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.

Firtstar thanks for the hug, I really needed it..
I have my appointment on wednesday next week.

I have no idea what questions I am going to put to her. I have already asked so many.
I am not sure what is going to happen. DH is on a bit of a downer and has already said he does not want me to be just another case study to them. He cannot bare the thought of me having to inject myself again if I do get pregnant. I feel as though his hope has already gone. I can't help but feel that it is so much easier for him as he has two children already and is starting to become more aware of his old age 40.. I realise 40 is not old but he has said a few times he does not really want to be an old dad with a new baby
I can't help but feel that my time is rapidly running out....

rahrah1,

How comes they do not routinely test for the blood clotting disorder as this can be a major factor. I was tested straight away hence being put on 2 heparin jabs and a baby aspirin daily.
Why would your consultant even consider prescribing it without an indication of blood clotting. Surely that would cause more harm if you didn't need it at all.
I don't mean to worry you.

Some will give anything a go. In my last hospital one prof had me taking progesterone suppositries daily from day 20 to 28 of my cycle. Another prof in the same clinic laughed when he saw what I had been required to do.. During this time I went to see Lesley Reagan holding a lecture and there was an open forum at the end. I told her what I was doing and she said...." My dear stop what you are doing, the progesterone will be acting as a form of contraceptive you will not get pregnant. This has already been tried and prooven worthless" I could have beaten those idiots at Queen Charlottes. I had wasted 4 months... Bloody BAFFOONS!!!!

How old are you? I'm nearly 32, but totally know how you feel. I got so upset today in the car on the way home, I just could not stop crying. The whole experience causes so much frustration, emotional up's and down's, distress, despair, confidence issues and isolation. Neither of us really know if in time we can become pregnant and have a baby, all we know at the moment is it's not happening...but so many people say... stop all of this 'you will have a baby' - but none of them have the insecurity and heartache that we are going through.
I think it is tough on hubbies, but in a different way. My husband hates seeing me upset and I'm his number one priority. I know it sounds really bad, but my child was my number one priority.
I have said for a while that things are not right prior to getting pregnant. People were full of their reassurances then and look what happened. Basically I think we know our own bodies and need to listen to them. If you know something is wrong keep telling those doctors..
No one else lives this nightmare except for the person that is living it. People can say all the reassuring things they want but they turn around and get on with their normal life.
I have heard many stories where people have M/C after M/C, doctors don't know what's wrong and then they conceive and carry full term... I think it is just hard excepting to face more time waiting for the one thing you want most in your life and more possible loss. But you sound like a fighter and really looking at every chance, if there is nothing apparently wrong then the odds must work out in the end.

Why don't you write down everything that has happened so far for your appointment, so you have everything to hand and also outline your expectations of what you want from her?

I know it is no comfort, but you are doing your very hardest and in time when you can look back, least you never gave up. My aunty had fertility problems due to cancer and did not face up to it and take charge of the situation. She never ended up having children and I think it is the biggest regret of her life (she does not speak about it).. So although it is incredible hard now it will be worth all the agony.

I got the following letter from my consultant Obstetrician, that I saw in my last pregnancy :

I am delighted to say that all your blood tests were normal for:
Activated Protein C resistance, Protein C, Free Protein S, Antithrombin 3, Cariolipin IgG and Cardiolipin IgM.

It remains a possibility that you have one of the types of clotting tendency for which you are not able to do routine tests, but most of the serious clotting deficiency would have been screened out by these tests. This means therefore that you do not need to start aspirin before pregnancy but I would like to see you very early on in the next pregnancy, and would very likely give you aspirin supplementation probably until about 32-34 weeks., just to make sure the placenta is fully bedded in right up to the time when the baby could be safely born.

My pregnancy was so weird.

• Was trying for a year and half

• Got pregnant, but had my tubes tested without them detecting my pregnancy first, as was being investigated for infertility.

• Started having sharp pains in my sides from week 6 approx.

• Week 10, felt really tired and unwell. Went to see a midwife, she thought I was being silly, but tested me internal for infection and when I left the doc's, 5 min's afterwards I had a massive bleed and big liver like clots and big water loss. Was taken to hospital and cervix was closed and scan showed baby was still there. Sent home, no follow up offered.

• week 11, telephoned the hospital as I was still bleeding, they said to come in for a scan. Scan showed baby was still there but showed big bleed in uterus. Told to go home for two weeks and rest and then come back for scan

• Week 13, bleed up to week 13 and then went for a scan and all was clear... pregnancy carried on as normal

• Week 18, started bleeding again, but slighter bleed than previously, but started bleeding on and off. Was scanned, baby still ok and sent home for rest. Was in and out with more fresh bleeds during this period

• Week 20, woke up at 6am and had very heavy bleeding, told to try and maintain it at home by EPU. But then started losing large clots, so called back and ambulance was called.

• Baby still ok, but they could not stop the bleeding and were concerned. Therefore was put on gynie ward for observations.

