ASHERMAN'S SYNDROME - problems conceiving after ERPC

(56 Posts)
FifiOK Mon 23-Feb-09 05:07:59

Does anyone have any experience of this ? Or if you too are having problems after an ERPC then have a read of this. www.timesonline.co.uk/tol/life_and_style/health/features/article3025016.ece

I'm off to see my GP this Friday so would really appreciate any advice.

Thank you.

FattipuffsandThinnifers Sat 28-Feb-09 00:04:08

Fifi, I've only just seen this and you'll have been to your GP by now (?), but wanted to say I've got/had Ashermans syndrome and know lots about it.

If you want to ask any questions please go ahead, I'll keep watching this thread smile

Hope your GP was sympathetic - have you been referred for further investigation?

FifiOK Sat 28-Feb-09 19:19:14

Thanks so much for replying. I went to see my GP on Friday who has referred me for an ultrasound. My blood tests were all normal. She hadn't heard about Ashermans so I gave her the times article to read. Am interested to know all about your experiences - tell me everything. I am convinced that the ERPC has left me with a few problems and is behind me failing to conceive. I am hoping she will refer me to a specialist so I can have a HSG as I've read this is the most effective way to get diagnosed.

Hope to hear from you soon.

FattipuffsandThinnifers Sun 01-Mar-09 23:12:51

Hi fifi, glad you saw my message!

I got Ashermans after an ERPC 5 years ago for a missed miscarriage at 11 weeks. I got an infection afterwards, then had a repeat ERPC to 'clear' the uterus. I had no idea something was wrong until my next period, which was very late, and only 1 day long. After this happened a second time I went to the GP who suggested it might be Ashermans. A very long-winded process to diagnose it including a loooong wait on NHS - I got so impatient I saw a private consultant (Dr Lower, who was quoted a lot in that article - he's great). It took around 2 years to be finally diagnosed, during which time I got pregnant twice but miscarried both times.

I had scarring in the lower part of my uterus, and a very thin endometrium. I had a hysteroscopy which removed the scarring, but tbh I don't think the endometrium ever fully recovered as my periods have never been longer than 2 days since.

However I conceived DS in 2006, he is now 22 months - so there absolutely is light at the end of the tunnel!

So what has happened? I'm assuming you had an ERPC after miscarriage - I'm so sorry. Did your periods not return, or return much lighter? When was this?

Yes, an HSG can diagnose it, but the best, most accurate way is a hysteroscopy (camera inserted through a very, very thin scope).

One thing that is important is to find someone who is experienced in treating Ashermans, as the surgery is skilled and specialist. As your GP's ignorance shows, it is quite rare, many GPs don't even know about it, and even a bog-standard gynae may not have seen or treated it. I was told by one registrar that they would treat it with another ERPC - absolutely the worst thing to do! And by another that I couldn't possibly have it as I wouldn't be getting periods hmm

Whereabouts are you? If you're in London, Dr Trew at Hammersmith (he also has a private clinic but NHS at Hammersmith) has a great reputation. Many women in the UK have had to go to a dr in Germany who is one of the few ashermans specialists in Europe (there are actually none in the UK).

There is also a good website, ashermans.org, and an online group. I haven't been active there for a while but was a member and it is fantastic, really informative and supportive. I think there's an email address on the website you can email to join up.

Btw I think there are a couple of other people on MN who have Ashermans too, so perhaps someone else might come along and add more info.

Anyway, good news that your GP has at least referred you for a scan - but be aware that this may not show up adhesions so isn't really a tool to diagnose. If I was you I would be really pushing for an HSG or hysteroscopy.

Sorry this is so long! I hope some of this might be useful though.

FifiOK Mon 02-Mar-09 08:38:03

Thank you for this. Yes I had an ERPC back in September following a blighted ovum. Since then my periods have been very light, sometimes shorter. I seem to get a lot of pain from mid cycle through to my period which is then also very painful. Having never really experienced much in the way of period pain before I am convinced this is significant. I will take your advice and push for a HSG or hysteroscopy if the scan doesn't show anything then I will go privately so thanks for the names mentioned.

