three miscarriages, need answers

[Clara1]

I'm very new to this so please forgive me if I don't do it right. I have just had my third miscarriage in just over twelve months and am heartbroken and feeling so alone. I really feel I need some answers now as the "just bad luck" theory is wearing thin. I'm trying to get referred privately to someone who specialises in this field. However, time is always the enemy with pregnancies, and the person I have been recommended (Prof Regan at St Mary's, Paddington) can't see me until the end of June! Does anyone know of someone else who might be able to help (london area)

bump

clara1 so sorry to hear of your losses. i have just had a 3rd MC too. Know how desolate you must feel right now. Sorry I don't live in your area so can't suggest anyone , but if you want someone to chat to i am here

Clara1,I'm sorry to hear your news.I think there is a specialist unit at a Hospital near Manchester too.I remember one of the regular posters here talikng about it.

I'll have a search around & see if I can find out which one it was.

Found it-I believe that the Dr dealing with recurrent m/c is a Dr Seif & the hospital was St Mary's in South Manchester.
HTH

Mirage - Thank you so much for finding that name. I will look into it next week and keep you posted. I have already have an appointment booked at my local hospital in the middle of March which seems like ages away.
Sorrel - I'm so sorry to hear you are in the same position. It seems so cruel and unfair and I have found that the only people who really understand are those who have gone through it themselves. I'm still undecided whether talking about it helps or just prolongs the agony. But still early days yet. Have you been having any tests?

I seem to have stopped crying today (at last) but the tears have been replaced with intense apathy - can barely be bothered to go to the loo! I didn't have this after mc 1 or 2 - is this normal or am I on the first step to being officially classified as a nutter?

Hi Clara
I am really new to this site, but read your discussion and wanted to let you know that I know how you are feeling. I have had 4 miscarriages in the last 2 years and am currently 6 weeks pregnant and dreading every minute.
I am unable to suggest any specialists in your area as I am currently in portugal, but if you are able to go private for investigations I would highly recommend it. I have just had 6 months of private investigations which have thrown up some problems which would not have been seen in the basic tests they do on the health service. I am now on some medication and have everything crossed.
I too got to the point where I was being told how unlucky I was, but this didn't help I needed answers.
I'm sorry to hear that you are feeling so low this time compared to the 2 previous m/c, but don't give up - I have always said the only thing that would help me come to terms with the loss is to have a baby at the end, and that focus has kept me looking for answers which I hope I now have.
I'll finish my essay here, I hope you find someone to find some answers for you but in the mean time take care of yourself and never give up.

clara, Lesley Regan really is the top person in this field, so should be worth waiting for. her book (a green cover, i did have a copy but can't find it at the moment) is well worth reading, if you are the kind of person who likes finding out about medical stuff. a friend of mine had 3 m/cs in a year, got referred to Prof Regan who diagnosed PAPS (primary antiphospholipid syndrome) and she now has two beautiful children.

I don't think it's a sign that you're going bonkers, that you're feeling bad.

I had a miscarriage, DS1, miscarriage, DS2. Even though I knew I could carry to term, and had a lovely son, the second miscarriage was really hard. My GP said I could have some investigations into it (as I was 34 at the time), but I ended up just booking myself a special private scan, to check for uterine abnormalities. They didn't find anything, but I felt reassured that I'd done something.

I remember when I was investigating this for myself, there were a few possible types of causes: immune system, hormones, genetic issues, and uterine abnormalities. From what I can remember, hormonal causes generally also cause fertility problems, which you obviously don't have, as you've had three pregnancies in a year. So you have three other possibilities. How late were your miscarriages? Did you have any early scans to check viability?

If you can eliminate some causes, and look into what diagnostic tools there are (and what treatment tools, too) then you can narrow down your choices for treatment, and maybe skip a step, if you want to go private. I just straight to booking a scan for uterine abnormalities, as it was the only obvious cause (and would have explained DS1's persistent breech-ness).

(I am totally not a medical professional. I also haven't researched this stuff for over a year.)

