INFO ON ST MARY'S MISCARRIAGE CLINIC LONDON PLEASE

[godwin]

I had my appointment with my consultant yesterday following my 2nd second trimester mc(4th consecutive mc). He was great and explained in detail all results he had from my bloods, placenta/tissue testing and post mortem. All bloods came back fine and there was apparently no explanation yet again as to why i mc this baby(another little girl) who was perfect in every way no signs of any deformity or chromosome problem. He explained that he has now tested me three times for everything he can so recommends that we be referred to st mary's. I feel fine about going as it is another avenue to explore and prof Regan will repeat all tests done so far and test for other things aswell.I have read many things about this clinic on mumsnet and other sites but would really like to hear from ladies who have first hand exp of attending this clinic, perhaps even with succesful outcomes. How long did a referral appointment take to come through? I have 2 ds aged 7 and 4, and we decided to try for no3 in 2006, and since then it has been one traumatic experience after another, i know there are many ladies worse off than me, but yesterday brought to the surface all the emotions that i had managed to keep in check since aug my dh is nearly ready to give up but i just can't even think about that yet, i want to try again, is that madness?
If anyone has any info that may help at all that would be great. Sorry to go on a bit, i don't post often but thought i may get some answers from someone on here. Thanks in advance.

[Reesan]

Hi Emily, we have been trying for nearly a year so this came up apart of a fertility work up.
We are considering private and have booked a appointment at the end of January with someone called adrian lower who has carried out some of these surgeries. We are also trying to book an appointment with raj rai. Do you mind me asking what your consultants name is? When I was told about the septum the consultant at the clinic kept saying how rare this is and that there is only very few people who can conduct this surgery and to make sure it's done by someone who has expertise in this. I'm so freaked out by it all.
Did your consultant explain anything about the surgery?
I am sorry for all your losses.

[emily86]

The consultant didn't go into the surgery at the time as the hope was that the next pregnancy would be successful.

The consultant is called Dr Meenakshi Choudhary. I think she just does NHS work.

Obviously the surgery has risks, as do all operations. I'm a doctor (not in obstetrics or gynaecology I must add) so have done quite a bit of reading around it. For me the risks are low enough to give it a go. We've been TTC for just over 2 years now and in that time have had the 3 miscarriages and no successful pregnancies. Emotionally I think 1 more miscarriage is all I am prepared to put us through and therefore I want to do everything I can to give it my best shot. If it turns out there is a genetic problem which is more likely to have caused the miscarriages then I would think again.

[emily86]

Also, I meant to say, because of the nature of the surgery I don't imagine any surgeon does it very regularly but if there was going to be one anywhere I imagine they would be in London. I saw something on another forum that suggested Kings in London was the main place for surgery for uterine abnormalities but it was a from a few years ago so things may well have changed.

[Reesan]

Thank you for your reply Emily. Thank you for giving the name of your consultant.
I'm quite worried about the procedure and the risks attached to it. Please can you update if you decide to go through it the procedure and how it went? Thank you.

[Doughnutsandrainbows]

Hi Reesan,

I had surgery for redaction of a Uterine septum at St Mary's about a month ago. It was a day proceedure under general anaesthetic via hysteroscopy. It didn't take very long, although they didn't manage to do it all so I am likely to need to go back.

I hope this helps, although not sure if your issue is the same as mine.

Xx

[Reesan]

Hi Doughnut,
Thank you so much for responding.
Apparently I will need a resection of a uterine septum. However, I am due to meet Raj Rai yo confirm his thoughts. Do you know who did your surgery?
I have never been pregnant so not sure what he will suggest as I understand it's removed for recurrent miscarriages.
How was your recovery? Do you have a partial or complete septum? Do you know why they couldn't manage to do it all?
Sorry for all the questions and thank you for responding.

[Doughnutsandrainbows]

It's no problem. Dr Rai was the one who did my clinic bits and pieces, and it was Professor Reagan who did the surgery (I think - she was in the room at least).
Mine was after attending the reccurrant m/c clinic (NHS) as the only possible cause that could be identified, I couldn't comment as to what the approach would be if you haven't been pregnant before, my general understanding is that any type of proceedure is only carried out if necessary.
I had/have a partial septum. Recovery time wasn't too long - I had a week off but only really felt the effects for a few days... However that could be because they couldn't do it all... normally they would have fitted 2 coils for a month after to keep everything upright whilst healing and I cant say how that would have made me feel.
They told me the reason they didn't finish was poor viability due to a fair bit of bleeding, but I would rather that than them cut something they shouldn't! The worst bit was coming round from the anaesthetic as I was shivering and then getting the Tube back to where I was staying had to ask people to move so I could sit down
Obviously all surgery/patients are different so even if the same diagnosis you may not have the same experience/ recovery etc.

