First of all, if you don’t know what endometriosis is, please click the following link to educate yourself before continuing: https://en.wikipedia.org/wiki/Endometriosis
The decision to write my story down came from the time I spent reading other people’s stories when I was first diagnosed. It was like my own little support group. Hopefully this will encourage other people to write about their experiences as well. Trust me, it’s helpful.
I can track the beginning of my endometriosis symptoms back to a day when I was about 12-years-old in junior high school. I started having periods about six months earlier. Then, one day when my cycle started, it was heavy, really heavy. I was going through one tampon about every hour and a half. I did the math and realized I didn’t have enough tampons to last me through the day.
I was too embarrassed to tell the school administration the real reason I needed to go home, so I said I was sick. My parents were divorced and I was with my dad that week, so they called my dad and told him to come pick me up. When he showed up I told him the truth. I wasn’t sure how he would take it, being, you know, a dude. He gave me a bit of a sideways look, and since I wasn’t the type of kid that stayed home from school for no reason, I think he just kind of let it go. Also my dad has never been the type of guy to willingly learn more than he has to about “lady parts.” I spent the rest of the day at home, burning through tampons like they were going out of style, and enduring some really bad cramps. It was the first time I remember thinking to myself, this period stuff sure is a raw deal.
I had a couple of normal periods after that. Then, a few months later, it happened again. All of a sudden, I started having cramps like I had never felt before. Cramps like 90% of all the other women in the world had never felt before. Of course, I didn’t know this at the time, because nobody can explain to you what cramps are supposed to feel like. You hear that they hurt, and so when they hurt, you think, “Well, this is probably normal, right?” I found myself in the girls’ room, so overcome with pain that I was nauseous and throwing up. This was the point when I decided to go to the administrative office and ask for some Advil for my ‘headache,’ because the thought of calling my parents again to leave school because of my period wasn’t very appealing.
I had already done this once to my father, who didn’t make a big deal about it. But my mother is a bit of a feminist, and, well, these kinds of things weren’t supposed to get in the way of a woman’s life. In my 12-year-old mind, millions of women were walking around every day having periods, appearing as if nothing was wrong. Even if they’re in the most excruciating pain they’ve ever felt in their entire lives. The administration at the school told me that they couldn’t give me any Advil. They couldn’t give me anything at all. I was just supposed to sit there and slowly die. So I broke down, and I told them to call my mother to have her come pick me up. “This headache is just too big.”
For anyone doubting the seriousness of the pain I was in, I would like to present you with this fact: I have had appendicitis. The pain I felt when my appendix waged war on my body and attempted to murder me from the inside was NOTHING compared to the pain I feel during a bad episode of endometriosis period.
Anyway, back to Junior High. This was back in the days when there were no cell phones (yes, I’m old), there were no pagers, there wasn’t even call waiting. My mom happened to be on the phone with her sister at the time, so we got a BUSY SIGNAL. Although they don’t speak to each other now, my mom and her sister used to talk on the phone for hours. So there I was, sitting in the administration office, just waiting. They would call back every five or 10 minutes to see if they had finished their call yet. Back then, that was all you could do. It probably would have been faster to send a carrier pigeon.
The lady behind the desk felt really bad for me. I could tell that if she actually had some Advil, she probably would’ve slipped me one. I’m not sure if she knew exactly what was going on with me, but she knew it was more than a bad headache. I had gone back to the ladies’ room a couple more times to throw up from the nauseating pain, but there wasn’t really anything left to throw up. I must have looked like shit because someone in that office finally made a decision. They would call the operator and have them break into my Mom’s phone call. I wonder how many times a phone call had to be broken into because of somebody’s period? It was so embarrassing.
I began to track my period. I would start to pretend a few days early that I wasn’t feeling well. That way, I could stay home from school ‘sick’ on the first day of my period, when it was the worst. I’d take painkillers, then try to keep them down if the nauseating pain showed up early. My parents were at work when this happened, so I didn’t have to go through the embarrassment of them seeing me in the bathroom, trying not to throw up. They did know that I had unusually heavy and painful periods, although I didn’t let them know quite the extent of it all. Because honestly, I didn’t know the extent myself. It was bad, sure, but wasn’t everyone else my age going through the same thing? With no comparison, I would somehow rationalize the pain. I learned a technique of focusing on my breathing and nothing else, eventually creating a slight out-of-body experience where the pain wasn’t so intense. I didn’t know it at the time, but I taught myself how to meditate my way through the most painful episodes.
At one of my annual lady exams, my mom and I told the gynecologist about these extremely painful periods. She basically said that if taking painkillers worked, which it sort of did, I should just keep doing that. There was zero interest or effort put into figuring out if there was a larger problem. I was told that some people just get worse cramps than others, and unfortunately, I was one of those people. So I learned how to recognize the early signs of my period and just started taking painkillers before it even showed up. That was what worked best, so that’s what I did.
