thin uterus lining???

Hi there, I have read all of your messages, I have had 2 misscarriges now and this is due to a thin lineing, the specialist put me on Tamoxaphen and my lineing increased from 3mm to 7mm!
I have also been having accupuncture after previousley having cycles 32-46 days and for the first time in my life my last 3 cycles have been 28days on the dot!

I have done a lot of research on accupuncture and fertility and there have been proven studies that it works as well as helping you to relax.

The NHS have now withdrawn funding for IVF so am having to look at private so am trying everything I can...eat heathly and exercise is the general rule I have found (i have now lost 2 stone in weight (28lb).

Hi, I've just been diagnosed with ashermans, this was caused by late pregnancy loss. The doctor an asherman's specialist said that there is only one small area of scarring in the uterus which is mild. He say a he can remove it with one operation and there is no need for hormone therapy or a coil.

My questions are I have a choice of two dates for the hysterscopy and division of adhesions, first is cd4 and the second is cd15. Am I mad to pick cd4 as we want to resume ttc asap. I only bleed 2-3 days. How long is it before we can resume ttc? TIA

Hi Tel,

I would really encourage you to get on the yahoo group via www.ashermans.org I cant tell you how many times that I read that it is VITAL that the first person who operates is an AS expert. Many women have had to have more than one surgery and say that it is because the first person made things worse.

I know this is really scary, but I have just come through the other side and it IS possible to get this sorted out provided you get the right help.

I dont think a coil is any kind of treatment at all. You definitely need to ask this doctor, how many AS cases have they successfully treated before? (the woman went on to get pregnant) and how many they have done in the last year? Also will the surgery be performed under ultrasound guidance so that they are not working "blind"? Will they should use micro scissors and not a laser? and will you be offered hormone replacement therapy afterwards?

If you are going to do anything via NHS Dr Trew working out of Hammersmith is an AS expert, I would push to get the surgery done with him. On the yahoo site there is a database with lists of doctors and comments from patients that have used them. They also have a file which compares different treatments used by the "A list" doctors. (NO WHERE does it say a coil alone is OK)

I wonder if you can get BUPA to get Dr Lower to treat you only for AS and get the endometriosis (if there is any?!) done on the NHS or pay for it separately? Dr Lowers number is 0207 4874488, ask for his PA Gill, she is very nice I am sure she will give you all the info you need to get BUPA to help you. I got my appointment and surgery date extreemly quickly (he does like to fit surgery to your cycle though, timing it just before ovulation) Perhaps in a couple of weeks you can be all fixed and ready to enjoy Christmas too? I do hope so.

Let me know if I can help in any way, I know how scary it all is xxx

Hi tel1,

I had the AS treated with a hysteroscopy and the doctor said he was able to remove ALL the scar tissue. I am so pleased

I have a coil in at the moment which is to keep the walls of the uterus apart while it heals and am taking hormones for the next 6 weeks to help grow the lining. After that the coil will be taken out and I can start TTC. The doctor also said that I needn't worry too much about thin lining as he has seen many women successfully get pregnant with a thin lining.

I will be updating how it goes over on this thread:

www.mumsnet.com/Talk/miscarriage/1080899-Ashermans-Support-Thread-for-those-seeking-diagnosis-getting-treatment-or-TTCing-again-after-All-welcome

From what I have read from the ladies on www.ashermans.org an HSG can sometimes indicate a problem, but it cant always pick up AS, so if you are worried about that I would consider getting in touch with a specialist directly. Mr Lower is brilliant, he does BUPA patients too. He can diagnose AS via 4D ultrasound scan which costs £250, consultation costs £205.

Hope you are well xxx

Hi tel1

I finished the pill and didnt bleed at all. It spurred me into action and I contacted Dr Adrain Lower in London who is an Ashermans specialist and he agrees that I do have it. I am having surgery with him next tuesday!

I signed up with the yahoo group via www.ashermans.org and have got loads of information from other women with AS. Its a bit hard to get into initially but well worth it. I really recommend you give it a look. I have read over and over again that it is really important that whoever treats you first is an AS specialist, because someone who doesnt do this kind of surgery regularly often just makes the problem worse. Ask how many AS patients they have treated in the last year, and how many of those are now pregnant. If it is not someone who does at least one AS lap a month, request someone else. They should also perform any procedures under ultrasound guidance (rather than "blind") Also ask about the risk of infection and whether you will be given antibiotics during and after the procedure (you should be). A lot of doctors will put in a coil AFTER treatment, but I havent come across any women who have had just a coil as treatment, this does rather sound like you are being fobbed off. Definately ask about the risk of infection with the coil - infections can create more scar tissue and are to be avoided at all costs.

