Update from worrybum re: recurrent miscarriage clinic.

[worrybum]

Went yesterday. Prof. was great and reassured me that we are under his care until our family is complete .

There is no one identifiable cause for my four miscarriages but there are a couple of findings that he is confident are contributing factors and we now have the bigger picture. The good news is that both are treatable.

My blood results show that I have slightly elevated levels of homocysteine. I have been advised to take the normal dose of folic acid until I conceive and then my gp needs to prescribe a higher dose when I get a BFP. He is writing to my gp to inform them of this.

The other issue is polycystic ovaries! He picked up on this immediately from the ultrasound scan he also did yesterday. I am with the gynaecologist that I saw after my 3rd miscarriage because I asked at the time if this could be a cause and they ruled it out because I had regular periods and no problem conceiving although I was pointing out to them that I had a lot of the other signs (father was bals before the age of 30, I have developed lots of skin tags, have weight gain, spotty skin, have turned into a hairy yeti -God I sound attractive don't I? Waxing, foundation and bridget Jones knickers do work miracles though you know). Anyway at least this guy is on the ball.

He seems to be confident that he can fix me and has said that as soon as I get pregnant again (obviously after starting the medication - we have decided to wait 3 months) I ring his nurse (she was there yesterday also and is lovely) and they will arrnage for regular reassurance scans starting at 4 and a half weeks so that they can carefully monitor the pregnancy's progression and check that size etx is correct for the gestation.

So what do you think to that then eh? I'm quite shocked. I honestly thought that they would be telling me that there was naff all they could find and bugger all we could do!

Hi Shazzaren, sorry to hear your consultant is so... er... difficult! It is so hard when you encounter people who are supposed to be helping you, but make you feel like a number, or worse a nuisance. Luckily, some people I've encountered (mainly nurses and my GP) exude warmth and confidence, and it makes me more confident. I really hope that your last bash at this bloke is successful, or else you find someone who makes you feel confident.

Hello everyone! I've been reading mumsnet threads all thru my last preg, and MC that ended it at 13 weeks on Jul 16th, that was my 3rd in 10 months They all been missed MC, so later today am off to recurrent MC clinic at St Georges - anyone had experience of their clinic? I'm a bit anxious about it all, no tests done yet, but at 11 weeks preg nuchal fluid was 6mm so was put under fetal medicine unit and they did the chromosome check on me & hubby that came back clear thank god, am gonna find out if baby had chrmosome problem today cos they tested tissue after D&C. Also had retained placenta after D&C & spotted every day for 5 weeks, UGH took loads of antibiotics & finally got period last weds, 4 weeks to day of op (still like clockwork! ;) Think it all came out but am guessing will do US today to confirm? Still worried about effects of that & desperate for closure & to move on & ttc again, but figure will have to wait til test reults & stuff? Anyway folks, sorry to ramble on, but this my first post and its great to offload and know you all know exactly what I'm goin through, you've been really inspiring and as name shows, keeping my hope alive! Good luck to you all & fingers crossed for us! xx

Hi me again! Just had to vent after yesterdays dissapointing apt at recurrent mc clinic. Was expecting tea & sympathy, explanations of tests & treatment, REASSURANCE even! Instead we never see our specialist, we got a doctor who had none of our notes, didnt know about retained placenta, which now delays all tests as only classed as completion of miscarriage when all gone she didnt know results of our last babys chrmosome test, or even that it was done, and argued we couldnt have had parental chromosome test done in July cos results take 4 months , ended up wondering if I'd imagined it, although hadnt & results were clear but again she had no notes, eventually realised as done under director of fetal med unit he'd put it through as urgent in 10 days! How bloody frustrating, I was in tears in there, and TNTO, I know how you felt! Poor hubby just quiet, half thinking whats going on, half thinking my wifes gonna kick off in a minute!
Instead I now realise this was like pre-assesment, and having calmed down, understand that she couldnt act on info she never had, and as norm with NHS, communication breakdown between depts, so not tech her fault, although cracking a smile and acting human might have helped things along! ;) So had blood pressure, gave wee(!), had internal & swabs, then she started saying we'll get you back in 2 months-again i'm freakin thinking HOW LONG?! After more tears she agreed to make it 1 month! Then gives us forms to arrange scan, get blood during AF (4 weeks away ), make appt with actual specialist Mr Manyonda in 4 weeks for results of all (& hopefully more positive experience and outcome than this crappy appt) then a form to get some bloods took there and then (tho never explained what any tests were for, only the fact we researched that we knew, so we came out of that clinic, & all other clinics & booking office in same manic area, so walk over to reception/booking desk, evryone gone home for day (by now its 5pm - appt 3.40pm, not seen til 4.20pm!), go to book scan, nurse locking office door, go to give blood, and door locked & also gone home! Would be absoultely fuming, but thankfully have final ultrasound at EPU today to check 'retained product' (lovely term) gone, and finally healed from mc now 5 weeks ago, EPU in same area as bloods & booking office so thankfully we can get what was meant to be arranged yesterday, today, but pure chance we had this appt or we'd have had to trail back up there anyway! What a farce. Left k=not knowing if all tests should be having have been arranged properly or not, so will call specialist secretary to confirm, and also fetal med unit to check I didnt imagine chromosome ok, and if results of what was wrong with our baby are back.. I'm really hoping that apt in 4 weeks turns it round, spose I was hoping 4 a miracle, or at least the kind of pos experience worrybum had! Oh well - thatnk yu again for listening and sorry to ramble on again! Will let you know how things go folks! Continuing good luck to the rest of you and lets all stay everhopeful! I refuse to let this grind me down!

