Hey, it’s National Endometriosis Awareness Month, and I wanted to share my own story of endo in the hopes that it helps others understand what someone might be going through, or have another reason to advocate for themselves when things get really hard. Now, there is going to be talk of periods and such, so be forewarned. Also, it’s long, because I wanted to explain just how much someone goes through to get diagnosed – and mine was faster than a lot of people’s.
What Is Endometriosis?
For those who don’t know, endometriosis is a condition where the tissue that lines your uterus (endometrium) also grows outside of your uterus. That’s the basic definition. What this really means is, this tissue, the tissue provides the blood and clots for your period every month, is also growing in your abdomen, where it continues to shed like a period, but now has no way out of your body. So you can develop cysts, scar tissue, and adhesions (to name a few), and these things, of course, cause pain.
So my story started when I was ten. We were living in Boston at the time, and I got my first period (young, I know). I don’t think it’s true for all endo patients, but I had issues from day one, basically. The first year, my periods were heavy and painful – I would often go through (and I mean THROUGH) one pad every two hours or so – and they were irregular, often coming sooner than the standard 28 day cycle. My family took me to the family doctor, who told us that the first year of the period was often irregular and could be heavy, and it would all balance out. That’s fine, we went home with the intention of just waiting for things to improve.
A few months later, we were living in Georgia and the situation had changed, but not for the better. At that point, my period was lasting about five days, heavy throughout, would come roughly every 3 weeks (but still not on any sort of schedule), and the pain was pretty severe, especially for a ten year old who’d never even had a broken bone. I was missing school because I didn’t want to straighten my body out due to the cramps, so my mom took me to my first gynecologist. While I was still in that year timeframe, she didn’t think this was actually normal. The gynecologist listened to what we were saying, then said periods are often irregular for the first year, I just wasn’t used to cramps, and there was nothing to be done. So we went home with the intention of waiting for things to improve.
A couple of months after we’d hit the year mark, I was still in significant pain, with heavy, irregular periods, so we went to a new gynecologist (my aunt had found one she liked, at that point) and explained the situation. This time, we were told periods could be irregular for a few years after starting, and I was young and it was probably nothing. And we were sent home.
We didn’t like this answer at this point, but they’re doctors, and they know best, right? So we tried to wait it out. But at this point, I’d had my period for about 18 months, and things were only getting worse. So we intermittently went to different doctors, who blew us off with various degrees of not caring. Finally, when I was twelve, one gyno offered oral birth control, saying it sometimes can help regulate. We jumped at the thread of hope, and the next day, I took my first Pill.
So anyone who’s been on the pill knows this, but the concept is that it inhibits natural hormones so that you don’t get pregnant, and in doing so, can prevent menstruation until the week of placebos comes. The first month of being on the Pill, generally nothing really changes, because it’s not in your body enough. So when nothing changed the first month, we didn’t care, since the second month was going to be my saving grace.
Month two comes and I have…my period. Not during placebo week, and it’s not any lighter or anything, it’s just like nothing has changed. Same for month three and month four. So we return to the gyno, and she prescribes a different pill. Same thing. We return, she prescribes, same thing. It was a lovely little cycle. But the doctor was not at all interested in trying anything other than the pill, and we didn’t know enough about what was going on to push.
When I was 13, my mother caught me trying to put in my first tampon. I was sick of bleeding through and having to go to the bathroom so often (like between every class, at this point, so hourly, or more) and I thought maybe tampons would be better for leakage. Within a few days, it was clear that the tampon was simply not enough, so every day I had my period, I would wear a tampon and an overnight pad. If I changed them every hour, I could generally stop staining my pants. Sometimes I’d still bleed through, but at least it was less often.
This gave us a new concept of exactly how much blood I was shedding, so my mother and my aunt took me to a new gyno who they thought might listen. My first male gyno – that was fun. But I was willing to work with anyone who could help. I had compartmentalized the pain enough that I could get through school most of the time, but afterwards I would just curl up on the couch. And the crying, oh, the crying from pain. So if this guy can help, so be it. He offered…birth control. Granted, it was supposedly a super strong hormonal version, but I was jaded by this point.
So we go home, and I start the birth control, and sure enough, we did see a change. I got my period. In month two. For the THIRTY days! I lost so much blood I was anemic, ghost white pale. I was in so much pain, I could barely eat. I missed a lot of school. But this Pill is super strong, so we decided to give it one more month. My period ended…for a week. Then it came right back. For multiple weeks. Nope, nope, nope. My mother pulled me off of it, and when the doctor said we should give it more time, we noped out of his office too.
