venting.. first cycle and need hugs already!

hey guys

I just wanted to have a vent - I'm on my first cycle (opu next week they guess) and I'm having a bit of a depressing time - I hear everyone say how lovely the nurses are but for some reason they haven't been lovely to me at all! i am starting to wonder if it's just me bringing out the worst in people or what...

Main problem is I am a total zombie ever since i started the meds. People tell me to go home from work, I nearly failed my exams, and no one thought to mention brainlessness as a side effect or I would never have done this over the exam period! I am not trying to blame anyone but I wish I had known, it is so extreme i dont know what day it is half the time!

I mentioned it to a nurse she's like you're probly just anxious... I only found out on google some people get this fog thing. I havent had time to be anxious about the ivf with my exams and my husband is seriously ill, and I'm under so much pressure but I'm 34 so can't really wait around for some kind of 'good' time (is that what they think I shouldn't do it till I can prioritise it and have enough money not to work?) That's not an option cos my husband is chronically ill and always will be, in extreme pain.

I do admit to being hormonal and crying a lot which I know is normal but I so didn't expect the zombie thing. Twice I have forgetten to phone for my test results in the one hour I am allowed to ring, and I think this is why they have been treating me badly - the nurse just rang me now and gave me a big lecture on 'taking responsibility for it' - except other times I call (I have to struggle to get a break from work anyway) and they do not answer the phone at all for an hour, don't phone back from voicemails, or I go in in person and they ignore you for an hour and a half and you hear the phone ringing and they're like don't bohter answering that hun and keep gossiping to each other and ignoring us in the waiting room! They didnt give us the info booklet cos they ran out and when I said I didnt have it she acted like i was lying and had lost it...

Some other nurses were nice it's not all of them at least. When I said i am just so tired and my brain doesn't work, she said well everyone experiences that and they dont forget to call and I dont know how to tell her how extreme it is - i keep being told to come home from work (havent told work ppl) - I was trying to copy a date of birth from a bit of paper and i literally couldn't do it, some one came into the room for ten minutes and I had no idea they had been in, people are looking at me like I'm losing it and telling me I am not functioning. Surely this isn't normal or someone would have told me to expect the side effect of NO BRAIN? I told them before we started I had exams but not during the opu they were like that's fine... Too late now :(

I feel so devalued and not like a person. like an animal or something. I seriously never have trouble getting on with anyone and I know medical people are under heaps of pressure, but I can't make sense of it. I also wonder if it's to do with my religion since we asked for a few eggs only to be fertilised cos we want them all to have a chance and the specialist was really against it and tried to force me to do it his way... It was so awful he was like do you want a baby or not you are going to die childless otherwise so you need to fertilise 20 eggs and you don't have a choice its we who make the choices . When we hadn't even decided to go ahead with ivf at that point and i was trying to say i needed to talk to my husband about it (he was too ill to be there :( _. So I guess all that's on my file and maybe people think i dont deserve to come if I don't do it their way or think I am acting spoiled like I dont appreciate their service? How can I make them change their view of me? I dreading going into the clinic now because of this which only makes everything harder... Makes me feel like they think i am not fit to be a mother if iam not uber together!

I know the not having kids thing is much worse and all this is just a temporary problem I guess. But I won't take it lightly next time if I can't take the time off work!! And definitely not exams!!!

Anyway just hoping someone here could understand and send me a hug or tell me any helpful advice?

Thanks guys,,, you're all so braver than me.

Sara

:hug:
The first time I did this it was so hard. I understand your problem with the hour calling window. Unless it's the weekend I'm working and a couple of times I've been a bit late in calling. The nurses have never given me a hard time about it though! You shouldn't be made to feel that you don't deserve treatment.

It sounds like the medication is really not agreeing with you. Feeling depressed and foggy isn't unheard of - you should have an information sheet with your meds that lists common side effects - I'm pretty sure these are included. You could speak to a pharmacist if you're having a hard time with the clinic, although the clinic staff should be aware of these things.

Have you got someone who could communicate with them on your behalf?

I'm sorry that you're having such a hard time :comfort:

Couldn't read and not post - I haven't been through the IVF process but wanted to send cyber hugs your way :hug:

Hope your exams go well too!