FattipuffsandThinnifers Mon 02-Mar-09 20:32:17

I'm sorry about your mc.

I know from hearing others' experiences when there is unusual period pain as you describe, sometimes the entrance to the cervix is scarred and blocked so the blood cannot escape - hence building up and causing pain which you don't normally have.

Good luck, I hope you get some answers soon. When is your scan?

FifiOK Tue 03-Mar-09 09:09:23

I'm waiting for a date to come through now. My GP said it would be fairly quick so no need to try & arrange privately. If it doesn't really show what might be causing the unusual pain then I will try and get her to refer me to someone else. If she won't I'll go and get it all done privately. Thanks again for your interest it is great to talk to someone else. I'll let you know when I get a date through for the scan. The crazy thing is I might not even have Ashmermans but by doing this I can at least eliminate it.

pecanpie Tue 03-Mar-09 16:15:24

Thanks so much for posting this. Having had 2 ERPCs in close succession (first one was too conservative so had to be repeated) and now having a potential infection, my consultant mentioned this to me when I went to see him for follow up. It was great to have a clue about Ashermans!

Hulababy Tue 03-Mar-09 16:54:50

I have had Asherman's Syndrome, following a c section for the birth of my DD (who will be 7 in April).

My symptoms were:

* whilst taking the pill - no periods at all but a lot of pain at the time when my epriod was due and mid cycle
* when off the pill - very light bleeding (a day at most, never needed more than a panty liner); lots pf pan mid cycle and time of period
* the pain was intense pain; I misssed 1-3 days of work a month in the last 3 years (pain intensified and got worse as time went on), struggling in as much as I could but really suffering. Sometimes the pain was enough to make me actually sick

The symptoms begin about a couple of months or so after having had DD.

I went to the GPs when DD was about a year old and I had not had any bleeding since DD was about 8 weeks old or so. The doctor dismissed it and said that whilst on the pill it was fine to have no bleeding and dismissed the pain also.

So I put up with it.

When DD was abput 2.5y (Sep 04) we started TTC again. DD had taken a while (15m, early mc, another 15m) to concieve, s we expected things to take time.

Referrals

June 07 - saw GP as periods very light, no success in TTC over nearly 3y; intense pain still mid cycle and at time of period. GoP examined me and felt that I appeared to have a very closed cervix and was concerned about that. Made a referral to see consultant

Aug 07 - first app with consultant; arranged for external and internal scans, blood tests, etc.

Nov 07 - consultant's app to discuss scans and next steps; This is when Asherman;'s Syndrome was first mentioned. I was lucky that my NHS consultant was somewhat of an expert of this quite uncomon syndrome, he had written papers, etc. on it. Hysteroscopy planned plus removal of adhesions within 9 months

June 09 - saw consultant again due to delays in being called for op and cancellations (not happy!)

Aug 09 - pre op appointment

My Treatment

Sep 07 - 1st hysteroscopy (under GA) with laser removal of remaining adhesions; 7 weeks of high doseage HRT and progestrone treatment following this. Half of adhesions removed.

Oct 07 - 2nd hysteroscopy (under GA) with laser removal of remaining adhesions; 9 weeks of high doseage HRT and progestrone treatment following this.

Jan 08 - internal scan to look at results of removal of adhesions; blood tests

Feb 08 - saw consultant; post op scans looked as if all was ok; mine and DH's tests all ok so all set for TTC again

June 08 - consultant app; TTC unsuccessful so began Clomid

June to Dec 08 - 6 months of Clomid; not successful in temrs of TTC

Feb 09 - consultant app; nothing mre they can do unles we go the IVF route; so wait and see at present; due to see consultant again in Nov 09

I found the treatment and then the Clomid very difficult. The HRT in large doses, and then the Clomid sent my hormones and emotions haywire and I have been verging on depression on and off throughout this time. I missed quite a lot of work - was off for the ops and the subsequent treatment both times, and missed 3-4 weeks towards the end of the Clomid treatment. Most of these symptoms however have vanished since stopping the treatment.