Something Is Really Wrong
So at this point, I’m officially a teenager, and I’ve had heavy bleeding and extreme pain for three years. We moved again when I was 14, and in our new town, found new doctors, but we didn’t find new answers. Every month, I was seeing new gynos. Our family doctor, after some serious pushing, finally agreed to run bloodwork for a bleeding disorder (yes, three years and no one had checked for that), but it came back negative. I was put on muscle relaxants and pain killers (hello, Vicodan), and my school knew to just send me home if I showed up in the office with cramps.
I was still on birth control, I was still on pain pills. I was still anemic, I was still in pain. So my mom and aunt took me to the Catholic hospital that was supposed to be the best in town (I was raised Catholic). And they had new ideas – few had the nerve to tell me it would go away at this point – probably because I was starting to yell. They told me that if I was older, they could possibly scrape my uterus. Ok, I’m on board. No, they would only do it if I was older because it could reduce fertility. So I tried to simplify the situation. I never wanted to have biological kids. I wasn’t sure I wanted kids at all, I knew I didn’t want babies, and if I did want kids, I wanted to adopt. Pull it out. Pull all my parts out. Uterus, ovaries, just remove them because if they weren’t in me, they couldn’t cause problems. “No, no, we can’t do that. What if your husband wants kids? And it’s just a period.” I still harbor resentment over the fact that a hypothetical person held more rights to my body than I did. We went home (and I refused to ever go to a Catholic hospital again).
This pattern continued until I was seventeen. The pain had become more pinpointed on my right side, so there were a few emergency room visits for potential appendicitis, but nothing showed up on scans, and we would get sent home. I saw gastroenterologists on the off chance that the issue was really in my stomach. I saw general doctors. I had x-rays and CT scans. More bloodwork. More birth control pills.
Then when I was seventeen, a doctor finally agreed to do a D&C. It was the first time anyone had been willing to look that far. Basically, in a D&C, the doctor inserts tools through the vagina and cervix and scrapes your uterus walls. Mine was out-patient, and I was home just a few hours after it. The results came back – no endometrial cancer, no sign of anything abnormal. “What’s the next step? What else can we try?” Nothing.
Giving Up Hope
Do you know how depressing it is, to have chronic pain for half your life, to know you are going to have to live another sixty years with this pain, because no one believes you or is willing to help you? So I stopped. I stopped fighting, and I stopped pushing. I learned to mask the pain, to always keep tampons and pads and clean underwear with me. I learned exactly how bad the cramps could be before I passed out so that I knew when I absolutely had to take my pain pills.
When I was twenty, I was living with friends. I was working for a temp agency, so I had a bit more control over my work schedule, so when a bad bout of menstruation came, I just didn’t accept any positions. I was bleeding, I was taking my pain pills daily, I couldn’t get myself to a job across town safely. The cramps got worse, I curled up on the couch. My friend told me to go to the doctor, but I refused because, hey, they aren’t going to do anything – and I didn’t have health insurance. But after a few more days, my friend came home and found me crawling across the apartment because I literally could not stand up. As she spoke to me, I passed out. When I came to, she had my mother on the phone ordering me to go to the hospital. I continued to resist, so she solved the problem the simplest way she could think of. She had her boyfriend carry me to the car – I was too weak to fight back.
We went to the emergency room, the doctor took one look at me. “You have PID – Pelvic Inflammatory Disorder.” PID is a disease, he explained, generally caused by STDs, that shows no symptoms until it’s too late. I had a few days left. “I’ve never had an STD,” I said, trying to understand that my cramps weren’t just annoying now, but were going to kill me. He said I must have an STD, and there was nothing he could do. He gave me a prescription for painkillers, and sent me home. My friend called my mother because a dying 20 year old wants her mother. My mom was living 6 hours away and reached me in 4. The next day, she took me home with her so I could die surrounded by family. I didn’t know it at the time, but she was already trying to get me into a good doctor to be looked at again, but it became a moot point. Two days after the hospital visit, I spiked a high fever, was delirious, and my skin turned gray so she rushed me to Urgent Care.
Ten years. Ten years, and that Urgent Care doctor was the first good doctor I’d seen. She took one look at me lying on the table, and said “Kidney Infection.” I explained as much as I could that it was PID, and she just shook her head. “Kidney infection.” She pressed a specific point on my abdomen and I about hit the ceiling. Kidney infection, indeed. The ER doc had one thing right – I was near death. She didn’t want to admit me if she didn’t have to because of the no insurance thing, but I needed a lot of help and it was still iffy whether or not I’d survive. For about two weeks, I had to go to urgent care every day for IV meds and fluids, then for six more weeks I was on high doses of Levaquin with weekly doctor appointments. At the end of it all, I have permanent damage to one kidney, but I’m alive. She asked me how it had gotten that bad, why I hadn’t gone to the doctor when the pain started. “I thought it was just my normal cramps.”