Thank you all for your messages. I have bought Prof. Regan's book and have been trawling the internet and now feel that I am virtually an obstetrician myself! Have decided that I will wait for an appointment with Professor Regan especially as I have got an NHS appointment booked for March. So I hope that should give my body a chance to get back to normal. I think I am feeling SO frustrated by the whole business because I have got two gorgeous girls so know that I can have a baby. And I know that I can get pregnant quite easily - 3 times in the last year! So I am now totally at a loss to know why this is happening.
Missi - who did you see privately? I'm more than happy to let BUPA pay for investigations but don't know where to start finding someone who (a)knows what they are talking about and (b)who can see me quicker than Prof. Regan in June. (Hope Portugal is nice - I have never been there but we have just booked a holiday there for June, so feel I have got something to look forward to.)
Notquitecockney - thank you for your message. It really does help to talk to other people who know exactly how I'm feeling. No matter how loving and supportive friends and family are it's just not the same. I had some basic tests done privately after m/c2 but all came back normal. Before m/c2 I had an early scan at 7weeks and was told everything looked fine and there was a heartbeat. Then lost it at 11 weeks (although they thought the baby died at 9 weeks). So last time was too scared to go for a "reassuring" early scan only to lose it anyway. Lost this last one at 9 weeks but, just like the last time, they reckoned that the baby had not got that far and this time had died at 7 weeks. I have found the worst and most traumatic thing to deal with is the thought that I have been getting excited while carrying a dead baby.

Oh, Clara1, I had the same sort of experience with my second miscarriage - a good 7-week scan, then a miscarriage at 11.5 weeks. I still went for a reassurance scan when I was pregnant with DS2. Those scans are shown to reduce the rate of miscarriage, upsetting though they can be if wrong.

Frankly, fear of miscarriage is one of the reasons we're done with two kids. I don't want to go through all that again.

But one good thing - the good 7-week scan means (I think) that the problem is unlikely to be genetic.

Hi Clara, sorry to hear about your losses. I know exactly how you feel as I was in the same position this time last year. I managed to get a referal to Prof. Reagan and was advised a similar waiting time. Even a private appotintment was only a few weeks earlier too. After the 3rd I was prepared to go private however when I checked my BUPA insurance did cover me.

I was advised that I could see a Mr Rai who is a consultant that works along side Prof. Regan. His waiting times are much shorter. I did take up this offer and went private and I saw him within a couple of weeks. His secreatatry called me with a cancellation the following week I registered with him. He was fantastic, certainly knew his field, and at last acknowledged that I had a problem rather than fob me off with the “bad luck” response which my local hospital consultants kept saying. As he is part of Prof. Regan’s clinic,he follows the same procedures and conducts the same tests as she would. I had various blood tests taken, a ultrasound of my uterus, and two consultations. The procedures they follow can be downloaded from the St Mary’s website.

They found I had a form of PAPs too. From what I understand the test that identifies this is not done at local hospitals, or certainly not in mine. I have been advised suitable treatment for this and now hope I will go on to have baby. (We are again trying)

Perhaps call the clinic secretary to see if you can see anyone else other than Prof. Reagan. Her name is Mrs Aslan 0207 886 1050. She looks after the private patients and is a very helpful lady.

From my experience I would wait to see someone at St Mary's rather than look elsewhere.

I had two m/c and found Ruth Cochrane at Lewisham hospital very helpful and understanding. She runs the miscarriage clinic there and seems to be well respected. (am now pregnant at 13 weeks, so know how you feel).

Clio

I am interested to see that you have been diagnosed with PAPS, I too have this condition and am currently 6 weeks pregnant after 4 m/c. I am taking a right mixture of medication throughout this pregnancy ( which is apparently still in trial) I was wondering if they have recommended or started you on any treatment?
I have to take 2 folic acid per day, 4 progesterone,1 asprin, and am about to start heparin injections. I am curious to see what tratment you have been offered in the uk as my consultant is in lisbon, Portugal.

Beachyhead & Missi - Fantastic news! I really really hope that all goes well for you both. Think positive thoughts and look forward to those sore boobs and sleepless nights! And thank you both for giving me hope.
Clio - it is spooky. Before getting your message I had been on the phone to Mr Rai's secretary and now have an appointment at the end of April. He has also been really helpful and said I can have most of the blood tests done before the consultation so that he will have the results which will save about six weeks of time. Sounds like nothing but feels like an eternity to me.
Still crying a lot and taking one day at a time but now that I have sorted out tests and appointments feel like I am doing something positive. Bacardi is also helping!

dw just m/c for the 3rd time..
She very much wants a 4th, do we go for tests or just try again? Dates 12, 5, 7 weeks. 41yrs.

Sorry to hear your sad news, Anteater. Has the hospital offered any tests?

So so sorry to hear your news anteater. I would have thought that the hospital should be offering tests after 3m/c. Personally, I think you should go for tests because, if something shows up, then hopefully it can be treated and you will be reassured for the next time. Alternatively, if nothing shows up, then there is no reason not to try again and, knowing that there is no medical reason for it might help to take away the feeling of dread when your dw next gets pregnant. Only my own views and everyone deals with it differently. I can only say that I am feeling better now after third m/c knowing that I am doing all I can to find out why.

