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Ashermans Syndrome

(29 Posts)
Bexnet Sun 07-Aug-11 11:16:12

Hi, I had a miscarriage in Jan 11 and had a D&C , since then i've had no period. I was having all the symptoms of a period and then no bleeding so i went to my GP who told me this was normal after a miscarriage. 6 months later still no period and lots of pain but no bleed so i went back and insisted that tests were done, i knew that something wasn't right. I had an internal /external scan and blood tests and all seemed healthy, they then sent me for a hysteroscropy and found that my womb is completely stuck together. They were going to do another d&c and then insert a coil but thankfully they didn't proceed as they couldn't get access (i've read since that this can make things worse). My consultant tells me that this is very rare and isn't skilled to treat me so she's looking for a specialist in the UK. Does anyone have any advice or recommendations for specialist in this area?

helenlouisey Sun 07-Aug-11 15:37:51

hi Bexnet, I'm so sorry to hear about your miscarriage and also your diagnosis with Asherman's Syndrome. I was diagnosed about 18 months ago, and needed two operations to treat it, which have been successful as I fell pregnant again in April this year, sadly this ended in a miscarriage at 7 weeks, but was nothing related to AS, a chromosonal issue. I had exactly the same symptoms as you and my uterus was scarred shut. There are two specialists in the UK, Mr Trew and Mr Lower, please PM me if you'd like their contact details, I have been treated by both of them. There is also a wonderful AS Yahoo support group which you can join through www.ashermans.org, and there is lots of information on the website and on the yahoo group. Sadly AS isnt as rare as most GPs and doctors think, but please dont despair, if you get treatment by someone who knows what they are doing you have a really good chance of getting pregnant again.
x

banana87 Sun 07-Aug-11 18:38:12

I don't have Asherman's but I have heard great things about Dr. Lower from another MN'er. Hope this helps and sorry about your miscarriage sad

Bexnet Mon 08-Aug-11 09:44:34

helenloiusey - so sorry to hear about your miscarriage, it really does sound promising though if you've concieved after AS...you give me hope. It would be great if you could send me both Mr Trew and Mr Lowers contact details. Are either of them covered on the NHS or are they private clinics? Do you mind me asking what the two operations involved? Please don't answer if you feel this question is too invasive.

Banana87 - thanks for your kind words, i'll certainly get in touch with Dr Lower after two recommendations

x

kat2504 Mon 08-Aug-11 10:58:49

There's a poster called MummyAbroad who had the same thing after an ERPC. She had surgery and is now pregnant again. She posted quite a lot about Ashermans. I'm sure if you look her up on here she may be able to help.

helenlouisey Mon 08-Aug-11 12:08:22

Hi Bexnet, Mr Lower's clinics number is 020 7486 2440, he only practises privately, so its not possible to see him on the NHS. Mr Trew practises privately at 92 Harley Street, and the number is 020 7034 1300. It is 'possible' in theory to see Mr Trew on the NHS but it's not easy & you have to fit a certain criteria, one of the ladies on the yahoo group posted some info on how to go about it, I will look it up & post it for you.

My first operation was a laparoscopy & hysteroscopy, normally you only need a hyst however Mr Lower was worried about my previous c section scar as it has quite a bad defect & he was considered re cutting it, in the end once he looked carefully at it during the operation it didnt need doing. In terms of the hyst, the scar tissue was cut away using micro sissors, and I had a coil put in for a month and a months worth of high dose HRT. Sometimes it's necessary to have more than one operation if the scar tissue is particularly bad or dense, my second operation was a very minor one, I had two very small patches of scar tissue left and I had a coil put in for 3 weeks afterwards, no HRT needed.

