Not sure how to keep going - fifth m/c

[Nicole S]

Oh BG I am so sorry for your loss.
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

[diva det]

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

[Liviam]

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 along with all the other wonderful women supporting you.

[briggsy's girl]

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.

[Michelle71]

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

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

[butterfly_warrior]

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.

BW

[Willow]

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.

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....

[briggsy's girl]

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...

[{sarah}]

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

[briggsy's girl]

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

[butterfly_warrior]

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.



BW

[fionas]

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.

[Willow]

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.

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...

[briggsy's girl]

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...

[MeredithD]

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?

[butterfly_warrior]

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

[briggsy's girl]

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

[Michelle71]

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