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Love Letter to the Undiagnosed

Love Letter to the Undiagnosed

Dear you,

I know you’ve been struggling a lot lately, you’re physically and emotionally exhausted and you just want to give up. I’m here to remind you to keep going. You can do this.

You know that something is wrong. You’re in pain, a deep, life-altering pain that can’t be solved with rest or painkillers. You ache, your body is working against you, but for some reason, you’re not being listened to.

Your primary care physician told you this was just a heavy period, but you know periods shouldn’t make you feel this awful and you’re right: they shouldn’t. You shouldn’t have to live like this just because you were born with a vagina.

When you finally, by some miracle, were referred to a gynecologist, he (the doctor may have been a woman but let’s be real here) looked down his nose at you and minimized your pain.

You were sent for scans that never yielded anything, probably because they were the wrong type of scan. You’ve had invasive examination after invasive examination. Anything to try and be believed. And still they found nothing.

There’s the time you were screaming on the floor doubled over in pain and there was nothing else you could do except go to the emergency room. There you were treated like a silly little girl and were told to go home.

Your pain is real, I believe you.

It’s easy to start believing that you should just get on with it and ignore your gut feelings, but every time the pain comes back you know that isn’t possible.

The depressing news is that it takes an average of 7 to 10 years to be diagnosed with endometriosis.

The APPG Inquiry into endometriosis found that prior to getting a diagnosis 58% of people visited a primary care physician more than 10 times. 43% visited a doctor in hospital over five times and 53% visited the ER.

I tell you this not to make you feel worse, but in the hope that you will feel less alone. It’s not just you.

Reproductive pain is massively underestimated, misunderstood and forever brushed under the carpet. So unfortunately that means that it’s going to fall to you to fight for your diagnosis, because the people who are supposed to care for you just don’t get how much this disease is destroying you.

This is where you have to become your own biggest advocate, though I’m sure you already are. You’re going to have to prove to them that you really are in as much pain as you say. Because just saying, just crying, just begging for help isn’t enough, apparently.

You can keep a pain diary, maybe in the notes app on your phone, in a notebook, or even in a period tracking app. Keep track of your menstrual cycle, if you’re bleeding or ovulating and look for patterns. Note down every single type of pain. Also write about your mood, things you’re noticing such as new changes to your body (hair loss or growth, excess discharge, weight gain or loss, bowel changes). This way you have something solid to take to your next appointment as quantifiable proof.

Be prepared to fight for the outcome you want. If a doctor tells you they’re ready to discharge you despite not doing anything, tell them why you think you still need to see someone. If they say there’s nothing to be done, have a list of possible options–birth control, scans, operations, treatments. Nothing is going to be handed to you whilst you’re still not diagnosed.

Most importantly, don’t let anyone tell you your pain isn’t real; only you live in your body and experience your life. I know how discouraging this can be but please keep going.

I believe you, your pain is real.

Sending love and strength,
Another Undiagnosed Fighter