Not sure how to keep going - fifth m/c

i don't know what i'm hoping to get from this post - maybe just an outlet to spill all the stuff about these losses that i seem to have bottled up inside of me

last week, i miscarried - again. it was another early loss, and it seems to mean nothing to so many people. in the grand scheme of things, i was really "only just" pg - but i KNEW for a week, so for a week, i knew i was going to have a baby. i've been through this so many times, i know the difference in my body when i'm pg as opposed to the meds they put me on. but it is, in the nurses words, nothing. it's a chemical pregnancy. that nice line on 13dpo that disappeared at 14dpo and turned to a massive bleed 15dpo means nothing to them. i have a 14day LP - i might not have a cycle as such, but EVERY assisted cycle i've had that has been unsuccessful, my LP has been 14 days. so i KNOW that positive on day 13 was right. i KNOW i was pg but something went wrong - AF didn't arrive when she was due. but my levels 15dpo registered me as a negative result - too low to worry about. but it's not HER that has to worry about it. it's ME. i've subjected myself to invasive procedures, done everthing i've been asked, had every test they've asked me to - and our angel gets shrugged away like it doesn't matter.

i'm at the end of my tether. denial seems to be what keeps me going. who wants to admit to 5 miscarriages in just over 3 years? i don't know what to ask my FS at our appointment in a couple of weeks - what tests can i ask for, what right do i have to demand more investigation? how do i make him understand that, whether it's termed a chemical pregnancy or not, we HAVE had embies try to stick, they're not sticking - and i'm spending so much time hating myself and blaming myself for not being able to hold onto them. it's impacting my relationship with DH - i feel like i'm pushing him away cos i don't want to feel guilty, but at the same time, i'm trying to hold him closer cos i need him to protect me from the pain we're feeling.

i can feel myself becoming more and more withdrawn from my life as i try to protect myself from this - and i hate it. i want to be the person i was three years ago - the social person who could relax, and not constantly be worried about how things would interact with medication, reduce chances of pregnancy... we've put off the full blown IVF til the end of the year - i just can't face it at the next local clinic. but now i'm hating myself again for delaying the chances of success - for holding off on giving DH a child. i feel like it's all my fault - his boys are doing their part, it's my body that is rejecting our embryo's....

if you've read this waffle, thank you. i don't know that anyone can offer any advice (except maybe "go see a shrink girl, you're nuts!!"), but just being able to vent a bit and get it off my chest has helped. there's a lot more going on in my life that is adding to this, but i needed to get this part off my chest so that it was one less thing bottled up inside...

BG i dont know the right words to say...other then im terribly sorry for your angel growing wings. I do hope that you can seek the answers to your questions. *Hugs*

Oh hun, I'm so sorry :( It doesn't matter at what stage your baby becomes an angel, it was still YOUR baby and you loved them, even if only for a little while. I don't know what I can offer you to help ease your pain, but keep letting it all out. *hugs* for you.

Sorry I too dont know how to ease you pain...

your babies were your babies dont let anyone tell you otherwise... they will always be apart of you...

I truely wish there was sometime else I could do or say to make this right... Please dont blame yourself its not your foult for any of these losses... Hold your Loving DH tight and never let go he is the one person in this world who know excatly how you are feeling so let him feel it with you...

wish I was closer and I would drive right over and give you all the boney shoulder you need to let it all out on :hug:

BG, big hugs hun. Of course it matters. It is still devastating no matter how far along you are. Especially when you've been waiting such a long time.

I wonder if they have done any investigation into why you might be m/c? I know there are many different situations so this might not be at all relevant. But a friend of mine fell pg after 5 years of trying, 3 on IVF. She had an early m/c but the fs thought it was a big step forward (to have even conceived) and did some bloods and things. Turns out her immune system had attacked the embryo and with immuno-suppressants she wouldn't be able to carry. Next cycle she fell pg with twins who are now 2 1/2. Maybe this is something you can discuss with your fs?

I certainly hope that you get some answers and some really good news soon. It has been a long journey for you. That pot of gold at the end of the rainbow can't be too much further away.

Take care hun.

