Llinos’s Story

llinosLlinos Blackwell, aged 39, from Rhyl, North Wales.

The end of my story is a happy one.  That is, hoping that this is the end of a ten-year-long saga. How healthy I feel today is all thanks to the amazing work and support of FTWW, the ladies who run it having ‘found’ me in another endo group and inviting me to join FTWW in its infancy (fewer than 30 members when I joined in March 2015 –  over 270 today).

The saga actually starts as far back as my first period at eleven years old. I suffered years of extremely heavy and painful periods along with painful bowel movements during periods. I always thought this was normal. The only person I talked to about this was my mum, who always told me that these things were normal as she too had these issues. In my twenties my periods gradually slowed to a complete stop but I then started experiencing these period-type pains throughout the month along with back and leg pain and painful intercourse.

I eventually talked to my GP about this in 2006. He signed me off work for 5 weeks with ‘malaise’, feeling low, and offered me anti-depressants, which I refused. I knew that my constant pain wasn’t normal, but had no idea what was wrong. I was referred to a gynaecologist due to my lack of periods. Internal examinations were so traumatic that my GP used to prescribe me sedatives to get me through the appointments. Still no mention was made of endometriosis.

By the time someone mentioned endometriosis, I’d seen four different clinicians. I’d never heard of endo and had to ask for it to be written down.

In my first appointment with a gynaecologist I’d previously seen, but hadn’t mentioned endo, he told me that if it was endo, I had two choices – to have children or to have a hysterectomy. “Use it, or lose it!” Neither option sounded right to me, and I’m glad to say that I agreed to neither. I had laparoscopies, with diathermy (burning) in 2009 and again in 2012. I assumed that I was receiving the correct and best treatment. Why would I question the person I assumed was the expert? I knew, however, that diathermy wasn’t a cure and had resigned myself to be in a cycle of having surgery every three years.

Around September 2014 the pain gradually started returning, so I started posting in some endo support groups on Facebook. Many of the groups made me question myself as to whether the pain was really as bad as it felt. There seemed to be a lot of competition amongst the ladies about whose pain was worst, who had the highest stage of endo, and so on – but no real solutions were offered. Thank goodness the FTWW ladies ‘rescued’ me and helped me to understand my symptoms.

FTWW is an absolute lifesaver. The support from all of the ladies in the Facebook group is amazing, practical, realistic and non-competitive. No topic is off limits.

It is only because of FTWW that I found out that excision – cutting out the disease, and not diathermy, was the gold-standard treatment for endo. It is only because of FTWW that I found out about BSGE Endometriosis Centres. It is only because of FTWW that I found out about the referral pathway for North Wales ladies to Arrowe Park Hospital. It is only because of FTWW that I was able to give my GP the facts about this pathway and to ask for a referral. It is only because of FTWW that I was referred to the specialist centre, had excision surgery and now have my life back! It is only because of FTWW that my husband and everyone around me have their wife, sister, aunty, friend, and colleague back!