advice for an IVF newbie?

I'm really starting to realise just how little I know about this whole process of IVF, and it's a little overwhelming right now!

I've been very confident with my FS, and feel that he will give me the information that I don't yet know that I need - we've left every appointment with our hands full of paperwork and reading material to go over later.

Now that we are mainly dealing with the nurses, I feel that I'm not being given the full story. That I'm being given the rough outline in an attempt to not worry me. Unfortunately I don't know what the questions I need to ask to find out the information that I don't know that I actually need to know yet! If that makes sense at all.

Between my GP and my rheumatologist (long term arthritis condition) I'm used to feeling like I'm having an active role in the treatment process - I'm usually presented with the options, given the advantages and disadvantages of each, but which option is eventually used is my decision in the end. How can I get to this point with IVF? Or is it such a complicated process that I'll never be able to understand it enough? :help:

BW

UNfortunately BW, that seems to happen so often (based on my own experience and what Ive heard in here). The nurses always seem reluctant to give you any information at all - which is really bad. Perhaps some people dont want to know - me, I want to know everything!

Two things to keep in mind - you are the customer, you are paying them so you have the right to ask any questions you want and expect a good and accurate answer.
Second thing is - if you dont feel confident with them, get a second opinion and sooner rather than later. I speak from experience here and wish I had have done so sooner.

But in saying all that - in my first cycle I had no idea what to ask and really was just so hopeful it would all work I was just focusing on that.

Im sure I havent even remotely answered your question BW! Sorry, think Ive been rambling and not making any sense.

I think often enough that even if you do discuss it with your options many of the clinics will do it the way they want anyway. Unless you stand on your chair and scream and cry!

I can't give you any advice BW, but I can tell you that you aren't alone in your feeling. I have chronic migraines and take a very active role in my treatment. I can't say the same for this IVF process though. My feeling is there is often so many 'ifs'. 'If this happens then we'll do this, but if this happens then we'll do something else'!! It’s like one of those Pick-a-Path books, where the journey can go lots of different ways to get to the ending. Maybe that’s why we don’t get told the whole story, because there is such a lot that may or may not happen. And there seems to be differences of opinions between experts too.
Just keep doing what you are already doing - talking to others going though the same/similar journey, and do all the internet research. Then when you do have a question, make sure you are happy with the completeness of the answer. Sometimes I think the nurses have done this so many times that they don’t know how much we already now, or how much information to give us.
Jo

I guess all this is stemming from our little false start last week.

When the clinic rang me with results they just said "your levels are too high and you need to come in for a scan".

As I was at work, in the middle of a crowded staff room, I didn't really want to ask much then and there. However, I'm still left wondering now - level of what? and how high was it? I guess I should have asked that when I got in to the clinic the next morning.

The scan discovered a follicle on one ovary and I was then told "we'll give you an injection to get rid of it". Fortunately, I'd done enough reading to realise that I was being given a trigger shot, and the means of getting rid of that follicle was to make me ovulate.

The next bit realy bugs me... I'm starting to feel like the nurses stand between me and my doctor and in some ways prevent me asking questions that probably only he can answer. The nurse was talking about restarting synarel, or trying lucrin instead. The nurse left to chat to my doctor and then came back with the instruction of twice the original dose of synarel... I really wanted to know the advantages and disadvantages of the synarel/lucrin decision - but all the nurse would tell me was that it was my doctor's decision - with heavy undertones of "this is what he has decided so this is what you shall do, and you will not question it!". The only thing that helped me with the synarel the first time was my weekly acupuncture appointments where she would needle my face to help clear the gunk out of my sinuses... That was when I was having one squirt morning and night and I could alternate nostrils. Now I'll be having two squirts morning and night and I'm left wondering whether the build up of snot that I know I'll get (and can probably count on it being worse this time) will prevent me from absorbing enough of the synarel. I half suspect that this may have been the problem first time round - I'm often quite congested normally just through general hayfever issues.

I think I'm just ranting now. I go back to the clinic on Tuesday morning for another blood test to see if I can start the synarel again. Unfortunately, I'm in at 7am, and my doctor doesn't start until 9:30am, so even if I do want to push the synarel/lucrin thing, I doubt I'll get any answers!

