My case was so sever, that I wanted the best surgeon. I was lucky enough to see Professor Vancaille in Sydney, Australia, who deals with about 20 Ashrman's cases per month. It took 1 operation under GA for me for 6mths to remove the adhesions. I have had around 6 miscarriages and been pregnant twice since then, once with twins. I have lost all my pregnanices under 10 weeks and have asked to be referred for tests as I am 40 now and would like to give it one more chance. My partner is indifferent and says I am doing it for myself. He is happy to go along with it, but I got the impression I would mostly be on my own with it. He may change once it is born? If not, I would go home to Australia with it on my own. Also, I worry that I'v lost that instinct (though my Mum says it doesn't kick in until its born!), I worry that I'm too old (although I have loads of friends who had their first at my age and later), and worry that I have lost the energy to look after a child. I think of the long term, school and all that stuff. At the same time, I don't want to reach menopause and be sorry that I didn't give it one more go, even if it means being a single mother, which quite a few of my friends are, and I have no family here, but a big family in Australia. I know this covers quite a lot of different area's, but I would appreciate any comments on whether I should try one more time because making the decision is driving me crazy!!! I was told that any future pregnancy would be high risk. Can I request a CS on this basis? Does it come naturally once the baby is born? I have no problem conceiving at all, just keeping them past 10 weeks. Thanks.

threelittlepebbles Mon 06-Dec-10 21:13:48

Message withdrawn at poster's request.

MummyBellsAllTheWay Mon 06-Dec-10 23:10:33

Hi Dilema,

I am very sorry to hear about your losses, that must have been so hard to cope with, its no wonder that you are confused and worried about what to do next.

I apologise if I have misunderstood, but did your pregnancy with twins go alright? Were the 6 miscarriages AFTER the twins? I am trying to understand if your surgery in Australia cured the AS, but then more scar tissue returned after a birth?? If I were you I would want to be checked out by an AS specialist doctor to see whether any adhesions have returned. I agree with threelittlepebbles that talking things through with DH sounds like the first step.

threelittlepebbles That yahoo group is a bit difficult to crack into! hmm but really worth it. I have just found out that I may have been charged fees for an overseas patient shock another lady on the group told me she just paid:
Hospital fees: £1560
anethestist’s fee: £250
Mr Lower’s fee: £895

which is less than I did! Up until now I have been telling myself that it was money well spent (my AS was also caused by the NHS and its both depressing and infuriating) but now I am feeling really pissed off that I have paid even more than other people!sadangry

I have heard that doctor Lower accepts BUPA patients too, so if you have any medical insurance they might cover it if you make it clear that it is a medical problem (painful periods, risk of endometriosis) rather than a fertility treatment.

Dilema10 Tue 07-Dec-10 09:15:57

I had 4 miscarriages before the Ashermans. The first were all natural, and it was only after the D&C that I got Ashermans. I have had two miscarriages since then. One was the twins, which I took the pills in the UK for, and the other occured naturally. I have asked to be referred now for tests. My dp does not really want children, but would be prepared to do it for me as he feels that is the cause of some of my emotional problems. I get the feeling he would see it as MY baby, rather than OUR baby. That's ok,but I'm not sure I want one now at 40, but then think what else am I going to do for the next 15 years! It's all the running around when they get to school age etc that puts me off, and I might end up a single mum too. But again, I don't want to regret not having one later in life when now is my chance. Is it true that the maternal instinct doesn't really kick in until it's born? Thanks for your reply.

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