What I Wished Someone Had Told Me About Ttc

[Choice4]

Hi all
I have discovered a few things I wish someone had told me before trying to conceive.

1. Find a good fertility Dr , especially one who would also do immune tests, embryo quality test and good protocol if needed
2. Factors that may affect outcome of treatment
a. Problems with Egg/embryo quality e.g age, ovarian reserve, embryo quality
b.Problems within uterus eg anatomical, hormonal, immunological
c. Problems with sperm, eg low sperm count, morphology etc
3.Additional Tests you may need
a, immune test e.g nk cell, DQ, HLA, TSH, ANA, APA , MTHFR etc
If test appear abnormal may need any of these ,steriods,Ivig,humaria,LIT heparin, lovenox asprin,thyoxine, metformin etc
b. Sperm DNA assay, and other tests may need ICSI
c. For Competent/normal Embryo CGH test (43chromosome.) and PGD (12 chromosome.)
4. Search internet for lots of information in addition to that from your RE
Some good sites are :yahoo immunology group, fertility friends, ivf connections etc
copy and save any important article for reference check.
5. Get Alan Beer's book "Is your body baby friendly" if you want to know more about immune issues.
There may be other good books out there.
6.Acupuncture some people this may help.

Please note this is not an exhausted list, and you don't need to follow any recommedations here.These are just my observations so far and there may be other things to add.

Fell free to add what you think someone should have told you!!

[boston_couple]

Great start. Mine are maybe less "scientific" but here are some I have learned that I wish I had known.

7. Although it's VERY hard not to, consider keeping your communication and news about TTC cycles and issues as close to you and your partner as possible. The more people you tell about your therapy, cycles, IUI/IVF, etc. the worse it is if you get a BFN and then you have to "tell" people.

8. Get VERY educated on HPTs if you plan to do them. Better to avoid if possible! But for those who can't, know that the results are often unreliable. Tons and tons of info on this site and others.

9. For many people, this is not a "I'll do IUI, etc. once and God will make it happen" kind of thing. This is a 1-many year journey full of twists, turns and yet some hope that each cycle will work. But like a lottery ticket with good odds, you cannot really predict the outcome. You may "feel" that a given cycle or treatment will work, but realize that it is an over-time, odds game. It may take many times to succeed. Infertility is still VERY poorly understood as compared with much of the rest of medical science.

10. If you are not getting what you need from your RE after you've given it a fair shake, switch! There are different approaches, etc.

11. Don't blame yourself! Don't blame your body. How is this your "fault?" Really think about this. You may feel you're letting yourself down. "Why can't I do the ONE THING all women were meant to do?" etc. The reality is you didn't cause whatever is making it hard for you! We all have our lot in life, and it sucks when things don't go your way. But it isn't your fault.

12. If at all possible, you and your partner should BOTH go to all the appointments, etc. If the woman has to go on her own all the time, it can create a rift and make the women feel "responsible."

[Choice4]

Boston
thanks for posting that, they are all very true

[tdg119]

Here's my 2¢...

1) Infertility happens in your 20s too
2) Find a good RE ASAP
3) Build or find a support network
4) Educate and prepare yourself (I read the "Infertility Survival Handbook")
5) Speak up about what YOU want; a good RE will listen and work with you

[Erin83]

All of them are very true!!!! I don't have anything to add at the moment as I think you all pretty much covered them!!! I'll think about it though!!






Erin

[Choice4]

Hi
I saw this from another site!!!!!


IVFConnections.com Boards > IVF > All I Really Need to Know I Learned After Way Too Many IVFs


Posted by: dreaming
02-07-2004 08:42 PM Last edited by dreaming on 02-07-2004 at 11:51 PM
(Edit Message) All I Really Need to Know I Learned After Way Too Many IVFs
Being a vet has to be good for something, right? If I don't have a baby yet, and I don't, at least I have some hard-won knowledge, and I'd like to pass it on (because clearly I'm not using it). So I thought I'd put together a collection of completely unsolicited advice for the novice infertility patient.

Five Bits of Unsolicited and Probably Very Annoying Advice for Beginners
By Dreaming, who likes to boss people around


Don't count on the first cycle working. It might work, but statistically speaking it probably won't. Save enough money, time, and stamina for the second cycle, when your doctor will be better able to predict your body's performance. If it does work, you'll have a happy surprise, and enough money to buy the teepee and the coach for your adorable boy/girl twins.

Know what happens next. If you have a backup plan in mind -- another cycle immediately, a long break, a spree of wanton violence -- a negative is a lot easier to take. Your plan can be something as vague as, "Don't make any major decisions until I feel better." You'll still be better off than if you have no idea what your next step is. That said...

