Advice or regrets for newbies
, Apr 14 2005 05:03 AM
82 replies to this topic
Posted 14 April 2005 - 05:03 AM
We've had quite a few posts asking for general pointers or advice, so I though it might be useful to have a thread of general advice and rules of thumb that you've found helpful at any point, so that others going through the same thing can read, and maybe find some things that can help them.
Please contribute anything you've learned, realised, regretted, hated, changed - anything at all that someone else might find useful in any aspect of infertility, no matter whether you're just starting to see a specialist, or have been around the block more than once. Who knows what might be a lightning bolt for someone else.
OK, what I've learned:
- You'll never regret moving fast - sure, you might feel a neurotic fool who's jumping the gun, but if it shortens your wait for a baby by a month...
- Test everything BEFORE you begin treatment.
From don't let them put you on clomid if they don't know your tubes are clear to don't let them do IVF until you've had a hysteroscopy. It's a waste of time, and energy, and drugs, and it's emotionally draining to be treated when it's not going to work for you.
- research research research ask ask ask.
YOU are your own best advocate, you're the one who doesn't have to look at your chart to know your diagnosis. You're the one who knows you sometimes ovulate on day 8. Take charge of it! Pin your doctor down and make them explain everything three times if necessary, but know what's going on!
- get a second opinion.
I can't even begin to recount the number of people I've seen waste years of their lives because something was missed or misdiagnosed. No one is omnipotent, everyone makes mistakes, and doctors are people too.
- think before you share
Think carefully before telling someone all about your struggle. We had a thread a while ago discussing this, and everyone who replied regretted telling someone in their life. Ypu can always tell them later, but you can't take it back, and assvice HURTS.
- Plan ahead
Don't pin all your hopes on this month (whether it's unassisted, clomid, IUI, IVF, PGD or donor). Plan for next cycle, get things organised for the next step. It saves time (otherwise you're always waiting until after your period to think about this stuff, and then you ovulate and who knows what might happen this month...)and it saves your emotions, because you always have a plan - you're never left high and dry with a BFN and no hope. Appointments can always be cancelled.
Please anyone, any advice you have to offer anyone else - contribute!
Edited to remove sig
Edited by Expat, 21 March 2007 - 09:19 AM.
Posted 14 April 2005 - 06:35 AM
Expat I can only echo your sentiments........the other things I learned was not to put my life on hold.
"Should we plan that holiday for next year?....What if we're pregnant by then?"
"Should I apply for that job?....what if I'm pg by then"
"Should we get a puppy now OR wait till we have a bub?"
DO YOU GET THE PICTURE?????
After a while DH & I decided that we could no longer keep putting our lives on hold. Lucky we didn't, cos our "puppy" is now nearly 3 years old!!!
Good luck to all
Posted 14 April 2005 - 09:25 AM
That's a great list expat. I can only think of a few things because you basically covered everything.
* Find out what measurements & numbers your doctor will be looking for in regards to uterine lining, follicle size etc before going to the ultrasound so you know what all the numbers mean.
* write everything down
* If you get emotional after a BFN write down your list of concerns and questions and give them to the doctor to answer one by one, that way you haven't forgotten anything and aren't a blubbering mess when trying to talk.They are there for you. You have employed them to help you get pregnant.If they haven't answered your concerns don't walk out the door until you are satisfied.
* Research, Research, Research. It is YOUR body.
* Exercise and keep your body active.
* If you want to cry, cry. If you don't feel like answering the phone don't. This is a very stressful time and nobody really understands how you are feeling.
* Be kind to your DH's & DP's they are grieving too.
Posted 14 April 2005 - 12:44 PM
What a great list - particularly agree with not putting your life on hold with the expectation you'll have a baby within a specified period of time.
Another that is worth thinking about is involving your DH or DP as much as possible, don't make decisions for them thinking you're helping.
For instance I thought it would be easier to arrange for my mum to pick me up after a lap coming up this Monday as DH has started a new job, but the result was it made him feel excluded, so he's coming now.
