Recurrent Miscarriage Dilemma!

[mrsdex]

Hi Everyone,

I am writing in the hope that someone... anyone can throw an extra idea or 10 my way.
I am currently loosing my 4th pregnancy since June this year.
I have a 12yr old son from a previous relationship, a trouble free pregnancy & birth.
Getting any "REAL" help from a doctor / specialist is proving to be a huge drama.

I demanded a referal to the Royal Womens from a local GP after my 3rd loss - Granted I was given it. The Royal Womens booked me into the Reproductive Services clinic, not the recurrent miscarriage clinic (perinatal) as requested. Never the les we attended our apointment in anticipation of what help it would offer (believeing perhaps my gp had the clinic name & the services it offered wrong, but the hospital read the details of my case & is really responsible for booking me into the wrongly suited clinic) & they have taken bloods from both my husband & I to have "genetic" testing done where they assure me we will likely find nothing "clinically" wrong anyway. Com back in 6 weeks & in the meantime, it's more than likely just bad luck! WOW if I had a dollar for everytime I heard that I could have $100 to spend on pregnancy tests every month!

When I found out I was pregnant again, I contacted the hospital -Whom informed me, my doctor was on leave & I had to go to a gp AGAIN & get another referal to the prinatal clinic stating that my case was of urgency & I needed an appointment. Even though a doctor that works along side mine made the suggestion?!? & I am patient of the hospital.

So I sucked it up, did all that now the real drama begins!

My hcg has dropped to 8 over the last 72 hours, miscarrying again is inevitable. Again, I call the hospital as my doctor in Repo services said he wants me to have a curette in the event that I do miscarry again. I speak to the perinatal clinic & explain the situation who says they will transfer me to Emergency & I should inform them so that they know to expect me in the next couple of days. They take my Jan 7th appointment off me & give me one in MARCH as I am miscarrying & my referal marked as URGENT is now useless to me because I'm not pregnant! When I should have been booked in there with my original referal sent in October anyways, not repo. services!

I speak to emergency who inform me that there wont be enough tissues to test from a curette due to miscarrying so early & sorry... Best of luck! ****!

My first 2 losses were @ 5 weeks, second at 4w 1d & I am 17dpo today & wil no doubt start to bleed within the next couple of days, making this also an almost 5 wk loss.

Can ANYONE recommend a doctor or specialist that takes care of Recurrnet Miscarriage cases?!? I dont care where, or how, or the cost or the effort required. I don't demand answers, sometimes there are none, but I want a plan of attack, someone that will help us & someone that is capable of managing our case.

I'm can't believe I am constantly self diagnosing, arranging my own referals & even getting contact details for gp's who know nothing! I am my own advocate at the moment... Lucky my desire to compete our family is over shadowed by the careless efforts of others & I'm more determined than ever to make this work.

I would have loved to be able to spend a little quiet time greiving & rebuilding my strength to start climbing the TTC mountain again, rather than doing everyone elses jobs for them! But no such luck hey...

Thanks for thaking the time to read my ramble - Love & Best Wishes to you all

[Jaycee]

Mrsdex, I am so very sorry you are going through this.
I don't have any advice, but couldn't read your post without offering my support, four losses is such an awful, awful thing for you to have to go through, and it doesn't sound like you're receiving much help from the hospital either. Is there somewhere else you could go?
I really hope you get your sticky bubba soon.
Take care
xxx

[melbel]

HUGS Hun........I also have lost five little bubbas on the six year journey to the little one I am now expecting in a few weeks. I am also in Melbourne and despite this I recommend looking in to seeing a man called Gavin Sacks in Sydney...we flew up to see him last year sometime and he did extensive testing which showed up an immune system issue that was attacking my babies before they had a chance......using his treatment recommendations and working collaboratively with my specialist here in Melbourne we are now expecting our little boy in just a few weeks. A lot of other ladies here will speak highly of him as well.......

