My Struggle with Endometriosis

I feel like I’ve written this story so many times, in support groups, for disability paperwork, for #EndometriosisAwareness Month (it’s March, wear yellow!).

Each time I tell it, I feel more distant from it, like it happened to someone else. It almost doesn’t seem real to me anymore. But then my husband and I get asked “so, when are you two going to start a family?” or someone holds a new baby and knowingly looks at me and says “it’ll be your turn soon!”

And then reality slams me in the chest, and my eyes start to water. I have to catch my breath. And I feel all over again exactly how real it all was. How real it is.

I’ve already mentioned some aspects of my disease. How when I first got my period, my cramps took me to the floor. How I started getting ovarian cysts. How I nearly died from my ruptured appendix being stuck to my abdominal wall with endo adhesions...

Not to gloss over all of that, but it gets worse. So after my doctor took out my appendix and saved my life, he sent me to women’s physical therapy for #PelvicFloorDysfunction . I don’t know if any of you have #PFD , or have even heard of it. Basically what happens is if you have pelvic pain for a long time, your pelvic floor muscles get signals from your brain that you have something going on and you need to protect your pelvic and abdominal organs as if you are under siege. So your abdominal and pelvic muscles tighten up, and then they forget how to relax. So you pretty much have to re-learn how to relax your pelvic floor and some abdominal muscles. And let me tell you, it is work!

So after going there for about a year, I started to have a lot of pain again, (like my insides were wrapped with barbed wire, and there was a creature with ice-cold claws trying to scratch its way out from inside) and my doctor said that I couldn’t possibly have endometriosis still, because it doesn’t come back.

I will pause so y’all can put your phones down and scream into a pillow or whatever you need to do. Buckle up, because it just gets worse!

1. He *cauterized* the adhesions rather than excised them

2. He was not a specialist

3. He wouldn’t even listen to my physical therapist, who knew more about endo than he did, and with whom I’d never missed an appointment

So to jump through the hoops of my doctor, I agreed to try an #IUD (He chose #Mirena ) . Worst mistake ever. This thing *hurt* the entire time I wore it. You know how it’s really crappy that first day, and they tell you to take ibuprofen before you go? They didn’t tell me that, first of all, and second, it felt like that every day. For 18 months. And I bled every day. Mostly rust colored, but sometimes it was black. Not like black clots. Black liquid. Ew. And ouch.

I went back in at the 6 month mark to see what they could do, and he did an ultrasound and a CT, and said everything looked fine. Again at a year. Everything was fine. At 18 months I switched doctors. She tried to pull it out but the cords were cut too short.

She tried 3 separate times. Twice with metal tools. It was one of the most painful things ever, and I bled, *a lot*. I actually got clammy and almost passed out the last time. She decided she was going to surgically remove it, because she wanted to do a laparoscopic *excision* of my endometriosis. **She** is a specialist, and **she** is still my favorite doctor.

While all of this was going on, I was still working at the hospital—the only job I’ve ever truly felt like I was meant to do. Doctors and patients asked for me by name. I was skilled, I was efficient, I was practically perfect. I only made one mistake with patient identification the entire 5 years I worked there, and it was because I was training my replacement and a flood of specimens came in, then a nurse came in and was frantically yelling at me about something, then a tech started yelling at her and me, and when I got back to my trainee I started intake of specimens without exiting our previous patient.

No one’s fault but my own, and I felt sick over it for days, but what are you gonna do? It was my mistake and I owned up to it...what were they doing to do, fire me again?

I had been trying my best to work through all of this pain, but running around for ten, sometimes 14 hours a night, sometimes not getting a break, and for most of it I was there by myself...it takes a toll.

I was taking pain medication and not eating, so I was throwing up a *lot*. And when I say a lot, I mean 6 or 7 times in a ten hour period. But I still managed to get everything done. Baskets or whatever we called them were stocked for the next shift. I even went up to help with morning rounds, and worked the ER calls, and the Birthplace calls.

I was doing everything I could, and I thought I was doing a darn good job. The night techs (two amazing women, I don’t know if they would want to be named) really had my back and they were no-nonsense women who would definitely throw you under the bus if you weren’t doing your share of the work.

The really hard time for me started when they hired a new morning supervisor. Her name was Holly, and it seemed like it was her personal mission to make my work environment as hostile as possible.

We wore these little walkie talkie necklaces, and you were able to ‘locate’ people with them. One morning she located me, and it said I was up on the floor above in some conference room that was empty (and locked, mind you).

She called me on my necklace and told me to get down to her desk immediately. I told her I was in the bathroom and I’d be right there. No word of a lie there was a bathroom three feet behind her desk. That is where I was. I could hear her talking about how she was going to ’finally bust me’ and how I must be up there taking a nap or something.

When I exited the bathroom I pushed my walkie necklace, said locate (my name) and waited. It said I was in the conference room.

The look on her face when she turned around was so priceless. I told her I’d never even been up there except walking by it to the cafeteria, and I’m pretty sure it was locked. If I wanted to take a nap, the hospital was full of actual beds, or I’d just go home.

So many more things like this happened, to the point where she got me fired. I was honestly so sick and tired though (appendix had ruptured etc,) that it was a relief. She’d made the job I loved a hellish place to work. I was such a nervous wreck going in there anymore that on a few occasions I had actually thrown up on myself on the way to work, and had to call in and get doctor’s scrubs to change into. They counted me late when this happened. I had FMLA for my health problems, I showed up covered in puke, and they still counted me late.