:hug: It's a very difficult and overwhelming process. I hope things improve from here for you.

sounds like the meds are really knocking you around, poor thing. Perhaps talk to your doctor about other optoins. you may not be able to chagne for this cycle, but if you have to do another (though hopefully not, obviously) then it might be worth changing things a bit. That said, the staff don't sound super friendly! It's hard enough doing this without supportive people helping you through. A clinc change could be a good idea - do you know anybody who's used a fertility clinic where you are that you could ask for advice?

On the religious thing, I guess, from a medical perspective, they want to give you the best possible chance at success. The more eggs they fertilise, the more embryos you'll end up with and so the more chances you'll have. That's not to say they should not respect your wishes - they're your eggs afer all.

You might like to join in the chat in our LT TTC & Assisted Conception thread - there are lots of other ladies there currently cycling.

All the best to you and your husband ~~

This is my first time doing IVF. I have just started sniffing Synarel and have just done my first injection of Gonal F. I am doing a short cycle and are very anxious. My DH and I have been TTC for nearly 4 years until we got tested and now we are doing IVF & ICSI for our first go. I really want this to work how ever I am realistic and know that it could take a while. Has anyone had any success first time? None of my friends have had to go through this and when you are waiting at the clinic to do all the tests etc no one really wants to talk. I wonder if there is anyone who can share their experiences and offer some advice on what to expect other than the nurses who seem to say things very verbatim.

Hi saraz, geez your clinic dosnt sound very good at all, they sound horrible! u poor thing. as for your foogyness i agree with kass maybe your body isnt respondning very well to it, after egg collection and on the 2ww i was very emotional and depressed but that was the only symptom i had. Dont let them feel you dont deserve to be a mother because if you didnt you wouldnt be there, your paying them thousands of dollars so you are intitled to have your say. Maybe you colud change clinics? I wish you goodluck with your exams and your IVF journey xxx

Hi new too IVF, welcome to the IVF journey. unlike you i had very high expectations, im 23 and DH is 25 i thought we would fall first or 2nd go but we didnt, im on our 3rd FET cycle and i got a BFP but im pretty sure iv lost it :( this is the hardest time, i feel like we have already gone through so much and now i have the stress of have we lost it. The only side affect to the medication from the STIM cycle was during our 2ww, i was very emotional and depressed and it lasted for about a week. This is a great site for advice and experience there are lots of wonderful woman going through the same thing. good luck xxx

Hi Sara - it sounds like you and hubby have had an awful time so far! I didn't have work or exams to deal with on our icsi/ivf cycle but I did have a lot of fogginess, I couldn't even form proper sentences half the time and I found it very unsettling not feeling like my brain was functioning properly! It cleared up really quickly though after opu so hopefully yours will too.

My hubby and I had lots of issues too with the number of eggs we fertilised, I spoke to our FS about them and he totally understood and was very accommodating, and was happy for us to decide how many. Our first two goes we didn't have to make many decisions as we only ended up with a few eggs (2 - none made it, then 3 none fertilised). I'm so sorry your clinic has not been more understanding, you have some big decisions to make and ultimately it is your decision. If it helps we had 16 follicles, 13 eggs, 7 fertilised, and only 2 grew to be 5 day old blasts (we had both transferred, bfp, but ectopic). I grilled the nurses and scientists for ages to find out how often peoples initial egg counts related to how many embryos they had left. I guess its also different depending on what day they want you to transfer. We didn't decide how many eggs to fertilise until after we were back in the clinic and saw how many eggs we actually had.

Oneday, I'm so sorry to hear you're not sure what's happening at the moment, sending hugs.

Nikki, wishing you all the best for your cycle.

Hi Saraz - just to follow on from what Milly's Mummy was saying about fertilisation, I had 9 on my first collection, 5 fertilised, 1 transferred fresh, two made it to freezing and only one thawed. So all up I got two out of nine, and neither one took. My second time I only got 5 eggs, 4 were fertilised, but neither of the first two took so I'm down to two.

