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.

[sheeps]

Hi

I had my first appt at St Mary's last week - it came through quite quickly and so from referral to appt it was about 4 weeks. They then do tests, uterus scan, hormones, blood and chromosome tests and I will then go back 6 weeks after the first appt for more blood tests, and then four weeks after that to discuss any findings.

I didn't get to see Prof regan though - did ask - but they said no, although they were incredibly busy that day.

Good luck with it all and I hope your referral comes through quickly, take care.

[oinker]

I have been at St Marys for over a year now.
Lesley Regan is very picky with ho she sees. You will get to see her at least once. The others are Raj RAI, nice guy but a bit eccentric. Etienne Horner is the best out of the lot of them. I used to see Raj but then this changed for some reason. I now see Etienne. They are good at what they do but only do the basics with tests....Heparin, Progesterone,Aspirin and Steroid(prednisoline). The steroid treatment is administered but you are not tested at St Marys for Natural Killer cells. Even if they prescribe it to you, you are not tested to check everything is alright. Mind you, all you will want is a weekly scan and they will do that. I am having to go to Liverpool womens hospital for this NKC test. I will self medicate if I am told I have the NKC as St Marys will not give it to me as I am too fat..BMI over 28!! I have told them that I have had the same steroid for a skin condition and they still won't budge....
If you check out some of my posts in april 2008 you will get the drift of what is going on with me....
I have had 7 m/c's in nearly 5 years
I wish you all the best....They are a good team...............

[HappyThoughts]

Sheeps - Wow. I thought the waiting list for St Mary's was much longer than that. Do you mind me asking - was that NHS or private?
Do you live within their catchment area?
Were you referred by a GP or a consultant?

[annie4]

Hi Godwin
I am at the St Mary's Clinic for recurrent miscarriage. I was under Lesley Regan but then swapped to Raj Rai. He is great - very knowledgable and listens to your concerns etc. He is also a great surgeon. I couldn't recommend him more highly.
I have been going privately - the initial referral took 3 months to see Prof Regan, but then when I swapped to see Raj - it only took a day - he saw me at less than 24 hours notice.
Good luck and hope things are successful for you
Annie

[sue10]

Hello ladies,
i was referred to St Mary's and the waiting time was about two months private or 6months on the NHS, if i'd lived in the catchment area it would have been sooner. However i decided to go elsewhere in the end as St Mary's are fine if you do not have immune issues (other than APS) but will not test for things such as nk cells/ TH1 and TH2. CARE at Nottingham and the ARCG in London seem to test for everything (chicago tests level 1 and 2). Best of luck everyone.
XXX.

[ono]

just heard about prof regan and st mary's recurrent miscarriage clinic today as i have become inqusitive about this matter my story is 3 miscarriages in a about a year (august 2007, april 2008, nov 2008) at approximately between 10 and 14 weeks. have done all test, scans and post mortem. nothing seems wrong with me or the babies. in fact i have given up hope of finding a solution in uk, until i stumbled on sites including this which has given me hope that i can still get treated here.
can my GP refer me to st mary's clinic and how long does it take to get the first appointment?, as i can not wait to get seen by someone who will be able to help me and perhaps to start the investigations and treatment before another pregnancy comes.

[raining]

i m also in the same situation as oinker on unexplained recurrent miscarriages. I live in Asia (Singapore) but I have become so desperate to find a solution that I have gone to US Cornell Reproductive clinic to find the solution. Cornell suggests PGD (Pregenetic Diagnosis) plus aspirin and heparin as the solution as their suspcioin is that I have egg problem and a borderline immunological problem. After going through the whole treatment at Cornell in US, it turned out to be worst than any other cycle. I am thinking whether St Mary London can offer something different. In my country, the doctor will prescribe low dose aspirin together with heparin injection for me. But it seems that St Mary's solution for recurrent miscarriage is also no difference - aspirin and heparin. Right ?