When I was 22, I showed up back at the emergency room – this time with health insurance. The pain was bad again, localized on my right side, and I had learned that my cramps could hide life-threatening conditions, so I was overly cautious. They never ran any tests, they just told me it wasn’t appendicitis, and sent me home.
The Light At The End Of The Tunnel
About a month later, my GP, in a regular exam, noticed I hadn’t seen a gyno for about two years. She insisted on doing an exam, and since I had a history of chronic pain, and the ultrasound tech was there that day, she pushed me to get an ultrasound. It was the first time a doctor had recommended it. I lay on the table, fairly disinterested because nothing ever shows up in tests, when the tech asks me if I’d been having pain. I told her no new pain, nothing new, nothing different. “That’s odd,” she said as she tilted the screen to me. “You have a cyst on your left ovary the size of a small orange. I can’t imagine how that isn’t painful.” I was shocked – there was actually something there? There was actually physical proof that I wasn’t crazy and whiny? My doctor told me I needed a specialist and referred me to the local hospital’s women’s health department. They looked, but the cyst had gone away. The tech must have misread the ultrasound, they told me. Nothing’s wrong with you.
My GP Dr. Mac, though, was a determined woman. She insisted I come in every two weeks for an ultrasound. Sure enough, a month later, another cyst showed up, smaller this time, but there. Two weeks later, it was gone. Two weeks after that, another one. “These cysts are probably connected to your pain,” she told me. “You definitely need to see a specialist.” I had found out since the first one, that my boss’s wife had cysts too, so I asked for a referral to her doctor who was supposed to be amazing.
I wish I could put sparkling lights around her name right there. Maybe a ticker tape parade. I called her office to set up an appointment. “The doctor is very busy, and she only takes on the hardest cases. You need to fill out an application and have all your records sent here. She’ll read through them and if she agrees to take you on, we should be able to get you an appointment about a month later.” Ok, I’m cool with that, she’s supposed to be the best. I filled out the application and faxed it right over, and had my doctors fax the records. I tracked down my old doctors for records, I called my aunt and my mother to make sure I hadn’t missed any. And then I settled in to wait. I had been warned it may take a week for her to decide if she would take me on. I had spent all of my Monday morning with the application (it was like 5 pages front and back), and calling for those records. When my cell phone rang that afternoon, I was shocked to see her office number pop up. I snuck to the break room to take the call, figuring it would be the receptionist with bad news.
“Hello, this is Dr. Dingman.” Yeah, she called me herself, just a few hours after getting my paperwork. I could barely speak because I was feeling this weird sensation – hope. “I’ve been looking through your records, and frankly, this is very troubling. I can’t imagine why no one has done more testing. I’d like to see you as soon as possible.” I’m falling over myself to agree. I will come in at her convenience, I can wait a month, whatever she wants. “A month? No, I think you’ve been dealing with this long enough. Can you come in at lunch tomorrow?”
That first appointment was amazing. She really listened to what was going on. My mother went with me, both for help getting it all out (I was so young for the beginning of it and I didn’t want to miss some key piece of information) and for moral support. I couldn’t have handled it if Dr. Dingman had shut me down too. We told her everything, and at the end she said, “I don’t know what is going on with you. I don’t know what this is.” My face must have fallen. “But I have some ideas and I’m going to figure it out. No matter what it takes, we will find an answer.” That’s when I just started crying. It’s amazing what that ray of hope can do.
She sent me for tests – blood tests, ultrasounds, CT scans, MRIs. All fine. She scheduled me for exploratory surgery just after my 23rd birthday. Using three laproscopic incisions, she took an up-close look at my uterus and ovaries and finally had an answer for me. Endometriosis. Stage 4. She said she didn’t often see a case as bad as mine. In particular – remember how above I talked about a few ER visits for possible appendicitis? The scar tissue and adhesions from the endometriosis were wrapped around my appendix. Not just lightly touching though, they had MUMMIFIED my appendix, essentially. She removed it, knowing what should be there, but unable to actually see any sign of the organ, and when she cut into it, all this gunk spilled out. I had had appendicitis for some or all of those 12 years of pain – the organ was just so mummified it couldn’t swell to show up on scans. During the procedure, she had scraped out all the adhesions, cysts, and everything she could find. She had also done a D&C – I had what appeared to be appendix cells in my uterus. We never did understand that one. When I woke up from the anesthesia, she sat down with me and explained everything. My endometriosis was severe. She got everything she could, and I should have some relief, but most likely this wasn’t over. In a case like mine, it was possible, even probable that the endo had spread to other organs. We were going to watch my condition closely to decide what the next steps were.
