Very worried after 12 misscarriages.

[Desperatelywanttobeamum]

Hello please could you help as I feel I'm not getting the help and support I feel I need.
I am currently pregnant again, and have been getting pains and brown blood which I have read and been told is normal. But this morning when I wiped I had red blood. I phoned my EPU and they told me it's normal to spot during pregnancy (which I understand) but given my past history surely they should be doing more to put my mind at ease and help me. I think I am currently around 5/6 weeks (I have a scan next Monday). Please could any of you ladies please help me and advise what I should do next as I am extremely scared that I will misscarry for the 13th time.

Very sorry to hear of your situation. Just wanted to let you know there's a thread on recurrent miscarriage in the miscarriage section under body & soul. You will probably get lots of answers and support and advice there. All the best.

OP I really hope all turns out fine for this pg.

I just wanted to say though that I really recommend Prof Lesley Regan at St Mary's miscarriage clinic - she is at the forefront of the research. I had 4 m/cs (inc one ectopic). I read Prof Regans book on miscarriage and asked my GP to refer me on a private basis (I was in my late 30's so I didn't want to wait for an NHS referral and I also wanted to make sure I saw Prof Regan personally.

Your local clinic might do similar tests but the way the blood is analysed is crucial to detect certain conditions. For eg, I was diagnosed with anti phospholipid antibody syndrome and, for this to be identified, the blood must be taken without using a cuff and be tested within the hour. I knewv this having read the book but my local infertility clinic used a cuff and then sent the blood off to another hospital for testing the following morning so no wonder they didn't pick it up!

Also, when I did fall pg again once I was under the care of Prof Regan, my blood was tested every two weeks and I my drugs were adjusted accordingly.

I wish you the very best of luck.

iv just been googling and second what lunatic says. id try giving the nhs a poke first but be prepared to go private if they dont play ball. i think there are quite a few private practitioners working in this field now having a good deal of success.

iv just been googling and second what lunatic says. id try giving the nhs a poke first but be prepared to go private if they dont play ball. i think there are quite a few private practitioners working in this field now having a good deal of success.

I'm sorry that you are having this worry. If you can afford it, I would recommend going private. There is a long running thread for women who are having/have had NK cell investigations whilst ttc over in Conception. It has "prednisolone" in the title as that is the usual steroid treatment if high NK cells are found. Dr Gorgy seems to be good in this area (we had a consultation with him). Dr Shehata is another one, but he focusses on one aspect and less of a broad spectrum than Gorgy (or at least he did when I saw him).

Desperately,

Firstly: You need emotional support. Please call or email these people-City Pregnancy- they give free of charge counselling to women struggling with pregnancy loss and are very experienced in this area. It would mean travelling into the City to see them but I have personal experience of them and can not speak highly enough of their service. I believe they would help you.

Secondly: the reason why I asked if any of the pregnancies themselves have been tested (as well as you and your dh) is to figure out where to advise you to seek help medically. Depending on your results, different places and specialists might be appropriate. There are different issues that can be explored and different hospitals are better for different issues. St Mary's for example, are great for some things but not so great for others. People speak very highly of certain hospitals but a lot depends on getting you to the right one for you and your likely problems.

I am not surprised after so many devastating MC you have kind of lost track of what they have/haven't tested for.

It is good your GP is sympathetic and wants to help. I would ask him to help you understand what tests you have/haven't had by going through his notes with you and making a comprehensive list (usually a consultant would copy in results to gp). If he doesn't have enough information I would ask to see the same consultant again for the purpose of getting clarity on this issue.

You would then be in a better position to know where to go to get more answers, and the ladies on the recurrent miscarriage testing thread would be able to advise you well.

I have to say your age is a real warning bell to me: To lose 12 pregnancies randomly would be incredibly unusual but I suppose is vaguely possible if you were say 43/44 and you were coming up against declining egg quality. (Statistically the Miscarriage rate at age 40 is 1 in 2 pregnancies because the egg quality does decline). To lose 12 at age 28 and argue it is random is pretty preposterous.

About this pregnancy: to be honest if you got a positive test on 23rd December, even if it was an early test (say at cd 25) your dates do not make a lot of sense and that does suggest all is not well. It might have been possible for things to be very behind if you ovulated incredibly late in your cycle, but had you done so, you wouldn't have got a positive on that date, so it does seem there might be a problem.

Warning: this paragraph is going to be graphic so skip it if you don't feel up to it. If the worst happens and you go on to lose this pregnancy, I want to give you a chance of getting it tested- if you know if this pregnancy was genetically viable or not it can help you decide where to go in future. I know you have had MMC before, so don't know if you have had ERPC's or if you have gone on to MC naturally. But here is the awful bit: If you start to MC naturally and want them to test, you need to keep the clots that come out so that the EPU can send them away for testing. I'm sorry, there is no delicate way of saying that. What I do is put a sieve across the toilet bowl so that all the bits are saved rather than falling into the loo. It is absolutely ghastly to have to do this, there are no words for the horror of it, but personally I feel for me the horror of losing more babies is worse, if that makes sense, so I do it. Sorry if it is too much detail, and of course I know you haven't lost this pregnancy so there is still hope at the moment, I just wanted you to be prepared if the worst happens.

I would also say that St Thomas' EPU in central London are by far and away the best place I've been to as they really understand the trauma of it all....most places seem not to understand that because its all in a days work for them, it should be for you, if that makes sense.

If you can't cope any more, I would see no reason for you not to go for a day out in London tomorrow to distract yourself and feel so worried during your day trip that you present yourself at their EPU. If you tell them you are bleeding and frightened they would see you.

Sorry this is so long!

Fantastic advice Armadale.

Hope you get some help OP

I agree, that's an excellent post by Armadale and there have been some wonderful recommendations on this thread too.

