A mis-understood and mis-diagnosed condition Endometriosos

by Miss Joanna Reilly
(Lytham St. Annes, ENGLAND, UK)

This is kind of personal and no one knows about it apart from my consultant and my mother, I'm a very private person in general and due to the nature of the information I don't share it with anyone; however, because it seems to FINALLY be getting sorted, I thought if my story was published it may be of some benefit to other sufferers...

Incidentally, i have pictures should you require them. Please feel free to get back in touch with me should you require anymore information.

When I was 11 years old I started my periods. I had just started High School (the same week!); however I was excited at the prospect of finally becoming a woman- my mother had told me all about the monthly cycle and I wasn't apprehensive at all, I felt grown up as I was the first to start amongst my group of friends.

I remember going to the GP for a general checkup; he asked about my general health and I told him about my new 'monthlies', he seemed concerned that my periods were lasting up to 4 weeks though didn't suggest any help, he just said they would "sort themselves out"

However, as time went on my periods were starting to last anything between 2 weeks up to two months, not only were they extremely irregular and came without warning; they were also very heavy- i became anemic and was given iron injections on a fortnightly basis.

I would bleed constantly, having to change sanitary protection every half hour- schooling was impossible, it resulted in me having to have lessons at home with a tutor- I was only 11.

My GP was worse than useless; he prescribed the contraceptive pill( i was only 11!)and I was sent into hospital for 2 'D+C' operations, I was put on a ward with women that had had abortions, all they found was I had a "hormone imbalance" and there was nothing they could do. Even my consultant said in 20 years practice he'd never known a young girl to bleed so heavily and for so long.

I felt like a freak, I lost touch with my friends from school, because of being constantly prescribed 'the pill' my weight shot up to 13 stone( i was still only 12) my mum was constantly washing bed sheets and I became a hermit. The pill didn't help apart from easing a little of the pain, I had a period that lasted 3MONTHS, I didn't talk to anyone not even my mum, she was going through an acrimonious split from my father and I didn't want to burden her anymore.

I became agoraphobic due to being scared of going out in case I bled on my clothes (it happened in the middle of M&S!!), my mum was at her wits end and even sent me into Boots for some waterproof pants intended for incontinent sufferers. It was a horrendous time for me, when I should have been enjoying my teenage years.

Time went on, to gain some sort of 'normal' life i began to abuse the pill, taking a few a day, just so i could leave the house. I felt no one would ever love me if they knew my condition, so I hid it from boyfriends and pretended everything was fine. The doctors were useless- even though they hadn't investigated my condition they just suggested a HYSTERECTOMY! I WAS 15!!!!

My periods stopped completely when I was 20, probably due to constant abuse of the pill, I didn't care what harm I was doing to my body, I just wanted to live a normal life. I hated it when friends said when they were due to 'come on', I had NEVER known that feeling, I'd NEVER had a regular cycle and felt angry when they were upset because their monthly had lasted 4 days!!! If only they knew, but I continued to hide my secret, feeling a failure to myself and to partners as I didn't know if I could have children or not.

In my 20's, I threw myself into a career of modeling which was ironic, as when at school I was called 'fatty' due to my weight problems as a result of my medication. My teachers expected me to go to university as I was in all the top sets and a very gifted pianist.

Looking back, I think I chose modeling to prove to myself I was attractive, because all through my teenage years I felt like a freak of nature.

Life went on, relationships came and went; then when I was 29 I met someone who changed my life. His name was Neil Airey, he was a local pilot, we fell in love and for the first time I started opening up to someone.

One day, as I was taking my medication, Neil caught me and asked why I was taking the pill when he so much wanted us to have children, I broke down in tears and told him everything, expecting him to shun me and think I was weird and dirty as that is how I felt.

Amazingly, he was wonderfully supportive, for the first time someone was listening to me, Neil was astounded I had been prescribed the pill for so long, without ever having health checks including blood pressure, smear etc and said there was NO WAY he would have me suffer anymore. He then promptly booked me in to see a private consultant.

After 22 YEARS of suffering, self-loathing and sadness, I was diagnosed with Endometriosis, which I had more than likely had from the age of 11, though how it had gone undetected is anyones guess, I wasn't angry that the Health Service had failed me so much, I was relieved my condition had a name and I wasn't a freak.

Consequently, I'm now in the process of being treated for both Endometriosis and Polycystic ovarian syndrome, next month I will be having laser treatment to cauterize the conditions(this could have been done YEARS AGO) which will result (hopefully!!!) in me starting to enjoy a reasonably regular cycle- the 1ST TIME IN MY LIFE. Although Neil and I separated, I firmly believe it was due to meeting him and him telling me EVERYONE (including me!) deserved the right to a decent standard of life, that led to me becoming assertive enough to demand explanations and treatment as MY RIGHT.

What I want to share with other women is that you MUST demand treatment, ignore so-called professionals who say they cant help- they are just being indifferent.

EVERYONE is entitled to a decent standard of living, and as Endometriosis takes on average 7 years to diagnose- if you are suffering with erratic periods and/or chronic period pain, don't rule this very much misunderstood condition out. KEEP asking. KEEP demanding. KEEP going... YOU ARE NOT ALONE.

Joanna Reilly