Uterine Adhesions

[Maybenextmonth]

I was wondering if anyone has any experience with Uterine Adhesions following a D&C after miscarriage.

We've been TTC for 15 months since the miscarriage and are finally being referred for a Hysteroscopy and Laperoscopy to find out if Its Uterine Adhesions following the surgery. (I know you shouldn't self diagnose but I diagnosed this months ago as my periods are almost non existing and really really painful!)

I've obviously googled and found out as much as I can. It seems to be the cause of infertility before but I've read that if the Adhesions are mild then after surgery to remove the Adhesions you could be fine, but if they are severe then you may still not be able to conceive and if you do then it might not be able to carry to full term, which has really scared me. It even talks about looking to get a surrogate or adopt!

I've read so many threads and can't find anything about other people's experiences so thought best to start a new one. I know I need to just wait for my appointment but waiting times are so long and it's so hard just waiting around!

Has anyone had this and have any experiences to share?

Hello, I’m not exactly same as you but thought might be useful, I had d&c in July, then cp in August. Since that I can’t get pregnant and my periods have changed totally. I get big clotty heavy periods with nipping pain and strange period discharge. The length of cycle has reduced from 27 days textbook perfect period to 20. I ovulate earlier too.

I know something isn’t right so going for a private hsg is next step

Hi, I had a hysteroscopy to remove adhesions a few days before christmas. They were relatively severe and so my consultant put in a copper coil contraceptive and put me on hormone therapy for 2 months to see if my lining can regrow. The consultant said that once I am off the hormones hopefully I will be able to grow a lining with a good thickness without drugs and then we should be able to get back to TTC with a much improved chance of success. So even if your adhesions are severe it would hopefully still be possible for you to conceive and carry naturally. The most important thing I have found is getting the right consultant who would be willing and able to perform the surgery, I had two other consultants who told me that there was nothing they could do.

Thank you both for your responses.

@summertimehere it's hard when you know somethings not right but there's nothing you can do about it, and I've found it takes so long to be taken seriously! I hope you get some answers soon.

@MummyToALittleMonster I've read it can be difficult to get a good consultant to treat this also. How did it work for you? Did you go through NHS referrals or did you have to go private? I would hope - as in your case - that if my consultant wasn't confident they would say so and I could go elsewhere. Fingers crossed this has worked for you and you'll be able to go on to conceive. Do you need to have another hysteroscopy to check everything is all okay or can this be checked by ultrasound?

I found a consultant privately (Miss Kamilia El Farra at the Rivers Hospital in Sawbridgeworth just in case you are in the Herts/Essex area) who then referred me back to see her on the nhs. With hindsight I should have just had her do the operation privately as it was an 8 month wait to get it done on the nhs. The first consultant I saw was willing to do the hysteroscopy to look at the adhesions but couldn't remove them and the second wasn't willing to even do the hysteroscopy on the nhs as I already have a 4 year old daughter. They check the regrowth of the lining with ultra sound.

Uterine adhesions don't seem to be something that are treated all that often, probably because they are not all that easy to diagnose. I had similar symptoms to you with very long cycles and very painful periods but because I was TTC I found that doctors often didn't take it seriously as a medical problem and just suggested trying private IVF

Good luck with your referral, I hope everything goes smoothly

I had adhesions, and Asherman's Syndrome, following the birth of Dd via c section.

I had no bleeding for 2-3 years, no periods, a lot of pain for 1-2 weeks if each month and infertility.

I was eventually diagnosed a few years later after a particularly useful locum gp referred me for assessments and investigation.

In the end I had treatment to remove them via laser surgery and then intense HRT treatment. It took two bouts of treatment.

Afterwards I had a return of periods and a massive reduction in pain. For many people their fertility returns. This wasn't the case for me, though I only tried cloud and didn't go down the other fertility treatment paths.

It's been a few years now and I do wonder at times if some adhesions may have returned, though no where bear the same extent.

Key for me was getting referred and the sooner you can get that down the better for the outcomes I believe.

I did have a thread or two at the time re The Ashermans.

Thanks everyone for your responses, it's nice to talk about it and to hear other people's experiences.

It confuses me how it's hard to diagnose as my consultant did an ultrasound and could see my lining was too thin so knee to refer me. Perhaps its lack of knowledge in the area rather than just being hard to diagnose.

I didn't realise it was so hard to find a consultant though. I've done a little research into mine and it seems he does the surgery. I chased the hospital yesterday and all they could tell me was the wait would be 'many' months. Not helpful. @MummyToALittleMonster when you saw your consultant privately and she referred you, did you get an appointment for surgery soon or was it ages?

@Aragog Are Adhesions and Ashermans the same thing? Sorry to hear that you haven't regained your fertility, it's so awful that this can be a side effect of surgery. This is what scares me the most, knowing that I was fine before the miscarriage.

Have you had any explanation as to why your fertility didn't return? I've read that lasering may not be the best way to remove them and that they should be cut away, just wondered if they commented at all on that?

Was it your choice not to look into other fertility routes?

Hi, I also suffered from periods that only lasted 2 days but were really painful. I was also suffering from infertility and I had 3 failed cycles of ivf. I knew something was wrong as I had an op to remove fibroids, and then after the ivf, an op to check for adhesions. The doctor managed to perforate my cervix and said he was unable to even get up there!
I did loads of research like you as I wasn't getting much help and came to the conclusion that I had Ashermans syndrome. I then found a private doctor who was expert in the field called Mr Adrian Lower near Harley street. He managed to remove loads of adhesions. My periods were much better and I conceived naturally 6 months later! I have had 3 pregnancies since even though I was told I had less than 5% chance of conceiving.
It was a hard slog but worth it.