I've been told to expect about two thirds to fertilise and then two thirds of those to make it through to freezing stage, and then that a couple may not survive the thaw. After that your chances of a successful transfer depend on your age and the quality of your embryos. According to my fs my chances are about 45% with my age and quality, however I'm up to transfer 5! I guess you have to make the decision that sits best with you, and some people are certainly luckier than me, but I certainly don't want to go through the collection process any more than I have to! Has your fs given you an indication of how many eggs they're expecting from you? I understand that fertilising 20 is too much when you want to be able to give them all a chance, but I don't know how many people actually do get those numbers. Might be worth bringing it up again.

Nikki - welcome. I'm happy to talk if you have any q's and like oneday said, there are lots of other helpful and understanding women here!

Oneday - I'm sorry to hear things aren't going well :hug: I really hope you haven't lost it.

Hi Saraz, sorry to hear that you are having troubles with your clinic. And also sorry to hear that the meds aren't treating you too well. I was lucky that I didn't have any side effects from the meds, except a little nausea on the progesterone gel. Hopefully this cycle goes well for you and you don't have to go through multiple cycles with these sort of symptoms.

With regards to how many eggs get fertilised, I'm sure I filled out a form where you could choose how many to fertilise. They are your eggs and your partner's sperm, so it's really your choice. Having said that, I'll let you know what our experience was. It took us two cycles to fall pregnant with our little one. First cycle I had 10 eggs, 7 fertilised and all were big enough for biopsy on day 3 (we had PGD done). Of the 7, one had a fragmented nucleus, one they couldn't get pgd results for, and all of the remaining 5 had chromosome abnormalities that were "incompatible with life". I was shattered and shocked at the news. I had no idea that we would have such a high number of embies with chromosome problems considering I'm only 30 and healthy. Second cycle my meds were increased slightly and they managed to get 21 eggs. 20 were suitable for fertilisation, but only 11 fertilised, and 10 of those made it to biopsy. Of the 10, two had no nuclei (therefore no chromosomes), 7 had chromosome abnormalities, and we had one very precious little healthy girl embryo. She's a strong little one and we are now almost 10 weeks pregnant with our little Apple Blossom.

I was amazed how common chromosome problems are. The scientist in the PGD lab told me that on average they probably find at least 50% of embryo's at day 3 have chromosome abnormalities. I worried that the IVF process maybe creates more problems, but she assured me that that was not the case. She said that the rate is the same if you are conceiving naturally, and that these embryo's usually either do not create a pregnancy or miscarry very early.

I guess what I'm trying to say that it is going to be a hard decision for you to decide how many eggs to fertilise because it's very hard to know how many healthy embryo's you might get from any number of eggs. It took 31 of my eggs to get my one healthy embie. I hope the decision isn't too stressful for you, and I wish you all the best for the rest of your cycle!

Wow thanks everyone for that info! You're all amazing.:clap:

From what you gals say I am amazed at how low the survival rates are - I am guessing we'll have an ultra low rate as our infertility is unexplained by any other factors. We thought we'd consider trying with more eggs in the next cycle if that turns out to be the case. My clinic say they usually get 75% fertilisation rate from fresh eggs. I am only on mild stim and have about 20 follicles so far which they say are looking a very good size. But not getting my hopes up too much as I do realise we are limiting our chances lot only using 4 :( Unfortunately they don't freeze eggs at my clinic, only embryos - so any we don't use will be wasted.

Mylitta - congratulations that's so so wonderful! It must have been really discouraging that first cycle and now look at you! :) Really interesting to hear what the PGD scientist said.

Milly's mummy - You know exactly where I'm coming from, it feels bizarre to be playing probabilities with something like this... it is so confusing - I don't know if we're doing the right thing, I feel like I really needed to ask more questions but couldn't because people weren't v sympathetic. I didn't know you could delay that decision about the number of eggs until the day - we had to sign forms about the number of eggs before starting the cycle. We don't get much choice as we're at a public clinic so the day of transfer is a bit random (only happens 3 days a week). My doc said if you don't have many fertilise it's best to transfer early as they're more likely to survive in the womb than out?

Oneday - sending good thoughts, well done on surviving this crazy fog 3 times. How dumb was I doing this during exams - it only said 'fatigue' not 'stupidity' on the leaflet. I am a bit reassured to hear of at least 1 person having the same problem and especially that it improved after opu! Does this mean we will be prone to some serious 'baby brain' as well do you think?? :o wish I could change clinics but we can't afford to go private at the mo.

