Recurrent miscarraige ? What tests are available before giving up?

[oinker]

I have had 5 m/c's and 6 losses. All in the last two years.
I have undergone numerous tests including all the blood test for me and DH. This concluded that my blood wa too thick and therefore prescribed baby aspirin and two daily injections of heparin upon conception.
I still m/c a further two times.
During last pregnacy scan I was found to have two fibroids and scar tissue. A HSG test done (pump dye into uterus and take xray pictures). This concluded distorted uterus, fibroids and scar tissue. I was then told I would need a therapeutic hysteroscopy (camera/cutting gear thru uterus under general anaesthetic) to correct uterus and remove fibroids and scar tissue. before they would concsider op I was told to loose weight. I did and still am.
I had an operative hysteroscopy last thursday(camera into uterus and photos of uterus and fallopian tubes done) Conclusion.... I have tiny kink in utuerus,fibroids and scar tissue so insignificant the consultant doing tests stated that it would be more harmful to operate. She states this detection is not the cause of my m/c's and that it must be else where.... She is not recommending surgery. Should I be happy or even releived?
But where is the problem? What other tests can they do? Have I reached the end of this journey?
Is anyone else out there going thru or has been thru this?
I really need to hear from you..
I hope someone out there can help.

I'm so sorry for what you've been through, oinker.
I've had 3 mcs, only 2 consecutive so no tests, and no experience to help you. But I can recommend Lesley Regan's book 'Miscarriage: What Every Woman Needs to Know', in case you don't know it already.
Wishing you all the best - hope this nightmare ends for you someday.

Thanks foundintranslation.....

I should have mentioned I am under Lesley Reagans clinic at St Marys paddington. I have an appointment coming up next week and am due to see her. I keep thinking that she is going to say something like,I am sorry but sometimes we just don't find a cause.. I can't be good for their stats chart.
I am getting quite nervous..

sorry to hear this oinker, but your not at the end, I saw a something on the news on this a while back and mentioned it to another lady on my ttc thread at the time, I think it was Wendy11, (I certainly know it was a wendy) will check with the girls and get back to you, so you can cat her if need be. Anyway sorry to ramble, I directed her to a project underway at Nottingham University (Liverpool also are doing studies) and I do know that she's since been accepted onto the programme and is undergoing treatment, but what that involves I'm not sure, but it may be a route to go down for you? worth a look? HTH's and good luck.

It's gone quiet....

Any advice.....

Hi Oinker,
I am in a similar situation although with me it is 3 mc's in the last 18months. They originally did all the tests after my first 2 mc's which showed high levels of antibodies and I was put onto clexane for my last pregnancy but once again mc. I've since had the blood tests repeated and they are all normal but have found out that I have a bicoruate uterus. Had a HCG in Nov which confirmed the uterus and showed a 'mass' a the top of each horn - believed to be fibroids but the hysteroscopy showed nothing!! Waiting for my next appointment in 3 weeks. All of the consultants just keep saying that it's just 'bad luck' and that the shape of my uterus is unrelated to my mc's as they were all first trimester and bicornuate uteri is more associated with later miscarriage - something else to worry about.
So...I'm really sorry that I can't give you much of a light at the end of the tunnel, just to say, I am feeling a bit the same and don't quite know what else to do but just try and stay positive (as my dh keeps telling me!!). Planning to try again in Feb as the consultant who did the hysteroscopy said the left horn of my uterus looked healthiest and I should be ovulating on that side next month.
Planning to try acupuncture as it is supposed to help with stress and ovulation!
Good luck - hope you find some answers!!

Hi there... I've been trying for 2 years and lost my pregnancy at 24 weeks, in Nov 06. I have had one lost pregnancy previously. Both pregnancies include bleeding on and off. However in my last pregnancy I had really bad periods of bleeding and cramps in from week 10 to 24. So have a different background to yourself. I have undergone all my tests now. They strongly thought I had a blood clotting issue, all tests have come back fine. I have had my tubes checked, all fine. My genetic and bio make up is fine. The baby was totally healthy and of good weight, so it is not the babies. (Main cause of M/C being abnormalities to babies, but with several M/C's must be another issue). I'm not overweight and have a healthy diet. I have had a scan today, which showed a small abnormality to my uterus (like a horn), but should not be significant enough to cause M/C and he found PCO, that will effect my fertility, as ovulation is being knocked out, but again can increase risk of M/C, but not at the stages that I start having trouble.

We have had all the tests the NHS at this point are willing to offer. Therefore we are having to go down the route of getting pregnant again and see what happens. They are saying it was just a one off... as they cant find anything...