[shellbell3]

A good friend of mine had 4 m/c and told the whole 'bad luck' crap. She found a doctor eventually who has taken her seriously and took blood tests trying to look for something, listened to her concerns etc, made her feel much better. She is now pregnant again about 7.5 weeks and so far things looking good.
She has now referred her onto a high risk obstertrican.
Dr Flue Cattrall is the fertility specialist and Dr Susana Kotevska is the high risk ob she has been sent to who is also a fertility specialst. Hope that helps and good luck. (hope the name spelling is right too)

[mrsdex]

Thank you for your ideas ladies! It's exciting to know that I have found a few more possibilities / avenues to follow!

Gracious_Goddess TY from the bottom of my heart, your thoughful words are more appreciated than you can imagine possible! You are just gorgeous!

Melbel - AWESOME! Finally a sticky one on the way for you and so well deserved might I add. 5 losses no doubt was quite a horrible journey for you & your closest loved ones. Thank you so much for the advice, I will be sure to research Gavin as soon as I have completed my post! Enjoy what remains of your pregnancy & my best wishes are with you for bubs arrival! x

Shellbell3 - More awesome info for me! I'm so pleased!!! & have my fingers crossed for your friend harder than you can imagine possible! Thanks for popping past & I will be sure to follow up the lead you have given me.

You ladies are fantastic! I feel more relieved now than you can imagine. If anything this crappy experience has made me more determined to make this happen somehow, someday... But I will be sure to let you know when it does!
I really feel that there is a "reason" and its findable... & now I just need to find someone that wants to find it as much as me!

You ladies have really made my day, best I get back on the bandwagon hey!

[dory]

Mrs Dex

I am so sorry sweetie. Early miscarriages are tough too.

There are some Drs in Sydney who work in an emerging field of recurrent miscarriage - natural T killer cells, which I understand may contribute to early miscarriages, especially when you have had a successful pregnancy in the past. One is a Dr Sachs at the Sydney IVF clinic. I didn't end up using him yet, but the info on their web site is reassuring. I also called the clinic and the staff were pretty helpful. Sixty Minutes also did a segment on a patient of Dr Sachs who had experienced 20 m/c during her journey for multiple children. It was probably son time in October/November.

You will need a referral from your GP. You can have an appointment by phone if you are interestate, but if you have a phone consultation you can't claim medicare. if you attend the consultation in person in Sydney ( Bondi Junction - it's on a train line) then you can claim medicare. I can't remember the estimate fees for the consultation.

There are a whole heap of tests suggested for recurrent miscarriage. If you look at the book by Dr Alan Beer - Is your body baby friendly - it details some of the issues and tests. It is an emerging and controversial area, natural T killer cells.

There is a sticky at the beginging of one of the forums of what types of tests others have had.

I recommend you make a written request from your GP & Hospital for copies of all of your test results

In my experience, you are most likely to have had chromosone testing not genetic testing. Usually genetic testing is performed by a genetic counselor and can be quite expensive.

The squeaky wheel gets the oil - sadly, as hard as it is for you, you are the only person who can advocate best for you, no one else is going to do it. Be strong my sweet and as much as you can be gentle on yourself.

[mrsdex]

Dory,

Thank you so much for taking the time to leave me a post.

In thinking about the testing... I think your right about the chrosomal tests being done, and perhaps not the genetic. Gosh, I wish I had copied the lab slip!

I have also started summonsing my medical records to keep with me for future reference - Great idea, especially since we moved in Feb this year & I have visited 2 different surgeries since, in the attempt to find a gp as wonderful as mine back on the other side of town.

DDDDDH & I have decided to wait till Jan 11 for our appointment with Reproductive Services @ RWH, see what the testing (& drs attitude) reveals & then make a decision from there as to our next move. We also have an appointment at the Recurrent Misc. clinic in March that may prove useful, goodness only knows!

But we are certainly geared up to head on up to Sydney should we feel we need to up the anti also.

Your kind words mean a lot Dory, thank you & my best wishes are with you & your BB journey

[HotI]

In my experience, you are most likely to have had chromosone testing not genetic testing. Usually genetic testing is performed by a genetic counselor and can be quite expensive.