There were always a few months when I didn’t catch the signs, or when it showed up a bit unexpectedly. When that happened, I was done for. I would be curled up on the nearest horizontal surface in the fetal position. I’d break out in a cold sweat from head to toe. Until a nice heavy dose of painkillers kicked in, there was absolutely nothing, nothing in the entire world, that would make it feel better. Imagine somebody put a vice on your abdomen and started squeezing and squeezing and squeezing.
Eventually, my doctor decided to put me on the birth control pill because my periods were heavy, and I was about to go through the usual teenage hormonal drama that so many people do. We were told the birth control pill was a good option. It did help a little. My period didn’t last as many days, which was fantastic, but it didn’t loosen that vice around my abdomen. At least now I knew exactly when my period was going to show up, and I could catch the pain before it started. Once a month, Alieve became my best friend. I went on like this for years into my early 20s.
When I was in college, I came across a girl who had endometriosis. Diagnosed endometriosis. For her, it was caught early because her mother had it. The doctors just assumed she would have it too because all the research says it’s hereditary. I remember asking her certain questions about it because I had always suspected something larger was wrong with me. She ran down the list of symptoms, all of which I had. When she had her period, she would just stay home from school entirely. I thought, well, that sounds worse, because I’ve found a way to get on with my life during my period, as uncomfortable as it was.
Through my entire life, I’ve been flagged for cervical cancer. As I found out later, it’s the most common misdiagnosis for endometriosis. In 2006, they went so far as to give me a narrow cone procedure, which was not a walk in the park. The results: they found “nothing even anywhere close to cancer.” The doctor told me I must have healed myself like superwoman. Thanks, Doc. It took six years of going to the same gynecologist, one who actually listens to patients, to get a diagnosis. I was 31. That’s how long it took for this to get figured out. He suspected endometriosis, due to my long history of extreme pain with my periods and the discovery of an adhesion during multiple pelvic exams. An adhesion is an area where the scar tissue has attached to other tissue–in this case, my vaginal wall. The area is tender when pressure is applied, which is why some people experience pain during sex. He handed me a pamphlet on endometriosis and told me to call him when I was ready to not be in pain anymore. I took the pamphlet home and called the very next day. “Schedule the surgery. I’ve been in pain for too long.”
Fuck you, endometriosis.
The surgery was successful. They removed tons of scar tissue. He told me afterward that I had the worst case of endometriosis he’d ever seen in his life.
Life post-surgery is good. I’m amazed at what a regular period feels like. I have learned that I have an unusually high pain tolerance as a result of my undiagnosed years. It comes in handy when I hurt myself.
I was warned that there’s a 50% chance the pain will return. Endometriosis surgery is done laparoscopically. They remove the scar tissue and laser off the cells that are causing lesions. Because society would prefer to spend 2 billion dollars annually on hair transplants, compared to the measly 11 million spent on endometriosis research by The National Institutes of Health, there are still only loose theories on what causes the disease. Thus, the surgery treats symptoms only, not the disease itself. They can’t even tell you why it recurs only 50% of the time. I have also discovered that doctors hate it when you do your own research online and come up with theories to talk over with them. As good as my doctor is at listening, when I come in with another “I was looking around on the internet…” story, he lets me finish, and then regurgitates the old textbook theories to me again.
There’s a lot more to discuss regarding endometriosis–infertility, its effects on sexual health, digestive issues, taboos about discussing women’s health, late diagnosis–the list goes on. Below are a few articles related to those issues, as well as a few others that I found extremely helpful in the early days of being officially diagnosed with endometriosis.
Submitted on 02/18/2017
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is a blessing. I was diagnosed 20 years ago after years of pain and suffering after having three surgeries to remove the adhesions. It’s really sad with all the technology these days that women and girls need to suffer. Here’s to more pain free days then painful days
You are extremely brave to talk about something so emotionally sensitive like this. When I was twenty I had an infection that went untreated for too long. I only became aware of a problem when sex became painful followed by a small bloody, smelly discharge. By the time I was able to get health insurance and wait the SIX MONTHS to see the gyno, the antibiotics cleared the infection but the scar tissue remained. I underwent the lap surgery as well to remove thwe scar tissue. Unfortunately, the untreateds infection had left my tubes unable to transport my eggs to my uterus…..leaving me unable to ever get pregnant. To any of you young women out there with problems that you either don’t understand, or worse, are too humiliated to deal with…TALK TO SOMEONE! Be it some woman on the street or in the next town who is a stranger to you! Believe it or not, talking to a stranger is often easier. And I PROMISE YOU this, whomever ylou talk to will NOT make you regret it. That woman WILL help
I suffered from adenomyosis that is very similar to endo. Extremely painful, hemorrhagic periods that would bring me to my knees. Plus I had a double uterus so I shed four walls instead of two. I had a full hysterectomy at age 45 and have never regretted it. I should have had surgery much earlier.
I completely understand what you went through and glad to hear your problem has been resolved.
I just had a total hysterectomy at age 31!!!! I am done with the pain and endometriosis can suck it!! Thank you ladies for making me feel like others know what I have gone through with the pain and the horrible life we live trying to hide the symptoms from others in fear of embarrassment! I will say that having a hysterectomy was the best decision of my life and I am now a completely different person!! There is a light at the end of the tunnel!!!