How did I get here?

I’m feeling strong enough to post about how life has brought me here.how-did-i-get-here

The story starts almost 15 years ago when, as a 16 year old, I went to see my GP with awful periods. I had times where I couldn’t stand up because of the pain. My GP put me on the contraceptive combined Pill. My periods were under control to some degree and life carried on…

Five years later, I was in a stable relationship and off the Pill. We weren’t trying to conceive. I noticed that I had not had a period in over 90 days and so back to see the GP I went. I did a pregnancy test, which was negative, and he suspected I had PCOS. I was put back on the Pill to regulate my periods and nothing further was done. I then spend the following 5 years on the combined Pill. endo

Fast forward to April 2012, I had woken up on the morning of  Good Friday and I was in an incredible amount of pelvic pain. The pain had been increasing for a couple of months but I was grieving for my father and I had ignored it. I called NHS Direct (now 111) and explained where the pain was. The nurse on the phone thought that it could have been an ectopic pregnancy and advised me to go to A&E. I waited for hours in A&E to be told I had a water infection and sent home with painkillers and antibiotics. It didn’t feel like it was a water infection, but I trusted the doctors and went home. When, two days later, the pain had not subsided I returned to hospital and was admitted under a general surgeon. To cut a long story short, I had my appendix out 6 days later and left hospital. My appendix was fine, I should have never have had it removed.

I recovered from the surgery and was still getting the pain that I had had before the surgery. My new GP (who was kick ass and awesome) came to do a home visit and it was at that point that she suspected Endometriosis. She referred me to gynaecology  and I went away to do some reading (never google Endometriosis! It is not what anyone who suspects they have it should do!!!). Two weeks later, we discovered that the gynaecology appointments clerk had refused my referral and requested an ultrasound and blood tests. The bloods were normal, but the ultrasound found a hypervascular right ovary (again, learn from my mistake and never google it!). I saw a gynaecologist 2 months later  who listed me for a laparoscopy. In August 2012, I was diagnosed with Stage 3 Endometriosis. I have been on Prostap, a GnRH (similar to Zoladex and Lupron) since January 2013, with occasional breaks.

Since then, I have had a further 3 laparoscopies and each time, one or both of my ovaries have been stuck to my bowel and pelvic wall. The last laparoscopy, in April 2015, was complex and my bowel was stuck to my uterus as well. After having my last lap, I moved my care to a different specialist centre as I was not happy about the care I had received. If only I’d have known how much things would have gone down hill!

I saw a new gynaecologist in September 2015, who sent me for pain management and an MRI. I was still suffering from excruciating pain. The MRI showed nothing and I was admitted to hospital in January 2016 and June 2016. During the June admission, I was referred to see an Endo surgeon. This referral was 16 weeks away and I was suffering. I was taking a huge amount of painkillers and had no quality of life. I had come off Prostap as my husband and I had decided to start trying to conceive. My periods had returned with a vengeance. I was sent home from university in agony, I do not remember driving home. My husband and I decided to pay to see the Endo surgeon privately, to start the ball rolling to get another lap to deal with the pain. In the meantime, I’d been put back onto Prostap, putting trying to conceive on hold.

The appointment with the surgeon was a bit of a blur. I’m not ready to go into the details of it. The surgeon told me that there was nothing that could be done for me, that I had permanent nerve damage to my pelvis and that the only way to manage it was to keep me on Prostap until I am old enough for a hysterectomy. It was one of the worst days of my life…

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