Chromosome testing is one type of genetic testing. A chromosome (it looks like a chubby X) is a string of DNA all wound into a particular shape. Along the length of DNA are specific markers that say this is the start of a gene, this the middle and this the end. So, many genes make up a chromosome.

For chromosome testing, they look at the chromosomes under a microscope (when they are at the chubby X stage) and check that you have the correct number of chromosomes and that they are all the correct shape and size.

Other forms of genetic testing are when they look at specific parts of a gene to see if all the letters and markers are in the right order. THis is more detailed and smaller scale, and can't actually be seen with a microscope so involves other techniques.

[traylee01]

i have posted in a few sections,
im sorry on your loss
but ask your drs to check you for thrombophilia and factor 5 ladien, as they dont always test for them, and thats what my aunt had once diagnosed she had a baby.
see how you go and good luck

[dory]

Kate07 - thanks for the clarification. I was just going on what i was told, and unlike me I hadn't actually researched the differences. Lesson for the future huh?

MrsDex - you're welcome. It's a journey that none of us expect to be on, but some reason we are. If we can give each other some comfort, support and friendship along the way, then more power to us. Who else would really understand? Good luck.

[KateStrang]

Hi,

I also had unexplained miscarriages (2), went through the mill at RPAH / "shared care" system with local GPs - they just said keep trying and weren't willing to investigate the problem until I'd had a 3rd miscarriage. But at 38 years old the clock was ticking and my window for success was rapidly closing + I just wasn't up to going through another miscarriage.

Then I read Alan Beer's book late last year, which led me to Mark Beale (obstetrician / gyno') - absolutely brilliant, can't recommend him enough:
Doctor Mark Beale - main menu

Saw Dr Beale just before xmas 2008, conceived in Jan 2009, and with Dr Beale's help I now have a perfect, beautiful little baby boy (born in Oct 2009). Turned out I just had insulin resistance, which is relatively simple to manage.

Clinic is in Maquarie St, he delivers at Prince of Wales Private Hospital.
He is very experienced, thorough, careful and a genuine human being who really listens and understands. He deals with difficult cases every day, especially "older" mothers (after 35 years old you are virtually written off as unviable by alot of practitioners), PCOS, etc.

You just need a straight forward referral from your GP for an appointment.

Wishing you good luck.

cheers, Kate.

[dory]

Kate - congrats. If you don't mind my asking - at what stage were your m/c? Glad to hear you found a special doctor in the end. I have read that book too - it's a goldmine of information.

Mrs Dex - how you doing?

[KateStrang]

5&1/2 and 7&1/2 weeks

[dory]

I am so happy that after your heartbreak you are able to nurture and parent your little one.

[Hollybolly]

Just another one who can add to Melbel's recommendations for Dr Sacks

Even if you search him here on BB let alone the internet in general, you'll find a STACK of info that will help you - there's a lot of us on here who owe where we're at to him in one way or another.(He's known as Dr S on here mostly )

If you want any more info, send me a PM - everyone on here has read more than enough posts from me & how highly I think of him

ETA - My DS will be turning 12 just after my new little one is to be born - so I completely relate to your frustration

Best Of Luck

[mrsdex]

Thanks Ladies!

Dory - So pleased to hear from you & a HUGE congrads! I left you a post in the ttc forum shortly after you had posted that you were not well & felling rather glum. So I was elated when I returned to see that you had surfaced again & read your brilliant news! Stay strong & I hope the coming weeks treat you well, keep me up to date.. You will be in my thoughts & prayers

My latest is not fantastic... I am 4 weeks today however...
All of my bfps have been very faint for the last few days & seem to be diminishing again rather than darkening at all. I had a spot bleed 11 to 12 dpo that ceased (has never happened before & I actually placed a thread on the pregnancy after mc board about it) still I am getting faint bfps (even today!) but I really feel that my levels are not increasing, not being negative - just realistic. It would have happened by now if it was going to at all.