Offer to let them do your injections, keep track of what tests or appointments you have coming up or plan healthy meals to help keep you well. My DH said he feels less like a sperm donor and more a participant doing some of these things.
TTC 5+ years
Starting IVF soon!
Waiting to hear the pitter, patter...
Posted 14 April 2005 - 02:12 PM
I agree with everything that's been said here. I want to stress that if you are not one of the lucky ones and your journey takes a bit longer you will find each disappointment easier if you haven't shared your AC efforts with everyone. Choose who you tell and ask them to keep it to themselves. You don't have to lie - by all means say you're trying if you want but don't give them dates or details. You can tell everyone later when you have the baby in your arms. We are all consumed by the need to get pregnant but we have to force ourselves back into the world on occassion and its easier if that world is separate from the AC world. Anyway that's how I feel about it.
* If you are having a transfer always ring in the morning of the transfer to check that your embryos have survived, just in case. They will call you in the morning if they haven't but you don't want to risk missing that call.
* If you think there is something wrong don't get put off by a "thats just normal for you". I had midcycle spotting for 2 years and told 3 doctors who thought nothing of it. I also have had difficulty detecting ovulation by kits (OPK) so they give me blood tests. I have since told a chinese herbalist and a naturopath and they say it isn't normal. A lot of AC seems to be trial and error and guess work.
Posted 14 April 2005 - 02:34 PM
Accept that you will need to give a treatment several goes to do it justice. I know someone who was so upset after her first attempt that she gave up IVF altogether.
I definitely agree with the plan ahead advice. My doctor is very hard to see so it's best to book a new appt before the cycle actually is over. Having a plan B can help you cope with a BFN better.
Also ask your doctor what the long term plan is. How long will you be doing this protocol for and then what options do you have after that?
Marriage wise accept that DH/partner is likely to cope with disappointment and stress in a different way to you. In return ask him to accept that you will cope differently too. Men find it hard when women become emotional, tearful and very down however it is a very appropriate expression of our feelings. If he doesn't believe you then get him to call the counsellor at your clinic and she'll put him straight!
Posted 14 April 2005 - 02:46 PM
One thing I would advise is that when you decide to go down the Assisted Conception path to do it wholeheartedly. I had trouble accepting this was the only way I would have a baby and did a couple of months on Clomid, then did the rounds of osteopath, accupuncture, chinese herbalist, naturapth - you name it, I tried, it. Then back to Clomid again and the same routine all over. Once I exhausted these avenues and commited to AC and put my trust in "modern science" things went much more smoothly.
Also, find something, anything to help you keep your sanity. For me it was exercise.
Posted 14 April 2005 - 04:44 PM
great thread expat. i fully agree with what's been poted
-I certainly regret not having full diagnostic testing early on.
- I wouldn't go to a doc that is also an obstetrician if you can help it as the waiting room sometimes kills me (all those pg women and you sitting there with your used needle container etc!)I've even gone into the room and the last person's scan is still on the screen and you can see the little bubba and then of course it switches to me and all there is is emptiness
- I know it's hard but try not to think you are pg the minute your transfer is done and start dreaming of names....the climb back is just too hard when it's a bfn
- Definitely find some time for affection, conversations and intimacy with your Dh that doesn't involve AC.
All the very best everyone and I hope all our BFPs are just around the corner.
Monitoring,Lap,Endometrial Biopsy and D&C April 05
1 x blastocyst in the fridge
Posted 14 April 2005 - 07:08 PM
Speaking from the donor gamate path.
*be prepared it takes twice as long for clinic to
organise themselves when it comes to donor stuff
*if you live in a city with 2 IVF clinics that have donor
waiting lists.......see both clinics and go on both
*Not all donor cycles work......with egg donation the
results are only slightly (less than an extra 10%
might even be less than 5%) higher than non egg
In general develop coping techiques appropriate
for you. Something with achievable goals outside
of IVF are great!
This girl is doing
IVF with ED
x 3 pervious ED's
5 neg transfers
(using 8 embies...some 1
some 2 embie transfers)
Starting soon with PROVEN
known ED and her family
Posted 14 April 2005 - 09:06 PM
* Plan ahead and always have Plan B ready to go if Plan A has not worked. I found i fell apart if i didn't know in my mind what my next step was.
