Endometriosis: Caitlyn’s Story

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by Caitlyn Japp

It took about seven years for my endometriosis to be diagnosed.

I have had very painful and heavy periods since I started my periods at 11 years old. However, when I turned 14 they got much worse. My mum was taking me to the doctors every week looking for an answer.

I was misdiagnosed several times: appendicitis (my appendix was removed), IBS, numerous food allergies… the list could go on.

When my diagnosis was first confirmed by laparoscopy in 2011, I was over the moon. I thought, quite naively, that all of my pain could now be cured. Sadly, that hasn’t happened; I’m still seeking a course of treatment that will alleviate at least some of my symptoms.

I experience a wide range of symptoms as a result of my endometriosis, including stomach cramps, sharp stabbing pains in my groin and vagina, fatigue, hot flashes, constipation, diarrhoea, vaginal discharge and monthly cold sores.

endometriosis.jpg.653x0_q80_crop-smartThe worst and probably most embarrassing symptom of my endometriosis is a severe pain in my rectum that can come out of nowhere and leave me literally lying on my bathroom floor, unable to move.

Sadly most general gynaecologists do not have much experience with diagnosing or treating endometriosis, and many women suffer greatly because of this.

I have almost no energy during day-to-day life, especially when I have my period, which makes work quite difficult sometimes; not many managers understand how truly debilitating endometriosis is.

Unlike period pain, my symptoms aren’t monthly. They come and go throughout the month, which really affects my life.

Most weekends I am too tired to go out and enjoy myself, and I am unable to cope with stress as much as I use to, with even the slightest bit resulting in flare ups of pain. I was recently diagnosed with an anxiety disorder, and my doctor suggested it could have been directly caused by the effect endometriosis has had on my mental wellbeing.

Painting by Kyung Jeon

Image by Kyung Jeon, copyright 2013

My sex life has taken a hit, too, as I am either too tired or in too much pain to have intercourse with my partner. Luckily for me he is very understanding and has been there with me throughout my journey.

During the laparoscopy that confirmed my diagnosis, all of the endometriosis that was found at that time was removed, which helped greatly with the pain.

Unfortunately, like most cases of endometriosis, in a few months the pain returned, worse than before.

Illustration of a woman with her uterus exposedSince then I have been put on various different anti-inflammatories and NSAIDS, and most months I resort to Tramadol to get me through my day.

I have been offered hormone therapy, which would put me into a state of medical menopause for 6 months, but I didn’t feel that this was the right course of treatment for me at this time.

I’m currently looking into holistic therapies as well as the possibility of attending a BSGE accredited Endometriosis Centre. There’s one in Edinburgh that deals with endometriosis and chronic pelvic pain, but I live in Fife. Luckily, my GP is writing numerous letters on my behalf to try and get me on the waiting list.

Endometriosis is a chronic and debilitating disease, but it can be managed.

If you think you might have endometriosis, you may need to fight for a diagnosis in order to get the best possible treatment you can. Don’t give up.

Doctors will too often misdiagnose you; that shouldn’t be happening.

A crocheted, smiling uterusEducate yourself on the symptoms of endometriosis, the disease as a whole and the treatment that you feel you should be getting. If something your doctor suggests doesn’t sit well with you, tell them, or seek a second opinion.

Remember: there’s a large community of endo sufferers. Talk to them, share your experiences. Don’t give up and don’t let endo take over your life!

Author imageCaitlyn Japp is a 25 year old film graduate and endo sufferer. She graduated from the University of Stirling with a degree in Film and Media studies before commencing employment as a PA. She was diagnosed with endometriosis at 21, after 7 years of chronic pain. Caitlyn enjoys film, photography and coastal walks with her partner Mikey and their dog Coco. She hopes to raise awareness of endometriosis in order to help those who live with chronic pain.

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