I had my return appointment at the RWH with the Repo specialist, another JOKE of an event! I saw a different dr to get my results who could not even find the notes in my file from my last visit! Then he managed to reveal my results, lucky they are all on a computer data base! - none the less, all promising. Karotyping for DH & I was aok, clotting not an issue & thyroid function clear.
Then rips out...wait for it... I THINK YOU SHOULD SEE SOMEONE IN THE RECURRENT MC CLINIC downstairs!!! My immediate thought was NO ****! TELL ME SOMETHING I DONT KNOW!?!!? But I remained calm, explained the situation from start to end again for the millionth time & got the old... im sorry for what you have suffered & the nightmare this hospital has burdened you with - BUT you still have a 70% chance & I wish you all the best. END OF STORY!

Anyways, DH & I left there again with no answers, but more questions. Then only days later I got another BFP knowing I have no one to help me through the inevitable, no treatments to attempt - just left to sit back & watch it happen all over again.

BUT! (jeezus, i havent had a ramble like this since my first posting!!! LOL)
I have my appointment in March for the RCMC clinic, regardless (after their horrific stuff up!) & will also now hunt down Dr. S & get another ball rolling! I do realise how lucky I am that DH only has to look at me & I'm preggo. Thats why I cant bring myself to post in the TTC forum, I see what the other poor women go thru & would just feel like a fraud being there & then when I am preggo I feel like a fraud to post in the preggo forum becuase I know I'm not a stayer (again not being a drainer, just a realist - I cant post when I dont feel 110% about it) & don't wish to scare other women that need all the reassuring they can get.

Anyways, thats the saga to date! Ahhhh, if you dont laugh you cry hey... You just make sure you keep in touch Dory & take the very best of care - I have everything crossed for you x x x Whats your edd?? & what week are you in now??? ooohhh, I want all the goss!!!

HB KS & Traylee Thank you all for the advise - I take it all on board & cherish it. I refuse to be a statistic & you ladies help me on that road. The only place I have got any real answers is the bloody internet! LOL! Seriously, you guys are great & I send my genuine love & thanks

[dory]

MrsDex

Oh sweetie. You are doing it so tough right now.

Can you go to your GP and ask for a blood test to ascertain your HCG levels? But it can a vicious cycle, of testing each week and waiting for the results..... when I did it, looking back on it, it was torment. But maybe whatever I did would have been torment?

I got your post in the other thread - it was so nice of you. I didn't remember writing what I did to you, but it was good to get it back!

I am 4 weeks and 3 days today. Still early days huh but such an eventful journey to get to even this point . Sometimes I wish I didn't find out so early about the pg because then there would be this, by comparison to now, blissful time where I wasn't as apprehensive. Until you've been there yourself it's hard to describe and understand the torment of how each time I go to the loo and I wipe, I look for blood and am surprised when I don't see it. And at the moment I am going too the loo a lot! I hope I'll get a handle on that one soon, else it's going to be pretty rough journey.

I so totally understand about you feeling like you're a fraud, about which forum to post in and about scaring other women. I have a friend who has suffered a late term still birth and her experience didn't "scare" me as much as I thought "Geez, I hope that doesn't happen to me". And at that time, I still had a lot of niaviety and just didn't ever really consider that it would happen to me ( I suppose it hasn't yet, but the heartbreak has). So don' worry about "scarying people". They will either be blissfully niaive ( can't spell that word today) or they will have like you walked a path that gives the wisdom of solomon and an unremitting fear of unhappy endings. If you need support you post where you think you are going to get it.

It's frustrating that you had the experience you did at the hospital. It would have been scary just out of the blue hearing that you should get a referral to the recurrent miscarriage clinic, when you were experiencing the symptoms you are.

I know the pure torment of what you're going through right now. I wish I could make it better, but I lost my magic wand. Hang in there girl.

[mrsdex]

4wk 3 days hey! Thats fantastic... Think as confidently as you possibly can!
I know how hard it must be & the constant wondering can just about kill your nerves, but one day at a time & cross each bridge as you get to it.
Best of luck Dory x