Scars in womb preventing implantation - where to get specialist private help?

(30 Posts)
loveyogalovelife Mon 07-Nov-16 17:05:38

Just home from a hysteroscopy, bad news is that the camera found that the right hand side of my womb is all scarred, which means an egg can't implant. They couldn't scrape it off and they haven't seen it before / don't know what caused it. I'm losing faith in NHS as I've told them for 15 years there is a problem causing acute pain and dysmenorrhea in the RH side of my womb and they have never taken it seriously. I'm 43 and childless, and repeatedly having miscarriages which are devastating. DH and I are so sad and lost, desperate for help now. Can anyone recommend a private consultant? We don't know where to turn and afraid of being ripped off. No time to waste and this will stretch us financially. We also want to find out about surrogacy IVF if anyone has experience?

CordeliaFitzgerald Mon 07-Nov-16 17:48:26

Hi
This is also known as Asherman's Syndrome, I had it after an ERPC and infection. Sorry you are going through this, it was an awful time. I also spent ages trying to convince doctors and specialists that I had this but it is amazing how little knowledge there seems to be. There is a good thread on here from a few years ago if you search for Ashermans, and there is also a private Yahoo group that you can join.

To answer your question, you need to see an expert to fix this, anyone who is not sufficiently experienced can make it worse. I saw Adrian Lower in London who is generally accepted to be the number 1 in the UK. He was lovely and the whole process was really efficient in terms of getting an appointment really quickly and booking in for surgery around my availability. It cost about £5k all in.

Good luck!

loveyogalovelife Mon 07-Nov-16 18:08:50

Oh Cordelia thank you so much for taking the time to reply. I wasn't sure anyone would have been through it so I really appreciate your recommendation. I'll look him up right now... flowers

loveyogalovelife Mon 07-Nov-16 18:13:24

Apparently they tried to scrape it off, hope it wasn't made things worse... I'm gonna to think positive.

loveyogalovelife Mon 07-Nov-16 18:20:37

One more question (from DH)... did you have a successful pregnancy after the treatment or were you not trying? Thanks :-)

CordeliaFitzgerald Mon 07-Nov-16 18:47:58

Pregnant now smile Very early days so not getting excited though!

My surgery was quite straightforward - I had a hysteroscopy to remove the scars and a copper coil in for a month along with high dose oestrogen to encourage the endometrium to grow. Mr Lower was pretty confident in it and doesn't think there should be any issue now caused from the scarring (just trying not to think about all the other things that could go wrong!). The other thread on here had some positive stories about successful pregnancies.

I know it's easier said than done but try not to worry about it too much until you have spoken to an expert. I read so many horror stories, I'd decided I was worst case scenario when actually I was "lucky." If you can afford a consultation with Adrian Lower then I really recommend it.

Happy to answer any more questions you have, I found it so hard to find info on this.

Hollyandtheiveee Mon 07-Nov-16 19:08:20

Many of my friends recommend serum ivf clinic in Athens. They are really experienced in performing hysteroscopies prior to ivf, in order to improve results. Many women are surprised to find they have scarring - often due to hidden infections. You could try looking st the Greece section on fertility friends site for more info. There is a serum clinic thread there.

loveyogalovelife Mon 07-Nov-16 20:02:57

Cordelia that's amazing news!!! I understand why you don't want to get too excited, but I wish you all the luck in the world...

I've been feeling very tearful tonight so it's good to hear a positive story and of course you're right, it's a waste of energy to make up a story in my head before consulting the experts.

I've emailed the hospital tonight and will try to call Mr Lower in the morning. Who knows what the future holds, but at least we are one step closer to solving the mystery of infertility and recurrent miscarriages, which is actually a really positive step forward from where we were.

bananafish81 Mon 07-Nov-16 20:29:46

Also ask Mr lower about pentoxifylline while the coil is in

I'm not with Lower but I had some minor adhesions removed during a hysteroscopy (from a MMC and ERPC) and I've got a copper IUD and doing HRT plus a protocol from Dr Ledee involving pentoxifylline and vitamin E

That's had great results with women with Ashermans xx

CordeliaFitzgerald Mon 07-Nov-16 20:50:34

Thanks OP! I felt the same as you when I was finally diagnosed - on the one hand devastated that my suspicions were correct and I had Ashermans, but on the other hand relieved that I now knew what the problem was and could take steps to try to deal with it. Really hope it all goes ok for you!

loveyogalovelife Mon 07-Nov-16 21:02:52

Thanks Holly, I'm going to speak to Mr Lower first but will certainly look up the Greek clinic too.