• Week 21, I was moved to ante natal unit, and was keep under observations. Various different levels of bleeding, but baby still ok.

• Week 22, had two big bleeds, leading to contractions and being taken to the labour ward. I was scan whilst there and a large clot was detected over about 1/3 of my placenta. Consultant advised that he thought I would M/C any day.

• Week 23, things had calmed down, but started getting a water loss, but they said my waters had not broken. Sent for a scan and everything was great, the blood had gone and no blood clots were spotted.

• 1hr after the scan my membranes ruptured. Told that I would likely go into labour before 72hrs were up.

• 24 weeks, had lasted there 72 hrs of warning about labour, was sent for a scan to measure the level of fluid around the baby.

• Scan results showed there was nothing left at all, consultant also advised that bloods and swap were showing infection that were taken at 23 weeks.

• Consultant advised that due to heavy bleeding, infection and no waters they were going to induce the baby before he died in my womb. Therefore I was induced.

• I was in labour for 16 hrs, they did everything really slowly. When he was born it was only my husband and me present, as the midwife had left the room and had not detected signs of delivery.

• Baby was taken to neo-natal dept. He was doing well, but his lungs had not developed enough, as he needed fluid to practise on. They sedated him and took him off the ventilator.

• All routine tests have come back negative

• Scan tests have shown PCO and slow ovulation

• Not got pregnant after trying for 2 cycles since loss baby.

• Been referred back to fertility clinic for fertility evaluation and recommendation for clomid.

Sorry so long... but these kind of things just don't happen for no reason... but we are being asked to accept this explanation to move on.. it is so confusing...

Oh Oinker,
I had no idea you had suffered so many losses. I'm really sorry you have to go through all this.

I have only had 3 but not in row, and went to recurrent m/c in sydney anyway. I made the appointment with the prof, but only saw his associate, who then told my case to the prof. in the other room. All he said was you'll get preg again, well yes I have no problem with that part I hope prof R, has more to say than that, I'm sure she has seen probably seen even worse than you, so ask her about other hopeful stories.

I think that because you can get pg, they think you are better off than if you can't, but it's just a different heartbreak for us.

I think Rahrah has great advice in her 2nd last post, keep up the strength and keep trying it will all be worth it, it's just very hard. There was one story in the news where a woman had 11 m/c and then had steriods for a successful pg, so there seems to be alot more treatments and trials than ever before.

In the meantime just really try and do things for yourself. Things you may always have wanted to do go skydiving, go out to nice dinners, movies, or doing something creative will really help.

Rahrah your amazing for surviving all that, that's really hard to read, I'm crying now. just can't imagine anything worse.

I really don't think you could have another pg like that, nature couldn't possibily mimic that one. It seems like all the clots were the main problem to me, so I hope thay can advice what might reduce this.

I know I probably shouldn't bring this up, but why didn't they give the baby steriods to help lung development as soon as you were admitted. I was in hospital with pre-eclampsia with a a woman who had ruptureed membranes at 30 weeks. she kept losing fluid eveyday and stayed in hospital for 6 weeks, until delivery. I could barely comprehed how bad that waiting was, we became friends.

You are only 32 so i think you have age in your favour.
Sorry for being here, as i know I am on the other side right now (hopefully)

I only want to support you both.

Uki...

Thanks for all your kind words and thanks for thinking of us on here. It means a great deal to have all the support and share with people going through the same.

Rahrah1... How sad and what a cruel thing to happen. I really feel for you.
)))))))))))))))))BIG HUGS((((((((((((((((((

I am 38 going on 39 this year so am knocking on a bit. I have been trying since age 36. Some people (doctors) do say stupid things like you should have started trying earlier.. IDIOTS!!! WITH WHO ? I only got with DH at 33....

Rahrah...

Did they do any tests on your baby?

Thanks Uki for your kind words, they would not give the baby the steroids until my membranes went, so that was at 23 weeks. But they did not seem to make any difference as the membranes went totally in one go. Most women (of course not me!) have some fluid left to maintain lung activity, but when the baby has no fluid left the lungs do not develop any further.

Thanks aswell for your kind words, I cant believe that doctors say things like that... Crazy... The problem is that you don't want to be a single parent when your in your fertile prime. Me and DH have only been married for 2.5 years aswell. So naturally puts you over 30, by the time you have finished uni, started career, paid of debts, travelled a bit, got married, brought a house... they should realise that they are working with modern society.. that makes me so angery!! In our next lives we might aswell stop our educations, not get a job, life on the social and have a baby by 16 - with someone we hardly know..

They did not complete tests on the baby, as he we viable and had no obvious chromosomes disorders. They can tell by features, size etc.. He was the right size and development for his gestation. He was also very active and responsive after he was born, so all good signs.