* Never be afraid or feel you are being disloyal to your Dr if you get a 2nd opinion or change Dr's. I 'sacked' 3 Dr's before i found the right one for me. I felt the others were not listening to me and treated me as a number.
* Research and ask. I used to ring the embrologists with my questions to do with PGD and stuff.
* Don't be afraid to request what you want. If you are paying for it why can't you have it. My last cycle i researched that in the States Assisted Hatching is routinely done for women over 38. I had to fight the clinic for it. In the end i won and got it - and guess what that embie stuck.
* If you do tell others about your cycle tell little white lies about dates. ie. I would tell my mum or even post here i was finding out my beta results on Friday when i knew it was say Wednesday. I just felt an enormous pressure to provide results, this way i had a day or 2 to grieve if it was BFN and then post/tell.
* Mostly you can't know what suits you best till you have done a few cycles (which hopefully you don't need to do). I knew after a couple of cycles my embies were better in than out the sooner the better. By that i knew after creating 50+ embies mine never make it to blastocysts so last cycle i was adament they freeze them day 3 and 4. In the past they had tried to grow my non PGD embies to day 6 and they never lasted. Just cause they say oh blastocysts work best - this ain't for every single person. Wish i had of known this cycle 1 and 2, 3,4, + 5 so i had some frosties. Cycle 6 i insisted they freeze earlier, at least i got one.
* You have to learn about your own body and cycles, nurses have made mistakes they are only human. Letting you stim too long or short, wanting you to do this when you know that suits you......you have to talk up, its your cycle, your money and your body.
* Get free counselling thru the clinic if you can and support like thru here or meeting up with other women going thru IVF. It's a lifesaver knowing there are others out there in the same boat and being able to talk to someone else who understands. You don't need to do this alone!
* If you are older (like i was/am) don't fluff. Don't do IUI after IUI or wait a long time, its true our eggs are ageing, we have to push forward and keep our eye on the goal.
* Keep a diary. I started one about 4yrs ago and pasted photos of all the embryos transferred (this may not be for everyone), wrote down how i felt emotionally and physically (good to look back on for pregnancy symptoms), wrote things like follicle sizes, E2 numbers.....it just made it interesting to compare cycles and i could pretty accurately guess the number of eggs i would get. It is also very emotional to read back on and something i will give to my children one day so they understand our journey and how wanted they were.
I'm sure i could bore you with more, but they are mine. I believe if i hadn't of tried the points above i could still be trying.
This message was edited by JB on Friday, 15 April 2005 @ 10:50 AM
Posted 15 April 2005 - 01:59 AM
Brilliant advice!! Every single post has me nodding and agreeing.
Keep them coming!!
Edited by Expat, 21 March 2007 - 09:21 AM.
Posted 15 April 2005 - 02:16 AM
Agree with everything that's been posted so far also!
Especially agree with a few points though...
Don't feel you need to explain to everyone you know what you're going through - and don't tell everyone unless you are prepared to have endless questions about each cycle - it's really hard when people are asking you after a cycle if it worked and you have to answer over and over again that it didn't! Equally as difficult when you have a successful cycle, and wnat to keep it quiet until 12 weeks, but everyone knows you've done a cycle so you either have to fess up - or lie!
This may be something you already think about, but be prepared for the financial costs - know exactly how much each different procedure will cost, and research how much of that you will get back from Medicare/private health funds. We had an extra bill after our last cycle because they did ICSI and hadn't discussed this with us.
Take time for yourself - to be pampered!
Hope that helps....
This message was edited by AndiS on Friday, 15 April 2005 @ 2:16 AM
Posted 15 April 2005 - 06:50 AM
**Edited by Roz**
Edited by StillRoz, 29 May 2008 - 09:19 AM.
Posted 15 April 2005 - 08:58 AM
* While this board is great for support and exchange of info, don't come on here and ask questions like "I think I'm supposed to do XYZ with my meds today but the clinic didn't write it down and I forgot and it's Saturday what do you think?". You are paying a LOT of money for this and you should have an after hours number for your clinic - USE IT! If your clinic is not contactable after hours and on weekends, find another clinic!