I think he laser cut?
Also although I did carry full term with 2 , i lost my first at 20 weeks due to cervical incompetence but that can be linked to the sheer number of ops I had. I then had a semi permanent stitch placed which allowed me to have almost normal pregnancies

@Harveyrabbit76 I can't believe it took for you to research and find someone yourself and it hadn't been noticed before with the IVF etc that you had! I was convinced months ago that this was what I had and I only wish I'd pushed the doctors more or had looked to go private back then.

I've read quite a bit about Mr Lower so that's interesting. I was hoping to find someone more local but really don't want to end up with someone who doesn't really know enough about it. I'm assuming you would recommend him?

5% chance is insane. Congratulations on your successful pregnancies and sorry to hear about your loss.

Can I ask how you felt through all of this? Right now I can't help but feel quite angry that this is someone's 'fault' but am not sure if that's unreasonable.

Maybenextmonth after I saw my consultant privately it took me 4 months to get an nhs appointment with her for a consultation so she could put me on the waiting list for the operation which took almost another 4 months. My consultant only works part time for the nhs though so you might not have to wait so long. I'm not sure why but my adhesions couldn't be diagnosed via ultra sound, I had a HGS and then an MRI and even then my consultant wasn't sure if the adhesions were there until the hysteroscopy. Maybe it depends exactly where they are.

Hi Maybenextmonth

Yes, don't even get me started on the IVF clinic I went to, I am sure they were charlatans. They even did a saline scan (another £400) which apparently showed everything to be normal although they did mention my womb was a weird shape?! But you get into a strange state where you just keep going with the treatment.
I went to Mr Lower as I just wanted to go to someone who knew what he was doing, I was sick of being pushed pillar to post. I really recommend him, just a really calm guy who didn't say everything would be sorted but gave me hope that I might have more of a chance.
Just go for a consultation if you can afford it.

Being told I had less than 5% chance of becoming pregnant was probably the lowest of the low, I really struggled but I didn't want to give up. I just tried hard to be positive. We were due to go with donor eggs (I also had very few eggs) and the month before due to start I became pregnant.
Unfortunately losing that baby made me really question everything and how unfair life was. Infertility was hard enough, let alone thinking you had lost the only chance you had. Even before then on the ttc journey, I used to dread hearing of friends' pregnancies. It was a body blow each time. I think you can't imagine how lonely it is until you have been through it?
So I totally think its reasonable to think its all unfair, because it is! Its also part of the grieving process you go through when thinking you might not have children.
It definitely affected my marriage but we had 7 years of stress and waiting so only to be expected. Glad to say we are on the path to being happy again now :-)

Maybenextmonth

Ashermans are uterine adhesions. Not sure if there are other forms.

Yes, it was my (and dh's) choice not to investigate further fertility treatment. The tests indicated no issues with either of us, but we just decided together to not go down IVF etc and to settle with one child. It took a while to come to terms with and tbh we never actually did anything to prevent pregnancy - it just didn't happen.

I saw my consultant a few years back now. I was lucky to discover someone local at our teaching hospital with experience of this, and he came with good reviews. They considered various options and at the time this was option they felt would work best.

To be honest at that point my main concern was to stop the pain more than anything else as I was missing days of work most months as a result of it. And in that way the surgeries and hormone treatment after were successful.

The treatment wasn't easy going though. The hormone treatment was really hard at times, way more so than the surgery.

Hi ladies, was wondering if anyone fancied chatting about this again... I'm the OP and was originally asking about experiences with Ashermans. I was struggling a bit so stopped using mums net for a while. One thing I've found about research and looking through historic threads is that they often stop and you never find out how they got on, so i wanted to update in case it's helpful for anyone else in the future.

I finally got my diagnosis in Feb after having the Investigative surgery and this surgery was also used to remove my Adhesions. I had a follow up Hysteroscopy this week after having the copper coil fitted during my original surgery and being put on Estrogen. All looks good. One small adhesion had come back which was removed during the procedure. So I've been sent on my way and he wants to see us in 6 months if we've had no luck conceiving.

I feel so lucky that we fell into the hands of my consultant and had a quick diagnosis.

@MummyToALittleMonster I was wondering how you've been getting on now it's a few months post treatment?

Hi @Maybenextmonth, I'm really glad to hear that things seem to be going well for you. I really hope that you get your BFP soon. My first round of treatment with Estrogen post-surgery didn't go well and I didn't manage to build any new lining that would stay put! I've been on Estrogen patches rather than the pills for about 6 weeks now and am due a scan in a couple of weeks to check thickness of the endometrium. If its grown back to a reasonable thickness then hopefully I can have the copper coil removed and get the all clear to try TTC again.

Thanks @MummyToALittleMonster , we are finally starting to feel a little positive, I guess we have no idea what will happen but I did have my lining measured and it was 7.6 compared to 0.3 prior to treatment. So a significant difference.

Sorry to hear your estrogen didn't work so well the first time, did they say why that might be? Do you know what the thickness of your lining was? I do worry now I've had the coil out that it could all form again but just trying to stay positive.

Have they checked for any regrowth of your Adhesions? Assuming all good? It's nice to have someone to talk to whose going through the same.

7.6 is a good lining thickness so that definietly a positive sign.

I was on 6mg per day of Estrogen with the pills but had a major bleed after about 6 weeks and lost all of the lining so when I went for the ultrasound there was literally nothing there. I'm now on a 50mg patch that lasts for 4 days, not sure exactly the difference in terms of dosage with the two different types of hormones but I'm keeping my fingers crossed that it works better this time.

I wont get another hysteroscopy to check on the regrowth of adhesions as I already have a child so I'm pretty much at the limit of what I can get on the NHS so I'll just have to hope that they dont regrow.

If your on Facebook there is an Asherman's support page called 'Asherman's Syndrome Support UK & Ireland' where you can find lots of people going through the same thing