The day I got fired was the day before I was supposed to have surgery. My ex-boss didn’t offer me COBRA. The hospital tried to charge me $20,000.00 for my surgery. I had to deal with going in and talking to the billing people days after I had excision of my ovaries, bowel, uterus, and abdominal wall because my boss was a vindictive bitch who wanted to be popular with the new girl (Who eventually came for her job, and won. so at least Karma is real).

A bit more in depth about my surgery: a piece of my bowel was starting to get stuck to my ovary. An adhesion was starting to loop around the two like when you put a ponytail holder on, it just hadn’t got the whole thing yet. People die from bowel obstructions all the time. Wonder how long it would have taken for that to blow if I’d stayed with my old doctor...

Also found out that I had a #tilteduterus. It tilted backward away from my Fallopian tubes, so getting pregnant would have been difficult for me. I guess it was *very* tilted...whatever that means. Pert near on its back? But anyway that’s why the IUD was hurting and why I was bleeding.

My uterus had ”pulverized” this IUD. It slightly perforated my uterus, and I guess it fought back? When she took it out, the IUD was folded flat in half.

She also did this thing I hate called a #colposcopy, which I’m sure you guys are familiar with and hopefully hate in solidarity with me. The results for that weren’t good. I had high grade #dysplastic cells...which brings me to my...”boyfriend”? At the time. #Toxicity can play in the background. NOT Toxic by Brittany Spears. He doesn’t deserve her.

I’ll make this quick because it was a traumatic relationship that I’m still talking about in therapy.

I met him in college, he was one of those “oh, we shouldn’t date, it’ll ruin our friendship. I’m no good for you“, while simultaneously pulling me closer. Yea, I should have run screaming. But my first little high school relationship ended in his suicide post high school, my second one stalked me...I was naive and hurting, and vulnerable.

So we dated, but I was a virgin until I was 24. Or 26. The details are fuzzy. Anyway, he gave me #HPV. And took my virginity without my consent. Then cheated on me, called me names, hit me with stuff, left me, broke my heart, also stalked me, then tried to invite me to his wedding and act like we were best friends, while sending me texts on *Christmas morning* like “I miss our sex”.

Anyway, I blocked him after telling him off, he’s out of my life, I need to meditate after writing this, but he gave me HPV, because he was cheating on me, and didn’t get tested or lied about it. Then I got the high risk #displaysia.

I had to be checked often after that. And my endometriosis was worsening. I had three laparoscopies in one year. Each time I was covered in adhesions. I tried the #Lupron injection, and while it completely stopped my period (finally), I still had a hormone surge from it that was putting me back in the hospital with pain and vomiting two weeks after the shot.

I had just started a new job at a plasma donation center, and I had already had one surgery while working there. I had actually gone to my interview for it still recovering from a surgery as well. When I had my next #colposcopy and got the results, I had to make the most difficult decision of my life.

My high risk displaysia had progressed into #cervicalcancer . It was extremely early. I wasn’t shocked by the news, but I knew it was time to ask my doctor for a #hysterectomy . I knew I couldn’t keep going with the quality of life I had, which was very little.

My doctor agreed it was the best course of action, and I had a total hysterectomy in 2013. I have felt so much better physically since then. I still had to have another surgery to clean up some scar tissue and have a surgical staple removed from my very first surgery that they’ve missed every time.

I still take a low dose progesterone to keep the endo from growing in places they may have missed it, and to keep my ovulation in check. Sometimes I still get ovulation pain, but it’s not so bad.

Emotionally it’s been a bit of a rollercoaster. I’ve been so happy and relieved to not have to deal with a period, or IUD, or monthly shots in the hip. It’s a bit scary that I had cancer though. It really doesn’t feel like I did. It was there one minute, then it was gone. I still have a little cusp left of my cervix, and my doctor still does a colposcopy on it if my #PAP is abnormal. I’ve come close a couple of times again, but so far she’s been able to remove anything concerning.

I have had to go to the ER just this year for pelvic inflammation. Even with a hysterectomy it doesn’t completely go away. Playing the game of “is this a kidney stone, #ovariancyst, or just #PID?” gets old. I think I’ve had about 60 transvaginal ultrasounds.

As for the baby thing...I remember being about five years old, playing baby dolls with my cousin (who has been one of my best friends since birth, I love her to death, and she’s due with her first baby in February. I honestly couldn’t be happier for her), and suddenly handing her mine and saying something like “I never want kids, I want a job”. I stuck with that my entire life.

Don't get me wrong, I love kids. I loved babies when I was growing up. I had a *lot* of older cousins so I got to hold a lot of babies. But whenever someone said I was great with kids and I’d be a great mom, I’d get upset or hand them back and be like “no thank you, please”.

It’s almost like I knew. Like I was working hard to not set myself up for disappointment. Well, here I am, in my 30’s, and I don’t have that career I wanted. I’m disabled. I can barely be awake all day. So I guess I couldn’t care for a baby anyway.

Plus I still might be #schizophrenic. Or I‘m being haunted. haven’t cracked that egg quite yet. Wouldn’t have wanted to pass that on to a child. Or endometriosis. Or Thyroid disease. Or whatever else I have. God sometimes the lists just seem so long, don’t they?

So when my friends and family tell me they’re having babies, I’m happy for them, I really am. But when I’m done being happy, I have to go be sad. Sad for the babies I’ll never get to have. The babies I probably never could have had or properly cared for anyway.