* Find out what to expect from your particular clinic - eg advice above to call before going in for a transfer doesn't apply to our clinic as they don't disturb the embryos/blasts from day 3 until very shortly before transfer on day 5, and by that time DH and I will be on our way in.
* Just because many IVFers have hysteroscopy/lap before starting, take your Dr's advice as to what YOU as a couple need. We have severe MF and the only investigations our doctor wanted on me was some blood tests and a day 8 transvaginal ultrasound.
* Don't wait a day longer than you need before starting treatment, especially if you are in your mid 30s or older. Think very carefully about doing something like spending a year with a fertility naturopath because if it doesn't work that is an extra year you could have been doing IVF.
Posted 15 April 2005 - 11:13 AM
1. One great piece of advice I was given here was to make dr. appointments in advance ie. when organising t/f dates I would make a dr. appointment for u/s if BFP and if BFN I didn't have to wait long to discuss it with my dr. and make plans for the next attempt. This really helped me to feel I had some control esp. as it can take so long to get in to see drs.
2. When nurses ring with b/t results - always ask for the exact numbers and question anything you don't understand - I was given HCG numbers from a few days earlier (which were good at the time) when I m/c. If I hadn't queried the results I would have thought everything was Ok when it wasn't.
3. Take care of yourself and be selfish - do things for you without having to explain to everyone. Our pain, stress, grief is invisible to most -there are no obvious physical signs of any illness IYKWIM. There will be times when you need "timeout" so don't feel guilty about it.
4. I wasn't prepared for how unstable my emotions would be. The drugs and stress play havoc with hormones which made/make me an emotional timebomb at times. It can be very hard on DH.
5. Do what feels right for you.
Posted 15 April 2005 - 02:42 PM
Also you might find that you have to hassle both the
nurses and doc's to communicate effectively with
one another and with you.
Posted 15 April 2005 - 10:48 PM
I just wanted to say THANKS to everyone for all the advice!! I'm on my first ICSI cycle and this advice is very timely for me. I find it particularly interesting when people post completely opposite advice, as (strangely) it's reassuring to know that everyone has different ideas of what is right for them.
As a result of the advice posted here, I picked up the phone today and made an appt with my doc to discuss next steps after this cycle. Of course I'd love to cancel that appointment, but it has given me a sense of peace knowing I am prepared to move ahead if I get a BFN this cycle.
We might even go ahead and get that puppy we've been wanting!!
Keep the great advice coming
Me(34) DH(37) DSS(3)
TTC#1 since June 04
ICSI#1 - 2 embryos on board, BT 21/4
Posted 16 April 2005 - 05:50 AM
Great advice about booking an appt with your Dr B4 the end of the cycle to discuss the results of it.... but a word of caution.
I did this last cycle - only to find out that medicare would not rebate it because you are supposed to wait 30 days between cycles. I had to get my Dr. to write a letter to Medicare explaining that the appt was unrelated to the previous cycle before I could get a rebate on it.
I've also found it necessary to fight for my rights with respect to health fund rebates. One of my pharmacy items (pessaries) was rejected last cycle after being paid on a previous cycle. I had to justify the expense to the fund (and caused them to do an internal review) - but in the end - I got it paid.
This message was edited by diva on Saturday, 16 April 2005 @ 6:01 AM
Posted 19 April 2005 - 10:06 AM
**Edited by Roz**
Edited by StillRoz, 29 May 2008 - 09:32 AM.
Posted 19 April 2005 - 10:53 AM
Completely agree with what Roz said. I normally ask for a copy of all my records about once a year but it may help to ask for copies as you do the tests so that you stay on the ball. I found out lots of stuff I hadn't been told from reading them.
Also when we decided to change clinics recently my previous clinic did not send the new clinic the records even though I'd given them 3 weeks notice. I took along my copy of records to my first appt with the new doctor as I was half expecting the old clinic wouldn't do the job on time and I was right.
