‘Floored By The Pain’ – Living With Endometriosis

March is Endometriosis Awareness Month.

For those who don’t know, endometriosis is a chronic condition which affects 1 in 10 women, with debilitating symptoms such as pelvic pain that worsens at menstruation, painful sex, bowel problems, infertility and chronic fatigue..

Endometriosis is a relatively unknown condition and women wait up to 11 years for a diagnosis, with many young women having no answers for their severe pain during periods and constant chronic pain.

Basically, it's when the tissue that normally only exists within the womb (endometrial tissue) grows in other parts of the body, and is closely linked to the menstrual cycle.

The condition has no cure, and can only be diagnosed through a laparoscopy (a type of surgical procedure) and treated surgically thereafter.

At least 10% of our readers suffer from this condition, and it’s imperative that more awareness is raised around the issue.

I spoke to reader Julie Ronaghan from Donegal, who suffers from the condition, about her story.

A Donegal woman and intellectual disability nurse, Julie was diagnosed after years of pain six years ago, at the age of 24.

“Everything started when I got my first period. I remember I was one of the last of my friends to get it and I remember being very upset and I was dying for it to arrive......the irony! When it finally did arrive, I remember being literally floored by the pains. The pains would be intense in my legs and back, I remember being brought to my knees in the toilet in school and I thought this can't be normal.“

She had several years of relief when she went on the contraceptive pill, but from the age of 21, her life was spent at the doctors or emergency department with acute pain, being told she had conditions from IBS, kidney infections and appendicitis, to pelvic inflammatory disease.

After her wedding at 24, she went to a GP that thought something else might be causing her symptoms, and that was endometriosis.

He did a laparoscopy and didn’t find anything, but Julie remained curious about the possibility endometriosis was the cause of her misery. Being undiagnosed left her stressed:

“I also spent a period of time in hospital, as I was having palpitations - turns out this was anxiety rearing its ugly head. And along with it came a little depression. Not knowing what is wrong is heart wrenching and does horrible things to your mind.”

She found relief after she began trying for a family, and made an appointment with a fertility specialist who had a special interest in the condition.

"He was the first consultant to really listen, to really understand and who took me seriously from day 1. From my symptoms he was sure I had endometriosis."

Julie then had surgery last year, and unfortunately, has had no pain relief since, and has pain in her nerves from where the endometriosis was found. However, she remains hopeful.

She told me she had no awareness of the condition, and advised those who are worried they have the condition to keep a pain diary, and read the Endometriosis Association of Ireland’s website.

“Be honest and up-front with your GP and if he/she isn't giving you what you need, go somewhere else. Help yourself make informed decisions regardless of what the doctor might say. And read read read, until you’re blue in the face to become a true endo advocate for yourself and others.”

”Know your disease so we can try to stand up for ourselves to receive best care possible. And that you are not alone, there is 155,000 women in Ireland with endo so we are not alone.”

Speaking about the limited treatment options here, Julie adds that there is a need for more consultants who treat the condition using a process called excision where they remove the excess tissue. Ablation is the more common method, but this only provides short term relief.

When asked about how she was coping with the pain, she sang the praises of heating pads, pain medication and her supportive family and friends and husband:

“I have an amazing family and amazing friends that support me, they are there when the days are really dark, the times no one else sees and they lift me out of this.”

Sometimes, though, the pain gets too much: “It’s the kind of pain that stops you in your tracks, takes the breath from you and makes you fall to your knees.”

She has found great support in The Endometriosis Association Of Ireland, whose website is informative and debunks the many myths around the condition.

The EAI is holding an information day this Saturday, March 12th in the Hilton Dublin Airport Hotel and you can find more information about it here.  If you're concerned about having the condition or know someone who is, this could be a very useful and educational experience.

There's also a private Facebook page that you can join by emailing your details to info@endo.ie.

Image courtesy of Julie Ronaghan.