Back in October 2014 I was diagnosed with an ovarian cyst, after my 6 week follow up, the cyst had grown rapidly and my CA125 Cancer marker had elevated.
My gynaecologist had advised having a salpingo-oophorectomy (that is removal of the affected ovary and fallopian tube) as well as removal of the cyst. I was referred as ‘urgent’ as they were worried there was a chance I may have ovarian cancer.
3 weeks later, I had the surgery and it was then discovered I had Stage 4 endometriosis. The surgeon said he cleaned it up and managed to free my right ovary, as that was stuck down; it was around my bladder, kidney, and all around pelvic areas.
Now, endo was never explained to me…I hadn’t the foggiest what it was or what it meant – all I was offered was the Mirena coil, or hormone therapy.
I refused the coil, but tried a couple of different medicines, none of which seemed to suit me. My pain was flaring up again and I suffered horribly from fatigue and head and neck-aches.
I was getting desperate.
I decided to try and find local support groups and through another online, national, health forum, I was told about FTWW.
Wow – what an absolute Godsend the organisation proved to be…They explained my condition and helped me so much with my fight with the local health board to get the surgery I now knew I needed. Let me explain:
I had seen one of my practice’s GPs and explained how severe my endo was; his response was a real blow. He told me, “You are depressed; I’ll prescribe you antidepressants!”
I asked about the referral to Arrowe Park or Countess of Chester*, as they are BSGE accredited endometriosis centres, both of which perform the “gold standard” excision treatment, only to be told I needed to get funding and he couldn’t refer me. He said he would refer me back to the Wrexham Maelor Gynaecology department, even though I had severe endo and met the criteria for specialist treatment at one of the tertiary centres. It was a waste of time, I felt depressed and it wasn’t to do with my condition but because I was being fobbed off.
However, the ladies who run FTWW did not give up, and battled hard for us. They gave us some valuable information including NICE endometriosis guidelines. FTWW also had correspondence from NHS Wales and Welsh government ministers. They had written to FTWW and said there was a referral pathway for all ladies of North Wales, who had stage 3 / 4 moderate / severe endometriosis; we did not need to apply for individual funding and treatment was accessible to us.
So I took a trip back to see a different GP; she was lovely, but she didn’t have any clue about the specialist centres. I showed her the letter. She said she would find out for me.
A few days later she rang to say I was correct and she referred me.
I was overjoyed, finally I was getting somewhere.
I then saw my specialist consultant this March.
He saw the images of my previous op and said I very much had endo, fibroids – plus a condition called adenomyosis was extremely likely. This is similar to endo but inside the walls of the uterus. One of my ureters (the tubes connecting the kidneys to the bladder) was thick with disease and pulling my kidney out of place. Left untreated this could have led to renal failure, yet the regular gynaecologists hadn’t said a word about it!
Unfortunately, there is no other surgical option available to remove adenomyosis so I agreed to a total hysterectomy, as well as excision (cutting out) of the endo. A hysterectomy wouldn’t have helped with the endo because endo isn’t ‘in’ the uterus, I know that now – but many women across the UK and Wales are wrongly being told that it will cure them. Fortunately, I was able to see a specialist who could remove disease not just organs!
I’m now 3 months post op, and what a difference, I feel I have my life back!! I make plans that I don’t cancel any more, and I go out to places again. My fatigue has gone, my headaches and neck aches have disappeared. The HRT is a Godsend. Plus I’ve come off the anti-depressants, something that should never have been prescribed in the first place!!
So thank you to all of the girls at FTWW. The work you do is immeasurable!!
*Editorial note: Arrowe Park is the established tertiary centre to which North Wales patients should normally be referred.