A year ago today, on my birthday, I was diagnosed with Endometriosis, after 11 months of agonising pain, hospital visits and despair.
I naively thought that this diagnosis would bring a ray of light through the fog that was pain medication, absence from work and illness. I thought that with a definitive diagnosis, I would be led, hand in hand, towards a ‘cure’ or efficient treatment. I thought the “We’ll give this a go” attitude towards my healthcare would cease and a lightbulb moment would precede a concrete plan to recovery.
I was wrong.
It has taken a lot of energy, all of myself, to get to where I am today. It has felt like a never-ending path of painkillers, contraceptive treatment and doctor’s appointments.
Since being diagnosed, I have registered with a new GP Practice. I now see a GP Dr regularly who actually specialises in this area of women’s health. I have been referred to a new specialist, one of seems to understand where I’m coming from and empathises with just how debilitating this illness is! I have tried several different methods of pain relief. A short list looks something like this; Tramadol, Diclofenac, Naproxen, Oramorph, Co-codamol.
Thanks to a fellow Endo sufferer who I found on Twitter, I requested a prolonged release Tramadol, which seems to have less side effects which means I can at least try to have a normal day.
After I had my surgery, I was advised to try and prevent the endometriosis from growing back and the best way to do this is hormone treatment in the form of conttraceptives like the pill etc. I started the Depo Provera injection in February 2015 – I went from generally ok to suicidal in 2 weeks. I didn’t have a second injection.
I visited my consultant, the surgeon who did my laparoscopy. He suggested trying the Cerazette pill. (You will notice, there’s not a lot of confidence behind the treatment suggestions at this point.) This progesterone only pill didn’t work. I bled irregularly, for days at a time, heavily. I was in pain everyday. I ended up back in hospital. A doctor in hospital implied I was seeking stronger drugs- I was not dependent on drugs- I was in pain every single day. I was exhausted, drawn and no longer recognized myself.
I was referred to Pain Management. I had acupuncture a couple of times and a woman spoke to me about mindfulness and breathing techniques. How is breathing supposed to help me? I resented this. I couldn’t focus my thoughts for more than a few minutes, how was I supposed to focus and meditate? I was discharged shortly after starting this course, following 2 missed appointments due to absence. I was ill and couldn’t get out of bed.
I was miserable. I couldn’t live a normal life, my job suffered, my marriage suffered and the doctors were supposed to help me, supposed to know where to go from here.
This is when I changed doctors. I stopped taking the pill. Why take something that clearly wasn’t working? My consultant decided it was best to discharge me if I wasn’t willing to take the pill he’d suggested.
My new Dr referred me to an IVF specialist in Sheffield, and prescribed me pain relief that reflected how strong the pain was. He understood.
My new consultant wanted to start me on a hormone impant injection; Zoladex. I was hesitant about this as I’d read online that there were a lot of side effects. But I was at the end of the line, running out of options. I had the injections, they hurt, and my post-zoladex bleed was horrendous but I haven’t had a period in 3 months. I haven’t had pain in 3 months. THREE. MONTHS.
Don’t get me wrong, I’ve had discomfort, I’ve had bad side effects, but it’s the lesser of 2 evils.
Today, on my 25th birthday, I’m living my life, I’m working, I can live and love and laugh, again. It’s been a long, long road, and there’s only more to come.
I can only thank my family, friends for all their support and kindness over this last year. Thank you for understanding, I can only say sorry for my absence these past 2 years, my new year’s resolution is to attempt to make amends and reconnect this year.
My husband has been so, so supportive. He’s been my rock and full of understanding and patience. I don’t know what I’d have done without him, I’ve been so lucky.
And finally, to my new GP and specialist consultant. You have restored my faith in the NHS. I’m very grateful.