It took 8 months. 8 months of gradually declining relief until she agreed that the time had come to handle this. We sat down in her office to discuss options. My periods were still frequent and heavy. I had cramps daily again. The endo was definitely running rampant again, and she believed I had some sort of hormone issue as well. She gave me two options. One, we could try to manage it with birth control and other medications. Two, she could give me monthly injections of Lupron to send me into menopause, but only for three months. Three months on, three months off. I chose menopause. She decided to clarify her position. Dr. Dingman was more than happy to put me on Lupron – once. But at the end of it, if it had worked like she thought it would, she did not want me going in and out of menopause every three months from 23 until…whenever. So if it worked, she would recommend that I have a hysterectomy. She waited for my reaction, probably expecting me to change her mind. I do know that she did not expect me to say, “Can we skip the Lupron and just do the hysterectomy?” She wouldn’t agree to that, but we did the first shot. She also said that while she thought I really would be fine with a hysterectomy, due to my age, she’d like for me to see a psychiatrist to make sure I’d thought of all the repercussions. And she asked me if I thought I’d change my mind about kids. “No, I can adopt.” What if I got married? “If he thinks he’s getting biological kids, uterus or no uterus, then he was not listening to me all that time and I would never get married in the first place, or I would leave him when I realized.” OK, then.
Three months of Lupron and I was feeling relief again. My periods had stopped. Completely stopped. And that sounds obvious, because I was in menopause, but with my menstrual experiences, I didn’t actually think it was going to work. But they had stopped. I wasn’t anemic. I was still having cramping, but it was a bit better. She sat me down and asked if I wanted the hysterectomy. Yes, absolutely, no doubt about it. “It’s not going to solve the problem. The endo is still on your other organs, it’s still going to grow back. All the hysterectomy will do is prevent the periods.” That’s fine, I get it, I’m on board. She set up the surgery.
On March 27th, 2012, I went into the hospital for my outpatient laproscopic hysterectomy. When I woke up, I started crying when she told me my parts were out, not out of regret, but out of disbelief and happiness. I couldn’t believe that it was really going to get better. She had ultimately had to remove my uterus, both ovaries, and part of my cervix. The endo had been wrapping up towards my stomach this time, which could cause major problems, and my spine. She’d scraped all of that out too.
The hysterectomy wasn’t a permanent solution. I still have endometriosis. I still have pain on a regular basis. I still have plenty of days when I want to curl up and cry from it. But I’m not anemic. I’m not constantly bleeding and having to deal with pads and tampons and ruining my favorite clothes. I no longer pass clots the size of a rodent, so big that they hurt. And now when I have the pain, I know what it is. I know that at some point, I will have to have surgery again to get the adhesions removed. Right now, I have reason to believe it’s wrapping around my gallbladder though, so I’m holding out as long as I can. The endo can have my gallbladder – I don’t need that. When the pain is unbearable though, and here is the real high point, I can go to the doctor and know that now they will hear what I’m saying. Or if they don’t, I’ve learned to fight. I’ve learned to keep looking for that elusive unicorn of a doctor who will help. And I’ve learned I’m not crazy.
The point of me sharing this story is people who don’t have endo don’t realize how hard it is to get the diagnosis. Maybe it’s gender bias in medicine, maybe it’s the lack of information on it, but it took me 14 years from my first period to my hysterectomy. And it takes plenty of women longer than that. And for the women out there with bad periods, severe pain, and no answers, don’t give up. Don’t stop pushing. Don’t listen when they imply you’re weak or whiny or crazy. If one doctor (or two or five – I saw probably about 20 or more gynos alone before Dr. Dingman) won’t listen, find a different doctor. Someone will be able to help, be able to give you an answer, and that answer, that validation, can make everything else easier to handle.
Now, like I said before, it’s National Endometriosis Awareness Month. Let’s use this month to tell our stories, because we shouldn’t have to hide them in the dark like shameful secrets. Let’s call out all the doctors who blow off women with reproductive issues and put the spotlight on the doctors who listen to their patients. Let’s donate to the organizations that are trying to improve knowledge about endometriosis (and PCOS and other reproductive issues – I’ve included links below). And let’s remember to support our friends who are struggling, whether they have a diagnosis or are still fighting for one. Because it should never take 7 years for a doctor to pretend to care. It should not take 12 years for a doctor to actually look at what’s going on. I should not have almost died because I was so used to pain. And women shouldn’t be rejected for hysterectomies because their husband might want kids.