I'm so sorry, I can't imagine how you're feeling, it seems too much :( It doesn't matter how long you knew you were pregnant, you still knew, and you got excited, and it was a life no matter how short :hug:

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i don't know that anyone can offer any advice (except maybe "go see a shrink girl, you're nuts!!"

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Hun i dont have advice or words of wisdom but i certainly dont agree with this :hug: I'm so sorry to hear of your recent loss. As you know a loss is a loss at any stage so you have a right to grieve. My thoughts are with you. Be gentle on yourself.

Awwwww BG :hug: I don't have any AC advice other than what MR suggested but wanted to let you know that you are NOT nuts, and that no matter when a loss occurs, it is still a loss. There are still so many hopes and dreams pinned on that little person becoming a huge part of your life and then all of a sudden they are gone :( That doesn't change, so you have every right to feel sadness, anger and go through the grieving process and that is what we are all here for. :hug: for Mr BG too- he must be grieving but would hate what you are going through and the pain and guilt you are feeling. Thinking of you hun, and only you know where to go from here. Take some time out and assess in a few weeks when the pain isn't so raw babe. My thoughts are with you and DH.

Hun, I'm sooo sorry. I have no words, other than to say that this is not your fault. You are doing what you an to try to sort these things out. There is alway some level of faith that has to be put into making babies. It isn't all up to you or your DH, or doctors. Some of it is up to higher powers whether that's god/jesus, buddah, or mother nature or whatever it is you believe in.
You've had your fair share of heartache, unfortunately some have more than others. I hope that this the last for you. :comfort:

But isn't 5 m/cs enough to warrant further investigation?

What would be the point of full blown IVF when the chances that another bubs can't stick again? I keep thinking its an autoimmune thing, I don't understand how much of this works, but this should SURELY needs to be looked at.

It seems to me that you will have to get firm with the FS again. You know your body SO WELL.

Look you are still in your twenties, yes DH is older but my dad was 50-odd when I was born and I'm not the youngest. NO problems with keeping up with anyone, in fact when I go for a "stroll" with him I'm always running to catch up....

:hug:

Oh sweetie...I am so sorry. Everything you have said...and how you're feeling...I've said myself and you have always been there to help me through. It's not fair...it is too hard and it feels like in this moment no one understands the pain and frustration...it's just so hard...and why wouldn't you try and protect yourself...I wish I could make it all better...you are an amazing woman...take time and do what you need to do...I'm here for you xxx

BG I am so so sorry to hear of this. I have been following your story and you are such an inspiration. Nuts? I think not, just an amazing chick with a massive heart.

I can never find the right words - but all I can do is hope that your next BFP is a very sticky one - and I am so so sorry that your little angel left :hug:

:hug: BG.

You may remember that one of the things I was most scared of is that my clinic wouldn't acknowledge the early losses as being pregnancies that were lost... I did find that the nurses just wanted to write it off as "just a negative", but I was relieved to find that my FS was more than willing to acknowledge them as lost pregnancies.

As for testing... you have EVERY right to demand further testing! I had testing after the first because I just knew something wasn't right. More testing came later because I knew that we still didn't have the big picture and there was something else going wrong. Some doctors will insist on waiting until you've had three losses before doing any investigation, but they certainly can't use that argument on you. :(

If we look at the facts here... you KNOW something isn't working right in your body. There's ample evidence of that. You know from riding along with my tests and investigations and random thoughts that the main causes fall into two categories - autoimmune and clotting problems. I recall that there's a fair bit of family history and other evidence to suggest that the autoimmune thing could be a problem. Your FS may not be up on the fancy tests of the likes of Dr S, but he can still test for the basic autoimmune problems, and the blood clotting problems.

Even if the testing shows nothing, there's nothing to say that you can't jump up and down and scream at your FS and demand something be done differently, that you use a different protocol "just in case". Aspirin and prednisone aren't all that invasive, aren't expensive, don't go too far in terms of nasty side effects (although I do half suspect I've been on prednisone so long I've forgotten what's normal and what's a prednisone side effect), and aren't going to do any harm if they aren't needed in the end. There are more than likely other options that I'm not as aware of as well. I believe there's some evidence that they can improve outcomes even when tests show that there's no medically verifiable need for them. I know of clinics (usually in the US) that use aspirin as standard procedure regardless of what testing may show.