Be willing to change your mind. You might find that your feelings are changeable from day to day, even from minute to minute. It's fine to insist, "I won't do more than three IVFs," or, "I'll never do donor eggs," but give yourself permission to be flexible as your situation changes. It's easy to make sweeping pronouncements now that could make you feel very foolish one day -- a few disappointments can do a number on your formerly concrete convictions.

The injections are nothing. Trust me. Look, I know the shots hurt, but, really, they're the least of it. If you're lucky, you'll eventually experience the excruciating pain of birth. If you're unlucky, you might experience the excruciating pain of a miscarriage. In the grand scheme of things, the injections are insignificant. And they're a gay little promenade down the primrose path compared to the emotional onslaught.

Two words that can save a marriage: Oral sex. You're not going to feel sexy. You're not going to be allowed to have orgasms. And you're not going to want a penis within fifty feet of your inner sanctum, if you know what I mean, and I think you do. But I promise you that fifteen minutes on your knees now will save you three hours in bitter argument later. A man who's light-headed with sexual release is not a man who'll squabble when you demand that he do all the heavy lifting around the house, or when you screech at him in a hormonal panic, or when you wake him at 4 AM for the fifth time to ask him whether that's really a line on the HPT. Consider it an investment in marital harmony and suck it up (figuratively speaking, of course).
Fellow vets, help me construct this definitive compendium of unsolicited advice. What do you wish you'd known at the start? What are the most important things you've learned? Pitch in your own shining pearls of knowledge, so that others may benefit from our collective experience and, uh, wisdom. Yeah, wisdom.



Posted by: runnerwoman
02-07-2004 09:30 PM
(Edit Message) Don't get hung up on the details.
The tech yesterday said that my lead follicle measured 17.6, and today's tech says it measures 17.5. Oh my God, is my cycle doomed to failure? Oh no, I left a tiny bit of Follistim at the bottom of the vial. Does that mean that I'm not getting all the medicine I need?

There's a reason they call it ART, people. For all the technology we have, IVF is still more art than science. There is such a tremendous variability between technicians, physicians, and the shadows of your uterus that it's hard to sweat the small stuff. Look for the big picture and keep your eyes on the prize.



Posted by: dreaming
02-07-2004 09:50 PM
(Edit Message) Brilliant, runnerwoman.



Posted by: karenw
02-07-2004 11:25 PM
(Edit Message) Oh Dreaming, you are incredible!

I can wholeheartedly back up the Don't count on the first cycle working. I went into IVF thinking my problems were solved! After all, wasn't IVF created for women with tubal problems? And seeing as how I had no tubes, according to my RE I was the perfect candidate for IVF! There was no reason why it wouldn't work for me!
Boy, what a slap in the face that 1st cycle was when it was cancelled for poor response, and then an even bigger slap when the next cycle which was picture perfect but still ended up a BFN. Then there was that FET that worked.......and the utter joy we felt at being one of the few IVFers that were going to so blessed as to have identical twins.......only to have that dream ripped to shreds after being told "oh there's no h/b for either of them". Aren't you supposed to have a less than 5% chance of losing a baby after seeing the h/b on an ultrasound? We had seen ours twice so the RE thought we were home free! Then after that there was the next FET but of course it was a BFN. Can't be lucky twice in a row now can we? Then, the 3rd IVF. Oh, it was fun. RE changed my protocol for some unknown reason......I mean why change a good thing, right? That one was a big flop and of course another BFN.
Now we are struggling with, what can we sell, re-finance, or steal to do another cycle? I mean, how can we stop now? We are the perfect candidates fo IVF. Nothing wrong here but a tubal factor. Oh, and maybe a little +APA. It's nothing that can't be resolved by IVF and a little heparin mixed in!!

So Beginners, what I wish I had known before I started all this is that no matter what your RE says, be prepared for everything to go wrong, that it won't work the 1st time, and even if you don't think you have enough money for another cycle, you will find it somehow. Welcome to the roller coaster ride from hell called IVF!



Posted by: Andi_B
02-07-2004 11:49 PM
(Edit Message) Dreaming - These are great! Number 5, in particular, is a big winner in this household.

I would add:

Educate yourself and ask questions
IVF is a learning experience for everyone involved, even your RE. So, watch what's going on, find out your follicle sizes and E2 levels, and if you don't understand the reason for something, ASK your RE. "Because that's the way we do it," is not an acceptable answer. Insist on rational, scientific (or at least experience-based) answers to your questions.