Had I gone private I could have been seen much quicker.

And now

In terms of TTC my treatment has not helped.

However in terms of pain it has. My periods, whilch although are still very light and short lived, invlolve very little pain and crampings, beyond what would be considered very common, normal cramps.

Hulababy Tue 03-Mar-09 16:56:43

Wow, sorry that was so long!

My consultant is Mr T C Li, based at the Royal Hallamshire Hospital in Sheffield.

FifiOK Tue 03-Mar-09 19:53:18

Thanks for your post pecanpie good luck with the follow up.

hulababy thanks for you sharing your story. You really have had a tough time. I hope you can move forward with the TTC through further treatment or ivf. Keep posting to let us know how you get on.

FattipuffsandThinnifers Tue 03-Mar-09 20:10:49

fifi I hope the scan will help towards finding out what is causing your problems. I'll look out for any update from you. Good luck.

hulababy I seem to remember meeting you before talking about ashermans! I'm sorry to hear the extent of what you've been through, and still going through, I didn't know it had been so gruelling for you. I had a hysteroscopy for removal of adhesions, and balloon fitted, but wasn't given HRT drugs - I've heard how horrible they are, poor you sad.

Have you had a scan or diagnostic hysteroscopy since the clomid has finished? It may be worth seeing what condition your uterus/endometrium is in - eg how thick your endo is.

Galling that you have to wait till Nov for your next consultant appt shock - why such a long wait?

Btw FWIW from what I've read, it seems that periods never return to what they were before, even after successful treatment, having subsequent children etc. Certainly true in my case.

Hulababy Tue 03-Mar-09 20:32:28

We decided not to go down the IVF route for various reasons. Therefore there is nothing more the consultant really can do, hence the 9 months is just for a routine appointment.

I have has a HSG (???) since the hysteroscopy but not since Clomid. We discussed further at the last op but the consultant felt that it wasn't necessary as previous scans showed the adhesions to have gone, etc.

FattipuffsandThinnifers Tue 03-Mar-09 20:44:26

Well, good news of course about the adhesions being cleared and not recurring. I wonder if your consultant now presumes that you not conceiving is not related to the ashermans then.

I wish you the best of luck ttc.

I hope this doesn't sound patronising, and I'm sure you've already thought of relaxation 'techniques', but one other thing I've heard highly recommended is acupuncture. Apparently it can help blood flow to the uterus, and in any case would help relaxation.

Hulababy Wed 04-Mar-09 17:45:43

Yes, have tried lots of things and TBH not that stressed about it these days. Thanks

FifiOK Wed 04-Mar-09 22:31:20

Amazingly quick got a scan date through today for 20th March - very impressed with speed of NHS.

It will be just at the end of my cycle also so good timing for when I get the most pain.

Will push for HSG or hysteroscopy if this is inconclusive though.

FattipuffsandThinnifers Thu 05-Mar-09 17:17:42

That's great! I hope it gives you some answers, keep us updated. All the best.

FifiOK Thu 05-Mar-09 19:42:31

I'm going to start a new thread in Conception about Ashermans as I am concerned that there are probably quite a lot of MNers looking in the miscarriage forum after just having an ERPC or just about to have one that might start worrying unduly about ERPCs. Especially with the title I have given the thread.

I'll do it now !!

FattipuffsandThinnifers Thu 05-Mar-09 21:02:51

Good idea.

Someone called Lalatele (I think?) who was concerned by similar symptoms post-erpc started a thread - I saved it under Threads I'm On but was lost when MN had the relaunch. Hopefully she'll see it again if it's relevant.

