At the age of 13 I was put on the contraceptive pill.
I took the Pill on and off from the age of 13 until about the age of 27/28, I had a couple of breaks. I tried lots of different types to try and get it right, because in all reality it wasn’t doing much for me, plus I suffer with migraines which didn’t help.
During all my visits to see GP’s in the UK not one of them ever referred me to see a gynaecologist. I guess I was convinced that everyone else was suffering like I did and that all women suffered unbearable pain every month, heavy bleeding and feeling just absolutely bloody exhausted all the time. Of course everyone around me just gave me the label of ‘lazy’ because I was always so tired and/or wanting to sleep.
I emigrated to Australia from the UK in 2003, I was 27.
At this stage I still had no idea I had endometriosis. But one particularly agonising period I just knew something was not right, the pain wasn’t easing off with painkillers, nothing was working, it wasn’t getting better. I managed to get myself an emergency appointment with my then GP who immediately told me I needed to go to the emergency room. By the time I got there I was in agony. The Dr’s did all the normal tests, gave me some pain relief and admitted me. I was actually in hospital for two nights, where I eventually saw a gyneacologist who immediately said I think you have endometriosis. I had actually heard of endometriosis as my best friend had been diagnosed years before, but I guess I had never really taken the time to understand it as much as I should.
I was referred to another Gyneacologist, who after operating on me to remove massive cysts from my ovaries, informed me my case was too difficult for her and I needed to see someone who specialised more in endometriosis and laparoscopic excision surgery. No one had really explained any of what was happening to me particularly at this point, it was all very confusing.
My first appointment with my new gyneacologist who specialised more in endometriosis was definitely an eye opener for me and pretty emotional too. He explained more about endometriosis to me and also said he needed to do another surgery to find out more. So, after another barrage of tests I had surgery in July 2006 where my left fallopian tube was removed. The surgeon diagnosed me with stage 4 endometriosis.
I was put on different hormone treatments to try and suppress my endometriosis including Zoladex twice, which was not an enjoyable experience for me at all, although it most definitely helped me with my pain the side effects I suffered did not make it worth it at all. I also went through three IVF cycles which were all unsuccessful.
This time in my life was such a rollercoaster of emotions, what with all the drugs I was being put on, the failed IVF attempts, the realisation that perhaps I was not mean to be a mother and of course trying to understand this disease I had been diagnosed with. I was also far from my family and friends and although I had made friends here in Australia, I felt so very isolated and confused. I worked full time and enjoyed my job very much, but I was struggling so much with fatigue and the pain, I didn’t feel like anyone understood me. I ended up being diagnosed with depression and anxiety and prescribed anti depressants.
I had then had another excision surgery with my specialist in 2009. He again did all the could to help me, but I felt like the amount of relief I was getting after surgery was getting smaller.
So, I decided to do some research and see if there was another ‘endo specialist’ here in Perth. The ECCA website referred me to Dr Krish Karthigasu who has a private practice at Hollywood Hospital and also sees public patients at King Edward Memorial Hospital.
Dr Karthigasu was very thorough and after more tests, again I was told I needed surgery. But this time I was also referred to a bowel surgeon, a urologist and at long last a pain specialist. Before my actual surgery I had to have a colonoscopy and a cystoscopy to check for bowel and bladder involvement. It took such a long time for my surgery to actually be scheduled, I remember being so frustrated and upset, I just wanted, needed this surgery. I was in daily pain and suffering grinding fatigue and this surgery was the light at the end of the tunnel for me. Every day was a struggle and I was having more and more time off work, my life felt like it was on hold.
On February 9th 2013 I had Laproscopic Adhesiolysis, Bilateral Ovarian Cystectomy and Excision of Endometriosis. During this surgery it was also discovered that I had Adenomyosis (referred to as uterine endometriosis because the inner lining of the uterus breaks through the muscle wall of the uterus). The surgeons did what they could to make my quality of life better, but the conclusion of this surgery was that if I required further surgery it would likely be a hysterectomy, oophorectomy, bowel resection and covering ileostomy and ureteric stenting. This means that for my next surgery I will need to be opened up instead of keyhole surgery for them to perform the bowel resection, my uterus and ovaries removed, I will need a stoma bag and a stent in my ureter.
I guess I’m not ready to accept that this is the only treatment option left open to me and even though I know I will not be able to have my own children I am not ready to give up my ovaries and my uterus just yet and put myself into early menopause. What is the point if they can’t even promise me a pain free life or even a better quality of life? I am currently researching other specialists and will definitely get a second opinion before going ahead with anything. So, for now I am just managing my pain as best as I can. I have good days and bad days and even though endometriosis has taken so much from me including my chance to be a mother and my job among other things, it has also given me some absolutely amazing new friends in my life which I am so very grateful for, because without them I know I couldn’t have got through some very dark days.
Women with chronic, invisible illnesses are so very misunderstood and seen as ‘weak’. How wrong people can be because we are strong and we are fighters. There may be days when we can’t even get out of bed due to our pain, but we will still pick ourselves up, dust ourselves off, put a smile on our faces and keep going.
My Invisible Journey by Heidi Rader
Day after day, I fight the good fight.
So I feel as though I’ve earned the right;
to feel weak ……. to feel broken, to leave smiles unspoken.
I’m tired, I hurt. I just need to cry.
For when tomorrow comes, it’s back to my lie.
“You look great”, they’ll say.
But no, not today.
Today I’m a mess, that no-one will see.
Because that’s what it takes, to be strong ……… to be me.