9 years to be 1 in 10

By Jo

At 15 I aw my first Gynaecologist with 'bad cramps'. I was too young for investigation. "We don't do internal ultrasounds on virgins" and "It will settle down as you age."

At 16 anxiety with each period starts. Lower back pain that shoots down my legs. Cramps that feel like my guts are twisting. "That's all normal for a girl your age. Ibuprofen and a heat pack. Try not to be too anxious".

At 17 the first pill was recommended. More pushed towards "safe sex" than anything else. It caused erratic periods. 3 more pills were tried, each with their own horrible side effects. "This is the safest way" "It's the best treatment for anything anyway". The year of "first times" also included the first internal ultrasound. The first mention of endometriosis, and the first of many embarrassing and scary conversations with doctors. No diagnosis. "The ultrasound shows nothing. Your symptoms don't align. It sounds like a gastric issue".

At 18 a Gastrologist blamed all abdominal symptoms on "eating apples" when 6 months Low FODMAP didn't help anything. "You must be doing it wrong. It's IBS". More ultrasounds. More blood tests. More specialists. "It's not to do with your uterus. Your periods are normal"

At 19, at the mention of painful intercourse, the advice was "Use lube. Take it slower".

Scopes were put up both ends. "It's not structural, try diet changes. Go gluten free".

At 20 a new relationship meant explaining the problems all over again. More scans, more specialists. More medication. More advice to "be mindful, try not to get too stressed. Take deep breaths". It feels like something is pulling my intestines, gas passing through feels like glass. "Don't be ridiculous, you can't feel that".

At 21 lectures were missed because of pain. New symptoms started, chronic pain, dizziness. Another scope. The bloating is so painful. Don't know where the gastric symptoms come from. “Salicylate free diet? Whole foods?” Food is being dumped 10 minutes after eating. Every bowel motion is excruciating. Could it be Endo? "Well, the only thing for that is the pill. And you didn't like that". Invitations taper out. "You'll just cancel anyway".

At 22 the final semester of Uni was done from the bathroom. Writing essays and watching lecture recordings while trying not to pass out from pain. Diarrhea 10 times a day. Weight loss. Not able to be alone in the bathroom. Months of only leaving the house for appointments. Not seeing anyone. It's probably in my head anyway, right? I got a POTs diagnosis. A Fibro diagnosis. Maybe that has something to do with it? Too sick to work. "you're young, you shouldn't be on a benefit"

At 23 a Capsule Endoscopy, a Barium swallow test, a bowel MRI. "You need to find work. Try harder. You can't stay on financial support forever". Periods are getting longer. More painful. 2 weeks long with a week between. Bloating makes me look 6 months pregnant. "If it is Endo, having a baby will fix it". As if I'm in a position for that. As if I could. Sex is too painful. Bleeding and cramps after every time. "We may as well be Roommates; that's all this is".

At 24 I make it 2 months in a job, barely able to focus. A heat pack on my stomach. Constant painkillers. Sex is never my choice anymore. Another relationship ends. I Lose the job.

July: Finally,

I find a Gynaecologist who recognizes what's there. Who wants to investigate.

In August the surgery happens. Cysts on my ovaries. Polyp in my uterus. Endo on my uterus. On the pouch of Douglas (I didn't even know what that was). Adhesions tethering my intestines to my abdominal wall (I laugh when I recognize the pain I've described for years). It's cut and burnt away. A mirena is put in. The recovery is painful. But the pain lessens. The mirena eventually stops my period. And hides what's there.

But I have the photos. I have the evidence. I have the scars. I have the validation.

And then I have another 6 years of pain, two more surgeries, two mirena (one imbedded in uterus), and no clearer plan.

A baby didn't fix it. The C-section made it worse.

The mirena isn't working. I try the pill again too. The Sid effects are too much, and it even makes my period longer.

"Just wait until you're 35 and have a hysterectomy."

Until then. Suffer. 🤷‍♀️

So I do.

Of all my chronic conditions, the diagnosis and treatment of Endo annoys me the most.

Endo impacts every aspect of your life, and every part of your body.

It's not just a bad period.

It's not all in your head.

The pill doesn't fix it.

Surgery doesn't fix it.

Having a baby doesn't fix it.

A hysterectomy doesn't fix it.

It should not take this long for a diagnosis.

It shouldn't be left to patients to solve it themselves.

We need more research.

We need more treatment plans.

We need more people to CARE.

1 in 10 of women and AFAB people deal with this every day.

1 in 10.

We deserve better.