Sorry its all really scary stuff - but I am starting to realise that fear of having it put me off finding out what I really needed to know, and at the end of the day, you cant let fear stop you getting the right treatment you need. You might need to be pushy to get them to take an AS diagnosis seriously. I have seen 4 gynecologists and all were really reluctant to go down that investigative route.

Good news about the AC/bromelian - my bromelain amazon order never arrived so I couldnt try it in the end. Will give it a go after surgery.

best wishes
xxx

PS if you do have AS the fact that you have periods means that its more likely to be a mild rather than severe case, so as long as treatment is done by a specialist you would have excellent chances of a complete recovery.

How did you get on Tel1?

I found these two studies about the effects of low dose asprin on endometrial lining. Interesting stuff.

www.ncbi.nlm.nih.gov/pubmed/9389827

www.ncbi.nlm.nih.gov/pubmed/10911579

Thanks so much thats fantastic, I think I will get on the phone on Monday.

xxxxx

Hi Mummyabroad

Mr Lower's clinic can be contacted on 020 7 486 2440 and Mr Trew on + 4420 7034 1300. I would give Mr Lower's office a call on Monday, all his staff are extremely helpful, explain your situation and I bet Mr Lower would be willing to speak with you via phone or email about what the best thing is to do with regards to getting a diagnosis and then coming over to him for treatment. Mr Trew's number is + 4420 7034 1300. However before I was treated and tried to contact him with some queries I found it very difficult to get a response unless you make an appointment for a consultation (which would obviously be difficult for you being abroad)

Also there is a great doctor in America called Dr Charles March, he is based in LA. Would it be any easier for you to get to LA for treatment? I understand from other ladies on the AS board he really is one of the best in the world. His contact number is (310) 828-4008 (sorry not sure about dialling codes etc) and his email is [email protected]

I believe his he happy to give advise and help via email as well, and it is possible to arrange a telephone consultation and for him to review any tests you've had done already (for a fee. )

If you go on the files section of the AS board you will find a list of doctors who specialise in AS all round the world.

I was diagnosed by 3D scan by Mr Lower, I think HSG is a very good tool for detected AS, although a hysteroscopy is the gold standard. Mr Lower is very skilled, and knows what he is looking for on the 3D scan, therefore you usually get a diagnosis the same day you have an initial consultation with him as he scans you at the same time.

We don't know whether the infection was a result of the AS, it most probably picked up during the surgery at the same time.

Hope you manage to get a diagnosis soon and treatment sorted. Good luck

Thank you Helen!

Thats loads of useful info already! I would love the contact details please. I have signed up to the yahoo group, havent yet worked out how to make contact with anyone yet though. I saw Dr Lower speaking on a youtube interview about AS, he looks very good.

I think I would have to go private as I am currently living in Costa Rica and wouldnt be able to come back easily to the UK for any great length of time. However if I have a very severe case that needs multiple treatments I probably couldnt afford to do it. This is one of the reasons that I want to know about making the diagnosis with a non expert from over here.

My gyne tried to do a hysterosonography a couple of days ago but he said my cervix was too closed so was unable to do it. To be honest I am not sure I would have been able to believe the results had he been able to do it, as I suspect only AS specialists would know what scar tissue looks like? Dont know whether to ask for this again or go for the HSG for which he has already given me a referral (just waiting for some repeat bloods to be done first)

I found this study from 2005 saying that HSG only dedected AS in 60% of cases examined in the study, which is a bit confidence sapping.

How were you diagnosed? Was your infection connected to your AS treatment then? I guess there is always a risk with every type of surgery. I do hope the IVF works first shot! xxx

Hi Mummyabroad

Having an HSG done by your current consultant wouldn't do any damage, however which ever specialist you choose in the end to treat you will probably want to do their own HSG or 3D scan anyway. I think the main problem most women face is that Mr Lower only sees private patients and it is near on impossible to see Mr Trew on the NHS, especially if you already have a child, although one of the ladies on the Asherman's UK board has managed to see him, it took a long time and a lot of stress, I think she has written a document which you can access on the board with the information as to how she managed it.