I became quite evangelical about the subject when I was first diagnosed - it is amazing how unknown it is (I had never heard of it, neither had any of my friends), and is never listed as a risk when you have an ERPC, but is very real if you have it!

kissmummy Fri 06-Mar-09 15:42:05

i am really interested to read about asherman's syndrome. i had a D+C several years ago and have very light periods. i don't remember when my light periods started but it was some years ago and may have been linked. I have had a successful pregnancy but three miscarriages since. I have long been concerned about my light periods as i used to have quite heavy periods and it didn't feel normal; however, i must have asked three or four different GPs and specialists over the years and none have considered it a problem.now i'm not so sure. this is one thing i'll get checked out if we have more miscarriages. thanks for highlighting.

Hulababy Fri 06-Mar-09 15:51:27

kissmummy - do you have a lot of pain too?

kissmummy Fri 06-Mar-09 21:35:40

actually i often have no pain at all so hopefully i don't have Ashermans but i still think it might be worth checking if my blood tests don't turn up any other reason for the miscarriages and we have more failed pregnancies in future. it's quite unusual to have periods that only last two days and are very light, isn't it? my old periods used to last at least a week and were a nightmare! most GPs i've mentioned this to just say i'm lucky to have light periods.

bhbhbh Sun 22-Mar-09 01:03:26

Hi everybody,
Im new to this group, and actually only joined because I came accoss your ashemans conversation on the net.

Im just wondering if you are all members of the ashermans on-line community? I am and I have learned so much there.

I cant recomend it enough and is essential for any body who is suffering (or thinks they might be) with ashermans syndrome.

dorisbonkers Fri 08-May-09 00:28:31

Hello. I realise this thread is a few weeks ld but came across it on a search.

I had severe Ashermans and have recently had a baby.

I had an ERPC about 5 years ago and never got my periods back. I had very bad period pain, but no blood. I now understand that there are next to no Asherman's specialists in the UK and the condition is quite rare so that explains why I self-diagnosed after about 2 years of to-ing and fro-ing to various doctors in London. I was given antibiotics, told to wait 6-months, other pills and told it was the early menopause (I was around 34/5 at the time)

After searching on the internet I guessed that I had some type of adhesions. The only thing that explained painful monthly cramps and no blood after an ERPC.

I actually moved 2 years ago to Singapore for work and within a week had made an appointment with a surgeon here who was recommended to me by a friend who had awful fibroids.

He agreed it sounded like Asherman's and I had an operation to remove the adhesions (which were severe) with scissors. He placed a copper IUD in to keep the endometrium apart and I was put on HRT (I think it was Progylutin sp?) for 8 months.

I had the coil removed and stopped the HRT and I got pregnant immediately but miscarried very early. I got pregnant two months after that and safely carried to about 36 weeks (had preeclampsia and a stargazing breech baby so had an early section)

I had to have many scans in the early days as the risk of miscarriage is very high.

I have to say my ob/gyn was very surprised I got pregnant so quickly (twice in 4 months)

Oh, and I'm leaving Singapore today. I am not sad to leave in some ways (place drives me up the wall) but I was so lucky to find my doctor and have such amazing medical care here.

I was booked to see a specialist in France who was able to treat Asherman's but moved here before it came to that.

All the best of luck. I'm proof it has a happy ending.

dorisbonkers Fri 08-May-09 00:35:59

Oh, and if you have any questions, I may be out of action for a few days but will come back to this thread.

And I wanted to add (my message was a bit matter of fact) that I feel for people so much that this is emotionally a hard thing to bear. I was 36 when I had the operation and had resigned myself to never having kids.

I also feel tremendous anger that I was fobbed off so many times and I had to self diagnose.

By the way, I've been told scissors is a better way to remove the adhesions than lasers which can encourage the adhesions to grow back, but scissors require more skill and is trickier)

Take care, baby calling!

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