IAmA female born with failing kidneys, a solid vagina and later crossed paths with ovarian cancer. My story.
Hi all. My name is Amanda and here is my story. I was born in 1990 and all seemed well until I fell very sick. Here is my story. In 1992 I ended up needing a kidney transplant from my mother due to interstitial nephritis. My Kidneys were not functioning properly and my mom got tested for compatibility. She ended up being a 5/6 which was good news! Parents are typically about a 3/6. The local hospital we had been staying at couldn’t handle the transplant in 1992 and sent us to Children’s Mercy West in Kansas City. I was their first transplant on a baby. The human body really is quite fascinating! As an adult, my mother’s kidney was adult sized and I was a small, petite and sickly two year old. After being transplanted into my body her kidney shrank back down and then regrew again through all of it’s stages with me. We were told it would work for approximately three years. Medicines were pretty harsh and Prograf and Cellcept weren’t around. It ended up working for 16 years because I am half made of kryptonite and plain awesome. Jokes! Note: they attempted to actually do this surgery three times. One time they opened her up, I sneezed and they called it off. Third time was the charm. Anyways, it worked 16 years.
That put me summertime, right before my senior year it failed. My dad and mom decided my dad would be my donor so my two elder siblings didn’t have to be tested nor worry about donating a kidney. That man and idol half killed himself to donate his kidney to me. They put him through a million tests. One was blood sugars. He knew he was diabetic but also knew I had to have a kidney. At the hospital they gave him a sugary drink and then he had to drink it there and come back in an hour to test his levels. This was for his safety to donate which wasn’t his priority. After drinking the drink he left the hospital and stuck his fingers down his throat and forced himself to purge the “drink”.. literally popped a blood vessel in his eye. It was snowing heavily out so he walked six miles and started shoveling random driveways around the hospital for an hour to make sure he would pass. He did. Also lost about thirty pounds that the doctors said he would need to lose to donate. He wasn’t obese or anything but slightly heavier than the “average” on their charts. They had checked if we were a match and we were a 3/6.. typical parental match with zero antibodies. They scheduled a date for the transplant and we drove down the night before to check in and stay the night. 6AM came early and I hadn’t eaten in forever but hey, I was gaining a healthy kidney. The nurse came in and said that she had to draw both our blood samples one last time before surgery. We had done it already like ten times over the last six months so wasn’t a big deal. The nurse said it was just to double check that I have no antibodies against him. I asked what were the chances that I would develop them overnight.. she said in the 25 years she had been there she had never seen it.
Well, you guessed it. I had developed antibodies against my dad overnight since they had taken our blood the night before and he could no longer donate. It meant I would reject his kidney and it simply was no longer an option. Not often had I seen my dad cry but that was one of them. I did too. My high school friends had decorated the house for me to come home too so my mom quickly sent them a text and they ran over and undecorated the house. This meant my siblings would have to be tested. I will never forget the night before my college freshman brother’s lab draw. We spent most of the evening pacing the kitchen and living room floor. He asked me probably 100 plus questions about what it would be like. Genuinely terrified of something I did once a month my whole life and weekly during certain spurts. Take this in your pocket to remind yourself that just because someone’s fear may be silly or insignificant to you does not make their problem any less real or scary to them. Always show comfort and understanding the way you want it when you feel scared. Life hurdles simply are not a competition. My sister tested from Florida where she lived with her husband, she was five years older than myself. I went with my brother and he survived his testing bravely. The results showed I had antibodies against my brother but not my sister. They were both a 6/6 in match but my brother’s would be rejected. That meant my sister was the lucky winner. She graciously donated her kidney to me and I still have it to this day at 29 years old. It is quite the trooper.
Now. Why you are really here. It started in the 8th grade. I had started my period but I did not know it. Over the course of six months I was in excruciating pain, constantly throwing up and my general health was spiraling downward. Finally after six months they saw my uterus was absolutely huge and swollen with six months of period blood. They life watched me due to the poisoning and toxic shock I was ill with. At Children’s Mercy I met the witch of a woman female gyno doctor. She believed that I had a thick hymen. They put me under anesthesia and when I woke my whole family was crying. I did not have a thick hymen, I had vaginal agenesis. We did not know this because naturally I wasn’t sexually active at that age and the outer appearance of my vagina looked completely normal. There were two surgeons in the US that either could or would be able to do my surgery.. maybe because my previous health issues. I am not sure. We traveled to the one and she turned me down. She had done the surgery once before on an 18 year old female who then committed suicide because the physical therapy required was too much. She would not do it on an eight grader, I wouldn’t be mature enough to handle it. Despite having to grow up much earlier in life from my other health issues. We went and saw doctor two.
