Two nights ago, I found myself in the ER, hunched over in severe pelvic pain. I was pretty sure a cyst had burst on my ovary.
After checking in at the registration, answering the questions in triage and peeing in a cup, I waited for three hours in the freezing cold, armed only with a hospital blanket to be shuffled into a room and questioned by a doctor.
No offense to ER doctors but I don’t trust you. I respect the work you do. I’m glad you exist. I’ve even liked some of you. But I don’t trust you.
“I have severe endometriosis,” I said to the doctor and nurse. I’m pretty sure the nurse, who was typing on her laptop, didn’t know how to spell it.
I’m used to people not knowing what endometriosis is although sometimes they find the need to tell me that their sister has it or a neighbor. Sometimes they sympathize with my bad periods. Although they usually recommend Tylenol while I’m prescribed it with codeine for my time of the month.
“Have you had any surgeries in the pelvic or abdominal area?”
“My last laparoscopic surgery was a year and a half ago.”
“And that’s how they diagnosed the endometriosis?”
“They diagnosed it when I was bleeding from belly button.”
Doctors technically diagnosed it from an MRI I had before I had the laparoscopy. They sent me to a MRI after I was bleeding from my belly button. Well, one doctor did. She is a fertility specialist and was the 9thdoctor I saw in eight weeks after my belly button became a solid, painful balloon and then burst, bleeding – first, when I had my period – and finally, after Lupron treatments, every single day.
You can see endometriosis on an MRI is a secret. I guess you can’t see all cases of endo with a MRI which keeps the secret from being a lie.
But my obgyn held up the MRI results and you could clearly see the lesions that had built from tissue growing outside the uterus, where endometrial tissue is supposed to stay. “
“There’s endometriosis,” she said. “Which we already knew.”
The medical community wants us to believe that you can only diagnose – and remove – endometriosis with a laparoscopy.
Since laparoscopies are expensive, most women are told to bear with the pain, or that there’s nothing wrong with them.
It isn’t until a woman tries to become pregnant that doctors find they can group these surgeries under “fertility treatment” and hope that, by then, it’s not too late.
“Do you suffer from any chronic disease?“
“I have endometriosis.”
“I know, but any other diagnosed chronic disease? Diabetes? Asthma?”
I go to bed every night with a heating pad wrapped around my pelvic area. I do not leave my bed when I have my period. I am always tired. I have constant pelvic pain. I watch everything I eat and have decided to cut dairy, meat and gluten from my diet. Without yoga and pelvic stretches in the morning, I can not walk by the end of the day.
“No Diabetes of Asthma.”
The doctor then explained to me, in a very formal fashion like she was reading from a book on bedside manner that because I was a woman and in my age range and was having pelvic pain, she would have to do a pelvic exam.
I didn’t care that she had to do a pelvic exam. I’ve had pelvic exams with eight people in the room while on my period. I’ve had my cervix used in slide shows. She could have done my pelvic exam in my waiting room and I wouldn’t have had a problem with it. It wasn’t that I wasn’t willing to submit to one.
“Okay, but you aren’t going to be able to get in.”
She looked at me, a look which I took as I, “What do you mean?” but she was afraid to ask. I could tell by the tension in the room between her and the nurses. I could tell by the way she talked and the way she walked that she was young and she was still proving herself. I felt bad for her because it’s not her fault no one teaches residents about endometriosis. So, I decided to throw her a bone.
“I am really tight and small and you are not going to be able to get in with a septum. Maybe your fingers but I doubt it. Maybe if you put the pain drugs in me before the pelvic exam. But you don’t have a chance. My obgyn knocks me out when she does my exam.”
A few minutes earlier, I had just gotten finished telling the nurse that it’s really hard to find my veins so she should just put the iv in my hand – I know this from experience because due to my endo, I have to get a colonoscopy every six months – and she still spent more minutes than I would like to recall sticking the needle under my skin, moving it around, trying to find a vein. (She finally took it out and tried my hand.)
I wasn’t surprised when the doctor said, “It will be real quick. You will be fine.”
So I found myself in a woman’s least favorite position, on my back with my feet in stirrups and a septum in front of my vagina. She didn’t even have the smallest size. (In her defense, maybe the ER didn’t have the smaller size.)
“I’m sorry,” I kept apologizing like I always do to whoever is trying to get in there : doctor, crush, one night stand. “I go to pelvic therapy.”
“Pelvic Therapy, what’s that?” the nurse said and as usual, I wish I had the MTV True Life episode about the girls who can’t have sex in my back pocket to pull out and to show the curious. Even if I haven’t had the nerve to watch it myself. (I dvr’d it about six months ago.)
She was determined but I know my body better than she does. Still, I felt bad for her ten minutes later when she took off her gloves with defeat on her face. She shrugged her shoulders and left the room without saying anything.