Advocate for yourself
No one else is going to do it for you. You can go along with the herd, blindly following instructions, or you can pay attention and speak up for yourself when you think something doesn't seem right. If you don't understand something, ask about it! If you need something you're not getting, ask for it! Remember that you (or if you're lucky, your insurance company) is paying major bucks for this service, and as the customer, you are entitled to courteous, respectful treatment.



Posted by: Kelly
02-07-2004 11:53 PM
(Edit Message) Dreaming....So, so true. Where were you when I first started many years ago? I sure could have desperately used your 'unsolicited advice' back then. Unfortunately, I can relate to all of what you suggested.



Posted by: tommygirl
02-07-2004 11:59 PM
(Edit Message) Dreaming, you are brilliant! I have to say that #5 has saved our marriage, but dh still complains that it's not enough All gems of wisdom....bravo!



Posted by: AJB
02-07-2004 11:59 PM
(Edit Message) This is all so true!

DON'T BE AFRAID TO GET A 2ND (OR 3 OR 4TH) OPINION Boy, what a wake-up call it can be. I totally agree with Andi B re: asking lots of questions. I didn't ask enough and did what I was told at my previous RE. Now, in the process of interviewing for my next RE, I have tons of questions.

EXPECT TO GET YOUR FEELINGS HURT Be armed with responses to dumb questions from people so you're not caught off guard. These people can range from family to friends to co-workers to even nurses. If you're going through IVF though, you've probably had your share of dumb comments by this point.



Posted by: laurie_m
02-08-2004 12:35 AM
(Edit Message) You guys are SO right on the mark.

Just last week I was asking a nurse (not mine, thankfully) for the lab closing schedule. so that I could finally plan a vacation for DH and myself, for the first time in 12 months (bet you can guess WHY we haven't had a vacation in 12 months). As part of this request, I happened to say, "Well, if this IVF doesn't work, I'd like to know when I'll be starting my next one, because I figure I can go on vacation when your lab is on vacation."

I got that smug head-shaking response, "Oh, now, THINK POSITIVE. This one WILL work." (Mind, you, I'm almost 41, with an FSH of 12, and at that point had had two completed IVFs cum BFNs, and and one IVF cancelled the day of trigger, so I wasn't exactly being pessimistic to think that there was a possibility that I might be having some future treatments.) I said, "Well, yes, [I FELT like saying "I understand that YOU want me pretend that, so that you'll feel better"], but for me, it helps to plan in advance [I felt like saying, "since no one else is doing so, and if I don't plan the next cycle now, I'll miss my chance to get an HSG and a bunch of other needed bloodwork done during the rest cycle, and hence, will just continue getting older and older until I can finally start the next IVF"], so that I can schedule a vacation."

(I've just started reading a book called, "The Positive Power of Negative Thinking", and next time someone at my doc's office tells me to think positively (especially if it's an excuse for failing to do the work necessary to help me be prepared for the next cycle), I'm going to hand them the book and say, "Here, you go read this, and then we'll talk about 'Thinking Positive' again.)

And, of course, this cycle was indeed cancelled three days ago, on the day of HCG, due to high P-4, so I am indeed going to need that lab closing schedule so that I can plan a vacation prior to the next IVF start. (Unless, of course, I get pregnant on the rest cycle. I guess I should Think Positive about that too.)

Okay, end of rant.

Anyway, though I wholeheartedly agree with almost everything that's been said above, here's one little thing (that I didn't learn the hard way, since I was lucky enough, or insane enough or something, to research the heck out of everything before I even started my first IF treatment, and came upon Dr. Sable's web site very early on):

It is okay for the WOMAN to have orgasms too. During stims, the day before retrieval (in my experience, high levels of E-2 improve the experience, but then again, I'm 40, so maybe I need some improvement in the area of E-2), the day after retrieval, every day in the 2WW, if you want. I realize some REs think otherwise (or claim to think otherwise), but I honestly believe that Dr. Sable is 100% right when he says that intercourse, orgasms, moderate exercise, and even jumping on trampolines right after transfer, will not hurt our chances of getting and staying pregnant one bit:

http://www.fertnet.com/html/crunch_time.html
http://www.fertnet.com/html/2001_archives.html

(I personally speculate that orgasms and moderate exercise may actually improve our chances a little bit; blood flow to the pelvic area and good circulation in the body generally are probably a good thing for fertility. Which isn't to say you should sweat it if you don't have a lot of orgasms during and after stims, either.)