You are absolutely right that another D & C would be the worse thing that the surgeon could have done, so thank goodness they didn't. There are other AS doctors in the UK, if you join the Yahoo group you'll be able to see a list of doctors that other members have used and recommended. In terms of restoring your fertility the most important thing you can do to give yourself the best chance of getting pregnant again is the make sure you on let a doctor who knows what he is doing operate on you. I'll have a look now for the information on seeing Mr Trew on the NHS, unfortunately I wasn't eligible for treatment by him on the NHS as he is classified as fertility treatment and I already have a child.

x

helenlouisey Mon 08-Aug-11 12:12:37

Hi, information below with some tips on getting to see Mr Trew on the NHS

-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 )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!!!

x

Bexnet Mon 08-Aug-11 16:34:08

Helenlouisey -i've managed to secure an appointment with Dr Lower on Thursday so fingers crossed he'll be able to give me the answers that i'm looking for. Thanks so much for the information, I'll let you know how i get on.

I've also just joined the Ashermans support group and i'm just waiting for confirmation so hopefully that will help too. 2 days ago i honestly couldn't see a way past this and now i feel like its not a complete dead end.

Kat2504 - i'll look mummyabroad up, thanks for the tip.

helenlouisey Mon 08-Aug-11 16:43:24

That's great news that you've managed to get an appointment with Mr Lower, you will be in safe hands with him. He will probably want to do a scan when he sees you on Thursday, he uses 3D scan to look at the uterus for scarring. The great thing with Mr Lower is he is usually very flexible and able to fit you in for an operation quickly. If you have any information or an operation report that you can take with you from the D & C then it's always useful, but I went along without a single scan or report and it didn't matter. Also do you have BUPA or medical insurance by any chance? If you do you may be able to get them to cover it, especially as you're not having any periods, it is a medical issue not just a fertility one.

The girls on the Yahoo group are brilliant, the international board is very busy and active, there is also a UK sub group you can join once you're a member of the international board. You will get loads and information and support there.

Wishing you lots of luck for Thursday

x

Bexnet Tue 09-Aug-11 08:12:56

I've managed to get my consultation and scan covered on my BUPA insurance but i only have another 3 weeks left as i've just been made redundant and the cover will finish in Sept so i'm hoping Mr Lower can fit me in for any treatment before then.

I'll be in touch following Thursday x

helenlouisey Tue 09-Aug-11 08:15:55

Bexnet, if you can afford to cover the premiums yourself for a few months it may be possible if you speak to BUPA for you to have continuous cover from them , we did this when my husband left his employer and we wanted existing conditions to still be covered. There is a special department within BUPA that deals with it, maybe give them a call and see if they can help. x

Bexnet Tue 09-Aug-11 10:48:11

Thats great advice, i've been panicking about how we're going to pay for everything once this cover seizes. I'll give them a call. xx

helenlouisey Mon 15-Aug-11 08:26:08

Hope your appointment on Thursday went well Bexnet

X

Bexnet Mon 15-Aug-11 17:01:01

It went really well, I feel much more positive.

It was great to finally talk to someone who knew what they were doing. He did a 4d ultrasound scan and apparently my uterus is not stuck together so the information from my previous consultant was complete nonsense; I can't believe they got it so wrong. I do have a lot of scarring on the right side of my uterus so i'm booked in for a hysteroscopy on the 23rd Aug to have it removed and then he'll fit a coil for a month and i'll also have hormone tablets to help my lining grow. He said that we could start trying again in about 6 weeks but we might want to consider some help because the sooner i get pregnant the better. I'm hoping that he'll give me some more information about this when i go back for the op.

I'm battling with BUPA at the moment because they said that the operation could be classed as fertility, i explained that Ashermans Syndrome is a medical conditions and Mr Lower has also written a letter on behalf so hopefully they'll give me the go ahead tomorrow.