I know it's scary to approach your doctor and tell him that you're not happy with how things are going and that further investigations need to be done, but I seriously doubt that he'd be turning you down if you asked for further testing. Perhaps this is why he has insisted on another consultation rather than back to back IUIs this time?

I've always been the kind of person to spring into action and do something rather than take the time to deal with the emotional aspects of things, and I can see where that has caused me problems in the past - but I think I can quite happily say that you are NOT nuts (the title belongs to me, remember?).

Hang in there... see what the FS has to say for himself, see what he says to further testing and possible reasons for this to keep happening. You know there's loads of people behind you every step of the way. :hug:

BW

I'm sorry to hear your news. :pray: that you have some comfort right now. Words just cannot express.

I agree with the others... A loss is a loss, no mater when it happens. As soon as you see those two lines it is real (well it was for me). I think you need to ask for those tests. I had three early losses using Clomid, and when I was looking into IFV I insisted at my first appt with my FS that I have a series of tests for miscarriages cause I was not going to into IVF without knowing that I could get further than 5w pregnant. The fact that mine came back clear gave me the confidence to know it was not my fault I had those losses, and not think of myself as not being able to carry a baby and gave me a reason to keep on trying.

You need to find out for yourself either way so you can go on to have your dream. :hug:

Awww BG :hug: I don't know what to say other than to send you lots of love & hugs.

Bg I`m so sorry :hug:

BG :hug: after my early loss where i felt much the same why doesn't anyone care but me, the clinic did the big shrug off and i was devastated , "your feelings of despair and grief are valid because you are feeling them , let the feelings out they are no good to you bottled up inside " :hug: i hope you find some answers soon

Oh BG I am so sorry for your loss. :hug:
A loss at any stage of a pg is still a loss no matter what anyone else says.
I hope that you and your FS can find the answers why this has been happening to you :pray:

BG,
i am soo sorry you are going through this ONCE AGAIN!
its not fair

time to dig deep girl and demand some answers. Definately time to get your FS to stand up and ask some questions why this is going on and do something about it!

Just an idea- have you had the thickness of your endometium(sp) checked ?? My AP believed that i was feralising every month but my endometium was thick enough for emby to implant. He fixed this problem by improving my blood flow through to my uterus to ensure it was thick enough at the right time!

There has to be a reason this is happening- time for you to kick some FS butt !!!!
Hang in there hon
you know where we are if you need us
odette

I'm so sorry you are going through this BG. I have no words that can ease your pain or answer your questions unfortunately but I can give you heaps and heaps of :hug: along with all the other wonderful women supporting you.

thanks ladies

i'm planning on trying to get some immunology testing done (if it wasn't already done - my first FS visit i walked away with a pathology request form that was overflowing with test requests - and had 15 vials of blood collected!). i will push the issue as i can't keep going through this pain

odette - i've had endometrium checked every cycle we've done when follicle development has been checked - it's always between 13 and 17mm - apparently they like it to be a minimum of 7mm - so i'm good on that one.

i just need to build myself up to telling the FS that i want more investigation - he's one of the pioneers of ivf in aus, so i feel like questioning him with all his experience is like saying i know better than him - which i don't - but i need to know why this is happening! if i'm bound to not have children i need to know so i can grieve and move on.

BG - a loss, regardless of the time of loss, is still a loss. The loss of the hopes and dreams attached to those first few moments when you realise you are pregnant. The nurses need a serious case of empathy and understanding :angry:

As for the FS - any doctor worth their weight is open to additional reviews. They are human, not God (despite some having some serious God-like complexes) and additional review of your individual circumstances can shed a new light or angle they may not have seen.

I had to fight to get tested as 2 of my miscarriages were chemical. In the end they found a clotting issue that *shouldn't* have caused any problems. 1 doctor said I didn't need treatment, 2 said they would treat. I listened to the IVF doctor who I believed had more of an idea. I was wrong and I lost my daughter. Treatment may or may not have helped but I will never know and I can't change what has passed.

Get a Dr S opinion. You are at the point where you need that different perspective. Consider some of the other options like aspirin and increased doses of folate. Prednisone is also an option. The first two have minimal to no side effects for you or the baby and can be taken pre-conception. The latter has side effects and risks but if you have the need for it, it also has some very positive and successful outcomes.

