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Endometriosis: 'It's the kind of pain that takes the breath from you and makes you fall to your knees'

Endo is the abnormal growth of endometrial cells. The pain can be relentless and there is no cure, writes Julie Ronaghan.

Julie Ronaghan

EVERYTHING STARTED WHEN I got my first period at around 13 or 14. I remember I was one of the last of my friends to get it and I was dying for it to arrive. The irony.

When it finally did arrive, I remember being literally floored by the pains. I remember being brought to my knees in the toilet in school and I thought this can’t be normal. None of my friends were suffering in the same way. I started on the contraceptive pill at 16, and this gave me a few years of reduced pain.

Seeking a diagnosis

In my 20s, my life changed. I spent a lot of time at the doctor’s or ED with acute pain. I went through a spell of repeated hospital admissions. This lead to many misdiagnoses with various conditions such as IBS, Urinary Tract infections, appendicitis and pelvic inflammatory disease. The most bizarre diagnosis was that it was an STI, despite all tests being clear.

I was fortunate to have a good GP who believed that there was something wrong.
Following my wedding, I was referred to a gynaecologist who performed a laparoscopy but unfortunately he didn’t find anything. This is common for a lot of women, as not all gynecologists are skilled in diagnosing or treating endometriosis.

This threw me, I knew something was wrong, and I was starting to think I was going mad. I also spent a period of time in hospital, as I was having palpitations. Turns out this was anxiety rearing its ugly head. Along with it came a little depression. Not knowing what is wrong is heart wrenching and does horrible things to your mind.

Crippling cramps

8th Annual Blossom Ball - New York Lena Dunham (she has spoken about living with endometriosis) attends a ball benefiting The Endometriosis Foundation of America. Source: AP/Press Association Images

About 4 years ago, we began to try for a baby. I came off the pill and my pain escalated to a whole new level. It is a pain that is really difficult to describe. One of my favourite endometriosis surgeons describes hundreds of excruciatingly painful blisters covering the inside of the pelvis. But even this does not convey how it impacts a woman’s life, her family, her career, her sex life, and her ability to live her life in very basic ways.

For me it feels like it is in every part of my body. My period would leave me debilitated and unable to leave my bed. My pelvis, abdomen, back, legs and even arms ache as if it was a bad flu multiplied by a thousand times. It’s the kind of pain that stops you in your tracks, takes the breath from you and makes you fall to your knees.

Surgical intervention

I educated myself on endometriosis and sought an appointment with a specialist who had an interest in the condition. He was the first consultant to really listen, to really understand and who took me seriously from day one. He was almost certain I had endometriosis from listening to my symptoms. My diagnosis was confirmed when I underwent another laparoscopy. Endometriosis was found in my pelvis and even on my ureters (the tubes going from the kidneys to the bladder).

At 27, this was a long and hard won diagnosis. Some of my endometriosis was excised but I needed to be referred to Dublin for additional surgery. The second surgery was to remove the remaining endometriosis, to help improve my quality of life and increase my chances of conceiving naturally.

The surgeon removed what he could, but endometriosis was also in areas close to nerves and as a result I continue to suffer with severe pain. There is a risk with multiple surgeries for endometriosis – it can reduce ovarian reserve – and despite the severe pain I am not about to rush into another surgery.

Coping

I have also been diagnosed with fibromyalgia – endometriosis likes company. Painful bladder syndrome, pain with bowel movements, systemic body pain and chronic devastating fatigue are all in the mix too.

Right now our plans to have a baby are on hold. I rely on strong pain medication to get myself out of bed and to work every day. It is important to become a good self manager while living with endometriosis. You need to make changes to your diet to help reduce inflammation. You need to make sure you take some gentle exercise to keep the body supple, and you need to become an expert patient.

It is all about doing your best to have a “normal” life while living in chronic pain. You must use all the tools: heating pads, regular and appropriate prescribed pain medication, magnesium cream and baths, gentle exercise and acupuncture. I take support from family, friends and my husband to help me cope too.

My hope is that women will not have to wait for a diagnosis. It’s currently 9 years in Ireland. I wish for a day where we have access to excision surgery from the initial diagnosis stage, knowing that repeated surgeries can lead to complications and reduced fertility. It is essential to have one surgery done right.

To join the confidential Facebook support group send an email to info@endo.ie. For more information on the condition, visit www.endometriosis.ie.

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About the author:

Julie Ronaghan

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