I know my whole issue with the nurses arises from the breakthrough bleed I had while on the pill - they told me not to worry about it, just ignore it and all would be well. My brain was screaming at me "It's been over 100 days since last AF, if my body wants to bleed, I should stop the pill and let it do it properly and then restart". I followed the nurses advice like a good little girl and things just kept getting worse and worse... Eventually I hit the point where I had a complete freak out at a friend who is a gyn reg - who did confirm that I should have stopped taking the pill when it first started, and continuing to take it made things worse. It got to the point where I was waking up in a pool of blood and the blood loss had got so bad I nearly needed to be hospitalised, and it wasn't until I got some advice from my friend that I realised I really needed to yell and scream at the clinic to get someone to take it seriously.

Still ranting...

BW

Hi there BW

I Can totally understand where you are coming from!!!!

And I aslo think they tell you good things to help keep you calm...and I just want to know the truth!

Well after speaking to two nurses and the dr about my spotting which is STILL happening even though Im on Puregon now...They all seem to think its ok and will go away! Well Im going fot my BT tommorow and I know in my heart that its not going to be good...If your spotting the follicles arn't growing right????? Im extremelly worried???? The spotting's not bad and seems to just spot in the evening for about 10 mins and its literally a SPOT...but NOONE can explain why this is happening! I have researched and researched and come up with nothing!!! I now its because of the synarel, but dont know why it hasnt stopped! Im really worried that the FS has led me down the 'don't worry 'path and then hit me with the IVF cancellation tommorow!

BW,

like you, for my first few cycles I felt very much like I was propelled along by my nurses and my Dr, not given any more information than I absolutely needed to get to the next stage. I was told what my levels were but not what they meant, and I felt very out of control, but felt like it was all too much for me to learn and I was best leaving it all to the experts.

It was during the TWW in my second cycle that I found BB, and it was because I was feeling like after my transfer, I was being left to just 'drift' until my BT that I decided that I needed to try to find out as much as I could. I actually joined about 6 different forums that day, some from as far as the US and UK. BB had the smallest IVF community back then of all the forums, but in the long run were the most supportive to me.

As I went along through my cycles, I began to read avidly what everyone else was going through. If someone mentioned something (like PGD) I'd google madly trying to find out what it meant and whether it would possibly be something that could help me. This became more obsessive as I racked up more failed cycles, but even my Dr could see that I was getting more informed. I started suggesting things to him, asking whether we could try this or that. I started taking down everything, all my levels, and what CD I was on etc. Pretty soon, even the nurses knew that I understood what they were telling me and that they couldn't fob off my questions.

So the first bit of advice I have for you if you want to be in more control of your cycles is to ask questions, and make notes on everything. Even at work, I would discreetly say 'And can you please tell me what the levels were?' if it wasn't offered. If I disagreed with something (eg my 7th cycle, my frozen embryos were supposed to be taken to blast after thaw, but didn't seem to be progressing, and I wanted to transfer them early) I didn't even bother talking to the nurses, I called my FSs office and expected him to either talk to me or call me back, and to follow the course of action I wanted to take. Don't be afraid to get them to explain why they're doing anything and why you can't have it a different way. And if the nurses treat you like you don't know what you're doing, don't take it personally, but don't let them bully you into hanging up without your answers either.

If you like BW, feel free to PM me. I do believe in women knowing what treatment they're undergoing, and I hate that so many medicos make us feel like we're too stupid to understand what they're doing. It's your body, and you feel the need to know what's happening with it, it's your right. Don't forget that.

I completely agree !! You really need to read, read, read and if there are books available grab one and read it tonight. At my fertility clinic there is a library you can borrow books. It would take too long to explain every test and every probability and every outcome. It is your body and you need to get to a position where you are telling the doctors what YOU want because you've done your research. There are lots and lots of websites on IUIs and IVF start there. Do you have PCOS ?

H

Maybe it's just a sign of stress - but no matter how much I read, I don't seem to be able to take in any information.

Yes, I do have PCOS, and my husband has poor motility, morphology and a low count, so we are doing ICSI. Which brings to mind another question... my FS said that with my PCOS they would do ICSI anyway as it gives a better result. However I've not been able to find any information to confirm/disprove this statement. I guess it's not too much of an issue as my clinic doesn't charge extra for ICSI.

Any books that people can suggest? I have a couple here, but they are more about dealing with the emotional aspects of infertility and IVF, not so much in helping me to understand the process. And one is very, very American - talks about putting back 3-4 embies each time, when my clinic is adamant that they will only do one.

I think I'm slowly making progress here, though. I've come to the conclusion that I need to start questioning the nurses - asking what hormones the blood test will be checking, and then asking for the actual numbers, etc. Even if it doesn't mean much to me at the time, I'm sure there are people here who can help me figure it out, and I'm sort of hoping that it will get the nurses used to the idea that I like to have lots of information so they may as well tell me anyway.

