Hysteria
Disclaimer: Please note this is my own experience. These are my feelings. I recognize another woman’s experience might be different.
I looked at my MRI and
play doctor.
Googled terms.
Because I had learned if I didn’t connect the dots, the doctors might not.
“What is Adenomyosis?” I said at my next appointment playing dumb pointing to it on the report. Because my doctor hadn’t said a word about this yet.
The doctor off handedly told me. “Oh that’s when endometrial tissue grows into the wall of the uterus.”
Paused. I waited. The pause continued.
I actually had to say, “What do I do about that?”
She pretty much told me ripping out my uterus was my only real answer and… get this… that’s also the only way to for sure diagnosis it so if its not that it’s too late. Uterus is gone. Oh well.
That was a year ago.
There were less sentences on my follow up MRI this year. It didn’t even mention my thickened uterus this time (An indicator of Adenomysois) and this scared me because this triggered the fear of the worse case scenario.
That they would tell me nothing was wrong with me.
Because I was at the mercy of whoever interpreted my MRI images and what they found and what they decided to look at.
For me the worst was not getting bad news from the doctor. It was them smiling and telling I was fine when I knew I was not.
This all began two years ago. Searing pelvic pain. Nothing like I’d ever experienced before.
When I went in to my general practitioner crying, she tested for a UTI and it came back negative. She told me nothing was wrong with me and prescribed me Ativan.
I never realized how terrible my general practitioner doctor was until I really needed her.
My visits had always been routine. Check ups. The occasion cold and flu appointment.
She always smiled and joked about how healthy I was. “You’re so boring! See you next year!”
Then I went in again and she examined me. “If something were really wrong I’d be peeling you off the ceiling right now.” Alluding to the fact that she had seen people in real pain. Which I’m sure she had.
Hot tip. Don’t compare my pain to anyone else.
She had me go get an ultrasound, which showed her nothing. At the time I did not know what Endometriosis or Andenomyosis were and how often times they did not show up in ultrasounds (or MRIs for that matter).
“You are really overreacting to this,” she said. “Calm down.”
“But what could this be,” I asked her. I went over all my symptoms again. She latched on the back pain and sent me to go get an x-ray.
Another week of anxious waiting.
We went over the results. “Everything looks great! See you at next year at your annual.” And sent me on my way smiling and blinking her eyes at me. A hint of annoyance. Tilting her head like she would to a child that didn’t understand. Don’t you see? Nothing is wrong. Go about your day, her face told me.
I started looking for a new doctor.
I put my Virgo skills to good use and created a time line of symptoms and tests and results so my next doctor would see everything I had done so far.
And I did find good doctors eventually that listened. They looked at my organized timeline of this terrible journey (“I wish all my patients did this!” one doctor told me. “I wish they didn’t have to,” I said.)
I was finally told I probably had endometriosis. But even still I had to jump through every hoop imaginable to rule out everything else.
Got a colonoscopy.
Went to an urologist.
Got a cystoscopy.
Took Aloe Vera pills.
Got a cat scan.
Got a MRI.
Changed my diet to cut inflammatory foods.
Went to physical therapy.
Took CBD.
Went on a no estrogen birth control pill to see if this would alleviate symptoms.
I spoke with my sister in law about this and she said, “You can ask for a diagnostic laparoscopy.”
I can??? Everything felt so out of control I really didn’t know I could ask for this.
So I asked, since this is the only way to diagnosis endometriosis. For the surgeon to go in there and find it.
My new doctor said, “Of course. Yes this absolutely reasonable for us to do. I’ll go in at your belly button and if I see endo, I’ll have to make further incisions.”
I will never forget waking up from the surgery and feeling my belly. Tears ran down my face when I found not only but the belly button bandage, but a small bandage on my left side which confirmed they found endometriosis.
It wasn’t all in my head. They found something.
That wasn’t the end of the road unfortunately.
The pain continued. But at least I knew what it was.
Now a year later, all my follow-up appointments were upon me.
I wore nice underwear to the gynecologist so I had a bit of control. See I’m hot even if you’re gonna be all up in my bits and everything hurts. I did not tuck my underwear under my shirt like I usually did. Put my lacey blue panties right on top of my clothes pile. I had nothing to hide.
This felt like a righteous act.
While I waited for my doctor, I went over my symptoms and questions I had written out on my phone because I didn’t trust my mind to remember them or my body to go into it’s usual stance of pretending not to feel pain.
I practiced saying, “Can you slow down a minute?”
I wanted to make the most of this appointment since I might not see her for a year because that was standard practice. Pain was not enough of a reason to go to the doctor unless it was spelled out on your uterus on your MRI and even then they would probably say it’s normal. I am a woman (of a certain age) after all.
