My journey... the long version

Hi.. i'm jennie ... I am almost 35 and DH is 35... we've been together for over 10 years and married for 8.5... but been Trying to Conceive (TTC)pretty much since the week we met....

below is my long and drawn out story about PCOS, infertility, TTC'ing and my IVF journey.... it felt REALLY good to write it all out.. and if you make it to the bottom.. thank you for reading. :) and please pardon any typos... i hope i got them all.. lol
------------------------------------------

i got my period when i was 11... it was february 23, 1987... i was never, ever regular. i do remember that first year it came maybe every other month.. and i thought this was normal. it was not until i was 16 , and i was having my period every 3 to 4 months by then, that my mother decided to get me checked out by a gyn. the woman was a moron in my opinion... she could not "figure out" what was wrong with me... could not do an interal exam since i was a virgin and very, um, tight down there (had never even used tampons)... so she decided to put me on an estrogen pill... if i remember rightly i took it for the first 5 days of the month then got an excruciatingly painful period about a week later.. after 3 months of that i stopped taking them. the pain had me bedridden for 2 of the 7 days of the period and i was an active 16 year old who did not want to live like that.

when i was 18, i saw another gyn and had my first "real" exam... he is the one who diagnosed me with PolyCystic Ovarian Condition (PCOS)... he based this on the irregular periods, the pain i had had, the mood swings i had lived with for years, and my thyroid and sugar levels (i was recently diagnosed as borderline hypoglycemic but not diabetic) ... i weighed about 165 at that point, but was not fat.. i was healthy otherwise... so we never considered my weight to be part of my PCOS... but his exact words to me were "we don't know much about this disease so all i can try is putting you on the pill to regulate you."

those words were the worst i had heard up to that point. over the next year, i was on 6 different doses of BCP's... one made me bleed for 2 weeks, one made me bleed for 3 days every 2 weeks, one made me skip a month, one made my mood swings so bad i could barely control my anger or my depression, one made me end up in the fetal position for 4 days of a 7 day period... shall i go on?

after dealing with all that for a year, i was done. i figured i was still a virgin and in no hurry to change that till i got married... so i would deal with what my body did naturally... and it went back to the every 3 or 4 month cycle.... things happened, which is a whole 'nother story, and at 19, i did become sexually active, but never really thought about what was going on inside me....

at the end of my 3rd year in college, i was 20, i was in an aerobics class, and i remember the impact of the steps really hurting my abdomen... i thought it was just because i was out of shape and working too hard.. so i ignored it....

a few months later, in june of 1996, just before my 21st birthday, i went to the hospital with extreme pain in my abdomen... i had frequehntly felt discomfort, like in the aerobics class, but never pain like this...

i was taken to emergency surgery because both of my ovaries were tortioned ... basically they both got wrapped up in the fallopian tubes much like the umbilical cord can wrap around a baby's neck..... the right ovary was swollen to 4x the normal size and the left was 5x swollen...

the dr unravelled the ovaries and placed them in their "natural positions" and sent me home to recover.. but did say if i had not already know about it, he would have given me a diagnosis of PCOS based on the condition of my ovaries.... yay for 2nd opinions.

the years passed and i was in many relationships (i was having sex regularly by then)... rarely used protection (stupid i know)... but never got pregnant...

in January of 2002, 2 weeks before my wedding, i was taken to the hospital from work with extreme pain in my abdomen... they did a Laparoscopy (LAP) and removed a lot of scar tissue from around my ovaries and my uterus that they believe was from the tortion surgery (which was also a LAP) that was causing so much pain.... after that surgery, the every day pain receeded.