A week ago i really couldn't see an end to this but now i feel much more optimisitc. smile

helenlouisey Thu 18-Aug-11 09:59:01

Best of luck for your operation next week and I hope you managed to get things sorted with BUPA. I have to say they aren't my favourite people at the moment, I'm pretty annoyed with the small amounts they are willing to contribute to consultant and anesthetist fees from an ERPC Mr lower did recently, it is mad, they will pay more for a consultation with him which lasts about 15 mins than they were for an operation which must take up at least 4 times that amount of his time!! Just be warned even if BUPA do agree to cover you may be left with a few hundred pounds to pay, I think for my recent ERPC it will probably be about £500 I'll have to contribute. However they will cover all the hospital costs which do really mount up.

X

Bexnet Fri 19-Aug-11 15:06:46

All sorted with BUPA Helenlouisey, it was quite a battle but i got there in the end. They kept coming back to me saying that this was for fertility, obviously you and me know different so i had to get our brokers involved to move things along. There's a shortfall for Mr Lowers fees and the anaesthetist but they're covering everything else so that's one less thing to worry about. It is frustrating though that they only 'contribute' so little to these fees when they have no problem covering short consultation fee, madness!!

x

MummyAbroad Sun 21-Aug-11 18:01:29

Hi Bexnet,

Glad to see you are getting good advice and are in the hands of a specialist. I had no periods for 8 months following an ERPC and was eventually diagnosed and treated for AS by Dr Lower, I am now 29 weeks pregnant, you are in really good hands.

I have a lot to thank HelenLouisey for too <waves>, as she encouraged me to get in touch with the ladies on the yahoo AS support group who were fantastic.

I had to pay privately and remember that the anesthetists fee was 300 pounds ish. Well worth the money IMO, as you have found out the first surgery is the most important and a D&C with a coil really would have made things worse - well done for running away from that one!

best of luck xxx

Bexnet Mon 22-Aug-11 11:06:38

Hi MummyAbroad,

It really is great to finally get advice from a doctor that knows what they're talking about, i can't believe that i had to find Mr Lower myself but thank goodness i did, he's been great so far. Hopefully after tomorrow we'll know exactly how bad the scarring is and what the next steps are.

That's fantastic news about the pregnancy, congratulations!! How long did it take you to conceive after your treatment? When i was first told that i had Ashermans i honestly thought that pregnancy wasn't going to be possible but then i read posts like yours and you give me hope smile

xx

MummyAbroad Mon 22-Aug-11 13:19:07

Hi Bexnet my full story is over here,

but basically I had a hysterocscopy with Dr Lower, he found my cervix 100% scarred shut and a 1cm dense patch in the fundus of the uterus (like you I was also told before hand I was a dire case and there was no hope!), I had 6 weeks of high dose estrogen therapy - towards the end this was actually the hardest part made me feel all over the place! and then on the advice of Dr Charles March (AS specialist in the US who I talked to via email) I had an HSG. I got pregnant on the second cycle (naturally) after finishing treatment. I think the HSG helped with this (I did it because I wanted to be sure the uterus was completely clear but it does give you a bit of a fertility boost too, as it flushes dye through your tubes giving them a bit of a "jet wash")

I found that there are various schools of though re: conception post AS among the AS specialists. Dr Lower believes that the best chance is getting pregnant within 3 months of treatment (which is how it worked out for me) Dr Charles March believes that the most important thing is to get the uterus back to 100% healthy state and that after that it doesnt matter when you conceive, for this reason he recommends an HSG and mid cycle lining checks after treatment to see how uterus is doing and further surgery if necessary. I had a hard time deciding which approach was best and ended up doing a combo of both. By the way Dr March will read your emails/notes and review slides for free via email. He is very passionate about helping women with AS. His email address is linked in my original thread I think.

Have you discovered the NGO AS group on yahoo yet? There are FANTASTIC they are a group of around 2000 women with AS and their doctors, they have been collecting information for 10 years (lots of word docs you can download) and you can ask any questions you like, there is a real wealth of information and support there. You have to sign up as its a closed group, but it doesnt take long.

Lots of the women are in the US and have the same kind of insurance issues as you, most of them DO get treatment because AS is NOT a fertility issue, its a health issue and there is a different insurance code used. If you ask there I am sure someone can tell you what it is, hopefully Dr Lower's letter will sort it out though.

