“I was told it was a normal part of being a teenager”
Whenever a menstruating group gets together to talk about their experiences with doctors, you will invariably hear the same things repeated over and over.
“I tried to tell my doctor that the pill was making me depressed, but I felt completely rejected.”
“I was told my pain was normal and I had to take the pill until I was ready to have children.”
“The focus of my care has always been to have children, although that’s not something I’m considering right now.”
I first went to see the doctor about my irregular periods and extreme cramps when I was 16. I was told this was a normal part of adolescence and would subside once my hormones did. I was put on a pill to regularize things until then.
My friends have had various experiences with the pill – irrational and inexplicable mood swings, weight loss, weight gain, depression. They worried about increased risks of blood clots or even possibly cancer, trying to decipher the truth about the extent of the risk, between word of mouth, the long and fine print brochures included in the box and the dissenting opinion of each doctor.
Despite their wildly different side effects or concerns, they all had one thing in common: they were constantly ignored by their doctors and told it was all in their head. They were told to switch brands and try again.
I hated not knowing if my emotions were my own, caused by my thoughts and feelings, or by the little ball of artificial hormones I swallowed every day. Eventually, at the age of 23, I decided I wanted to see what life was like without her.
The pain seemed to get worse with each period. In the week before my period, my stomach swelled, my legs ached. From under my ribs and down to my knees was alive with searing pain. My breasts hurt. It was the agony of going to the bathroom. I felt like I had a constant UTI. Then the cramps started; deep, pulling pressure. Twist and tear and tear. I would feel like I could pass out. I couldn’t stand up, sometimes I couldn’t see, it hurt so much. I spent my mornings over the toilet bowl, gagging dry from pain or vomiting from nausea. For two or three days, I couldn’t move. I curled up in my bed and waited for it to end.
I was dismissed unequivocally
I took as many prescription painkillers as I could safely take, chain-smoked CBD, and wrapped myself in hot water bottles, but felt like there was no relief . My boyfriend brought me porridge in the evening. If I was alone, I wouldn’t eat. A week of PMS and at least a week of menstruation – that’s half the month spent in pain.
I kept going to my doctor. I thought the pain was not normal. It kept me from living my life the way I wanted. I was told relentlessly, the only solution was to take the pill. When I explained my reasons for not wanting to take the pill and my past mental health issues, I was unequivocally dismissed.
“Just because your friends say they don’t like the pill doesn’t mean you shouldn’t take it.”
“You haven’t tried hard enough, it’s the only treatment available for your problem.”
“Well, if you don’t try the pill, all I can do is give you painkillers.”
Last year, when I was going for a routine STD check-up, I told the nurse about my situation. She took me aside and said, “Listen, I’m going to tell you my story.” I could have cried, I felt so grateful. I won’t go into her personal details, but she too had felt pain in her uterus. “You will have to Craft that they believe you,” she said. “Doctors won’t take you seriously until you have a paper trail of countless visits. You have to be relentless. The system is outdated and they don’t have the time or the resources to take everyone down. it’s going to be a long road but you need to keep going and keep up with your visits until someone listens to you because your symptoms are not normal I can tell you now that there is something wrong home, but you won’t know for a long time what it is. You should start now.
And so, with renewed vigor, I began my seemingly endless hunt for a diagnosis.
A long journey ensued with lost dismissals, hours spent in waiting rooms and many on-holds. It felt like a full-time job trying to research test results and appointments with specialists. I received a letter informing me that due to the increased demand for gynecological services, the wait time was over 52 weeks. When I finally got an appointment, I Googled the doctor’s name, only to find to my horror that he had been successfully sued in the past. I went public, I went private, I was willing and able to try anything and everything.
Most of the time when I went to the doctor I felt like I was begging. Begging for blood tests, transvaginal ultrasound, exam after exam.
At another doctor’s appointment, I had a panic attack before what I was told was a vital internal pelvic exam during which I was sobbing and hyperventilating with no time to recover. calm. Then I asked what the test was for. Chlamydia and gonorrhea. I was stunned. If the doctor had asked or listened to me, I could have explained that the STDs had already been ruled out. I came home crying and was in pain for days.
In the meantime, I am summoned for my first smear.
I go in and brace myself for the pain. The speculum makes me bleed a lot and the nurse sits me down and says if I have any pelvic pain or bleeding I really should have it checked.
“I’m really trying,” I tell him.
During this long journey of hospital and office visits, I finally learned for the first time about fibroids, polycystic ovary syndrome, pelvic floor dysfunction, and endometriosis. There was a whole world of potential chronic pain conditions. It must be endometriosis, a doctor told me. And finally, I had a name for my pain. Probably. If I could have surgery for a diagnosis.
However, the doctor told me that unfortunately there is no cure for endometriosis. “Basically, your only treatment options are to take the pill or have a hysterectomy.”
I was told there was no point in sending a referral to a specialist as it will rebound if I haven’t tried the pill. The seven years I was there before, no longer counted. I had to weigh the value of my mental stability against my need to be taken seriously by a specialist.
Feeling defeated and exasperated, and with what seems like every avenue explored, I finally gave in and decided to continue taking the pill until I could afford to travel to the UK for, hopefully better treatment options.
It’s like I keep hitting a brick wall. I’m starting to think it’s all in my head. That my symptoms are psychosomatic. That I’m too weak to deal with the normal pain that all other women feel and don’t complain about. We are so used to believing that pain is our lot in life and we have to smile and bear it. It’s probably from childbirth.
Life is suffering and women do it in private. So I never knew my pain wasn’t normal. That the things that hurt me don’t hurt others. Until I start talking about it.
I started reading online about endometriosis. I have learned that much of what Irish doctors have told me is simply not true. That a hysterectomy doesn’t just get rid of the problem. that the are treatment options. I see the list of symptoms and am able to check them off one after the other. Everything is starting to make sense to me.
Why had no doctor ever given me this information?
I learned that I was not alone. That my frustration is common. That it’s a condition that really lays bare the sexism of the medical industry. That one in 10 women suffers from it. That it takes an average of 12 years to be diagnosed (11 years and more here). That for such a widespread condition, it is massively under-researched. One of the few examples of research that can be found online is a study analyzing whether people with endometriosis tend to be more or less attractive than others.
I learned that if you don’t have money and resources, your pain won’t be treated or taken seriously. How many women, without the privileges I have, live in pain, in silence?
If no one talks about the weird things our bodies do, we’ll never know how common our problems are.
If I had never spoken about my problems to my friends, to strangers on the internet, or even to the girls I met at a party, I would never have had the self-confidence or the confidence to insist on the that something was wrong and persist in demanding further investigations from my health care provider. If no one talks about the weird things our bodies do, we’ll never know how common our problems are. Talking to other people (I use the term people because women aren’t the only ones experiencing menstruation and hormonal pelvic pain. For too long, trans men and non-binary people have been left out of the conversation and regardless, even though the pain we all feel is the same) who menstruate and researching their stories online has taught me a lot about my own issues, in a way that I wish our doctors would try to do.
The more we share our stories and experiences, the better it is for all of us.
If you know something is wrong with your body, believe in yourself and demand to be listened to.
Read: How Pelvic Health Can Help With Endometriosis