Over the last year I’d been put on low dose Orlissa, a new-ish drug to ease the pain that I couldn’t even be on that long due to side effects. I’d read articles and scoured endo and pelvic pain facebook groups.
I asked one of these groups what things doctors had told them when trying to get help for pelvic pain. Hundreds of comments poured in.
Here are some actual things doctors have told women:
· I can’t treat what isn’t there.
· Maybe you need to lose some weight.
· You always seem fine when you are in the office.
· I have actual sick patients to take care of so stop wasting my time.
· Well you obviously just want to be in pain.
· Has this affected your sex life? What does your husband think of this?
· Take a Tylenol.
· It’s normal for females to feel pain.
· It’s probably a STD.
· Are you looking for drugs?
· This just happens when you get older.
· Is it really that bad? This won’t kill you, you know.
· Try soaking in a hot tub.
· It’s called cramps.
· Drink water.
· It’s anxiety.
· I don’t think it hurts as much as you say it does.
· Pelvic pain is a mystery.
Did that make you want to throw a chair across the room? Did you not believe it and think these are isolated incidents? I promise you they are not.
It’s astounding how many women deal with this kind of pain and how little the medical world knows about it. How the main way they treat it is with birth control pills or some sort of hormonal treatment, which rarely works.
The pain I have has gotten better, but it’s not gone. The drug I’m on isn’t working as much as I’d like it to and it’s just a Bandaid anyway that has an expiration date.
So after all of my follow up appointments, I’ve decided it’s time.
I found a recommended specialist who is going to do a laparoscopic surgery to excise the endometriosis thoroughly even though this is not a guarantee it won’t come back.
“Why might it come back?” I asked
“Honestly we don’t know,” he said sympathetically. “But this has good result.”
I’m holding onto hope. As far as Adenomyosis as all my doctors have told me there is no way to make a definite diagnosis. The treatment that has the best result is a hysterectomy. And they won’t even know if that was necessary until my uterus has been removed and tissue has been tested.
I want to be pain free, but the idea of removing my uterus fills me with sadness. And I’m one of the lucky ones who has been able to have kids.
Why are there no better answers to these problems yet especially when this is nowhere near a rare condition? (About 190 million women suffer from Endometriosis globally and that’s not even the only cause of pelvic pain). https://www.who.int/news-room/fact-sheets/detail/endometriosis
Why are women’s bodies treated as though they don’t matter?
Because it’s not a priority.
Because our bodies are not our own.
Because women’s pain has been ignored and dismissed since the beginning.
Because silent suffering was the norm. Because women learned to live with their diseases. Because what other choice do we have?
Research is happening I’m sure but answers can’t come soon enough. From what I understand there is no urgency. Not until enough of us make noise maybe.
I imagine a Victorian woman, Bernice, let’s call her, finally calling on a doctor. Bernice has felt like shit for years. Her husband is probably tired of her crying during sex. Finally she asks for help.
And she gets the hysteria diagnosis (This was real by the way. See articles listed below). And won’t her husband be happy because some of these doctors thought men’s sperm would cure her.
God I feel you, Bernice. Why is it that response to women’s pain has not changed much in centuries? Gaslighting. Calling us crazy. Because whoa those women’s bodies are crazy, man! Who knows what’s going on down there? It’s probably all in her head or she just wants attention.
Medical gaslighting makes you question yourself and your pain. I find myself forgetting what normal feels like.
In cases of sexual violence the burden is on women to prove what’s happened to them. When it comes to banning abortion our body autonomy is taken away.
These things also can happen when it comes to chronic women’s pain.
On my very bad days my worst fear takes over:
That when I have my surgery, they will find nothing and maybe hysteria is real.
When the world treats women this way it’s no wonder we feel crazy sometimes.
But I’ve never felt stronger then when I’m advocating for myself.
Pain is not normal.
You live in your body everyday. You know your body.
Trust it.
Don’t let the conversation end when your doctor ushers you out the door pleased with the tests they have ordered and say they will see you next year. Ask the question: What do we do now? What can we do to get to the bottom of this pain?
Keep asking.
This is your body. This is real.
Keep advocating for yourself. No one is going to do it for you.
You deserve to be believed. You deserve to be pain free.
Until then I’m going to periodically listen to Def Leppard really loud and scream.
Articles about women’s pain:
https://newrepublic.com/article/147303/reality-womens-pain
Helpful resources I have found:
Nancy’s Nook endometriosis education- facebook group
Endometropolis – facebook group
The Endo Monoglogues- Link to: https://www.instagram.com/theendomonologues/