“When was your last period,” the nurse asked.
“And the last time you had sex?” she continued even though she was physically present in the room for the past thirty minutes.
“Had or tried?”
When the nurse left is when I got sad.
The diet doesn’t kill me if it makes me feel better. I know my limitations and when I have to rest so the fatigue is manageable.
The cramps and pelvic pain are bad but they’ve almost become a part of me and I know with exercise and yoga and a good diet, I can deal with them.
But the not having sex part is really hard.
For years, I shut myself off from men. It actually worked well because I felt terrible about myself and was convinced no one would ever be attracted to me anyway.
I was always in pain. The bloating made me feel huge. My last relationship had ended because my boyfriend was frustrated at me never wanting to touch or be touched. For years, I shut myself off from any physical, and few emotional, attention or attachments.
Things changed after I had my second laparoscopic surgery. Diet and an assortment of vitamins made me feel better.
I quit my job so stress was less of an issue. I could fit into my skinny jeans again. I didn’t feel so much pain. I started pelvic therapy. The actual physical rehabilitation was helpful but it was also comforting to me to know there was such a thing; this was a problem I did not make up. Other women suffered from it.
Sex was not easy for everyone. My schedule was flexible enough that on the days I needed to spend in bed or on the couch, I could pamper myself and not feel guilty about it. I felt better about myself.
I started dating. At first, it went well. Until it came to sex.
One guy listened to me explain and I was happy because it was the farthest something had gone in for years. But it was still work and he broke up with by text message weeks later. He wanted something he didn’t have to think about, I thought about it all the time – and wanted to – and I texted back “I guess you can’t be a one night stand if you can’t have sex.” His reply: I’m sorry.
There was so much in that apology, more than “Sorry, I don’t want to see you as something more than a friend anymore.” There was “I’m sorry you can’t have sex” and “I’m sorry I can’t handle that.”
Another guy, after we spent the night together, told me we would figure it out. Again, I was hopeful. I even went to my obgyn (the very next day) for a prescription for vagina valium to help with intercourse. She phoned it in right away but I never had the chance to use it. He never called again.
People tell me over and over that when I find someone – the “right” someone, whatever that means – that it won’t matter.
I stopped going to a therapist because I was sick of hearing her tell me the story of the quadriplegic who got off in other ways. “There are other things to do,” I hear all the time. Yes, I know. I’ve done them. And now, I would like to have sex.
Here’s the thing: guys like sex. They want to have it. But what they like more than having sex is feeling secure. Sex makes men feel secure.
It doesn’t matter if they really know what they are doing or not, they want you to think that they do. When it’s over, no matter how long or short it is, whether they are wearing a condom or not, at the end of the act, heterosexual men accomplished something inside someone who, at that moment they are attracted to or they care about or they love.
When a guy can’t do that, can’t have it, can’t succeed when having it, can’t even get it inside, you’ve stripped them of something more than sex. Something more important.
Most of the guys I’ve tried to sleep with know me well enough to know that I can’t have children or that I have been sick the last few years but everyone is surprised that I can’t have sex.
Maybe it’s my fault because I don’t tell them until it’s been tried. It never seems appropriate to bring it up beforehand.
It’s hard to say “I can’t have sex” over a beer and there’s no box to put it in on your online dating profile.
Then things start happening and I’m not going to get that far, I always tell myself. I even started telling myself – and the guy I’m seeing – that I don’t have sex on the first date.
When you’re making out on the couch and heading to the bedroom, there’s no time to warn them .
Nothing kills a hard on like “Oh, and by the way, you aren’t going to be able to get inside me.”
You never want to tell them they can’t bang you if you’re not sure they want to bang you.
If he doesn’t want to have sex with you, there’s no reason to tell him that he can’t.
So, I’m not dating anymore. And when I was at the ER the other night, I called my mother to tell her another cyst had burst on my ovary. And my dad is still my emergency contact.
I have perfected the art of being the third wheel to my married friends. I told the text message guy to call me sometime to (just) get a beer but I’m pretty sure I still make him uncomfortable. I stopped reading the other guy’s Twitter feed because it hurts too much that he will never call, text or Google chat.
When the doctor and the nurse leave the room and before my mom gets to the hospital, I, in nothing but my hospital gown, wrap myself up in the waiting room hospital.
With IV’s in my arm, a failed pelvic exam behind me, the pain in my pelvis dulling due to the pain meds, I realize this whole ER experience is parallel to my dating life : cold, lonely, and misunderstood.
Edited by Hayley Samuelson.
Jennifer Leah Peck is a writer, teacher and arts administrator. Her elephant journal blog focuses on women’s health and sexual issues based on her own experience with endometriosis. As a fiction writer, she never thought she had any non fiction writing to share; now, she wishes she didn’t. Jenn writes and lives in South Philadelphia with her dog, Alistair Peck.
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