I guess that this is the same as all things that are big, and difficult to understand - if you look at the whole thing and try to understand it all at once, things get overwhelming. But if you take small bits and work on them, you can eventually start to put the pieces together and form an understanding of what's happening and that after a while I'll start to know what the questions are that I need to ask.

It's amusing in some ways... Everyone here is advising me to educate myself, while on another dedicated IVF forum, I've basically been told to be a good little girl and trust the doctors and nurses and not question because I can't hope to understand it all. I know which one appeals to me more! :rolleyes: But I guess that's what's at the heart of bellybelly - women educating and informing themselves rather than blindly trusting the medical professionals.

BW

Hi there guys!

Im so glad Sushee that you told me this as Im a very direct person, and I say it how I see it! But, when I go to the FS Im not like this at all! I was speaking to DH the other day about this.The last two FS that we had were male and I was the one that did ALL the research, prepared ALL the questions etc etc, but they looked at me like I was a brainless idiot- BUT on the other hand if my DH was to ask the same question, it would be taken as something very intelligent! I have a female FS now so Ill see how this goes...

Sushee Im going to be much more MYSELF from now on...Even a few weeks ago when the nurse upset me I didnt say anything because my DH didnt want us to be seen as the nutjob couple! And he didnt want me to call the nurse a third time because of my spotting because of the same reason...but were paying a lot of money for this and if asking them a damn question is going to cause problems then there in the wrong proffesion!

BW,

the levels won't mean much to you in isolation, but after a few BTs you'll start seeing a pattern. I realised at my third stim cycle how my E2 levels corrolated with how many eggs I was likely to have, just as an example. The notes you make may not make much sense now, but in retrospect they will help you understand how your body responds.

As far as books I recommend, the one that made the most sense out of the medical side of things was a book called 'Getting Pregnant' by Prof Robert Jansen. Melbo read it and raved about it, and I went to buy it. I think it is a by far the best book on AC I've read, and it's Australian!

ETA kim, I posted at the same time as you. Yes, I absolutely agree that you should be more yourself, and if that means more assertive, even more so! I'm not saying reproductive techonology is not complicated, coz it is, but we are not brainless, and we're not stupid, and we LTers especially are very in tune with our bodies and generally know when something's not right. You go get 'em, girl!

Thanks, sushee.

It really means a lot to me that someone with your wealth of experience is so helpful to those of us just starting out. Any tips on how to convince nurses that something really isn't right, and you're not just a fruit loop who freaks out over little things? Sometimes the attitude of the nurses when you just know something isn't right is that you are worrying over nothing... I've really forgotten how to argue with doctors as both my GP and my rheumy (the two medical professionals I've had a lot to do with over the last few years) are always happy to trust me that I know something isn't right, even if their tests say nothing is wrong. I guess I need to train the clinic nurses now, too.

I've googled and had a look at that book - it does look good, and very useful. Unfortunately, I can't get the link to buy it to actually work!

Kim, here's to not letting the specialists and nurses push us around any more!

BW

Bw - i think at some point with IVF we all start to feel like this and im not saying that we should or that itis ok.

I q'd something with one of my nurses a few years ago and she stood strong with how she thought it should be and guess what she was wrong and if she'd even bother to look at my file (she kept telly me she didnt have it infront of her but 'it' was how things were done) I called 5 times in total to confirm! you'd think the bloody women would do the right thing, check and call me back but no and it ended up with us nearly loosing embies she was just luck they went to blasties or i dont know what i would have done.

She is no longer there. im sorry for what you are having to go through at the mo and will be thinking about asking more q myself from now on

HI BW,

On my first IVf I felt exacly lile you....I was wiser by my #2 and I called more shots, I determined that the Pill wasn't for me and that I would react better on a flare cycle. Which I did and was lucky enough to fall pregnant....I unfortunately had a m/c but now I am heading for #3 at a new clinic Westmead in fact, and from begining they let me decide my protocol because I understood from previous what worked....I have same doctor and unlike private can't speak to him as often but ultimately the one thing I realised was that it is finding the right protocol for you that works not talking to a doctor, if you need to see the doc, make an appointment, the nurses can't stop you doing that....and if you have to log a call every day until they understand you will be making a contribution to your protocol and who cares what they think...At the end of the day, when you are holding your child in your arms, all this will be nothing but a fond memory....believe me, I haven't heard bad memories once the deed is done....

Take Care
Tracey xxx

Ok here's a poll : What do you think you would want from the nurses at your IVF clinic ?
What would you expect from your doctor ?
What have they done that you have liked ?
What have you disliked ?