So sorry to hear what you went through Rahrah. I don't really know what to say but that I just hope that next time everything goes well - as you said on a previous message that your lucky number is 7. All you can do is just keep positive and believe that everything will work out in the end. It is so frustrating when they do not have any answers to give you. After my 2nd mc they said I had antiphospholipid syndrome so on my 3rd started taking clexane injections. Things didn't work out again and now they say I don't have any blood cloting problems and that there is no reason for my miscarriages. Even though I didn't want a blood clotting problem, at least it gave me an answer and I felt as though I was doing something positive to hopefully try and prevent it happening again. I so hope that by the end of this year so many of us will be celebrating a wonderful christmas and new year with a more positive start to 2008 (hopefully with lovely little bundles in our arms or at least healthily on their way.)
I think doctors etc can be so insensitive sometimes!! I remember phoning the emergency doctor when I started bleeding with my first pregnancy and I couldn't believe it when she asked me why I was so upset!!!! - because I was miscarriaging you stupid cow!!!

Message withdrawn

Thanks heresfor2007 and firststar.. xx

nottinghamuni
Hi, hope you don't think I'm intruding on this thread, but I did mention previously about another mumsnetter who is under Nottingham Uni now, I've not been able to get hold of her, but thought you might like to browse the Nottm Uni site with the info on it.

Thanks for sharing that info Frizbe...

I wonder how you get on these types of trials...

Oinker, Prof Regan mentions quite a bit about trials in her book... she is a great believer in them. Why don't you ask her if it would benefit you.

rahrah1

I suppose in effect I have been doing them without being asked outright..

They tried me on progesterone suppositries from day 20 to 28 of cycle It resulted in me not getting pregnant for several months. I worked out that the progesterone was more or less acting as contraceptive.
During this trial I went to a lecture held by Prof Reagan. I managed to get to speak with her about it...Her response " The trial had been proven worthless!!, STOP" So I did. (and got pg but m/c'd)

They also tried me on aspirin, progesterone and 1 jab of heparin when pg... This didn't work

Then there was aspirin and 1 jab of heparin....

Then aspirin and 2 jabs of heaprin.....

Nothing has worked yet..

Docs have just said that maybe it isn't that the jabs and tabs are not working and it's just bad luck...

THAT DOES NOT HELP ME...

I had a long chat with DH..

He admitted that if he didn't have children already he would be totally desparate by now.. But he isn't He is going to keep going cos he does want a baby.
We have decided that we will go see the Prof and whatever she says we will do. We are going to keep going until I decide to stop.
We even discussed adoption. I am not 100% sure though...
Its too soon to think about it..

Hi oinker, we are in slightly difference circumstances, as neither me or my husband have any other children. It must make the situation harder for you..We have discussed adoption too, but my husband is not so keen at this point. I said maybe if we adopt, then we would not be too fussed about having our own and if it then happened great and if it didn't then that would be fine, because we would have a child. But my husband reckons this is the wrong way to look at it.

From reading Prof Regans book, it has really helped.. have you got a copy yet? It really puts some things into perspective.

Wishing you lots of luck for your appointment, will be thinking of you. XX

Yes, I have the book. I have been re reading it just to refresh my memory on things she does and beleives in b 4 actually seeing her.

I can understand your DH. Until you get a definate NO I would keep trying and beleiving that you will have your very own baby one day.

Are you waiting on tests or results at the moment?

Had last test on the 8.01, which showed PCO.

My consultant that I had in my pregnancy has released me now, and I am now going back under the fertility consultant.

The consultant that completed the scan has recommended clomid, but I suspect I will need my hormones testing first.

I have the fertility appointment on the 23.01...

So all happening pretty quickly. I will update you after I have my appointment...I hope he has a plan of action.... Otherwise I am going to lose it!

Did you see BBC1 Panorama last night?
Lesley Reagan was on it (for about 30 secs)
Unbelivable...

Mind you some of the stuff which was being questioned is what I had been told thru the NHS.... Like....HYSTEROSCOPY...Clears everything out of uterus and makes pregnancy more probable..
This was really laughed at.... I really want to beleive it's true. I had searched on here and there were several hits about successful pregnancies on chat froums. They wouldn't lie....

I saw some of the program but switched it off after a while, as things like that start my imagination running...

I think that some of the consultants will try anything, where some of the experts have trialled things and found them to be of little success. But the treatment obviously works for some. There is one bit in her book about hormone treatment where the success rate against the time, money and distress for the doc and patient outweighed the procedure they had developed. It is difficult to accept that they can just discount something that may just be the thing that works on you.

It seems to be a minefield out there of different ways of thinking.

Oinker

I have only had one miscarriage but have been seeing Lesley Regan privately for 12 years now as I have had various problems. I also know her quite well adn am involved in rasing money to keep the recurrent miscarriage clinic open. Believe me she will try everything with/for you. I know of a patient of hers who had 9 miscarriages and two live births and they never found anything wrong. And if she tells you to stop trying, then you wuill be the first person she ever has done...........

Peterjones.......

Thankyou.. You have really eased my nerves. I was really dreading hearing what she had to say. Thanks

You have really reasured me.

Message withdrawn