Therefore I can understand your frustrations. I would certainly go to see Prof Regan. She is an expert in her field and by using her expertise she will be able to advise accordingly. The biggest thing I have realised through out my experience is that they don't have answers for everyone, for me it is driving me crazy not having answers and uncertainty. My bereavement midwife was hear the other day and told me lots of stories about people try and trying again and finely they have a full pregnancy. Stories like that really don't help,,, but do give you a flicker of hope.

How did you get to see Prof. Regan? I live in the Midlands, but would like a second opinion..Do you live in London?

PS - I'm willing to go private...

I really feel for you and hope you get some good advice on further tests. I have had several m/c's in recent years, though not in such difficult circumstances as yours, also the usual medical investigations (inconclusive), and I have been lucky enough to have two children too.

Interestingly both my children came after having some reflexology. I am not suggesting it is a miracle cure or a substitute for further tests. But I would recommend it as something to help with the stress of the situation and relax you.

Good luck!

Hi Rahrah, So sorry to hear about your loss - I know how heartbreaking having an early miscarriage is, but can't even imagine a mid term one. It's one thing that really scares me about getting pregnant again as now that I know about my bicornuate uterus all I keep hearing again and again is that 'it isn't the cause of my miscarriages as it is usually associated with later miscarriage' - sometimes I wish that I had never found out about it as I could then hopefully get excited if I actually get to the pont of a heartbeat!!!
Out of interest, where have you had your tests as I am also from the midlands and have been treated at Solihull & Heartlands hospital.
Take Care. xxx

I had all the tests at Walsgrave Hospital, Coventry and the Chase in Leamington Spa.

So we are near each other..

The consultant today found some slight defect with my uterus, he described it like two horns, but said that it would not be accountable for my loss, as it was too late on. He said it was nothing too concerning.

I went to see a consultant today, who specialises in scans at the Chase in Leamington and he seemed spot on. My mum works in local GP environment and the guy I saw was highly recommended by local doctors.

He also gave me a disc with everything on to take away to show the other consultant at Walsgrave.

I am seeing Mr Kennedy at CRM, Walgrave (reproductive medicine)

and Mr Woods - Walsgrave, Gynie dept..He is my consultant for when I was pregnant and for when I'm pregnant again.

I know Kennedy does private work and in clinical director at the NHS Walgrave hospital for the maternity depts and head of reproductive medicine

I think the Chase is the old name for the hospital in Leamington Spa, I think it is the Nuffield.

I can second Lesley Reagans book - I bought it after having just had my 2nd miscarriage. Would be more than willing to post it to you. Have you children already or are you trying for your 1st?

Thanks for that Rahrah, I am under Mr. MacKenzie at solihull recurrant miscarriage clinic. He was going to do my hysteroscopy but there was a 8 week waiting list on the NHS, so decided to go private and saw Mr. Anyanwu at MRI Meridan (The private wing at Walsgrave). It was all a bit of a mess up though as my xray results weren't sent to him so he didn't really know what he was looking for and consequently didn't find anything (which is good I suppose). It now seems that I have got Mr. MacKenzies back up a bit as he was wanting to do it - which I would have preferred but if he tells me I have a couple of masses and then expects me to wait 8 weeks over xmas and new year - well he'd have a manic depressive on his hands. Unfortunately I know that my medical insurance only covers 'medical things' and not fertility issues and definately can't afford to pay myself for private treatment unfortunately. I've got an appointment in 3 weeks with mr. MacKenzie again so I'll see what he says then. xxx

I have just ordered 3 books from Amazon, one being the Prof. Regan book. So although I have not read it yet, it only cost me £4.00... so defo worth a purchase.

Wishing you lots of luck at your appointment, defo the best person to be going to see under the circumstances.

I have the same issue with my medical cover. They will pay for M/C investigations but no fertility investigations or procedures.

We saw Mr Kennedy prior to our last pregnancy at the CRM dept at Walsgrave, so going to go back to him.

We have come to the decision to accept what they have said (last pregnancy was a one off, and the first bleed at 10 weeks triggered a chain of events off that ended with my membranes rupturing at 23 weeks) and try again. Therefore our main focus is to get pregnant. However if I have another pregnancy that ends in a loss, I will go and pay privately to see someone if needs be. (along with a psychiatrist, as I will need one if it happens again.!!)

They don't seem to have a recurrent m/c clinic at Walsgrave, which is strange as it is massive. I'll ask next time i'm there, perhaps I have not been referred due to not having very many.

Goodluck - same here - apparently no reason so just bad luck and surely there is only so much bad luck someone can have!! Hope both our 2007's have a happy ending!!
(they only tend to refer you after 3mc's, I was referred after 2 as ended up with 2 failed erpc and an injection of methotrexate to get rid of everything and was quite stressed about the situation - now it is understandable why the erpc's failed as they were obviously scraping the wrong 'horn')

Blimey... Least it explains why they failed. My sentiments exactly on the bad luck...how can it all happen to one person and nothing to others - it should be distributed evenly!! (my bother and SIL are expecting their first child in a couple of weeks, he dropped his pants, she was pregnant after one go, and perfect pregnancy really, and know lots of others like that.) So unfair.. Stamp my feet!!