2 weeks later, i got married and DH and i started discussing having kids... i had shared my history with him from the start, so he knew the chances of us getting pregnant naturally were slim... not only did i have obvious PCOS but i now likely had damaged tubes and a cervix that was most times too thick for sperm to pass through. (the dr's told me that when you ovulate, the cervix thins enough to let the sperm to pass through it... but in me, when i did happen to ovulate on my own, that process did not happen, because i did not produce enough of the hormone needed to thin it) by then i was also overweight (i had reached around 180 and couldn't seem to get below that, but i didn't gain much weight either)... and had that annoying extra hair growth that so lovingly comes with PCOS... my periods varied between every 3 months to every 6 months.. no rhyme or reason to it... my moods varied depending on the week and where i was in my practically non existent cycle...

in October of 2002, We started seeing a Reproductive Endocrinologist(RE) who recommended we first try a procedure called Cyst Drilling... he described it as he would do a LAP and go in and drill the existing cysts on my ovaries and hope that my system would then jump start itself and spontaneously revert to a "regular" ovulation cycle..... didn't work..... he then suggested we try IntraUterine Insemination (IUI)... they put me on Clomid to assist the ovarian follicles into maturing...

then in early May 2004, when i got a positive indication on an Ovulation Prediction stick, i went in and they injected DH's sperm into my uterus just as i should have been releasing the egg from my ovary... it worked the first time. we were estatic. then there was a problem... the beta blood tests showed my numbers were not rising as quickly as they hoped (for a "healthy" pregnancy, early beta numbers should at least double evert 48 hours)... so they kept monitoring, and the numbers rose, but not doubling...

at 6 weeks 1 day along, we did an ultrasound to find a heartbeat, but the RE could not find one,a dn feared it was in the tube. we were given the choice of surgery to explore and see what was going on (i veto'd that immediatly because of the danger to the baby)... we could call it an unsalvagable pregnancy and take a chemotherapy drug called methotrexate that would basically abort the fetus (DH and I both veto'd that as soon as he heard the RE say abort)... or we could wait it out and see what happens.... that was what we chose...

then disaster......

on 6/6/2004, at 6 weeks 5 days, i was experiencing horribly sharp pains in my abdomen that caused me to literally not be abel to talk or move... we called the RE an had to go in for emergency surgery for an ectopic pregnancy.... from what we can figure, they developing embryo got caught in the scar tissue that was in my tube from the tortion back in 1996 and never made it to the uterus.... the dr told me i was hours from it rupturing.... that was the only time i had ever been pregnant....

as is procedure, i kept having to go to the RE's office to have my blood levels checked to verify my numbers were going down as they should because the pregnancy was removed, as it would have been in a miscarriage.... but no... aparently my numbers wend down, then started to rise again... it was determined that when the surgery removed the underdeveloped fetus from my tube, there was embryotic tissue left in the tube and it was continuing to grow... so my only option was to take the Methotrexate drug to get that tissue to leave my system....

if you have never had to take a chemotherapy drug, pray you never do... it was the worst i had ever felt in my life up to that point... but it worked, and finally 3 and a half weeks after the surgery, i was testing with no pregnancy hormone in my system.... i was devestated, and scared, but still had such desire to be a mother...

a few months after losing the baby, who we call Lelia Eleanor after my 2 grandmothers who passed away too young (LuLu for short), i had an Hysterosalpinogram(HSG) test and found that my right tube (where the ectopic was) was over 90% blocked.. and the left was 40% from existing scar tissue... the scar tissue looked like a maze... the best way to describe it is this... if you take a drinking straw and wrap it around your finger a few times... when you release the straw it has a bunch of kinks in it.. that is how the scar tissue was gathered.. in lots of little sections where the "kinks" were in my tube after the tortion.... not great news.

we went ahead and went through 2 more IUI cycles that year, at my RE's suggestion... focusing on the left side, the "better" side, but neither of them worked...

in 2005, i had another LAP to remove a polyp in my uterus and more scar tissue that was outside it... the DR's then told me that InVitro Fertilization(IVF) was going to have to be my next option... but it is just so expensive.......

at this point my period was still varying from every 3 months to every 6... and i was having sporatic problem with cycts bursting and causing a lot of pain.... i had gained about 40 pounds since that 2nd surgery after the wedding, and the surgery for the cyst drilling, and the surgery losing LuLu and the surgery in '05... and so many of the PCOS symptoms i had ignored 40 pounds ago came to the forefront... but i dealt with it and learned to live with the pain, moodiness, and anger. i tried losing weight a few times, but no matter what i did, i could never get below the 200 pound mark.. that is still my plateau.

