Recurrent Miscarriage Thread

[LeeC]

Thanks Petitpas, hopefully the gp will play ball, Prof Quenby's secretary was very nice and said any problems to call her back. However I think they are now doing PROMISE trials, and I already have the progesterone so was really looking to discuss NK cells with a view to getting the prednisolone but I did make them aware of that on the phone.

I seriously lost the plot this morning, I'm like a one woman crusade, I spoke to Miscarriage Association, then another clinic in Scotland, now I'm about to rant at my local MP and MSP.

Somethings needs to change, I'm sick of being brushed under the carpet, I will not go away!!!

Rant over lol... xxx

xxx

 

[smidgen]

You go girl Lee C!!! Have you got a good GP? Hopefully they will get their finger out and draft a referral for you to see Siobhan Quenby fairly quickly.

Fingers crossed x

 

[mandy1971]

wow..Lee, you dont mess about.
I really admire your perseverance and determination.
If they cant give you the treatment they should be saying why. Prednisilone is a common drug and I'm sure it's not massively expensive, yes there are side effects but as long as you are fully informed, then it's a chance you take.
out of interest which hospital are you attending, I'm in North Lanarkshire..

I'm waiting to hear from the nurse today to see if my consultant will prescribe the steroids.. wish my partner was here as he has a whole spiel for them if she refuses......

 

[LeeC]

Hi Mandy

I'm with the Princess Royal in Glasgow, one of the nurses in EPAS really understands and we have discussed NK cells etc, but honestly the rest have been worse then useless, my last ob after tests said in a letter to me

"To this end we have found no explanation for your early pregnancy losses which in itself is reassuring (erm is it???) The only evidence we have found for early intervention would for you to be seen frequently and we would plan to do this through the EPAS.
When you have a positive pregnancy please contact us".

Now, I'm not sure if she had read my notes, as she would have seen that this is exactly what I did on my 3rd and 4th m/c and then went on to have my 5th before my last ectopic.

I understand funding issues etc etc, but honestly they are now talking about referring me back to assisted conception, again, please read my notes, I have NO problem getting pg, I just can't carry.
It's so damn frustrating, especially when time is so precious.

So yeah, I sort of just lost it and went out all guns blazing and I'm not stopping yet, my sadness has turned to anger at the system.

Haha, there I go, off on my soapbox again.
And as for admiration... lol... if only you could see me now!!!

Hope you get a better response than me, wishing you all the luck in the world xxx

 

[mandy1971]

Hi Lee,

I'm seeing a FS and having IUI at the moment, they are there to assist conception., my friend suggested this to me that they should be assisting a pregnancy in my circumstances by prescribing the steroids...so do take them up on the offer because they may be able to help you..
Incidentally, I did'nt hear from the nurse today re:steroids.............
The wait and suspense are killing me..grrrr.

 

[livinginhope2]

I found it!
https://www.rcog.org.uk/guidelines
Open guideline number 37, go down to page 15, point 5. Bingo! In summary, having APS and recurrent miscarriages puts you in the high risk category for thrombosis. The guideline is to start with the heparin and aspirin as soon as possible when pregnant!
The guidelines also state that you should be referred to a haematologist or rheumatologist pre-pregnancy.
It's also worth checking the dosage of aspirin that you are taking. Somewhere in the guidelines they mention 100mg daily. My professor let me take 150mg daily saying it would not be harmful. If you've only been taking 75mg until now upping the dose might be a try, too.

Before you ask, I have Factor V Leaden and have had thrombosis before so that is why I am familiar with that particular guideline.
Basically, what you should be saying to your doctor is that by delaying the start of heparin injections they are putting your life in danger, not just that of your baby.

Ultimately, with the right heparin and aspirin management your next pregnancy's chance of success goes up to 70%. That is still a little below the norm, but way way better than the 10% if completely untreated.

Thank you so much for all the information I really really appreciate it. I have contacted Mr Shehata's clinic today and also Dr Quenby - who emailed me back!!! She has given me a few suggestions but basically states no reason why they shouldnt start heparin ASAP! I'm printing it and I'm off to my GP - she also talks about progesterone as cyclogest 400mg but I dont know too much about them but I'll go for anything, also folic acid 5mg apparently can help?


Hope you dont mind me asking but have you had a successful pregnancy?

Thank you so much again, I will keep you updated and I'm now off to read up on the guidelines.

Sx

 

[stardust22]

Leec, I totally understand why you are so angry!! time is precious and they just cant seem to understand, so much money is pumped in to the system for other things and for us this is everything,I want the support and getting it seems like a mission impossible.

I have had some tests and due to see the consultant in the next months or 2 but I just know that the NKC thing seems hard to get off the ground (with NHS anyway!!) so here is what I have discovered today, or should I say my husband!!! bless him, he is the one who fights our corner...so well too.