Bananafish, thank you so much I will definitely ask about this; So you have been through it too, do you have happy news or still on the journey?

Cordelia, thanks for your good wishes, I'll let you know how it goes

xxx

bananafish81 Mon 07-Nov-16 21:17:20

Sadly not for me, I've lost two genetically normal embryos due to my crap lining, but my lining was crap before the ERPC too

My issue is to do with lining quality - although my lining is hard to stimulate, we did get it to thicken up eventually. However I don't menstruate properly - even with endometrial thickness of 9mm+ I don't get a bleed, I just get brown spotting and the lining reabsorbs

So the quality isn't there

The IUD is in to try and get me menstruating - the first month didn't work so this month we've added in oestrogen patches on top of the HRT pills

My issue is quite niche and not necessarily due to the adhesions - as I had crap lining even before my first miscarriage

We're looking into the endometrial biopsies like the Coventry clinic uNK cells biopsy and the Yale EFT endometrial function test, to get a better look at what the substrate of the lining is actually doing.

I am not a very good example of anything as I am a bit of a medical enigma!

bananafish81 Mon 07-Nov-16 21:19:03

(My first mc was a MMC at 10w and my second was a chemical at 5w. Both IVF pregnancies and both genetically normal embryos)

loveyogalovelife Mon 07-Nov-16 21:28:02

Oh Bananafish you have been / are going through so much. I wish you all the best of success with the things you are trying; it's not easy but do stay positive.

Yes I have been looking at Coventry for NKCs and it's still on my action list, but perhaps after this.

Would you at some point consider surrogacy? I've been reading about it tonight. These must be the most amazing women to do something so amazing...

But they are saying it could still take 3-4 rounds of IVF and that's plus the surrogacy expenses... And how to find a surrogate you really connect with and trust. It feels like something you watch on some kind of American drama show rather than in real life.

fabulous01 Mon 07-Nov-16 21:32:08

SERUM in Athens. Fortunately I didn't need that but lots of English girls go there. I did treatment there and can't rate it enough. Amazing place. Look on fertility friends for more info
Good luck

bananafish81 Mon 07-Nov-16 21:35:23

Thanks so much yoga (I too love yoga - have practiced iyengar yoga for many years now)

We are actively considering surrogacy as the likely option of last resort. I've been in touch with several US clinics and had a Skype consultation with one Dr about exporting our frozen embryos to the US for transfer to a gestational carrier.

We have 5 genetically perfect PGS tested frozen embryos and every Dr said we are excellent candidates for gestational surrogacy. These embryos have the potential to become a baby, the question is whether any of them can become a baby in me

With PGS tested embryos and a surrogate who has a proven ability to carry the likelihood of a live birth is high. The seeds are good, it's just they can't grow in my rubbish soil. In healthy soil the result is likely to be different. It's the astronomical expense and emotional trauma of going through the process - as UK surrogacy is all but impossible unless you have a willing friend or family member

If we can't get me menstruating within 6 months then it's pretty much not going to happen. And if that's the case then I don't know that we would 'waste' one of our precious frozen buns if the oven is on the blink

There is a question as to whether there is any point doing these diagnostics, as there aren't really any other avenues for treatment to try and get me menstruating. So if the IUD + HRT + pentoxifylline etc doesn't work then it's sort of academic what the biopsies show as we're pretty much shit outta options to solve the problem. But tbh I want to know more about why, even if we can't fix it. If that makes sense?

loveyogalovelife Wed 09-Nov-16 17:56:06

Wow Bananafish, you have really been going through it. And I'm sure it's not easy.

I have so many questions, I hope you don't my asking and that it's not insensitive to ask?

It's really encouraging news that your eggs are genetically perfect, you're way ahead of us...how do you get them tested?

I was looking at surrogacy agencies in UK, sounds as though you have pretty much ruled them out? And that you think the US is the best place to go and you may be able to recommend some contacts?