I'm with you about not *wanting* intercourse for about a week after retrieval (probably because I can't help being paranoid that I've been "injured" by retrieval - I actually had much less actual pain both times than I'd thought I'd have). And if I had worse ovary pain or OHSS during stims, like some women do, I'd probably skip intercourse during stims too (since I have tubes and we don't have MF, I do like to slip in one sperm deposit the night of trigger, just in case they miss an egg or I ovulate early or something). But orgasms and intercourse, as Dreaming points out, are two different things.


Posted by: dreaming
02-08-2004 12:38 AM
(Edit Message) Woo hoo! Going off for a wank right now. Ignore any suspicious buzzing sounds or triumphant yodeling you might hear, okay?


Posted by: twizzle
02-08-2004 12:44 AM
(Edit Message) Great thread! Here are a few more:

Impart info about your IVF journey on a "NEED TO KNOW" basis
Unless you really like these people and consider them to be true friends, don't tell office-mates or your boss what you're going through. You'll only invite badgering questions from Nosy Nellies and will feel extra bad when you have to reveal to your coworkers that you got a BFN after all that you've gone through. Plus, your boss will treat you differently if he/she knows that you might not be around the office for much longer.

Trust Your Doctor...within reason
Maybe I was lucky because I trusted my RE's judgement and decisions 100%; howevever, if your RE says that it's okay for you to stop heparin (or PIO or whatever), just do it. S/he should know best. You'll get a much more straightforward answer to niggling questions if you just call your RE's office rather than posting questions on the board such as, "How many weeks were you when you quit PIO shots?"

Try to cultivate a ZEN outlook during the 2ww
While it's not advised that you should have rowdy sex or play hockey during this delicate time, try to relax, not obsess too much, and realize that there's nothing you can do to help those embryos stick. It's out of your hands at that point, and all you can do is wait and be optimistic. (If you don't harbor even a speck of optimistism, why bother doing IVF at all?)

Have lunch with other IVF-ers in your area
Forming live friendships with the wonderful women on these boards has been a wonderful thing in my life. I went through my first two failed cycles completely alone (didn't know about IVF-C) and was horribly depressed. Connect with others who are in the same boat!

Twizzle

Posted by: laurie_m
02-08-2004 12:47 AM
(Edit Message) Dreaming, due this important new information I have imparted, and your willingness to act on this information, I believe your chances of getting pregnant this very cycle have been increased.

Think Positive, okay?


Posted by: omega
02-08-2004 01:10 AM
(Edit Message) Don't think you are a star


You may think so, because YOU are about to start the biggest scientific adventure of your life: in vitro, a magnificent manipulation of cells and human life. Just like Louise Brown's mom!

You think so too, because only special people go through it: a millionaire like yourself.
Your bank account devoured in one day upon the start of the adventure buys you the 5 plus star hotel you expect the clinic to be. "HAS to be ... $$$".

You are walking in with majesty now, and staff should know your name first sight, but the waiting room is full of millionaires just like you, it seems! And NO seat for you. "Just like waiting to see the dentist to fix my cavity", you realize.

You think the staff will lead you through the secret rooms where the action takes place. After all, "they need me" for the experience. "I'll watch the X and Y cells join in the dish", you think, but you shall never know if the embryologist is a dog or if is even there.

You are home. You think the staff shall follow the miracle of embryo attachment and fetal development each day.
RE shall also call in the end with sounding congratulations. You paid for that call too, of course! Nope, nurse shall hear your cry (or possible scream, but as Dreaming said, highly unusual).


To the beginners:

IVF is the most boring, annoying and expensive procedure of all.

Each day shall be the same:

You'll find lots of closed doors, and you shall move from waiting room to ultrasound room, to "blood room" and out.

RE shall ask the nurse for your file as soon as you step in: he won't remember your name neither your great testing accomplishments, neither your next steps, your previous steps, your reason for being there ... unless he reads.

Note: He shall remember your name once you've failed your 3 rd. cycle, but he shall still need your file to remind himself at what point you are in the IVF marathon.

So here's a summary of the process:

1) From home to RE's clinic waiting room.
2) From waiting room to RE's office to plan IVF.
3) From RE's office to the streets.
4) From home to ultrasound room for baseline.
5) From ultrasound room to "blood room" (not even a lab; can't call it lab).
6) From "blood room" to the streets.
7) Numbers 4, 5 and 6 repeated about 6 times.
8) From home to hospital lobby.
9) From hospital lobby to surgery/retrieval room.
10) From surgery/retrieval room to recovery room.
11) From recovery room to your home.
12) From home to hospital lobby.
13) From hospital lobby to transfer room (tiny like ultrasound room).
14) From transfer room to hospital bathroom (1/2 hour peeing).
15) From hospital bathroom to your home.
16) Home, home, home eternally.
17) From home to RE's clinic waiting room.
18) From waiting room to "blood room".
19) From "blood room" to your home (not the streets) to wait for the call.
20) From your home to RE's clinic waiting room to start this process again (number 1 to 19): MOST LIKELY

or

20) Read numbers 17, 18 and 19 to repeat successful blood test: LESS LIKELY.