If you have medical insurance or could afford to pay privately I would go straight to Mr Lower or Mr Trew, I can give you contact numbers if you would like them? It will be very quick, I had a confirmed diagnosis with Mr Lower in March, I was operated on at the beginning of April (you have to wait for the correct time in your cycle) and was given the green light to try to conceive a month later, as the Asherman's had been successfully treated. Unfortunately I also got an infection at the same time as the Asherman's Syndrome, which has damaged my tubes, Mr Lower tried to repair them but unfortuantely we've had to proceed with IVF, which we're currently in the middle of. We are very fortunate as we have a beautiful 2 year old son which does make all this a little easier, but still very hard.

Shout if you've got any more questions, but i'd definitely sign up for the board, both the international one & UK one as there is so much useful information & help on there.

Helen x

thanks Helenlouisey,

I have seen that site, I didnt join the board just yet, as part of me still wants to believe that I will get the all clear and wont have to!! Think I had better join up now though...

I have a question for you, I realise how important it is to get hysteroscopies performed by a specialist, but what about other forms of diagnosis? Would have an HSG or hysterosonography for example put me at risk of further damage if not performed by a specialist?

Did you manage to get your AS treated by the way? How are you now?

xxxx

Hi MummyAbroad, Just wanted to say if you are at all worried about having Asherman's Syndrome there is a fantastic support group and website www.ashermans.org/

I developed Asherman's at the beginning of this year, and had exact same symptons as you, ovulating, period pain but no bleed.I found lots of information and help from the girls on that board, they are so knowledgable. It is really really important you see a doctor who knows what they are doing and is experienced at treating Asherman's, and there are several specialist in the UK including Mr Lower (Princess Grace Hospital) and Mr Trew at Hammersmith, but there is a list of other on the website if you join the support group. Unfortunately most GPs will dismiss your concerns and continue to say that Asherman's is extremely rare, unfortunately it's not that rare.

Good luck

update from me,

I ditched the Red Clover Blossom very early in, made me feel like a lunatic - I was expecting no symptoms and a lovely placebo effect growing womb lining but its obviously powerful stuff, like the worst PMT and depression combined, too strong for me to stay on and see if it improves womb lining.

I also tried aspirin for 2 weeks, got rescanned and my measurements are still exactly the same. Worse, I found another load of websites contradicting the first lot saying it hinders implantation!(again no studies just heresay)

I have 5 more days left of the pill, I get the distinct impression that as long as I bleed when I stop it, my doc wont be bothered with the thin womb lining. So if anyone else out there has some more info, please share!

xxx

too late, already read it and I am as scared as hell!

I did sign a waver but that is to cover them with something that goes wrong the the GA. Scar tissue is not mentioned, no.

I have started to read stuff in a lot of chat rooms and realised that many women are prescribed strong drugs, (stronger than the pill) I definitely need a new gynecologist! Mine didnt seem to know anything about this and I only really found out because I asked to get scanned and the sonographer was very informative. He explained that 3mm was too thin for post ovulation (which I am)

In this interests of trying to beat this thing with every weapon available. I am going to try acupuncture too. Perhaps it will help with the fear thing as well!

xxxxxxxxxxxxxxx

tel1, more googling tells me that baby aspirin is also "recommended" (anecdotal evidence only though) to increase the uterine lining. I am going to be rattling when I walk

oooh sorry you are feeling rough. Thanks for thinking of me though. xxx

Sorry, Mummy, X posted! Ok, should have googled costa rica, will do when feel up to it. very feverish at the moment! sorry, i think i'm hallucinating! x

sorry, what was trying to say was that those who worked in the army had free health care, everyone else paid over the odds. it was cheaper to go private, i.e. non army, but obviously you got what you paid for. mil had a discount as her husband was a civilian worker, but her fil had been a lieutenant during his working life, so it worked out cheaper for her than going private, but she did have to pay, but she received a better level of care. Sorry, it's late, I'm feverish, hope i've explained that well. I'm off to bed again at this rate!

It was a halloween joke, but I have just changed back, I realise I am on way too many threads and will confuse everyone!

Its a great idea, but... Costa Rica has no army! The abolished it in 1947, one of the things that makes it such a nice country actually.

Still, you have got me thinking I do need to find a way to get some really good advice and care. I think I should try and make that my main focus. I shall cast my net wider...