OK I'll start... I'd like my nurse to look understanding and compassionate even if she doesn't. Sympathy Sympathy Sympathy. My ER hurt hurt hurt and all I wanted was Sympathy. The nurses at my clinic were very nice and even on the phone they were very supportive. I wished when I had my 5 IUIs that someone would have called from the office just to see if I was ok. Heck I had my dentist call me after a "cap"......
The doctor - I love the one I have now because he is funny, and he relaxes me. He doesn't get all caught up on all the legistics of it all, he makes IVF feel like a walk in the park. I think doctors could act a little less rushed. I like how my doc gave me his home phone # the day after ER -- nice touch.
I liked how some of the nurses touched my hand when I was having a procedure. When I had my Hsg (hurt hurt hurt) I like how the nurse told me it was going to "hurt" and held my hand and said supportive things.....

Ok that's my list
H

I've really got to admit that I can't fault my doctor - he's never seemed rushed, always given us as much time as we need in each appointment... Even when he's running over an hour late because he's been giving everyone the time they need all day. I've noticed a similar thing with my GP - the ones who are worth seeing are worth the wait, and you do generally have to wait.

Nurses, however... I would be happier if they would tell me what I can expect to have happen. Side effects from medications, etc. I've still never felt rushed by a nurse, and the one I saw last time... I was obviously stressing out over the instructions for how to administer the trigger shot, so we were talking through all the ways we could find a way around it (letter for my GP, come back to the clinic in the afternoon, etc), when she looked at the time and realised my FS should be in the building by now... so she went to hunt him down and check with him on the dosage and did the shot for me before I left. I still would have like to have been told that I may really hurt after the injection, and don't be alarmed if I come up in an enormous red welt... which I still have now, a week later!

Now... thanks to all the wonderful people who have contributed to this thread! I have my next appointment with the nurses tomorrow morning, and assuming I can remember all of this after a 5am start, I shall begin my new approach of asking questions... like what are they testing for with the blood test, and making sure I ask for those levels when they call back, double checking side effects, possible reactions, etc, etc, etc. I think that's the key to understanding it all - asking questions. And even if you don't know which questions to ask yet, start by asking whatever you can think of so that you are more informed of the whole process. Think I'm on the right track?

BW

Hi Ladies

I definately support asking lots of questions... i had a little run in with my FS last week at my day 8 scan.. we disagreed on a few points and i blatently reminded her it was my body and my 1000's of $$$$! I think she may have been having an off day because she also told me i was a bit of a "whinger" i was pretty peeved.. 2 days after having 5 wisdom teeth removed and in the middle of an internal scan i was damn well going to whinge!

Went back to see her this morning and she answered every one of my questions and was really good again.. sometimes i think the enormity of going through IVF can get a little lost when they are dealing with it every day and may occasionally need a reminder!

Good Luck and ask lots of questions!!

S

I did IVF back to back for many years and are suprised at how much information alot of the ladies on here knew about regarding there own cycle. Call me niave but I felt better not knowing the ins and outs of my cycle all my cycles were done thru ultrasound results rather than bloodtests. The information given to me was approx how many folis before PU and how many fert after pick up...I never even knew the grades of the embies they were either good, great or not so great lol . In the 19 cycles I had 12 single transfers and most of them FETs the information given to me was the endo thickness and whether to leave it a few days or we were right for transfer.
I liked it this way...I stress too much about little things that usually I couldnt control nor why would a FS change things in my cycle because I thought differently.
I supose it is different when you have a great relationship with your specialist thou
Bec

Does anyone know if there is a universal grading system in Australia. I found out I had 6 embies for the freezer all grade 2 with one grade 3. I spoke with the secretary who said the "grade 3 " was higher. I tried to look online everywhere but couldn't find anything....

Heather

Oh another idea. Make sure you write down the questions you want to ask days before your appt. when you get there, write down the answers as the doctor/nurse says them t and not try to keep them in your head. It is such an emotional time your mind is going a mile a minute. If your dh can write down the answers all the better.

Heather

how did you go BW ?

Not good, Trish.

The nurse I saw that morning was ok, answered my questions, but was a bit surprised about me still having a mark from the trigger shot - "I've never seen a reaction like that before!" oh, great...

The nurse I spoke to in the afternoon was just brilliant...

My progesterone level was too low, so I'm to be started on primolut today and then lucrin next week. However, I started spotting last night, can expect AF to get going today... only a week after the trigger shot! I don't know if it changes things... I'm just so over feeling like a freak who can't respond to any drug properly! :cry:

BW