[sue10]

Hi raining,
you are correct that St Mary's do use aspirin and heparin as part of their treatment, steroids aswell i think BUT they do not use humira or ivig which other clinics use to help maintain a pregnancy.
The main clinics that other ladies mention alot are:

the ARGC in London
CARE at Nottingham (Dr George Ndukwe)

Have you had level 2 chicago tests carried out which looks at in depth immune issues such as nkcells?

Hopefully others will pop along and share their knowledge and experiences with you.
Best wishes
XXX.

[raining]

Hi Sue,

Thanks so much for your prompt reply. I think both my Singapore clinic and US Cornell has done quite extensive test regarding my immunology. Tests ofI have done include : (1) antiphospholipid symdrome evaluator (Cardiolipin IgG/Cardiolipin IgM/Cardiolipin IgA/Phosphatidylseine IgG/Phosphatidylserine IgM/Phosphatidylserine IgA/Beta 2 GPI IgG/Beta 2 GPI IgM/Beta 2 GPI IgA), (2) natural kill cell quantification, (3) Lupus anticoagulant- I tested negative for the above tests and not a typical immunological problem person. However, I am found to have a problem with PAI-1 4G/5G Genotype which is saying that a copy of my genes is lacking of the substance which avoid blood clot and that alone can lead to miscarriage - so asprin and heparin is needed for my pregnancy. However, during the last miscarraiges, I was on aspirin and heparin and it doesn't seem to help that is why they think I have egg problem as well.

My doctor in Singapore and US Cornell does not recommed ivig as they said it's not well tested and established and can be quite risky. What is humira ?

Look forward to hearing from you.

[sue10]

Hi again,
like you i have tried aspirin, heparin, steroids which sadly did not maintain the pregnancies so the next stage that people here seem to follow is trying humira (a drug that's commonly used for people with auto immune issues such as rheumatoid arthritis) and some people use ivig aswell. All the tests you mention above i have had aswell, i think they are considered to be the level 1 tests aswhere the level 2 tests are actually sent to the USA where they are tested in a clinc looking indepth at immune issues. I dont think hospitals/clinics in the UK have this facility as in the US they can actually see what drug and how much is needed to lower the nk cells, th 1/th2 etc... It's so difficult to know where to go next isn't it, hope you do find some asnwers. Hope this helps, sorry if rambling on!!!!
Takecare.
XXX.

[barley2]

Hi

Has anyone heard about a Dr at the Portland hospital? My sister went to see him regarding secondary infertility caused by immunological problems (problems with partner's blood type) more commonly associated with miscarriage. After 2 recent mmc's I have a strong beleif that we have the same problem (same blood types tragically) and understand that this is one of the few Dr's specialising in these isssues. I have also read that Lesley Regan at St Marys is very sceptical about immune problem treatments although she does acknowledge the problem.

[panayiota]

Hi I know this is an old discussion but I thought it may help others.I am a self-refered pivate patient at this clinic so I do not know how long it takes to be seen through NHS.It did take 3 months waiting list to see Reagan though.Dr Rai is my doctor and has prescribed only heparin injection for my problem.I am no doctor and cannot make any judjement but having unfortunately seen many great doctors in many countries what I heard is that aspririn is considered to be outdated and not helpfull .I did took aspirin(no heparin) in another pregnancy and it didnt help.

GOOD LUCK TO ALL OUT THERE

[dezzy1976]

Hi Ladies,
I've just had my 3rd mmc and am awaiting a referral to St Mary's. Any happy ending stories out there? I'm recovering from surgical management at the moment (op was last week), but I'm hopeful that I will have recovered and had 1st AF by the time the appointment comes around.
Good luck to all of you still putting yourselves through it.

[Polka2]

Hi I'm bumping this as would be interested to hear people's experiences/views or info on fees for this clinic, too. Thankyou!

[squizita]

I was referred via NHS to St Mary's in early May. Appt is for Early Aug. They are my local clinic so I haven't been referred via another consultant so my case is less 'serious' hence the wait.