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Missi

My treatment is a high dose of aspirin 150mg on a positive pregnancy test(not before)and heparin injections from 8 weeks. Folic tablets too but he didnt mention a higher dose. I also take Vitimin A. I saw this reccomended on Marilynglenvill.com as a natural blood thinner. My consulant confirmed I could continue with this along side the aspirin.

Hi Clara1
Thats such great news about Mr Rai. He really is a lovely man and on our side if you know what I mean. So many local doctors I met after the 1st, 2nd and 3rd just didn't appear to be. I began to feel so much more positive after I'd met him as he at last gave me answers and hope. I didn't buy the bad luck theory either.

I too had all the tests done first and can certainly relate to the timing issue!

I hope you are feeling better this week. I found it helpful to talk about it. However many of my RL friends and family just carried on as if never happened. I think they didnt know how to react. All I wanted was acknoledgement that yes it had happened again and yes there must be a cause.
Stay positive
clio

hi,

Im on here seeking info, Ive had 3 m/c over the last 6months. The longest was 8weeks.

After doing my own research on the net I think its due to horonal abnormalitys and low level of HCG.

I cant afford private investigations and my local doctors are not very helpful. Can anyone help.

I had a son 6yrs ago no problem, now me and my husband 2b have been trying for our own as my son is with my ex, and this keeps happening, I am now losing hope.

Can anyone offer advice.

Clio

Thanks for your info, I have just had a scan which shows the baby as 6 weeks, there is a heartbeat and all seems to be normal.( so far so good) I started injecting the heparin yesterday and am still on all the other medication.
Your treatment is similar to mine, except I had to take 75mg of asprin for 2 months before i tried to concieve and will take it along side the heparin all the way through. I found some useful research about the trials of this treatment (carried out at st marys) at www.asklenore.info. If you haven't already seen it, it's a reassuring read.

Hi Clara1, I have never put a message here b 4 but your story is very similar to mine. I had a boy nearly 2 years ago, no trouble getting pregnant, normal 40 week pregnancy. In August last year I had a missed misscarriage. I started bleeding at 14 weeks and the scan showed the baby had died at about 10 weeks, never got the chance to have an evacuation as I had the baby naturally the next day. In February this year I had another missed miscarriage. Had the scan at 12 weeks but the baby had died at about 9 weeks. Had an evacuation this time. Like u having already had children I am baffled, angry and confused. This morning I got an outpatients appointment to see a Gynae on 20th April, but i can't help but think they won't find anything. I want to try again for a baby but I know I should wait to see this Gynae, but what if he finds nothing? How long was it since you had your last girl? What advice were you given after your second m/c on trying again. My heart goes out to you, you know you can have children so don't give up, we will have more chidren and lets not forget that, we are not dealing with infertility and with all of our stories so similar there must be a cause, its just finding it which is so draining. luv to you all.

Hello, I had 2mcs, 1 healthy baby then 3 mcs and am now 24 weeks pregnant and all is well. I truly am sorry to hear of your losses. Just to let you know that I persisted with getting tests on the local NHS and found I had Factor V Leiden - a clotting disorder and am on treatment heparin and aspirin. Last year was really hard with 3 mcs and tests which took ages. My heart is with you. I so understand you want practical help and not sympathy. There is a good FVL-PG suport ggroup on the yahoo discussion boards as well as one for recurrent mc as well as ones for all sorts of disorders. We are really not alone.

bekst - don't lose hope in either yourself or your doctors. I think you need to keep hassling your local doctors to get a referral to a specialist. i don't know what part of the country you live in but, if it is any consolation, I know that the specialist I am due to see privately was seeing NHS patients in about the same time frame.
Hi Pogo - my youngest dd is almost two and a half. After m/c 2 I was told to wait for one period so that I could be sure of dates in the future but other than that they said go for it whenever you feel ready. Ended up waiting 3 months..... although now feels like we waited for nothing. Can you get the gynae to do any blood tests in advance of the appointment in April? At least that would help you to feel that you are doing something and not just waiting for fate to decide. April seems like a lifetime away but maybe worth waiting to see what they say and in the meantime pig out on Easter Eggs (I can personally recommend this particular course of treatment!)Good luck and keep me posted ( I have my appointment on 21st April too so would be good to compare notes)
Jezebel - thank you for the support - this site has really helped me with the desperate feeling that no one else in the world knows what I am going through and your outcome helps too. I hope all goes well and hope you are feeling more relaxed by now.