He has phoned up the Spire (Bupa) hospital and several places in the Uk now do the NKC testing. He explained I am 4 weeks pregnant and could I have the blood test, she said yes and the process is SO damn easy ! I need a GP letter explaining what I want and the pathology is open from 8am-8pm monday to Friday and I can go for the blood test without an appointment, just walk in, the results are sent to my GP within 2 days and the cost is £195!!!!!!! I cannot believe it. Obviously they also do a biopsy of the uterine wall for nkc as well but being pregnant I cant have this, but what a step forward from 24 hours ago. SO I could know within 7 days if I may have a problem that will nmaybe end this pregnancy. I guess someone has to prescribe the steroids if I have a known condition, how hard will it be to get the prescription? I think the doctor at EPU will have no choice when my husband gets let loose on them.

Anyway just thought I would share this news and will keep you posted!
x

 

[livinginhope2]

Oh Lee I totally understand where you are coming from, its so like banging your head off a brick wall. They are so unsupportive at NHS well in Fife anyway!! Hey, let me know if you need another member in your campaign - more than happy and more than angry

do you know ladies the best thing I ever did was join this site - cant believe how many of us have gone through or are going through the same thing!

Thanks to you all xx

 

[stardust22]

Shall we all get together and organise some kind of massive demonstration and get ourselves and our stories on tv!!

 

[daviess3]

I havent even started with my testing yet and judging by what you ladies are going through it doesnt look pretty!!!
Stardust i emailed spire as well today they told me test is £250!! however consultant fee is on top but i thought same as you i dont want to speak to one of there consultants i could get results from my own!! I want to try an exercise all the nhs has to offerafter all i pay bloody enough tax lol!!
It seems very frustrating an i agree with you ladies seems like everyone else gets what they want fat people get there gastric bands smokers get help to stop heroin addicts methodone! But something we have no bloody control over, we are just brushed under the carpet!!

Im not even being seen yet but god help me if they try to write me off!!
xx

 

[cindersmcphee]

Hi LeeC
I am waiting to hear back from Royal. Waiting for consultant appt(to discuss if anything found in pm results) after a late loss. I am not holding out much hope. Lost 1st baby at 6 weeks in July then fell pregnant with twins, lost one before 9 weeks and then my boy at end of Jan. 16 week scan showed he had died around a week before. I have a feeling they are just going to tell me that I have been unlucky

 

[Goodgirl35]

[QUOTE=stardust22;9594052]HAHA will do! Just had a massive shock tonight. Got a positive on a first response. not sure what I can do now. I am so scared of miscarrying again but I guess its just a waiting game. If I do then I will have to get tested for NKC. I am assuming its too late now to be tested once pregnant! wasnt supposed to be trying but only did have once in about 5 weeks and not on ov!!! cant believe it.
x[/QUOTE]


I am so happy for you!!! Just relax and take it one day at a time.

 

[petitpas]

Hi Cinders,
As far as I know the NHS policy is to fully investigate after a second tri loss, so unless the pm shows something specific that was wrong chromosomally, I think you automatically get sent for the generic testing - parental karyotyping, thrombophilia, ultrasound scan etc.

Livinginhope, you can ask and the answer is NO!
My first pregnancy, I didn't manage to get through the system and didn't start heparin injections until about 10.5 weeks. At 11.5 weeks I had some spotting and a scan showed that my pregnancy had ended (it was so far gone, they couldn't even tell when). Considering that my ms stopped around 9 weeks everyone is pretty much agreed that the foetus died before I got the heparin.
Pregnancy #2 I was on heparin from the start, had a hb at 6w and again at 8w and then just a week later I had some spotting and a scan showed it was over. I was abroad so couldn't ask for chromosomal testing.
Pregnancy #3 on double heparin and single aspirin from the start. We saw a heartbeat at 6 weeks but it was over just days later. My personal feeling is that this was an 'unlucky' loss as it did not feel right from the start.
Pregnancy #4 on double heparin and double aspirin.I was bleeding before my 6 week scan, which showed an empty uterus.
If my next pregnancy goes wrong, the plan is to try and test the foetus.

I knew before I got pregnant the first time that I had a higher miscarriage risk due to the FVL thrombophilia. Even though I only have one gene, I have already had a DVT and clots in my lungs so I know my body is good at being naughty

With my history and because I am being seen by the most lovely obgyn, I never actually went to my local recurrent miscarriage clinic and was referred to St Mary's in London instead. I'm due to go back there in early April and will see what they say as the last time I saw them I was pregnant with #4.

