I did a crazy thing tonight. I signed up for a clinical trial for women with endometriosis.
I know many people would never subject their bodies to the possibility of test drugs to get a problem solved, but if people didn’t volunteer to do it, how would clinical trials exist?
It is going to require that I stop nursing Grady but he is almost 19 months old and I’ve grown weary of nursing him. He stands on his head, pinches and twists the unused milk ducts, and kicks me in the chin. He LOVES nursing, I’m just done being kicked in the nose.
But more than that, I don’t want to miss out on finding a drug that will help women manage their endometriosis.
Here’s my story:
I started my period when I was in 6th grade, one embarrassing weekend while we were camping with my mom’s friend and her family. They had two boys, one was in the 7th grade at the other middle school in our town, and the other was a couple years younger. The naive Summer thought that they certainly hadn’t seen or heard anything, but boys aren’t stupid. My crying may have given it away. Or maybe it was the fact that I wouldn’t and couldn’t do anything for the rest of the weekend. I wasn’t in any pain, I was just…uncomfortable with the pillow between my legs.
That period lasted for 2 weeks, like many first time periods do. After that, they were about 9 days long pretty consistently until I hit 8th grade, where they decreased to 7 days. They were never, ever regular. A 28 day cycle? HA! Not in my undies!
One day, when I was 15 and a sophomore in high school, I was hit with the cramps. I had spent 4 years without them and thought I had escaped. OK, I lie. I thought women were WEAK and that I was strong like bull and didn’t feel my cramps.
The first day I felt my cramps, I thought I was going to die.
I had always been known for my high tolerance for pain so my mom knew something was seriously wrong.
Luckily, or unluckily for her, really; she had this horrible thing called endometriosis and figured that’s what was going on with me.
I was down for the count for about 2 days each month. I sucked it up with triple doses of Advil to go to school or dance team practice, but as soon as I got home, I grabbed a bowling ball, laid down on the floor with my butt to the wall, and put my legs up against the wall, placing the bowling ball on my pelvis. The pressure felt SO. GOOD.
I cried. I slept. I took lots of Aleve. I bled through Super sized tampons in less than an hour.
I told the lady parts doctor.
I was told it was dysmenorrhea, which is really just another word for a woman who can’t handle her menstrual cramps.
I was told I was only losing about 2 Tablespoons of blood each month.
Then WHAT was this torrent of blood and palm-sized clots coming out of me?!
They told me I was too young for endometriosis.
They gave me prescription pain killers each month to deal with the pain.
While it was pretty sweet to have a prescription for low-dose pain killers, it really sucked to have to deal with the immense bloating, and the continued pain. The pain killers didn’t actually kill the pain, I just didn’t care as much.
I had bowel issues. I would have diarrhea one day and severe constipation a few days later. It was always painful to poop, but the pain was in my pelvis and I couldn’t explain to anyone what I was feeling because I really just had dysmenorrhea and needed to suck it up, right?
One doctor went to so far as to tell me that most women had cramps and that I just had to get through it.
Fast forward 5 years: I’m 20 and 9 months pregnant. It’s August 18, 2001. At 7pm, I lose an enormous mucous plug. Due to my incessant reading, I know that it doesn’t really mean much of anything.
Then suddenly at 9pm, I have a cramp. It wasn’t so bad. It kind of felt like gas.
At 9:10pm, I had another cramp. Not so bad.
By 10pm, I’m in full blown labor and it doesn’t feel any worse than my regular, monthly “hey you can deal with it because everyone else does” menstrual cramps. I start puking at 10:30pm, signifying a my transition into the “Transition Phase” of labor.
I’m exhausted and terrified of squeezing a baby of of my nether regions but these cramps? I can handle these cramps. I’m used to this!
Styles is born at 6 minutes after midnight on the 19th – 3 hours and 6 minutes after I felt my first contraction. And at their worst, my labor pains were only a fine hair worse than what I dealt with every month for two whole days.
I nursed Styles for 9 months and when my cycle returned it seemed better, for about 4 months. I suddenly began having those debilitating cramps again, only they were worse because the amount of blood that accompanied them was even more severe and heavy than before. Sex hurt, as it always had, but I didn’t realize that painful intercourse was a symptom of endometriosis.