Posted 19 April 2005 - 01:12 PM
My advice is more mundane! Make sure you have a couple of shirts with three-quarter sleeves. They are easy to pull up for blood tests and cover the tell-tale marks.
I found this type of shirt the most comfortable, easy to deal with in the morning BT rush and stopped a lot of questions about becoming a junkie!
Also, take your medication with you where ever you go - pop it in a little cooler bag and leave it in the car if that's convenient, or under your desk. I got stuck on a train between stations, about two-hours from home the day I was due to trigger.
Fortunately the CityRail staff were more than helpful and the train actually got waved through a signal failure on emergency priority so I could get to the next station and get on another train. My husband drove down to meet me half way and I ended up mixing and injecting in the car in a park - not quite the relaxing environment I had in mind!
Posted 19 April 2005 - 03:02 PM
Do be aware of how sometimes the assvice, as stupid as it may sound at the time, can creep into your head and alter your thinking. I found myself going through so many rounds of IUI's and clomid etc, and it took me over a year to finally figure out I was putting off IVF, not because I was scared of the procedure, but because in the back of my mind I was scared of feeling like an idiot for going through with it only to find it would of happenned *had I relaxed*. That insecurity pushed me back alot of times, and now looking back, I don't care if it could of happenned that way. It simply wasn't worth the extra pain and waiting I put myself through. *
Find yourself an excellent doctor. Different approaches and people work for different people - if you are with a doctor you dont feel comfortable around, or you feel nervous or afraid to ask questions, hunt around for another, ask people who have been through it what their doctors were like, and find the approach that works for you. I found going through treatment with a Dr I admired respected and trusted made the whole thing 100X easier. They are out there!*
Do take advantage of the free counselling the clinics offer, and don't be afraid to blurt something out thats on your mind even if it doesn't seem related to AC, as often outside pressures just make AC itself harder, and the counsellors are there to help you deal with that too. I scoffed at the idea of counselling intially, but after a couple of visits, found the counsellors to be lifesavers. DH went along as well, and we talked about all sorts of things that didn't seem related at the time, but after we had talked them through and had the space and time to say what we needed to say, it was amazing how much it lightened the AC load. *
Lastly I definitely second the cry if you need to cry thing. Let yourself have a crappy day every now and then, and spend some time on you. It took me ages to do this also, but when I finally did just let myself take the phone off the hook, forget dinner, forget the outside world, I'm in a foul mood and scr*w you all, I'm in my crappy day and thats that, it was a relief. Sounds horrible, but always felt so much better after. Anyone who expects you to be smiles and roses and strong and unaffected - is an idiot.
Posted 21 April 2005 - 04:46 PM
Thank you all for such great advice! I'm only a newbie myself (1 ICSI cycle), but have a couple of little suggestions:
Get your DH involved with your treatment as much as possible, because they can feel very excluded. You could designate him "Master Injector" and let him do all your jabs (even if you'd rather do it yourself), let him 'control' your medication supply, get him to write down the dates and times of everything on your cycle schedule, try to have him come to every appointment.... any way you can to keep him involved and feeling important.
Constipation! I did not realise how badly some of the medications (mainly Crinone/Progesterone in the last part of the cycle) would gum up my digestion. Make sure you eat loads of high fibre foods, like pears/prunes, bran and wholegrains etc and have plenty of fluids. I had terrible cramps that I since found out were largely due to constipation.
Posted 24 April 2005 - 05:50 PM
Also don't get fooled into thinking you have great
appointments......the first one is always 2x as long
as normal because you a new patient.
If you have lots of questions book a double
Posted 26 April 2005 - 10:50 AM
If you are trying to keep it a secret from your work colleagues
then it's helpful to have a history of migraines. Nobody
questions you when you have a day off for a migraine and
you can be perfectly well the day after.
You may also be able to use one letter of "ongoing specialist
treatment" to cover all your sick days and appointments. In
the public service this can be kept on your employment file
and you can seal the letter so only the govt medical officer
can read it. From then on you just refer to the letter.
If you are scared of the injections then pinch your skin really
tight before you inject and it will hurt more than the injection (I
learned this from someone here at EB!).
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