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.
HA!
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.
Come to Our Nest 
A lot of what you described happens to me! I have always been very irregular (it’s not uncommon for me to skip 2-3 months, heck I’ve gone 6 months without a period. I have really bad cramps, almost like back labor for the first 2 days of my period. My periods have gotten so heavy that I have to use super tampons plus an overnight pantyliner for the first 2 days of my period. I hate it so much! I’ve always wondered if I had PCOS or something but all the OB/GYNs I have gone to say it’s “normal”. Sure doesn’t feel normal!
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Girl, it’s NOT normal. Find a new GYN and schedule a laparoscopy NOW.
So sorry to hear you’ve been suffering with this for so many years.I’ve heard the term endometriosis, but never really knew what it was. Thanks for explaining and good luck with the clinical trial.
I have almost everything you describe…..My periods are so bad that I have ended up hospitalized on pain killers and needing fluids. The pain is soo intense sometimes I can’t even get out of bed. Plus, it’s like Niagara Falls. I have been told several times that I am a complainer or just to take some Tylenol, drink plenty of water and vitamins. I don’t know much about endometriosis but think I will be mentioning this to my lady doctor.
Amanda Seibert recently posted..25 Halloween Costumes for Wheelchairs
DEFINITELY bring it up to your lady parts doctor, and do it SOON. You don’t have to live like that!
Wow. I have no words other than I am sorry you have to go through this. How awful. I give you mad props for trying the clinical trial. I 100% support your decision and believe your heart is in the right place. Hugs to you! (And lots of prayers for your little girl! Maybe a miracle will happen and it will skip her!)
Leila recently posted..@NoiseGirls Fall Foodie Festival with Country Gourmet Home #ngfoodie
A really good friend of mine and my mom both have dealt with this. Such a terrible ordeal. hugs
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June of 2011 I had a hysterectomy. BEST. DECISION. EVER. I still have one little ovary kickin ( for now) so I dont need HRT or anything, but I can not EXPLAIN how much better I feel after 20 years of misery every month. Good luck with the trial – I hope it all goes well. For me I am WAY too “instant gratification” and as soon as I found a doc willing to take it all OUT, I was scheduled for surgery 6 days later LOL
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WOOHOO for a happy ovary! I just went to a new OB/GYN yesterday and he said we could talk about taking my uterus out but he wanted to try a few other things first. I am starting a new birth control in a week or two. We’ll see how it goes because all other BC’s have given me migraines. YUCK. If that happens, we might do an IUD but I would rather just have the uterus taken out, you know? I wish I had read this comment BEFORE Brandcation so we could have talked about it! *pout*
[Love it when I accidentally delete what I've written!]. What you are describing is somewhat like what I’ve experienced. My cramps, especially on the first day, are more painful than I can explain. A lot of times, especially before BC which offered minor relief, I’d also have the cold sweats. One of the things that scared me about trying to get pregnant was having to go for a few months without my BC which barely (and I mean barely) made much of a difference. My mom had endo and had to have surgery so she could become pregnant so my whole life I’ve always assumed that was in my future–it still might be but not now. She’s also promised me and my sister that our horrible cramps will be worth it because labor won’t be so bad–that remains to be seen. I do not have irregular cycles though. Seriously–I am textbook as far as start to start–28 days almost to the minute. When I do eventually get my period back I’ll have to keep this in mind because I am still relatively young too and can’t imagine living a few more decades with this!
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The Violet Study sounds great. I hope some good comes of it. I’m here today because I’m researching endometriosis online and it breaks my heart to hear all the sad stories. Thought I’d pass on this doctor I found in my journey. Read the testimonials. Apparently, he’s making a difference. https://www.vitalhealth.com/the-vital-health-experience/patient-testimonials.php
My best to you! Please get well.
How the clinical study going? I too suffer from endo and it’s very painful. I just signed up for a clinical study too.
Oh no!!! That Violet Petal Study is a scam!!!! It’s just another form of Lupron. Instead of injection it’s in pill form. Lupron does nothing to treat Endometriosis. It can mask the symptoms temporarily in some women. But not all. And only temporarily. And then it leaves you with damaging permanent side-effects. Lupron is dangerous and it should be pulled off the market. The only way to truly treat Endometriosis is with excision done by a truly skilled doctor. Several claim to be Endometriosis Experts. But there are only a few. Any doctor that claims to be able to treat this disease with hormones and/or surgery are just lacking confidence and skill or are trying to get kickbacks from big pharmaceutical companies. It’s your body and you have to live in it. Not them. So be careful who you are trusting your body to. We are born with this disease and it becomes active with the onset of puberty. It most certainly is NOT caused by menstrual fluid spilling out into the abdomen and implanting. Be careful of ignorant doctors. There are a few skilled excellent doctors that can locate all of the disease and remove it with minimally invasive surgery. And that is the best treatment. Hysterectomy is certainly NOT the answer. Endometriosis makes it’s own estrogen. Removing the ovaries or taking hormones does nothing. And removing the uterus and ovaries will not fix a disease that is growing somewhere else. It can grow on your hear, lungs, intestines, appendix, colon, bladder, etc. Removing the uterus and ovaries would be like cutting off your foot to cure brain cancer. It doesn’t make logical sense. Don’t fill your bodies with dangerous man-made hormones. And don’t remove healthy organs. Remove the disease. Simple. And find a doctor that is truly skilled, not just some self-proclaimed Endo Specialist. Any doctor can claim to be an Endo Spec. But not removing ALL of the disease will leave you still suffering. Find a doctor that is capable of locating all of the disease and removing it. Cutting it out. Burning it does not help. It will grow back. It must be removed. And don’t het your hopes up only to be let down or permanently injured by the Lupron in the Violet Petal Study scam. It’s a scam. 18 million women are suffering with this disease. We were born with it. And most of us have to wait 7 to 12 years before we even get a diagnosis. That’s a disgrace. We deserve better care. More doctors need to become more educated about this disease and better skilled in finding it all and removing it all. We can have a normal quality of life. Better care can be provided to us. More needs to be done to get the medical community to wake up and start taking Endometriosis seriously. It’s not just an infertility issue. It’s a disease that gets worse over time. It not only causes menstrual pain. When it gets worse, it causes daily pain and suffering. Daily digestive struggles. Vomiting, dizziness, nausea. Loss of sleep. Fatigue. Loss of sexual function and desire. And it CAN become FATAL. It can cause fatal blockages and/or infections in or on various organs such as the bowels, bladder, heart, lungs, etc. More CAN be done today. Ignorance and greed in the medical community is preventing us from having access to better care. Insurance companies don’t think Endometriosis is so bad. Doctors put their relationship with pharmaceutical companies ahead of the relationship they should have with their patients. They took an oath to do no harm. By failing to provide us with proper care they are causing harm. Endometriosis is NOT bad periods and bad cramps. It’s a serious disease that can develop into daily suffering and potentially fatal. We put our trust in our doctors to know what is best for us. They need to put ignorance and greed aside and provide us with the care we need. Thorough excisions. Surgically removing all of the disease. More can be done. Speak up. This disease deserves the same attention that things like Breast Cancer Awareness receive. This disease is nothing to be ashamed of. This disease deserves a loud voice. From voices comes action. People who don’t understand how devastating this disease really is won’t speak for us. We must speak for ourselves. WE are Endometriosis Awareness. WE are the best chance we have at getting the medical community to change. We owe it to ourselves, our daughters, and our grand-daughters. <3
*180 million women are suffering from this. Not 18 million. 180 million women.
How’s it going? I’ve been doing the VP study since October 9th. I’ve been on the medication for a little over 2 months now.