Thinking of you :hug:

Your doctor may be an expert in his particular field of medicine, but I'm stuck in the belief that medicine is more of an art than a science. Everyone's body works slightly differently, and what may not cause a problem for one person (or perhaps even most people) may be a big problem for someone else. Dcotors make the mistake of focusing intently on their particular little set of organs and ignoring other bits. If one body system is out of balance, chances are that others will be too. I wish more doctors would look at the bigger picture.

Being an expert in IVF doesn't make him an expert in BG's body. The only expert on the topic of BG's body is BG herself. If you know something's not right, speak up! Insist on the extra investigation. Your doctor can't know exactly what's going on in your body at any particular time, only you can even get close to knowing that. :hug:

BW

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Get a Dr S opinion. You are at the point where you need that different perspective. Consider some of the other options like aspirin and increased doses of folate. Prednisone is also an option.

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BG, I couldn't agree with Michelle more. I've been wanting to suggest Dr S to you for a while, but didn't want to intrude or seem pushy etc etc. After hearing of your latest loss, I really think it's an option you should explore.

Just yestreday I held a beautiful miraculous little boy in my arms - his mum (a very good friend of mine) has been on the AC rollercoaster for 11 years - in that time she had a daughter who is now 5 and has been trying for years for another. She has serious immunology issues amongst other things. All her other Drs gave up on her - she was put in the too hard basket, told she should be grateful to have her daughter (which of course she is and was, but that's not really the point is it??) and to move on with her life. A friend and I (another Dr S success story) finally convinced her to see Dr S and now, 12 months later she has a beautiful little boy. He just has answers that other Drs don't have. He really does work miracles. My friend truly believes there is no other Dr in the country that could have helped her to achieve a successful prg.

I know being in country VIC may make it tricky but Deb and a few others have managed it.

Give it some thought....

:hug: :hug: :hug:

DH and i have discussed, at length, the logistics of getting to Sydney to see Dr S. and there are a few things that have prevented us doing this already. firstly - the travel and expenses. i don't like flying, so it would mean driving to Sydney - which is around 10 hours from here. now, this isn't really a drama - DH drives for a living so he is well set up to drive - but i get car sick if i'm a passenger for too long! we did it at Easter, and we're prepared to do it again to see Dr S - but it would essentially mean both DH and I taking several days off work. i am able to take leave - no biggie there - but DH gets paid when he works (well, he does accrue leave, but he's used most of that to be with me when we've had our losses etc). we'd also need to arrange accommodation (have family in Bulli we can stay with, but i've heard that is MILES out of Sydney!!) which is extra dollars too. being that we would be away from home, i'd be making sure we stayed at least a couple of nights, as i have chronic fatigue and to go up and back within a couple of days would wreck me for weeks!

the other problem is the timing of appointments. from what i've read from others, one of the tests that Dr S likes to do is only done on Tuesdays and Thursdays - which would mean trying to get to see him before one of those days, and having a tentative appointment for the test if it's needed.... would mean being in Sydney longer, and given how many fur babies we have, the logistics of getting someone to care for them is damn horrific!!!

and then to the biggest issue. my current FS. ultimately, if i could get to sydney and see Dr S, with the blessing of my FS, i'd do it in a heartbeat - money be damned, inconvenience be damned!! BUT - and here is the issue - my FS despises people getting second opinions behind his back. i know of another BB member who sees my FS down in Melbourne - she got a referral from her GP to see Dr S, flew up to see him - and apparently the FS refused to have anything to do with his recommendations. he wouldn't prescribe the prednisone Dr S had recommended, he wouldn't monitor anything relating to Dr S recommendations... and that bit scares the crap out of me!! how can i go ahead and do what Dr S recommends if it puts me in the bad books with my FS. i don't have much choice in FS unless i want to double the travel for all procedures/u.s/BT's - at least the "local" clinic is set up to have most stuff done within 100k's of home - and things like BT's can be done and couriered - at their expense - to the clinic - i seriously doubt that would be possible with any other clinic - and the extra travel would do my head in!

i have been contemplating this visit for months - hell, our trip to Sydney at Easter (as much as being an opportunity to catch up with my lovely BB friends) was more about working out the logisitics of travelling for an appointment to see Dr S. and yes, we can make it work - but it's playing on my mind HUGELY as to whether it's worth the effort if it's going to p!ss my FS off and make life more difficult going through treatment...