He was one of the sweetest and most respectful doctors I had ever met. He agreed to do the surgery and advised that I not tell anyone what I was going through. He said in eighth grade your best friend today may not be tomorrow and that kids could make my life complete hell over something like this. I listened. I didn’t tell a soul. My vagina was almost entirely solid. He ordered dilators that I would have to use to stretch the skin up and open inside the vaginal canal. He asked if I was ready and said no one would be able to do it for me or make me do it. He said that if I ever wanted to eventually have my own children I would have to do this. I absolutely have always dreamed of being a mother and so I did it. Twenty minutes, twice daily for five years. They were so incredibly painful that there aren’t really any words. It was like putting a plug into an outlet with no holes because the dilators had to be bigger than what fit as to stretch the canal. Interesting fact. I had to buy an exercise bicycle because the angle of the seat would help me closely create the natural angle of a woman’s vagina. All a lot to think about secretly as an 8th grader. I did my “sticks”, I preferred to call them sticks, for two years until I was a sophomore. At that point I had stretched the vagina canal skin up and open enough that they could do the surgery. They opened it and lay the skin at the top of the vagina like a natural vaginal canal.
I sat up in bed after surgery and blood gushed out of me. It was insane. It sounded like when you turn your bathtub faucet on to fill the tub. So much blood. Black and smelling of death. The six months of period blood from two years prior could finally exit. I was so stoked to have my period like all my friends. I worked damn hard to be able to use those tampons. My mom and I went out and bought practically every brand of tampon and pad there was.. plum giddy. I had to continue to do the dilators for three years further so it wouldn’t close back down. Still twenty minutes, twice daily. The longest 40 minutes a day of those five years. I remember my junior year and there was this handsome fella I had my eye on. We started dating and I could tell hands were getting adventurous. I am not sure what normally goes through one’s mind then. I was thinking. Oh my goodness!!! I hope it works, I hope it works, I hope it works. Will it feel different? Will he notice? Will it hurt? Well I was his first finger to vagina experience so what the hell I was worried about.. I don’t really know. He wouldn’t have known if I was different. It did indeed work. Not on the orgasmic scale but it was a tunnel and fingers could enter and I was so fucking proud. Can you imagine if I had listened to the first surgeon and waited until 18 or older? That make out session would have turned incredibly awkward on a whole other level.
Fast forward to 2010.. aged 20.
I am dating guy that was mentioned above after we separated when he went off to college and I had a year of high school left. I just moved to be in the same town as him and signed to start cosmetology school in four weeks. We took an eight day vacation to Disney and universal. I was hurting in my abdomen and throwing up randomly. Maybe like twice a day. Not constantly but something felt off. At the end of each day I would throw up and my feet were SO incredibly swollen that clear liquid was leaking out my toe nail beds. I knew I had chronic pain from adhesions from many surgeries and the many meds I took made me nauseous many times than not. Plus I was so focused on making sure my main squeeze was having the vacation of his life. I was determined not to let me be what ruined it for us. We get home and I go to my routine kidney appointment. He pushes on my abdomen and tells me I am not going home. When I would lay flat my stomach was uneven. The right side was raised higher than the left. After surgery they ended up removing a nine pound tumor that had engulfed my ovary. I had no clue I was basically full term pregnant. I will admit Reddit. This one got me. Knocked me down into a dark place. They had removed my left ovary a few years prior due to being damaged from the six months of period blood that had been sitting in my uterus and Fallopian tubes. This meant that I had done those horrible sticks for five years, hand built my own vagina, all so I could have my own kids one day. After a routine appt and a four hour surgery it was just gone. Ended up being ovarian cancer and am all clear and fine today.
Current life: I have been with said man above for 10 years, married since 2012. We are foster parents to an amazing girl we got at three weeks old. We were wrote and asked to adopt this little girl by an entire extended family. From May 2018 until March 2019 we thought we were adopting this little girl. A bio relative has changed their mind after foster daughter living with us 18 months. Now we find ourselves in and out of court battling for her. Won’t give any details of the case or share pictures of kiddo. Only time will tell what path we go forward on. One thing is for certain. My husband is a lucky man, after all, he has a one of a kind, hand made vagina. 😉🤷🏼♀️😜
Abdominal Scars and tumor picture: RIP my bellybutton. Viewer Discretion AMA!
TL;DR Had two kidney transplants, vaginal agenesis and ovarian cancer.
Edit** I did tell my first person of the vaginal agenesis when I went to college. Not sure how to explain disappearing everyday twenty minutes, twice a day to a roommate. Just seemed easier to tell the truth and she was a person I trusted dearly. Been a best friend since the third grade. Started with telling her.
Edit 2) During the two years before they opened the canal, what happened with the blood and my period? Duh. Great question. The doctors believed that if I did depo provera, a birth control shot, every month that I would no longer have a period. The shot was normally given every three months. I went every month because it was critical that I wasn’t ovulating. The doctors also believed that while stopping the blood from continuing and with the shot would allow the blood to re-absorb back into my body basically. This didn’t work. That was discovered after the sophomore surgery when I sat up and the blood that had been there two years came out. My health suffered greatly and my coloring was sickly during those two years. I have no idea how I lived with it in my uterus chillin that long.
My Proof and my imgur! This link below Abdominal Scars and tumor picture: RIP my bellybutton. Viewer Discretion AMA!
Edit 3**** today is August 6th and we had court today regarding our foster daughter. I decided to make an instagram account to keep everyone updated! If you wish to follow the journey with us. My Instagram is https://www.instagram.com/fosteredwithlovee/?hl=en