12 losses is not just bad luck, something needs to change. Your GP sounds like they've done a lot but this is really beyond the scope of a GP now.

Very much thinking of you - you have been through so much.

Thank you armadale for you wonderful advice.

I went to my local a+e last night as I was still worried! but again just got told to be patient and wait till Monday as they won't see anything. Although the doctor did suggest doing a MRI scan to check my Fallopian tubes are ok. That has never been suggested before so will bring that up with my consultant when my appointment come through.

Xxx

Desperately I'm so sorry you're feeling so worried I can completely understand how you feel. If it makes you feel any better I had my scan today about my brown spotting and back pain and all was fine. So just because of previous miscarriages it doesn't mean this one won't stick. Scanner said bloody is not right but common...made me feel a bit better. I really hope you get the right answers at your scan. A least a definite so you're not in limbo

Yeah that's how I feel atm in limbo. But Monday for definite I will know the answer.

I think that's all you can concentrate on. And you've had some great advice on her so one way of another I think you shall have a baby in your arms very soon

I agree that it is nuts that you have been through 12 miscarriages and all of the trauma which goes with a loss and you are still us diagnosed/ not being treated properly.

If you have the funds, go and see Dr Gorgy. You can google his clinic but he is a gynes and immunologist. There is clearly something going on with you and your bodies response to pregnancy. I am pg because Dr Gorgy and his treatments. There are others who specialise in this field also.

I am really sorry for all of your losses and really hope this one works out for you.

desperately have replied to you on the RMC thread and hope you are bearing up today.
It's not that expensive to see Prof Quenby. She charges £350 for a one off visit to Coventry to her implantation clinic - that covers a consultation, scan, uterine biopsy (no worse than a smear test) then a phone consult about a month later for results. You need to take a break from TTC and be certain you are not pregnant, and go 7-10 days after ovulation. The treatments she recommends are cheap and available on the NHS (steroids, progesterone, clexane) I have been treated, scanned etc by my local RMC clinic on her recommendations and am now 19 weeks pregnant after 4 'unexplained' miscarriages on standard testing.
My later miscarriages where I was being scanned regularly followed the pattern you describe - growth lagging behind (definite) dates, ending in miscarriage when I was about 8-9 weeks by LMP.
It's absolutely shit that you have suffered so many losses and are still being fobbed off. I hope this pregnancy does not end badly, but if it does then do pursue immune testing, it needn't be expensive or complicated.

Hello ladies,

Thank you all so much for your advice and support. My doctor managed to get me a scan today, and my suspicions were right I have had another MMC. After having red blood and severe back ache. I have been booked for an ERPC tomorrow morning.

DH and I have decided to have a break for a while and try and get investigated further. I am going to request all my previous medical history so I can check to see which tests haven't been done. The doctor today asked me if I have had my progesterone levels checked and I couldn't remember. But what does this mean, did really understand her.

Anyway I just wanted to say we are not going to lose hope and one day we will have a baby. Xxxxx

Oh desperately my thoughts have been with you, I'm so sorry to hear that it was bad news. I think that sounds like a sensible option, sounds like you are ready to tackle this head on and you will sort out any problem and have that baby soon enough. Good luck

desperately I'm so sorry the loss has been confirmed. Please don't lose the opportunity to get some valuable information from this pregnancy by getting the embryo genetically tested. Insist that this is done, it makes a big difference to further investigations. I did the sieve thing (might have been Armadale who advised me) which was gross, but useful. You've had too long being fobbed off, you deserve answers.
There's a lot of controversy over progesterone. One theory is that low levels affect development of the endometrium and prevent proper implantation. Lots of RMC patients are given supplementary progesterone in first trimester. It's been proven to improve IVF outcomes, the RMC experts seem to disagree whether it's helpful or not, but it doesn't do any harm. Meaauring day 21 progesterone is part of fertility investigations and sometimes used for RMC. it can tell you if you ovulated, beyond that there is some confusion what a low- ish level might mean. In my current pregnancy I took progesterone from cycle day 21, previous (unsuccessful) ones I only took it from BFP, but I was also on other new treatments this time.

I am so sorry for your loss and I wish you lots of luck in the future. I am sure with the right medical care you will stand a much better chance of a take home baby in the future.

Oh I'm so sorry, desperately. What rotten news for you.

It is easy for them to send off the ERPC to get genetic testing on the baby, make sure they remember to do this for you.

I am on progesterone and the consultants view at my hospital is it might help, can't harm but there is a big study underway to find out if low progesterone levels are a symptom of miscarriage or a cause, and the results are 3 years off yet, so it is prescribed just in case it helps at the moment. Nb it would only help genetically viable embryo's, could do nothing to support a genetically unviable one (which comes down to that need for testing again)

TBH they do sound rather like they are faffing around not knowing what they are doing with you- was rather about the fallopian tubes investigation as well as someone who has had 12 pregnancies is not likely to have an issue in this area...

Think you and everyone else on this thread who has given you good advice is right, get your results, get somewhere better and hopefully that will change the outcome for you.

I will be thinking of you tomorrow morning.

Hi, desperately. I'm late to your thread and am really sad for you.

I've had multiple miscarriages, although not as many as you. I have two children now (not trying to make you feel better or worse, just so you know a bit of background).

I think I have Hughes syndrome which accounts for my losses. The reason I a posting is that if you have a spare £195 it might be worth trying to see Zita West. She is a fertility specialist.
www.zitawest.com/about-zita-west-fertility-clinic/useful-information/about-useful-information-natural-fertility-fees/
And very very good....

im so sorry to read this i hope you get some answers and can move forward positively. you have had some brilliant advice here and as you can see theres so many kind ladies that want to help and listen x