Where is Dr S located BG? Bulli is about 1.5 hours out of the city itself.

i'm not sure exactly where we'd go to see him - from what i recall he consults in maybe Kogarah and Bondi... but given that i haven't done much to scope it out (i'm the worst person for "hiding" from this stuff) i'm not really sure

Kogarah, Bondi, the city... Kogarah would probably be your best bet, particularly as the hospital that does his blood tests is in the same location.

An email to Dr S would probably be the best way to start with him. He may be able to come up with a way to have blood taken locally and sent to Sydney. The reason I suggested starting with testing with your local FS is because of the whole second opinion thing (something my FS didn't like either). Fortunately, I was in the position where the drugs Dr S wanted to put me on were being prescribed by yet another different specialist who was happy to to do the monitoring and prescribing for me.

:hug:

BW

I'm so sorry for your losses BG. As the others have said, you have a huge heart and are such a help to many of us here on BB that it's just rotten that this is happening to you of all people.

I may be totally off the planet here but is there any way Dr S would do a phone/video consultation with you so that you don't have to travel to Sydney? I don't know if you have access to all your medical records but maybe you could send those to him beforehand. Maybe he doesn't need to see you in person given that (I'm guessing) a physical examination wouldn't reveal much and any tests he would order could (I'm guessing again) be done at another pathology place.

It seems to me that maybe he could tell you what tests he WOULD do and that you could then go armed with that knowledge to your FS and just telling him you've been doing internet research so that he doesn't have to know you've sought a second opinion. Look, I think it sucks that he gets defensive about second opinions but I can understand you not wanting to get him offside particularly as the logistics of seeing Dr S are so awkward.

Like I said, I'm just guessing here but that's the only solution I can come up with right now.

And no, you're not nuts, but after what you've been through it does help to let all your feelings out so keep doing that.

BG - I've had a chat to DH and if you can manage to get to Sydney, we'd love to have you stay here with us. We are about 1.5 hours max from any of Dr S's locations, most of them only 50-60mins. If you saw him in the city, you could jump on a train and be there in about 45 mins.

We have a big spare room with a double bed and heaps of room for your stuff (we're still sleeping in the spare room because mummy is a big sook and wants to be right next to L LOL!) You could stay a week if you had to, we don't mind.

I know it doesn't solve all the hurdles, but at least it's one you wouldn't have to worry about?? I know we've never met in real life and you may not feel comfortable, but the genuine offer is there babe. :hug:

The suggestion of a phone consultation is a great one, he does them all the time and it would be a good place to start. But I strongly suspect he'd want to do the uterine biopsy which would require you to see him in person because as far as I'm aware, no one else in the country has the facilities for this test. As BW said, he does this at St George hospital, which is in Kogarah, about 45mins to an hour from here (he did my lap at St George and travel etc wasn't an issue).

It's so disappointing that your FS is your biggest hurdle...

OMG - Willow i am in tears!! that is the most amazingly selfless offer!! what an incredible person you are (and your DH too!!).

i will talk to DH and see what comes of the appointment with the FS in a couple of weeks. i will be putting it to him (FS) that i don't want to proceed (safety net be damned!) until i have some answers - this isn't a simple medical procedure as the FS might see it - every attempt (successful or not) is putting our hearts on the line, putting us through a mammoth amount of stress, angst - and ultimately heart ache - and we can't keep doing this. i am lucky in that i have a most amazing husband that will support me and put up with everything that can be thrown at him - but even he is starting to crack under the pressure of all that is happening...

i will certainly speak to him (when i stop crying!!) and discuss it with him - might have to go see what i can find about Dr S online and arrange a phone consult on one of my days off so that we at least know over the phone what we're up against treatment wise

can i be a really superficial person and put it out there to ask - does anyone know the costs for the uterine biopsy upfront (the procedure as well as the testing itself) - as this is another thing we'd have to factor in to any travel plans...

BG - I truly feel your pain. I am currently going through my 4th m/c (all after AC) and very little answers.
I don't think i can offer you any more advice than these wonderful ladies have given but want to send you hugs and my prayers that you will get the baby you deserve.