All the best and really hope it is both our year... 7 is my lucky number! Take Care XXX

My brother & SIL have just had a baby girl a week ago. Same kind of situation - I was pregnant twice before she got pregnant - when they weren't even trying very hard!!
My lucky numbers are also 2 & 7 so I'm hoping that means something!

heresfor2007, I'm very sorry that you've been told having a bicornuate uterus gives you a later m/c risk - IMO it is just another worry you don't need. I couldn't pass this by without saying something, I hope you don't mind. I too have a bicornuate uterus & have had 4 m/c all around the 8 week mark. I was told by Prof Nicolaides (fetal medicine expert) that the reason for them is probably because there is a good and bad side to my uterus and pg's just don't take on (in my case) the LHS. I was told that IUI might have prevented them occuring, however, I never got to this stage so I have no experience. I do have 3 DCs now who interestingly all implanted on the RHS of my uterus. Good luck, I wish you all a positive 2007.

Thanks for that Castle, when I had a hysteroscopy last month, he said that the left horn was larger and more healthy looking (unfortunately I know that my last pregnancy was on the LSH) and so that is why I have decided to TTC from next month as assuming I am ovulating alternatley then it should be my LHS in Feb - but then I have heard of the eggs/embryo's migrating to the otherside anyway. I think it is just going to be a hope for the best and keep my fingers crossed. It is nice to know of people in the same situation with children though - it gives that extra little bit of hope.
Thanks again xxx

Thankyou all so much...

It is so reassuring to know that I am not alone. I was beginning to think this was only happening to me.
Thanks for all your stories and advice.
We all seem to be in similar situations.

Rahrah1...
I live in London and asked for a referral to Prof Reagan. I was under Queen Charlottes but was dissapointed with them. My GP referred me and as I am in their catchment area was accepted within 4 weeks as NHS patient. I think you have to wait 6 to 9 mths if you live anywhere else in the country and are NHS. I should think it'll be quicker private.

Heresfor2007.......
Interesting about HCG and hysteroscopy having different results. this has happened to me too. My HCG showed a very distorte uterus large fibroids and scar tissue...
Hysteroscopy result was good. Nothing sinister seen and all clear given.

Hysteroscopy doc mentioned that sometimes a good clear out does the trick and that after a HCG or hysteroscopy some women fall pregnant and go to term. I have searched the web and have come across some stories relating to this... I have started taking folic acid again just incase I am given the nod to try again.
I just want an answer...

Message withdrawn

Thanks for the info oinker.

I have just started reading her book, and it reads really well. (only got it yesterday morning, so not read it all yet).

When I went for my consultants appointment I completed lots of preparation. My hospital notes are a real mess, so had a summary of my history and dates. I also had a list of questions and possible tests that could be conducted, so I understood what could be ruled out. Although I have not got the answers for the loss of the pregnancy it did help with my nerves for the appointment and I was able to walk out having all my questions answered at that point and an action plan, that I am now working through. Might not be your bag, but just a thought...

I think it is so important to remember aswell that you are seeing a real expert in the field, so if there is something that they can find, she will be able to help you. From her book her treatment/appointments really are about listening to what you are saying. I think we are all too aware of many doctors not listening or being referred to lots of different doctors for different things. She does not believe in that. For example I have been referred by my orginal consultant to different doctors for different things, I think it would be much more valuable for the management to be under one roof. I now will only see my orginal consultant once pregnant again... What a bloody nightmare... Please update me on how your appointment goes and what you think... I might book in a private appointment on your recommendation

Message withdrawn

From what I have read a majority is about early miscarriage. She has put about late miscarriage that careful investigations need to be carried out to find the cause.(classes late M/C as 13-24 weeks, 1% chance of this happening) Indicating due to the baby being ok and of viability, there should be a reason. She does not class mine as a M/C but threaten M/C that continued into viability.(thats how I read it) It scares me that my doctors have just brushed it off as a freak pregnancy... Due to other issues I don't get pregnant at a drop of a hat, so do not want to leave things to chance, which seems to be their preferred way. But at the same time if I don't accept what they are saying, do I cause the sitaution to esculate. Its realy strange because my consultant was saying prior to the tests that I had lots of indicators: bleeding, clotting, 2 lost pregnancies, periods of infertility... he said this really concerned him, but then when the tests came back negative for everything he just sent me a letter saying it was a one of and will see me in my next pregnancy and give me an asprin supplement, as I could have a clotting disorder that they do not routinely test for, but the ones they do have come back fine.

It's all very confusing.

I will continue to reah her book, and see if I understand more.