Health

Endometriosis: ‘I was told this was a normal part of being a teenager’

One in 10 women suffer from this painful condition but it takes on average 12 years to get diagnosed

Cathleen Kerrigan: ‘I never knew that my pain wasn’t normal.’ Photograph: Becky O’Sullivan

Cathleen Kerrigan
Tue Mar 29 2022 - 06:01

Whenever a group who menstruate get together to talk about their experiences with doctors you’ll invariably hear some of the same things being said again and again.

“I tried telling my doctor the pill was making me depressed but I felt completely dismissed.”

“I was told my pain was normal and to go on the pill until I’m ready to have children.”

“The focus of my care was always brought back to having children, even though that’s not something I’m considering right now.”

READ MORE

I first went to see the doctor about my irregular periods and extreme cramping pain when I was 16. I was told this was a normal part of being a teenager and would settle down once my hormones did. I was put on the pill to regulate things until then.

My friends had various experiences on the pill – irrational, unexplainable mood swings, weight loss, weight gain, depression. They were concerned about increased risks of blood clots or even possibly cancer, trying to decipher the truth of the extent of the risk, between word of mouth, the long, small print pamphlets included in the box and each doctor’s differing opinion.

Despite their wildly different side-effects or concerns, they all had one thing in common: they were consistently disregarded by their doctors and told it was all in their heads. They were told to switch brands and give it another go.

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 it.

The pain seemed to get worse with every period. In the week leading up to my period my stomach would swell, my legs ached. From under my ribs and down to my knees was alive with red hot pain. My breasts ached. It was agony to go to the bathroom. It felt like I had a constant UTI. Then the cramping would begin; a deep, pulling pressure. Twisting and tearing and ripping. I would feel as though I could faint. I couldn’t stand, sometimes I couldn’t see, it hurt so badly. I would spend the mornings over the toilet bowl, dry retching from pain or vomiting from the nausea. For two or three days I couldn’t move. I’d curl up in bed and wait for it to end.

I was unequivocally dismissed

I took as much prescription pain relief as safely possible, chainsmoked CBD and swathed myself in hot water bottles, but it felt as though there was no relief. My boyfriend brought me porridge in the evenings. If I was alone, I wouldn’t eat. A week of PMS and at least a week of period – that’s half the month gone to pain.

I kept going to my doctor. I believed the pain wasn’t normal. It was stopping me from living my life the way I wanted. I was told relentlessly, the only solution was to go on the pill. When I explained my reasons for not wanting to be on 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 given it enough of a try, it’s the only treatment available for your problem.”

“Well, if you’re not going to try the pill all I can do is give you painkillers.”

Last year, as I went for a routine STD check, I spoke to 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 experienced uterus pain. "You are going to need to make them believe you," she said. "Doctors are not going to take you seriously until you have a paper trail of countless visits. You have to be relentless. The system is overrun and they don't have the time or resources to take everyone seriously. It's going to be a long road but you need to keep going and keep track of your visits until someone listens to you because your symptoms are not normal. I can tell you now, there is something wrong with you, but you won't know for a long time what that is. You should start now."

And so, with a renewed vigour, I began my seemingly never-ending hunt for a diagnosis.

A long journey ensued of lost referrals, hours spent in waiting rooms and a lot of being placed on hold. It felt like a full-time job trying to chase up test results and specialist appointments. I received a letter telling me that due to increased demand for gynaecological services the wait time was in excess of 52 weeks. When I finally got an appointment I googled the doctor’s name, only to discover to my horror that he’s been successfully sued in the past. I went public, I went private, I was willing and able to try anything and everything.

Most times when I went to the doctor, I felt like I was begging. Begging for blood tests, transvaginal ultrasounds, examination after examination.

At another doctor’s appointment I had a panic attack before what I was told was an essential internal pelvic exam during which I was sobbing and hyperventilating without being given a moment to calm down. Afterwards, 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 STDs had already been ruled out. I went home crying and was in pain for days.

In the meantime, I am called for my first smear test.

I go in and brace myself for pain. The speculum makes me bleed a lot and the nurse sits me down and says if I’m experiencing pelvic pain or bleeding I should really get it checked out.

“I’m really trying,” I tell her.

During this long journey of hospital and practice 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, I was told by a doctor. And finally, I had a name for my pain. Probably. If I could get surgery for a diagnosis.

However, the doctor told me, unfortunately there is no cure for endometriosis. “Basically, your only treatment options are to go on the pill or get a hysterectomy.”

I was told there was no point in sending a referral to a specialist as it will bounce back if I haven’t given the pill a fair try. The seven years I was on it previously, no longer counted. I had to weigh up the value of my mental stability and my need to be taken seriously by a specialist.

Feeling defeated and exasperated, and with what feels like all avenues explored, I eventually gave in and have decided to stay on a continuous dose of the pill until I can afford to travel to the UK for, hopefully, better treatment options.

It feels like I keep hitting a brick wall. I begin to actually believe that 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 experience and don’t complain about. We are so accustomed to believing pain is our lot in life and we must grin and bear it. It probably stems from childbirth.

Life is suffering and women do it in private. So I never knew that my pain wasn’t normal. That the things that hurt me do not hurt other people. Until I started speaking up about it.

I began reading online about endometriosis. I learned that a lot of what doctors in Ireland told me as fact simply isn't true. That a hysterectomy does not simply get rid of the problem. That there are treatment options. I see the list of symptoms and am able to check them off one after the other. It all starts making sense to me.

Why had no doctor ever given me this information?

I learned I’m not alone. That my frustration is common. That it’s a condition which truly lays bare the sexism of the medical industry. That one in 10 women suffer from it. That it takes on average 12 years to get diagnosed (11 and counting here). That for such a prevalent condition, it is massively under researched. One of the few examples of research that can be found online is a study analysing whether people with endometriosis tend to be more or less attractive than others.

I learned that if you don’t have money and resources you will not get your pain seen to or taken seriously. How many women, without the privileges I have, are living in pain, in silence?

If nobody talks about the weird things our bodies do then we'll never know how common our issues are

If I had never talked about my problems to my friends, strangers on the internet or even the random girls I would meet on a night out, I would never have had the self-belief or confidence to insist something was wrong and be persistent in demanding thorough examinations from my healthcare provider. If nobody talks about the weird things our bodies do then we’ll never know how common our issues are. Talking to other people (I use the term people as not only women experience periods and hormonal pelvic pain. For too long trans men and non-binary people have been left out of the conversation and out of consideration, though the pain we all experience is the same) who menstruate and researching their stories online has educated me so much on my own issues, in a way I wish our doctors would try to do.

The more we share our stories and experiences, the better for all of us.

If you know that something in your body is wrong, believe in yourself and demand to be listened to.

Read: How pelvis health may help with endometriosis

LATEST STORIES