We're seeing Mr Lower on Monday in London. I'm freaking out about what the hell the NHS Gynae did on Monday, because it was meant to be a straightforward hysteroscopy with a camera, but I woke up with a lot of bleeding and my womb is still incredibly painful. I haven't been able to speak to the consultant, only the registrar who came to see me after the operation and who looked about 12!! She said "we found a lot of scarring on the right hand side of your womb. We don't know why it is there. We haven't seen it before (I asked her to clarify and she said, they haven't seen this type of scarring on anyone before) and we don't know what it is". Then she said "He (the Gynae) tried to scrape it off but he couldn't". And that they were going to ask another Gynaecologist if he knew what it was (they showed me photos of the healthy left hand side and the scarring on the RH side).

Does that sound really odd and worrying to you? Surely if it's Asherman's it must be fairly common and they should know what it is? And what were they doing trying to remove it if they don't know what it is?

More worrying, I've done some reading about Asherman's and it all says that it should only be treated by someone who knows what they are doing, otherwise they could make it much worse. So AIBU to be extremely worrried and upset? I've been calling the Gynae's secretary all day asking for him to call me directly and explain, and also for a copy of my notes but she has told me he's too busy and if I'm in pain to speak to my GP. She doesn't see why I think I have the right to speak to him.

MrsFogi Wed 09-Nov-16 18:14:12

I had the same problem and had it sorted out by Dr Francois Rolet in the American Hospital in Paris and went on to have dcs after that. All the best!

loveyogalovelife Wed 09-Nov-16 19:29:54

Mrsfogi, thank you so much for sharing your story and more encouraging news. There is still hope and I hope Mr Lower will be able to help. So you think it is probably Asherman's too? It's just scarring not webbing. You can see the healthy left hand side with the opening of the tube, and the scarring on the right hand side. Assume this is why I am have been in absolute agony each month, for 15 years, throwing up and fainting for 3 days flat unless I took pills to stop me ovulating. They couldn't find endometriosis so they said there was nothing wrong and told me I was exaggerating. Then I had the miscarriages and I told them the pain was in exactly the same place on the LH side of the womb, but no one would listen. angrysadblush Thank god I finally have an answer, at least, but at my age I hope it's not too late

loveyogalovelife Wed 09-Nov-16 19:31:51

Here's the pic, they went mad when I snapped it on my phone and wouldn't let me look at my own notes...

loveyogalovelife Wed 09-Nov-16 19:34:34

Sorry pain has always been in RH side of womb, typo.

CordeliaFitzgerald Wed 09-Nov-16 20:31:23

Even though Ashermans is quite common, it doesn't seem that well known about. The first gynaecologist I saw knew nothing about it at all, but asked one of his colleagues who had heard of it. That doctor then tried to do a hysteroscopy but realised once he got in that he wasn't experienced enough to treat the scarring. He then spoke to the rest of his colleagues to find someone who could treat it and the only name that came up was Mr Lower. When I told my GP about it, he'd heard of it but never met anyone who had it in 20 years of being a doctor.

I don't think you should worry too much about them having done more damage with your recent hysteroscopy. Scars take a long time to form so any new damage can hopefully be easily dealt with by Mr Lower. Seems like you have not had great treatment though and you should definitely keep trying to get a response from your consultant - it will help you at your appointment on Monday. My NHS consultant was great at answering emails so maybe try that, or speak to your GP and see if she can try to get hold of the hospital. Your GP will want your medical records updating anyway.

Great that you got an appointment with Mr Lower so quickly, you're definitely in the right hands!

loveyogalovelife Wed 09-Nov-16 20:50:28

Thanks Cordelia. But I do find it bloody ridiculous that the minute the registrar left the room I googled "scarring in the womb" and got this...

loveyogalovelife Wed 09-Nov-16 20:52:52

So how could they not know? Worst case they could have googled it themselves before scraping the hell out of me. Still in agony 2.5 days later

CordeliaFitzgerald Wed 09-Nov-16 21:13:32

yeah, I know - it's shocking. I got my treatment privately, and the first gyno who knew nothing charged £200 for a 10 minute appointment to tell me he knew nothing. If I hadn't already done all my research myself, I wouldn't have known to push to see someone else.
Hopefully your appointment on Monday goes well, and you can then think about complaining about your treatment.

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