for the next few years, we decided to stop trying and see what happened... but nothing ever did.. we know what my problems are... and no amount of "stop trying so hard and it will happen" from well meaning but uneducated people would change what is physically wrong with me... we learned to deal with my continued irregular periods, my cyst pain, my moodiness, and my anger and depression... and a gradual worsening abdominal pain, especially during sex...

in August of 2009, we decided to try IVF. we went to a new RE and after hearing my history, she was very very optimistic that she could get me pregnant... but recommended 2 things first.

1) i needed to have the right tube removed... the loss of the ectopic caused it to be so blocked it was unusable and all the scar tissue had actually been causing me pain for several years... so removing it was healthier for both me and any future pregnancies...
2) clamp the left tube... not cut it.. just clamp it... she said that in IVF the embryo's do have the ability to float up into the tubes before they implant on the 3rd or 4th day, and because of my history and the existing scar tissue, that was something we wanted to prevent.

so in September 2009, i had a right salpingectomy(sp?) and left tuballigation with clamp... so now am officially 1 tubed and "fixed"

October 2009 we started on our IVF journey... we did all the meds as directed ... multiple pills and patches and several injections a day of a drug called Follistim, which basically caused my ovaries to start growing multiple follicles and ***you might want to keep this in your mind if IVF is your way to go*** aparently PCOS patients can be what my RE calls Egg Queens.... i had so many follicles growing that she could not even count them all on the ultrasound... tho week before the retrieval I hurt soooooo much with all those follies making my ovaries so swollen... i felt like i was going to burst...

On November 1, 2009, i had my retrieval.. she took out 15 eggs... but left so many follicles that did not appear to actually have eggs in them.... but she was not going to be able to do a fresh transfer of any embryo's that fertilized.

There is a disease called Ovarian Hyperstimulation Syndrome (OHSS) and it is aparently very rare (only 1-2 percent of IVF patients get OHSS) but i believe she said between 60 and 70% of those patients in her experience have been diagnosed with PCOS.... it was horrible...

what happens is the excessive amount of follicles start secreting fluid that your blood stream cannot handle and it fills up your abdominal cavity... you get dehydrated and your body stops processing any fluids because it gets so overloaded...

in 3 days i literally had gained 35 pounds, yes, i said pounds, of fluid... i was barely urinating even tho i was trying to drink and my RE even put me on IV fluids twice.... i had to be taken to another doctor to have some of that fluid tapped out.... that was the most excruciating thing i have ever felt in my life.

with local anesthetic, more like novicaine than anything, they inserted a catheter into my abdomen through a small incision in my side at the base of my ribs... and snake the catheter inside to the largest concentrations of fluid to guide them to drain out.... they got 3 liters of fluid out and i was still in bad shape... as the doctor tried to remove the catheter to move to the other side, it somehow got snagged on the tissue in my abdominal wall... it was so painful i was screaming and the nurses had to hold me down on the table so i would not thrash around... they ended up hospitalizing me... it was 3 more days before my body started processing the fluid... in 2 more days, i was peeing every 40 minutes and literally dropped 20 pounds of fluid... it was insane.

in the mean time, of my 15 eggs retrieved, 8 were mature and all fertilized, they were grown to 3 days old then frozen... but only 7 survived the cryofreeze to wait till i was healthy enough to do a Frozen Embryo Transfer (FET)...

it was also another 3 months before my body was back to normal (tho i still had not gotten my period since the week after the retrieval)... so i was put on some progesterone pills and got my period the last day of january.....

for our Frozen Embryo Transfer (FET) i have to be on estrogen patches for 2 weeks replacing them every other day.. starting with 1 and increasing in number till i wear 4 at a time, which is supposed to mimic the body's natural buildup of estrogen

when bloodtests show the estrogen level is right, and the uterin lining is thick enough, I start taking shots of Progesterone In Oil... this is to mimic the body's natural production of progesterone when the follicle is released and then fertilized... on day 4 of the shots, the chosen number of embryo's are thawed and if in good enough condition, transferred at 3 days old (or 5 in some cases.. depends on the RE's preference)... 2 weeks later, i go in for a beta blood test to see if the embryo's survived and whether or not i am pregnant.....

