Thursday, February 11, 2016

The Endo Poster Girl

Earlier this week several of my Facebook groups (I follow MANY endometriosis group pages) exploded in the news that Lena Dunham (from Girls fame) will be taking time out because of an endometriosis flare up. The explosion came about after CNN health reported an entirely UNTRUE report on endometriosis. 

In the past 24 hours there has been a flurry of people advocating for the truth and CNN has not retracted but changed the wording in their article. 

I won't share the article as I do not believe it benefits the unknowing girl who stumbles upon it via my blog, but I wanted to make a point about one incorrect myth that featured in the article and is the same one that has the majority of women up in arms. 

"A hysterectomy CURES endometriosis"  WRONG... it does NOT cure this disease. 

I have Endometriosis. 

I have also had a hysterectomy. 

We shall let that dangle in the ether while we absorb the incorrect facts of the article and my choice to send my uterus packing.  

It took me four years of extreme pain after my excision surgery in 2011, many mental blocks and an avalanche of emotions to come to terms that for *ME* a hysterectomy was my only choice. 

I took birth control pills and spotted daily for 6 months. 

I went natural and bled uncontrollably for 6 out of every 19 - 23 days. 

I did NOT experience a natural 28 day cycle. 

I was in unbearable pain and experienced a myriad of side effects toward the end that I could see no other option but to go to the extreme. Remembering though I already underwent two excision operations with ZERO relief for my pain. 

I walked into my specialists office and asked for a Hysterectomy with excision of endometriosis. 

My surgeon remained hopeful that with skilled excision of my endometriosis I would hopefully not have a reoccurrence. 10 months later I have not at any stage taken a painkiller specifically aimed to relieve my pelvic region. I have experienced some pain and some I have a niggling feeling is perhaps a sign that my endometriosis is returning - however on a whole I have my life back. 

It turns out that I didn't just have endometriosis - I also suffered from Adenomyosis (I like to think of  Adeno as Endo's beefed up cousin on steroids!) 

Hysterectomy CURES Adenomyosis. 
Quite simply because Adeno is endometriosis INSIDE the walls of the uterus. Without the uterus contracting (& trying to birth itself every single month) we are free of pain. 

Except for Endometriosis. 

So why did I do it? Why did I make such a radical choice when at the time I didn't realise that my main symptoms of the past four years were actually caused by the Adenomyosis and more than likely masked the pain of Endometriosis? 

It was desperation. 

I sat with a beautiful friend 5 months before I saw my Specialist and she asked me - can you live with the pain for another 18 months? (at that point I was still stuck with my head deeply buried in the sand pretending that one day the pain would dissolve & that if I could wait just one more year it would suit my family with recovery) 

In the end - the fear of another 18 months and likely 22 cycles scared me MORE than the entire list of possible side effects from a Hysterectomy.