I was a bit nervous about the surgery but I think that was more as I dont know what to do if this doesn't fix the issue, I'm glad I've taken this step though given my circumstances. X

[Reesan]

Hi doughnut, thank you so much for the information. Was yours diagnosed through 3d ultrasound? As am seeing raj privately I wondered what things they may have me do. What were the other clinic things?
Did they not insert the coil in the end? Do you know when you have to do next procedure?
I can't imagine it being great getting on the tube afterwards.

I am nervous about the procedure and the risks involved.

[Doughnutsandrainbows]

No, mine was via regular ultrasound, MRI and hysteroscopy.
The clinic bits were bloods and results etc but that was the RM clinic, so it is unlikely to be the same for you.
No coil in the end as it wasn't finished, I'm the process of arranging another date with them.

Any procedure is always nerve wracking, and does carry risks, however my understanding is the risks attached to the type of procedure I had were small... No surgical incisions, but the Dr would talk through them with you.

[Reesan]

Thank you so much for all your help you have been so amazing. I really hope you have a successful pregnancy soon. Xx
Please do stay in touch on here and let me know how you get on. Xx

[Doughnutsandrainbows]

Not a problem at all. I'll try to remember. :) I hope all goes ok for you xx

[Reesan]

Thank you I hope so too.

[ness77]

So happy to have stumbled on this thread!

Had my first appointment at St Mary's today and the lovely consultant (Stephen Quinn) told me I would need a hysteroscopic septal division after seeing my scan. He did however tell me it could take up to 6 months to get an appointment for the procedure on the NHS which seems like an eternity especially considering I just turned 39 and time is not on my side.

Doughnut are you on the NHS and if so how long did it take for you to get an appointment for your operation? Was it long after getting the results from your blood tests (assuming you got the standard ones they do at St. Mary's too)? Apparently I can get it done privately right away but I wonder if there is much point if I'll only need to wait a few more months for the exact same procedure (and I can still ttc after my blood tests in the meantime).

Thanks so much for any insights you can share!! This whole situation really sucks but it is comforting to know others are in very similar sucky situations. I genuinely hope all goes well for you all ❤️❤️❤️

[Reesan]

Hi Ness,
It really does sucks.
I had my first appointment with dr Adrain lower who is based in Harley street and only does private work. I saw him on Monday and he explained to me that I have a partial septum. Whilst it is possible for conception to take place that hasn't happened in my instance so initially he was recommending to try conceiving for another 3 months. However during the scan he felt my anxiety was too much and maybe we should consider doing the hysteroscopic surgery if my next period arrives. He did explain out of all the surgeries he does this is the most low risk surgery and there is no cuts just straight through the vagina and he will cut back the septum and fit a coil or Stent and give me high does Oestrogen. The whole procedure privately will cost £4500.
However he will also xray my fallopian tubes while he's there and am already under general.
I have an appointment tonight with Raj Rai at St Marys so if you interested I will update you with what he tells me are Nhs waiting times.

Emily or doughnut any news from your side?

[ness77]

Thanks so much for the reply Ressen! Sounds like we're going through very similar ordeals. I can totally sympathize with the anxious feeling - especially when you just want answers and feel like time is ticking away.

The procedure you described sounds exactly like what my consultant explained to me. To be honest £4500 was less than I thought it would be to have it done privately so that's definitely food for thought since I think my health insurance covers some of that. It all really depends on the wait to get it done on the NHS.

Would definitely be interested in the information you get on wait times at your appointment at St Mary so please do keep me posted.

Hope it goes well for you x

[Reesan]

Hi Ness,
I met with Raj Rai yesterday and basically at this stage he is not recommending surgery for me. He went through my tests and amh etc and my hubby sperm results and as they are all normal he suggested I had a hsg to confirm fallopian tubes are open. As I have never been pregnant.
So I will do hsg and then he recommended waiting 6 months as am 33 but amh and afc are both high for my age.
If my tubes are blocked I will need to do ivf and then have septum removed.
So am just hoping my tubes are open.
So I will do my hsg privately and see what happens from there.
But one thing he was sure about was not doing surgery right now as he said that septum is not always a issue and in my case we don't know if it is an issue.
Please keep me informed in what happens with you.