Hello there, wish I'd seen your post yesterday to wish you luck. So sorry you had a crap experience... it is so upsetting, and draining, isn't it? Like you, the total confusion at my place, plus lack of care, reassurance etc really hurt, so I really get how you felt yesterday. Just a note in the appointment letter saying 'this is a pre-appointment prior to your specialist appointment which will be about a month later' would have let both of us know what to expect.

Congratulations on your chromosome results being clear, at least that's one part covered. And all my wishes for you today at your EPU appointment today.

Keep me/us posted... xx

Hello 4eh,
sorry you had such abd time yesterday, it is so disappointing when you finally think atleast we are gonna get some kind of answers/results today then to get a dr who knows barley anything about your individual situation is just crap! I once emailed My Mayonda at St Georges and he emailed me back explaining about his private clinic where he could test for immune issues such as NKcells etc, he seems a really nice helpful man or i could have got a referal from gp to see him on the nhs, i decidied in the end to see Mr Shehata instead at epsom on the nhs. Goodluck and takecare.
sueXXX.

Hello everyone. Could someone enlighten me as to the difference between a pre-appt and a specialist appt at a recurrent mc clinic? Are tests arranged at the first and analysed at the second? How do they decide what tests to do on the parents?

Found this thread as feeling very low due to 2 mmc and 1 mc in past year.

Doctor is to refer me to clinic (he said I would have to wait a minimum of 17 wks - is this correct?

He is a locum so praying he does send the letter off)

(Already have ds of 14 - no problems with this pg (previous relationship)

We have no problem in conceiving - it seems at around 8 wks my body gives up.

nervous as know one seems to be able to let me know what to expect.

From limited experience, make sure you call the clinic to ensure they have the referral letter. If not, chase the doctor. Other thing is, call the clinic often to see if they have cancellations - a quick way to be seen earlier. It works in other depts.

Don't mean to sound ignorant but do you know what the clinic is caused?

Hi Clairedaz, similar boat to you, 3mmc at 8 weeks in last year. 17 weeks sounds way too long, also, how would the doc know? St Mary's said they were booking 7 to 8 weeks forward - not too bad at all, spoke to them last week (RMC - recurrent miscarriage clinic). Not sure about the others. You ok?

I'm ok - as you know the emotions are on roller coaster.

Thats reassuring shazzaren about the time wait, I may leave it for a week then possibly contact the clinic direct to see if they have received anything.

Just one more quick point. Not all hospitals have RMCs. Mine only has a Fertility Clinic that will also see those of us with recurrent mcs.

Hi TNTO and Sue! Thanks so much for replying! I almost cried reading them cos I've read these posts for months & means so much that you ladies understand exactly & we don't even know each other & you're so lovely! The rollercoaster continues tho, fridays scan at EPU shows still retained products so I'm having another ERPC op tomorrow (the 3rd in 6 months) gutted, but glad for closure finally 6 weeks later.. Now all tests on hold so will keep you all posted when the ball starts rolling again.. Good luck & best wishes to you all xxx

Having a bad day today, trying to keep a cheery face but deep down could burst into tears.

Got an appointment at doctors cause now keep getting numbness & and tingling in left hand, also feel tired all the time.

What is going on - also after a mc did anyone go back for a scan to make sure everything cleared out?

Hi clairedaz, sorry ya having a bad day (can i join you), it's so hard is'nt it some days!!! After some of my mc's i had a scan to check all products expelled but not every time. You could always ask for one if you are concerned.

4everhopeful, i am so very sorry for what you are having to go through right now! Am just shaking my head in disbelief that you are having to have another one, sending you heartfelt hugs my lovely.

All these losses, it's just so unfair and very sad. What's the answer, i wish i knew!!!
Takecare ladies
sueXXX.

Have finally received a letter from hospital to make an appointment to see a Gynie consultant. Can anyone give any advice on what to expect please?

Thank you

Hi Clairedaz

Who is it you are going to see? Is it on NHS? I can only give advice of private consultants and that they take all your history and do tests there and then in my experience. Happy to elaborate if you want? Did you find out what the tingling and numbness in your hand was? So was 03.20 this morning an early start or a late night????!

Sharon
x

Soory I haven't got back sooner.
This is NHS.

Tingling and numbness could be start of carpel tunnel syndrome, still comes and goes.

And as for the time couldn't sleep.

Didn't realise this thread was still going. How is everyone doing?

Hi, I am feeling pretty positive after moving consultants and he tested me (positive) for NKC therefore on steroids post ov and is treating my PCOS with metformin. Plan is for me to take progesterone when pg. Thank goodness finally getting some help, ovulating this weekend so phone off the hook, batteries out of the doorbell!!

Worrybum, how are YOU doing? reading back you were going to wait 3 mths before ttc again? Did you get any treatment for the pcos like metformin? And have you been tested for NKC?