Posted by: twizzle
02-08-2004 01:20 AM
(Edit Message)
quote:
--------------------------------------------------------------------------------
"I'll watch the X and Y cells join in the dish", you think, but you shall never know if the embryologist is a dog or if is even there.
--------------------------------------------------------------------------------



Was the dog a lab? Get it? A Labrador retriever?

Maybe that's why my first three cycles failed -- my embryologist was a dog!

Thanks for the laugh, Omega!

Twizzle

Posted by: omega
02-08-2004 01:31 AM
(Edit Message) Ah! One mportant secret
Beginners:

The perfect cycles tend to fail.

The imperfect cycles: expired meds, missing shots, 1 egg and 1/2 embryo as a result ... tend to succeed.


Note: but it won't happen to you now because I told you. It works ONLY if it surprises you, sorry.


Posted by: laurie_m
02-08-2004 01:39 AM
(Edit Message) Oh yeah, Omega reminded me of some more advice (though I couldn't real call it "wisdom").

Bring a book. Even when you think it's only going to be a "quick blood draw". That way, you'll be *sure* to have something to show for all of your money and time ... a stack of books you actually read!

Also, they sell chairs (I think they're called backjacks) that you can bring with you to sit on if the waiting room has no more chairs (St. Barnabas, Cornell, etc.); or if you plan in advance, in summer you can buy one of those folding "sand chairs" that people take to the beach. You can put either of these in your trunk, or maybe even carry them on the subway. And they may even have a little pocket to carry your book in.

Once you have signed the monitoring sheets, never go to the bathroom for any reason, because your name will be called once, softly, sometimes without even your last name (for "privacy reasons", ha ha ha) and then they will move on to the next person, and you may be put back in the queue again. So pee, or wank off, or whatever you need to do, before you put your name on the list.


Posted by: pookie007
02-08-2004 02:01 AM
(Edit Message) This is a great thread. There is a post on the 40+ IVF board that basically asks for the magic formula for a successful first IVF. Gee, if we all knew that, we wouldn't be here! I would add the following 2¢ to this thread:

Do your research and do as much testing as you feel comfortable with. This is a corollary to what Andi and AJB said. Ask your RE questions, but what do you do if s/he says, "I don't believe in immune/bacterial/whatever issues." So then what do you do after a negative? Just try again and hope everything works out OK? I just couldn't do that. If you have a suspicion that you have some kind of problem -- whether its genetic, sperm DNA fragmentation, immune, etc. -- do your research on the Web and these boards, decide what kinds of tests you want to take and get the scrip written from a sympathetic gynecologist or other doctor. (This way a lot of tests will be paid for by your insurance, which is nice to know if you're getting a karytoype or a cystic fibrosis screen.) If the results show something amiss, either get your RE to work with you, or find a new RE who's a little more open-minded and a little more customer-focused.

Pookie

[NSTN]

This. was. awesome.

Good job!

I'm learning not to believe everything I hear, even if it comes from a seemingly knowledgeable source.

[TigerGirl]

This was sooooo awesome. This brings back what my Mama used to say---YOU have to look after yourself cause NOBODY else is gonna do it for you. She wasn't refering to infertility, just life in general.

[barren-bipolar]

I've learned:

1. Don't listen to people (including your primary care physician) who say: "Oh, you're only 32? Don't worry. You have PLENTY of time!" Your ovaries may be older than the rest of your beautiful bod. You might even go through menopause a decade before your own mother did. Surprise, Surprise!

2. They might make you wait 1 entire month between IVF cycles. During that month, your biological clock will keep right on ticking away. No time outs here. No taking out the batteries so the clock doesn't tick. It will keep right on ticking, and you'll keep hearing it tick even if you stuff ear plugs in your ears.

3. Freezing your eggs might not be an option. Our clinic says it's too experimental at this stage so it's reserved for cancer patients. Maybe in 5-10 years? But who has 5-10 years???

4. If you marry sort of late (read- any time after your graduate degree), you might not want to tell your husband that you want to wait two years so that you can "enjoy" each other before you start a family. If you wait 2 years, you might find that you are "enjoying" each other much more than you anticipated!

[mizshan]

Choice, thanks so much for posting that. I needed it!!