[fbradf01]

Hi all, thought I'd join as I had Hysteroscopy last year at st Mary's under Raj rai. Interestingly I was told I had a partial septum at my HSG, also had adhesions from prior ERPCs but during the hysteroscopy there was no septum just looked that way on the scans! but adhesions all removed, coils fitted etc. Not pleasant but not bad either, actually the HSG was worse, defo take some painkillers before you go in!

I have bupa through work so went private and it cost about £3500. I've heard great things about dr lower as an ashermans specialist, there's a Facebook group if you want to know more on him.

[Reesan]

Thanks fbrad. Have you conceived since your procedure? Mine is definitely a septum which has been confirmed by 3 gynos on a 3d and then 4d scan by Mr lower.
Are you allowed to have pain killers before an hsg? Where did you get your one done?
Did you get results straight away?
I think if I do need to have the procedure more than likely I will pay and get Mr Lower to do it as he kept re irritating how low risk this is with no scarring etc
Interestingly he did say septum can grow back.. anyone been told that?

Did Raj do your procedure? What did you think of him?

[fbradf01]

Hi Reesan,

Yes I have conceived twice since my op but both have ended in miscarriage, so something else going on as well I think.
I had my HSG somewhere in central London, sent by Raj so probably the same place as you, think it was off Piccadilly. In the blurb they say you can take painkillers before it, I'd recommend them 30 mins before and strong ones 😀. There where 2 people one scanning and one with the fluid. They talked me through as they were doing it, showed me the images and explained what they saw so knew immediately something wasn't right. Raj then did my hysteroscopy a few weeks later and after I got to see the before and after pictures! I like Raj, he has been good for us and was recommended by a friend of mine. Mr lower gets lots of good reviews on the ashermans Facebook page though, so either way I think you're in good hands! I know the adhesions I had can grow and do in 10-15% of cases so guess it makes sense a septum can too?
When's your HSG?

[Reesan]

Hi fbrad,
Thank you for all the information. I will need to book the hsg once I confirm my period. I think I might do it with Mr Lower at 19 Harley street. I think it makes sense to do it with him because if I do need the procedure done I will most likely go with Mr lower.
Definitely will take some strong pain killers before I go.. eekk :(
How long did the whole thing last?

[Reesan]

Also sorry to hear you have had a further two miscarriages. Have you done some of the other testing at St marys?

[Doughnutsandrainbows]

Hi Ness77,

Sorry I haven't replied, not checked back here for a while. I got my initial referral in June and had my procedure in December on NHS with 2 clinic visits in the mean time, this timeframe worked for me. So 6 myths about right but inevitable bits in the mean time.

The only thing I would say is I live 4hrs from London and did find the many appts frustrating particularly for tests that I'd already had at my local RMC particularly the bits that I thought could be done over the phone/locally.

I hope that helps x

[Doughnutsandrainbows]

Also should probably add it seems to have worked as an now 12+2 the furthest I have ever got although still a long way to go and not out of the woods yet!

[Reesan]

Hey Doughnut, that's amazing news :) I'm so pleased for you. I hope everything continues to go well for you. I take it you didn't need the second surgery in the end?
This gives me loads of hope and fills me with positivity xx
Thank you so much for posting.

[emily86]

Hi Reesan,

Sorry for the late reply, it hadn't popped up on my feed.

So my update is when I went to the recurrent miscarriage clinic my 3rd miscarriage was due to a chromosomal problem (the embryo had a full extra set of chromosomes) and therefore the consultant didn't want to do any surgery on the septum. Basically we were told it was just bad luck, it shouldn't happen again and to just keep trying and fingers crossed next time. I then had problems with some retained products but fortunately that is all sorted now and we're on our first month of trying again. If I haven't fallen pregnant again by the beginning of November it is highly likely we will have to have a break for a few months because of my career so I I'm going to save up some money and have a think about paying for the surgery privately during this time.

How are you doing Reesan?

Doughnuts it is great to hear of your success after your surgery. I do hope you have a smooth and uneventful rest of pregnancy and get to meet your little one later this year.