There are also lots of pregnant ladies like me, some who have gone on to have more than one child successfully after treatment. The common theme seems to be that those you go immediately to a specialist for treatment seem to fair the best outcome-wise. Sadly there are lots of stories of ladies whose AS got worse after non-specialist treatment. Stick with Dr Lower he knows what he is doing!

If you have any more questions, I am happy to help xxx

Bexnet Fri 26-Aug-11 15:27:30

It sounds like you've had a rough time Mummyabroad but great news that you've had a positive outcome. We're trying to decide whether to try naturally for a few months or if we should have a helping hand,I worry that if I don't get pregnant straight away then we might miss our chance. I've asked my GP about help with fertility and the NHS may not help fund us as I've been pregnant before even though it resulted in miscarriage,I find this very frustrating! I'll definitely get in tough with Dr March,we need all the advice we can get.

Helenloiusey recommended the group and also Dr Lower,it's overwhelming how supportive everyone's been.

Xx

pebspop Thu 15-Sep-11 12:48:38

i am starting to panic that i have ashermans.

i had a op to remove retained placenta 11 weeks ago following medically managed miscarriage at 20 weeks and have not had a period since.

i know 11 weeks for periods to return isn't unheard of but it's starting to stress me out as i am worrying about ashermans. i had an erpc in novmber and my period came back in the usual time.

i went to the gp this week but he just told me to wait and return in three months if nothing has happened.

i have got my consultant appointment to discuss the results of my miscarriage tests soon and will discuss it with them. i have also emailed dr lower to see what he advises.

what symptoms should i look out for? i have been getting ewcm on and off over the 11 weeks and have started charting over the last couple of weeks to look out for patterns. hopefully this will tell me if i am ov'ing and still missing periods.

would i be in pain if i had ashermans? i am not in any pain at all.
do you still get ewcm?

batteryhen Thu 15-Sep-11 17:55:11

Hi pebs. I am worried too. i know I have been ovulating and no period. I am 13 weeks post erpc, and am due on today. I also chart so know that I have ovulated 2 weeks ago. I have been for a scan today and all looks ok but apparantly you can't tell if you have scarring from an ultrasound scan. I have started to spot a bit today, but not much. I have an appointment with my consultant on the 27th so i will ask him too. Let me know how you get on - but also I think for your Dr to tell you to wait another 3 months is crap. Can you go and see another gp for a second opinion?

I was also wondering about the ewcm as i get quite a lot of cm all the time, and I am not in any pain either xx

pebspop Thu 15-Sep-11 18:36:07

i think my gp was being a bit of a dick really to say wait three months. i won't be waiting three months!

have you tried the hormone tablets - provera? that was what i was hoping the gp would give me but he said it's early days yet so just wait.

i have booked myself in for accupuncture next week so will see if that does anything. it's supposed to rebalance your homones and regulate your cycles.

i will also see what my consultant says on the 27th.

i am seeing my consultant to get the test results following two miscarriages.

*Battery hen*:
are you seeing your consultant for your lack of periods or something else? did you go to your gp? have you had any spotting beofre today? and when did you start charting?

batteryhen Thu 15-Sep-11 20:27:01

Hi,

I am seeing my consultant anyway for recurrent miscarriages - as I have now had 3, so I will ask him about my periods. This is my second erpc - my first one my periods returned bang on 5 weeks. I have always charted so I know what my post ov temps are like, so I took a few random ones a few weeks ago and realised I was post ov. So I started taking them regularly again. I have definitley ovulated again as I had my bloods done too. I spotted a tiny bit last time, and am hoping Af comes tomorrow. I am just really frustrated x

batteryhen Thu 15-Sep-11 20:29:55

Oh - and I think the provera is to sort out your hormones and induce a bleed, but my hormones are ok as I have had them checked x

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