NikkiR - I know one person who got a bfp first time after trying for 3 years! she had endo & is now 4 months in and doing great. Amazing hey! They only had 5 eggs but they all fertilised and were really healthy. Good luck, let us know how you go.

Kass, marcellus & baby 09 - thanks so much for the hugs and understanding. Helped me through a totally totally hormonal day! Now i've had a good whinge I am feeling braver and have decided not to care what the nurse says when I call her today - she doesn't know anything about my life so I shouldn't mind what she thinks and if she's that judgmental she's probly not enjoying her job much poor lady! I know they're really shortstaffed so she's probably just t the end of her tether sometimes. It'd just be so nice to meet a friendly face when I am having a bad day!

Marcellus - yes if I do another cycle (which I suppose I will) I think I'll ask about any different meds that might knock me around less. Maybe a FET wouldn't be as bad, guess I don't know till I try.

Also, I just found out that you are supposed to be having lots of protein?? no one told me this? anything else I should be doing other than drinking a lot and not doing vigorous exercise? I want to do everything I can right!

Hugs for you, you asked for some so here they are,, its not easy but rest assured there are plenty of us out here too... chin up girl, we are there for you

Hi Saraz - I don't know anything about protein sorry, but it's good to see you sounding happier! Good luck!!

grrrrrrrr lost my post

Saraz we chatted in my thread.

I feel groggy too, but have found the acupunture works and helps me for a few days at least after it.

Your clinic doesnt sound great, maybe a change in clinic is an option.

I put reminders in my phone, to sniff, jab, ring etc

Okay I thought I was past needing to vent on this and was being all zen about it but - grrr!

I rang the clinic yesterday to get my blood results (day after ET) and no answer, after an hour of trying receptionist said no one was available and a nurse would have to call me back and what was the best number to reach me on. So I left my home number and then waited around all afternoon - cancelled various things in case I missed the call - and no one rang, after lunch today still no call so I rang up and politely said that I had been waiting on a call about my blood results and the nurse was like (very patronisingly)

'No, sara, we don't call you, you need to call US on the day to get your blood results' (like I don't know after a whole cycle of doing this)
and I said 'oh I did call and I was told someone would be calling back as you were busy'
and she was like 'Yeah right you didnt bother to leave a message did you'
'yes actually i did!'
and then she says, 'well there wouldn't be anything to tell you anyway since it's just your progesterone test you just keep doing the same thing anyway' - without even looking up my results~!
And she never ever tells me my levels of anything as though patients are just a nuisance and we are all stupid and flakey.

I have now realised that the person who is rude in the clinic and on the phone are the same person, it's just this ONE nurse who is horrible to me and was horrible to DH once too so it's not just me. She implied DH was lying about not having received paperwork in the mail. :( And someone told us in our initial nurses' interview that there was a staff member who didn't want to be here so that must be her. She carefully never says who it is calling, probably so ppl can't complain but I have got to recognise her voice by now and I KNOW it's always the same person. The other nurses are perfectly nice!

Anyway the main reason I am still bothered is that her bad attitude means I am not actually getting to ask any questions or have any information. Which I might actually need for making decisions about future cycles. And I DONT want this to be the person who tells me i am m/c or pg or whatever - but she is the only one who ever answers the phone!! :sobs:

Sara, do you have a nurse that has been assigned to you? I went through Monash IVF and right from the very beginning I was assigned to one particular nurse who was the person I saw at the start of each cycle (to go through the cycle and med details, and pick up the meds from), and she was the only person I ever spoke to about results or any questions I had. The only time I ever rang through to the main reception was if I didn't have my nurses number on me, or if it was a Saturday when you can only call between 1-2pm. If you have a nurse, I'd just be asking to be put straight through to her and not even speaking to that nasty piece of work on reception.

:hug:
She's clearly in the wrong job. I understand that you don't want to call if that's the type of treatment you receive, but really, part of her job is taking people through a complicated and emotionally draining process and at the very least she could be polite.

One thing you could do is to start documenting conversations you have with her. If she doesn't give her name when she answers the phone you can always ask her for it. If you feel her treatment deserves some feedback to the clinic then you'll have specific details to refer back to. Anyone can have a bad day, but if the attitude is consistent then it's not ok.

If you know her name then requesting to speak to a nurse other than her may help too.