I know it's very hard to get access to treatment on the NHS and I did fast track my referral to London by going private first, but right now I feel like I am in the best place. I am being seen by top specialists and researchers and this gives me confidence. Along with my local consultant I really do feel looked after and I have decided to try a new tactic of trust and PMA. Don't get me wrong, I am normally a fighter so I encourage everyone on here to do their research and get what you need. For me, I've reached the top of the pyramid and I will now trust in their expertise hoping they can help me. From my side, I am doing absolutely everything I can to give my next pregnancy the best possible chance! PMA, less stress, no more flying, compression stockings - the lot. Oh yeah, who am I kidding!? I'm still going to freak out next time I'm pregnant

Sorry, that was yet another very long post! I'm off to bed xxx

 

[Goodgirl35]

So when you ladies had ur last mc were u the same as me advised not to try till u had ur tests? Did u wait etc? What u gonna do diff when u get preg x

Hello

I was told to wait at least 2 months and take birth control but I didn't and haven't. I figure that life and death is in God's hand so why obey the doctors when they've been wrong hundreds of times. Since my last Mc on February 11th I haven't had a period and is beginning to wonder.

What I'm gonna do different is make my doc run test first and give me nothing until I get my results. I'm requesting all my hair clients to understand me more bc if they don't I'm changing my number....lol. I'm gonna rest more and stress less.

 

[LeeC]

Hi Cinders

First of all, I am so sorry for what you have and are going through. My heart goes out to you.
My experience in Glasgow overall has NOT been good, Firstly I had to change my gp, as she was so dismissive of me and have now changed again in the hope of getting a referral to Prof Quenby, plus my last gp told me to have a break because of mental health and she didn't really have time to go through all of it with me because her last patient ran over schedule and now I was making her late for her next one arghhhh!!!

Upon visiting A&E at the Victoria on a number of occasions, again, I was highly disappointed, infact the last time, prior to finding out my pg was ectopic, the nurse was so rude to me, that after waiting for an hour to be seen by a doctor we decided to leave as I was so upset!!!

However, have you spoken to Maureen in EPAS at the Princess Royal, she has always been very supportive and visited me twice when I was having op for my ectopic. I have spoken to her about progesterone therapy and NK cell testing, shame she can't offer the medication or referrals...

I seen Dr Duncan for tests, and she was nice, don't get me wrong, but there is a complete lack of follow up with them and a lack of support, I was never once told about the support mechanisms ie. miscarriage association etc, and there is always that feeling that you are in a revloving door, get them in, then get them out!
I've also been told by them I'm just unlucky, and that I'll know when the time to stop trying will be!!!

I've seen some pretty dreadful things in there too, infact, I posted on here a while ago, about my last visit, when dh and I were in the waiting room, and we all heard a nurse say to this poor woman in the corridor "just wait til the bleeding stops and make sure you pg test is neg then that will be it"
I mean, Jesus, sensitivity, I couldn't even look at the woman as she left!!!

I was in EPAS yesterday following on from a disatrous appt with gyno Dr Rodgers as she only wanted to discuss my op and said I would need to be rerred back up to EPAS which would take another 5/6 weeks, there was only one nurse at reception and I sort of lost the plot with her as per my earlier posts.

I'd be very interested to hear what experience you have had with them and please don't go quietly, speak to Maureen if you can and see what they can do with regards to testing. We must have been in the clinic around about the same time. Because your loss was later I think like Petitpas says they have a duty to investigate, so I hope you get to the bottom of this. I have a friend who had 2 late losses and required a stich, she now has 3 healthy children.

My losses are always very early and have a definitive pattern, I can't imagine what you must be going through an early loss is horrific, but to get to 2nd timester, well, I don't know how I would cope.

Tbh, I'm through with them now though and just want my referral, I'm taking matters into my own hands as at 37, a loooong time of trying and 6 losses time is not on my side and I can't keep going thorough this, it's so consuming.

Where abouts in Glasgow are you, I'm over in Cambuslang. If you ever need someone to talk to or want to meet for a coffee let me know, it's difficult to find people who truly understand what we live through.

Thank you to everyone for listening to my rants
xxx

 

[daviess3]

Has anyone else had a d and c?? Well i had one on sat so 5 days ago and im still very bruised feeling inside keep getting shooting pains inside, I am only lightly bleeding but it just doesnt feel right I cant explain it when i wee I feel really full still! I had a d and c last july an i dont remember it being like this!
Anyone have a clue?

 

[hopefulmama2b]

Hi Davies- after my 3rd D&C I also felt shooting pain (felt nothing on the previous 2), but it was only the day of. Since it's been 5 days it's probably worth a call to your doc just to make sure everything is ok. I'm sure you're fine, but it would be worth the peace of mind.

 

[daviess3]

Thanks hopefulmama i just dont want to go in an have another bloody ultrasound!!! but i no you gotta do what gotta do but i feel sore inside!! x

 

[fluffyblue]

Hi girls Prof Quenby was my consultant with this pregnancy and she delivered him. If anyone wants any info let me know. After technically six mc including ectopic she diagnosed my problems and got me Ollie x

 

[Chilli]

davies - I had very similar symptoms after DnC - turned out I had a bladder infection which ws easily cured with antibiotics so make sure they test you for that please before they do anything more invasive.