February 17... FET of 2 embryos...


on March 1, 2010, after transferring those 2 perfect embryo's, 2 weeks before, we found out it did not work. i was devestated... everything seemed so perfect but for whatever reason.. they did not stay...... so we had to wait till we could try again....

then is now.

after repeating the preparational steps as the last FET, on Thursday, June 17, 2010, we went in and transferred 3 3day 8cell embryos which were in perfect condition... our Re could not explain why the first try did not work, but being 34 years old did not help my odds... so she decided that if we transferred 3, it might be that third one who stays... so that is what we decided to do...

here are my beautiful totsicles....


unfortunately, the embryologist had to thaw all 5 of our remaining frozen embryos to get these 3... the other 2 did not survive... so this is our last chance with IVF... i have an over 80% chance of getting OHSS again if we were to go through another stim cycle to create more embryos, and i cannot take that risk... so this is it... and i have faith that if I leave it in Gods hands, He will know what is best for us...

it's really hard because we have not been able to share all of this journey with the people in our lives, only a select few... i have tried to remain as optimistic as i am able through this whole process, but even a happy person like me takes some wear and tear... so in the beginning, we decided it was best to tell as few people as possible to keep ourselves in the bright frame of mind...

I decided to POAS (Pee on a Stick) on June 26... and here is the result:

very light... but definitely there.....

On June 29, at 12 days past 3 day transfer (which means the embryo is considered to be 15 days old) i had my first beta blood test, 83.9.. which for an FET is awesome..... my 2nd beta was on July 1, and it was 195... more than doubled which is exactly what it should be doing... according to my dr and all the nurses this looks to be a very healthy pregnancy at this stage... the rest of my hormone levels are perfect so for the next month i continue wearing the estrogen patches and having my poor husband give me the progesterone shots i know he hates... but it is what keeps our baby(s) growing until the placenta takes over hormone production between the 8th and 12th week...

so for now we wait...we pray...we hope... we follow dr's orders and i take care of myself and my growing bean(s).

My next appointment for an Ultrasound is July 27, 2010... then i will get to see how many babes are in there and hear the heartbeat(s)... i had hoped it was to be sooner, but scheduling conflicts with my Dr made this the earliest we could get in... which is fine. I will be 8 weeks along at that point and i simply cannot wait till that day is here... i don't know if this pregnancy will truly be real to me until i hear that heartbeating...

we have been through so much over the last 10 years, i cannot even express the joy that i feel knowing it has worked on our final try... i know the uncertainty that exists for all pregnancies until you hit the 2nd trimester, but i have to remain in a positive frame of mind. it is not in my hands... from now on it is all up to God whether our beanies keep growing or not... all i can do is have faith and pray that He knows what is bets for me and my growing family.

there are some people who believe IVF to be "unnatural" and "against God's wishes"... i actually had someone say to me once that "if God meant for me to have children, he would have made me normal."

excuse me, but i AM normal... i believe God has placed these challenges and barriers in my life to make me a stronger woman for them... He knows i can handle them... i also believe that IVF would not be an option for me if God did not want me to try it... if i never tried, how would i ever know what i could and could not do? He has a plan for me, i beleive that.. but i have to choose my own path to get there.

i am not perfect.. but neither is anyone else in the world.. "Normal" is abnormal... imho
i know several women through some support boards i frequent who have PCOS and have conceived naturally... i also know several who have conveived with IUI or IVF... and even some who have not been able to conceive at all.

I choose to try everything i can to become a mother.. and once i am, whether it be through this path or adoption later.... i will be satisfied that PCOS did not beat me and i have done everything i can to beat it...

and i am on my way...