[SarahT198521]

I was referred to St Mary's end of March. Was seen mid June. At first appointment they spotted my problem, I had an abnormal shaped womb. This had not been detected in numerous scans by my regular Hosp. They booked me in for straightforward surgery beginning of July. I was pregnant by end of Sept and am now nearly 19 weeks. They were all amazing. They gave me early scans at 6 & 9 weeks to check all was ok. If you're referred here you really are in great hands. Hope this message gives some of you hope, never give up!

[ClaireeeD]

Hi SarahT, I had my appointment at St Mary's yesterday and was told I have exactly the same as you an abnormal shaped womb, I'm booked in for the surgery in March, can I ask if it is a straight forward procedure please as I'm pretty daunted about going ahead with it? Thank you and Congratulations on your success :) x

[SarahT198521]

Very straightforward, I was scared but done under general anaesthetic and out by early afternoon. A bit sore afterwards but not too bad. Three/ four days off work should be fine. I had a sub septate uterus. After a month of hormone tablets to help the healing we were given the green light to go again. We conceived the following month. I'm so happy with St Mary's they are amazing and I am having a child because of the work they did.

[ClaireeeD]

Thank you so much Sarah this has really helped my decision! x

[Koalina76]

Hi,

I have an appointment at St. Mary's in March as I had 3 mmc. I have only waited for few weeks to get the appointment. I have already done many tests with my consultant and they all look fine. Done nkc too and cytogenetic test too. I have a 3 years old girl and we really would like another one. May I ask you a bit more about the abnormal shape? How did they spot it? Just scan? I have had many scans...it would be a kind of good news for me to have the same issue considering that it can be solved even thou I don't think so as I have already a daughter.

Many Thanks

[irena78]

Hi
I was told about St Marry's by my ivf consultant at Chaucer. Nhs referred me to him and once he reviewed my record suggested this. Medway, never even told me that this was an option despite 4 recurrent miscarriages. I am now trying to get a referral and am not getting anywhere. Do any of you know what the costs are if I ware to go privately as I can't find the info on their website?

[Reesan]

Hi Claire & saraht
Really hoping you are still here and can give me some advise. I was recently told about a septum in my uterus and I will need to have it removed. Can you tell me the name of the surgeon who did the procedure or doctor you had at St Mary hospital? Also could you tell me about the procedure, how long it took, how long you were in the hospital? Any information as am a nervous wreck. Really appreciate any response.

[emily86]

Hi Reesan

I can't answer any of your questions but thought I'd jump on as I'm in the same situation.

I've just had my 3rd MC. I found out a few months ago that I have a partial bicornate subseptate uterus. The consultant who did the 3D scan advised that she would recommend I had surgery on the septum if I had a 3rd MC. As I'm now in that situation I am planning on asking get for the surgery when I go to the recurrent miscarriage clinic.

Have you had miscarriages too? It is all so difficult and stressful.

[Reesan]

Hi Emily,
I haven't actually had a miscarriage. I had a fertility MOT done in London and when they did the 3d ultrasound that's were it was noticed.
So glad there is one person to speak too as it's seems looks of these procedures are carried out in the US but finding women in the UK with stories has been difficult.
Are you in the UK? Have you managed to find a suitable surgeon to conduct this surgery?

[emily86]

I live in the UK, in the North East. The surgeon who carried out my 3D ultrasound said she would do it. She is also one of the consultants who runs the recurrent miscarriage clinic so I'm hoping we will see her then. My appointment should be around the end of January/beginning of February so not too long. Because of my miscarriages I don't see much point in trying again unless something has changed (like having the septum removed) or there's some kind of treatment I can take.

I'm afraid I cannot help with surgeons around London but I wish you luck in finding someone who can help. Would you be looking to go private? I don't know if you would be able to get it done on the NHS if you haven't had any miscarriages. When I spoke to the consultant about it she said there is not a lot of research into it to support how much of an impact it has on falling pregnant/miscarriage which is why she wouldn't offer me surgery unless I had a 3rd miscarriage. Sadly that has now happened but at least we can now hopefully be proactive about it.