I was dismissed by 3 more doctors as having “dysmenorrhea”.
I knew, because my mom had surgically diagnosed endometriosis, that I also had it. Getting a doctor to agree with me was impossible.
Fast Forward again t0 April 2006. I get my period for the month and wind up weak and throwing up on my bathroom floor. I am in so much pain that I feel like I’m going to lose my intestines through my vagina and I’m becoming weaker by the minute.
Someone took me to the hospital that night, where they doped me up on morphine and began hydrating me while watching my fluid levels in the event I might need a blood transfusion. Once they got things calmed down (Don’t even ask me how, I was on morphine, remember?), a seriously hot doctor came in and told me that he was 100% certain that I had endometriosis and that I needed to see a specialist STAT.
I wanted to kiss him. I might have said as much in my morphine-induced high.
I saw the most wonderful doctor on the face of the planet a few short weeks later, and he confirmed that he thought I probably did have endometriosis. When I told him the excuses and rebuttals that other doctors had given me, he rolled his eyes. He had just operated on, and removed endometriosis from a 16 year old girl, so that whole “you’re too young” thing was completely out the door and down the hallway.
He scheduled my surgery for September, and booked an OR for 90 minutes for a short laparoscopic surgery. He said that if he found anything, that he would remove it.
Little did he know that once he got in there, he would find scar tissue EVERYWHERE inside my pelvic cavity. It had attached itself to my colon, which was the reason I had such touchy bowels, why it was so painful to poop, and likely the source of my immense pain.
My fallopian tubes were 100% and 75% blocked and tangled. I had scar tissue all over the inside walls of my body, and all over my uterus. I was in surgery for over 3 hours so that he could remove and untangle everything that he possibly could.
When I went for my followup appointment a few days later, he explained to me the extent of the damage that had been caused by my long-neglected endometriosis. He had pictures and everything. It was the most amazing thing I had ever seen. He felt certain that he had removed all of the pain-causing endometriosis and that I should become more regular, should feel less pain, and should experience much lighter periods.
Within 3 or 4 months, I was virtually pain free and my periods were much lighter. They were still unpredictable, but a later diagnosis of PCOS would eventually require a dietary change that sparked a regular schedule to start.
For two years I went pain free, and in November of 2008 I started to feel pain when I went pee during my period. SO much pain and pulling that I had to stop and start my stream several times to empty my bladder, lest I feel like my bladder was going to explode through my belly.
I went back to Dr. Fox and he did an ultrasound to see if I had a tumor or something else going on in there. All he saw were the pretty pearl necklaces that my ovaries sport due to PCOS. He told me that it might be the endometriosis coming back and attaching itself to strange places like my bladder but, as I knew, it required surgery for a definitive diagnosis. I told him we would wait a few months to see how things went before scheduling another surgery.
I ended up getting pregnant with Madilyn THAT. NIGHT. (that’s a story for another day). I nursed her until my second trimester of pregnancy with Grady, and didn’t start having a period again until February of this year. I went over 3 glorious years without a cycle.
But now that I’m having it again, I’m dealing with that searing pain when I pee. Sex is becoming painful again. My period is immensely heavy. I soaked a Super-Plus tampon in about 75 minutes last week. It lasted an entire EIGHT DAYS. To pee during my period, is to want to die. I pee because I have to, but I would rather be giving birth.
Because it is suspected that endometriosis is hereditary, it is likely that Madilyn will have the same problem. If I can enter and endure a clinical trial now, that might help her in the future, I’ll do whatever I have to do.
And now that I know that labor is equally as painful as, but much shorter than my menstrual cramps, I’ll do anything to save Madilyn from that continuous monthly pain.
Plus, I’m only 31. I still have a lot of menstruation in my future. If I can have those 2 days back every month, I’ll be a happy girl.
If you are a woman who experiences immense pain, abnormally heavy periods, or irregular cycles, please feel free to shoot me an email me and we can compare stories. Or better yet, call your OB/GYN NOW and tell them exactly what you are going through. If they are a good doctor, they won’t judge your “intolerance” of pain, and will do everything necessary to get to the bottom of your issue.
If I end up being selected to participate in the Violet Petal Study, I’ll keep you abreast of how things are going to the best of my ability.