On the side, anywhere on BB I can find out more about this wonderful Dr S? Maybe I should consider this option too?

We never had the biopsy done, but all the other tests I'm pretty sure were billed straight to medicare and didn't cost us a cent. Which was good as it was a 2-hour drive each way with hideous amounts of tolls for us! The costs of the consultations with Dr S were comparable to seeing our regular FS ($130 a go for him, I don't remember Dr S's exact figures).

Meredith, in the absence of answers, I'd seriously recommend seeing Dr S. There's been several threads about him in the past, I'll try to dig up some links for you.

BW

Meredith if you search for dr sacks on the forum, it will locate all the threads in which he's been mentioned. i've also googled dr gavin sacks this arvo, and it links you to the ivf australia website...

HTH

Meredith - I think you should. BG beat me to the details :)

BG - Willow beat me to the punch but I would be more than happy to have you stay with us too (and I am closer to all of the locations ;)) You could even split time between us if you wanted to stay but felt uncomfortable staying with one of us for more than a couple of days. I do have a little person too so it can be noisy but the offer is there too. I am on a bus and train line directly into the city (takes less than half an hour) and a short drive to Bondi and Kogarah. I am also a great chauffeur :)

ladies, just having the amazing offer of someone closer in to where we'd need to be than what my cousin is (the one in Bulli) is a massive thing for us - if we came up, we'd more than likely stay with my cousin (he's recently seperated, doesn't get to see family much as no one else up there) - but the option of staying with one of you lovely ladies if we have an early appt is HUGE!

thank you both so very much! you're awesome!

BG, you're more than welcome, I'm so glad you're considering it!

I can find out the costs of the tests - I'll have to speak to my friend and see if she can remember, might not get an answer tonight though because as i mentioned, she has a brand new bubba and well, might have her hands full! I'll give her a call this arvo/tonight. She's actually taking bub to see Dr S on thursday, which he's apparently very excited about! LOL, he's such a lovely man. He's doing a case study on her for his research.

Meredith - I'm so sorry you're going through this again too. It's just so cruel! If you google the IVF Australia website, you'll find contact info for Dr S there.

**ETA: BG, just remembered i have to drop some stuff off to my friend tomorrow so I'll talk to her then about the costs of the testing etc.

Hugs to you BG - I am sorry you had to say goodbye again. :hug:

It's time to take the bull by the proverbial horns! Yep it's a drive, yep it's probably costly but so are all of these losses - they are costly to your heart - your beautiful heart is breaking and your arms are empty. Dr S is not God - he is but a mere man (;)) He may have some insights - he may not. He will not and dos not make false promises or grandiose statements. He is a really nice man - really nice. His passion is helping women to fulfil their family dreams.

It sounds lke you have the accomodation sorted with Willow and Michelle. And the team here encouraging you on!

What I know is that we don't have all the answers. I say it often and I will say it again - one day there will be a name for what I have and what many of the women who cross our paths here on BB have. It's something. Our babies don't just die for no good reason. I have pieces of my heart missing that died with each of my babies - those missing pieces still ache. I don't want to see a heart hurt that can perhaps be helped.

What you need to do is get to writing down a very very comprehensive history. Right from childhood - any funny diseasaes, rashes, aches, swellings etc. Any family history of any of these types of things and the obvious arthritic type illnesses etc. Even down to constant headaches etc.

Write as much as you can. Send it to him via email before you go (see I have you there already! :)).

YOur FS. MY love anyone who is affected so deeply by a second opinion scares the crappola out of me. We all need to be open and accountable. None of us have all the answers - that includes doctors. He may be nice - but you have to feel heard. You have to feel as though he/she is open to suggestion. Your careprovider no matteer how many important sounding degrees he/she has is employed by you. You interview them - you need to know that you are heard, cared for and that your questions are answered and researched. Yes there are many a fine doctor who won't like it - I scratched them off my list. I kept doing that until I found someone who listened with her heart and her head. She didn't poo poo anything. She listened. I now have my Imogen after saying goodbye 6 times. (I purchased 4 papers written by Dr S prior and wanted a doctor who would adopt his protocol).

Sending you all my love and support. :hug: