Thursday, April 29, 2004

Infertility

As much as AOL frustrates me at times, I thank my lucky stars that the AOL online community existed when I stopped working. Being a stay-at-home-mommy can be a very isolated existence. My small town has no playgrounds, and until just a couple months ago - no organized mother's organizations. I was hard pressed to find a playgroup back in the early days of being a new mom. The internet was a huge help there. The sad fact is, I used to work my ass off and was never home. I am not an outdoorsy person and I only know one of my neighbors on sight. When we moved here I was thrilled to be moving to a neighborhood full of transplants (new construction) and everyone seemed to be around our age and stage of life. Young couples trying to have a family or young families. Perfect environment to make new friends, right?

After settling into my daily routine in the new house it became quickly clear that that routine would be this:
1. Wake up
2. Go to work
3. Come home WAY too late
4. Eat and collapse into bed
5. Lather, rinse, repeat until you need a vacation or go postal.

Other than an occasional wave from someone vaguely familiar looking in a car headed up the street as I was pulling into my driveway at some ungodly hour, I didn't have any contact with my neighbors. My hubby faired a little better in that department. He had a home office and was outside now and then to mow the lawn, take out the trash, or get the mail. I got all my neighborhood news from him. "Did you know 'The Doctor' sold his house?" No! They were in there for less than a year! "Yep. There is a For Sale sign out front..."

This sad state of affairs was bound to change once we had kids, right? The whole point of buying a house in the 'burbs was to have a family (that's why we moved to the town with the good schools). I fantasized about staying at home with my baby...walking her/him down the street in the stroller and waving to the neighbors "Hiya Bob! How's it going Janey? Hey Laura, how is Katie doing in pre-school this year?" And "Laura" would invite me in to hang out in her pretty kitchen that looked so much like mine...shoot the breeze as our babies rolled around on a blanket together. Yep. Life would be sweet.

Then there were the joys of being pregnant, giving birth, breast feeding... I was looking forward to all of it with eager anticipation. We had been so careful throughout our relationship, my husband and I. We were always "safe". Used that birth control religiously. I didn't want a little one to arrive too soon and spoil the plan. I could probably take a 3-week vacation to Hawaii on what we spent on birth control over the years. I can almost laugh about it now. Almost.

But first came 5 painful years in our pretty new home. The agenda was simple. Stop using birth control, get pregnant, live happily ever after. Women did it every day! Never dreamed it any other way. A year passed...a couple times when my period was late I would get SO excited...nada. My cycles had never been "normal". They were long...too long. Who wants to bleed for 8 or 9 days? They were HEAVY too. I ruined so many skirts over the years. Then there was the pain...can't tell you how many times I missed school in my teens and 20s because the cramping and stabbing pain had me feeling nauseous and like I would faint. My Mom always chided me about what a baby I was regarding that time of the month. "All women suffer like you. It's what women have gone through since the beginning of time...blah blah blah, get out of bed and go to school."

I went to see my first gynecologist when I was 17. Not because of my periods, but because I wanted to go on the pill (oooo naughty girl!) He asked about my cycles and I told him the truth. He was the first person to use the word "endometriosis". He also said that to be sure I would have to bring my mother in to talk to him about my undergoing exploratory surgery. First of all, I couldn't very well tell my mother that I had snuck off to my first gynecologist appointment without her, plus he might tell her why I came to him (no way!) and then there was that word...surgery. Scary for a 17 year old kid! So I did nothing (except fill my birth control prescription). [By the way, Mom found out anyway that I went when the Doctor's office sent a statement to my house (addressed to me) and my Mom recognized the Doctor's name on the return address and opened it. She had a friend who used him as her doc. Thank heavens for me that there was no mention of birth control in that envelope.]

The next inkling I had that my pregnancy plans were going wrong was at the end of that first year of "trying" when one fine Saturday night I suddenly collapsed on my bathroom floor in the worst pain of my life. Less than 24 hours later I was on the operating table as 2 surgeons tried desperately to save my life. Apparently I had a belly full of gargantuan tumors - blood and gunk filled cysts, one of which had wrapped itself around my right ovary and fallopian tube CRUSHING them and cutting off the blood supply. One of the cysts had ruptured and the resulting toxic shock from a massive infection is what caused the pain that put me under the knife. I was also a mass of scar tissue, my uterus was glued to the wall of my abdomen and much of my lower organs were stuck together with adhesions and endometrial lesions were everywhere. I hadn't picked a new gynecologist since we had moved to the new house, so it was meant to be that one of the men who saved my life would become my new doctor. He brought me my surgical report when I had recovered from the anesthesia. He solemnly told me I was now sporting a 13 inch incision across my lower abdomen (a bikini cut, giggle snort) and apologized for having to open me so wide...he had to make room to remove the TUMOR THE SIZE OF A NERF FOOTBALL that was growing in my gut...along with 15 lbs of other gunk that was removed (worst diet plan EVER). He smiled and told me that I was the worst he had ever seen...a "trailer park after a tornado" is how he described it.

I listened with increasing dread as he described the condition of my right ovary (crushed and lifeless/removed), tubes (one crushed/removed, the other mildly damaged but might recover), left ovary (removed cysts and scar tissue, thinks it will be OK) and uterus (banged up but otherwise healthy looking from the outside). He smiled encouragingly and said even if my tube doesn't recover, as long as my left ovary was producing eggs there was something we could do to have a baby. I asked him to be honest about our chances and he said only time would tell. I was in shock and wouldn't come to terms with the news until long after I was home from the hospital. After 7 days in the hospital, the pain of recovery at home kept my mind pretty occupied. My abdominal muscles had been rendered useless and the pain of the huge incision trying to pull itself apart with every little move I made...well, I had a hard enough time just rolling over in bed. It was 8 months before I started to feel like I was almost back to normal. I never did come all the way back to how I was before the surgery. I suffered extensive nerve damage around my incision....I have no feeling from about 1/2 inch below my navel down to about a 1/2 inch above my pubic hair. I still can't do a sit-up to save my life. Oh and the prognosis from all of this? Yes indeedy I had Stage IV Endometriosis. The docs had removed all they could but the disease is incurable. It grows back over time. But Endo will be the topic of another post, another time.

Back to the plan! I could have a baby with one ovary, one tube and an OK uterus, right? We gave it another year...all the while doing mega research on infertility treatments. Hubby heard that the folks who lived across the street had conceived their baby using IVF. He asked the husband about it one fine day when they were out working on their yard. They went to the very hospital clinic that we had read so much about in our research and had pretty much decided on going to. We got a glowing recommendation from them (a plus). At the end of the year's time, we went to the clinic for our first consultation. A battery of tests were scheduled...shooting dye into my tube (hysterosalpingogram)...OUCH...filling my uterus full of fluid to check my lining...OUCH OUCH...exploratory laparoscopic surgery to see how much new damage the endo had caused...OUCH OUCH OUCH...and so it went...along with mondo amounts of blood tests and the dreaded (for hubby) sperm testing. That is actually a funny story...for another post.

He tested fine. I, on the other hand, had problems. Well, duh. Big surprise! I was now suffering from a condition known as "frozen pelvis". I had so much new scar tissue and adhesions that everything below my diaphragm was frozen in a huge webbed mass of tissue. They were unable to drain the fluid from my outrageously distended fallopian tube (it was block at both ends). Oh well...who need a tube when you are doing IVF? Not us! Plus side of frozen pelvis? My intestines were frozen in a favorable position...the years of horrible IBS I had suffered prior to my first surgery were a distant memory. Negative side? It was gonna hurt like HELL when those adhesions started snapping like millions of rubber bands as my soon-to-be-pregnant belly expanded. Oh well...the pain would all be worth it! The years of crying every time I saw a pregnant woman walking the halls at work, crying as friends had kids, crying at family showers, crying at TV ads for diapers (for pete's sake); it would all soon be a distant painful memory! After the shock of how much IVF would cost wore off, we very practically decided that we would make 2 attempts. If it didn't work, then we look at other options. The test for my uterus showed I had a small fibroid forming, but our new infertility specialist told us not to worry. It was "in the back and high up" so it shouldn't affect my ability to carry a child to term. This clinic had the best results in the state and they were one of the top 10 in the country - needless to say, our hopes were VERY high.

I won't go into the nitty-gritty of all the drugs we used, how many injections, etc. (if you are looking in to IVF and want details, drop me an email)…suffice it to say that I was a walking pin cushion on the worst emotional roller coaster ride of my life. The hormones were out of control! I honestly think I had a legally defendable defense for committing murder. I wisely chose this time to make a change in my career and I took a MUCH less stressful and demanding job assignment at my company. Who had time to stress over work? I had enough on my plate as it was. I no longer had the excessively long days with loads of overtime. I was leaving the house and coming home on a saner schedule. I was actually enjoying going to work each day (minus the frequent breakdowns from my hormones being all wacky).

The first round of IVF was a complete failure. In the middle of the cycle, our world renowned doctor decided to leave the clinic and start his own private practice. We were talked into staying with the clinic and a new doctor to finish out our cycle. It would be too disruptive to bail out at that point. We let my body recover for a while after the first round and wisely decided to follow our doctor to his new practice for round 2.

More tests were done in prep for round 2 where it was determined that my formerly small fibroid was now the size of a VW bug. Hmm - guess those shots had an adverse affect and caused a growth spurt - oh and P.S. they also made my Endometriosis grow back with a vengeance. I'm sorry Becky, your uterus is now compromised. It is unlikely you could carry a baby to term. I just wanted to curl up and die. Then he continued - But have you ever considered surrogacy? WELL! That opened a whole other can of worms for us. We had talked about how far was too far. We always thought doing the donor egg was going too far. If the child wasn't 100% genetically ours it wouldn't be fair to ME. If we were will to go that far, what was stopping us from adopting? My husband's Aunt had offered this sage bit of wisdom in the midst of our IVF trials and tribulations, "What do you really want, a baby or a pregnancy?" Well duh! We wanted a baby.

So in the end, someone else carried our baby. And everything has been near BLISS on the personal front since his birth. Tyler is perfection. We burned out my poor ovary with those two IVF cycles - so no going back to the well for the next baby (and I am currently experiencing the joys of early peri-menopause). Adoption is our path going forward. We are eagerly anticipating the future when Tyler will have a little sister to play with. I hope it's soon. The unemployment has put things on hold (no one will give us a baby if we have no source of income - go figure). So I return to the start of this lengthy post - Thanking my lucky stars for AOL. I still haven't made friends with the neighbors. My outlet is the large number of online buddies I have made through the Parenting Boards on AOL. I chat with some of them every day! They are my sounding board, my source for advice, a shoulder to cry on - you get the picture. AOL and the internet have been an amazing resource in our infertility and adoption research too. I could write a book! And I just might. I hope our unemployment situation changes soon. I hope I can post about our journey to adoption soon too. I hope I never have to experience the pain and emotionally draining circumstances of infertility ever again. I am putting it all behind me. But you know...they come out with new treatments and technology every day...

1 comment:

Michelle said...

That brought back loads of painful (bad pun!) memories.

Take a ((hug)) from a total stranger who has been there exactly the same with the endo - twice. Lost my right ovary exactly as you did 12 years ago and nearly lost the left one two months ago. Pain both times was horrendous!

They "saved" the left one this time in hopes to give me one last chance at falling pregnant.. yeah... right. I have the fibroids too so I'm not holding my breath here! Dr not happy to try IVF since he basically sewed my shattered ovary up and thinks IVF might be too much for the old thing to cope with.

Some days are good, some are cr*p.

I'm glad you got Tyler.. and Max.