My first ever surgery was the draining of a cyst in 2004. Fast forward 13 years later and my pain has become agony and I have struggled to conceive. Despite my gynecologist diagnosing endometriosis in an operation back in 2004, for 10 more years I was fobbed off by doctors, or referred to the wrong specialists (urologist, gastroenterologist, psychologists, you name it!) Well now, I’ve finally got my excision surgery booked in, and here’s how…
Fobbed off by Doctors
I remember once going to a doctor being in agony to eat or go to the loo. He said ‘I think you’re well enough to go back to work’ and refused a doctors note. The next day, I was crippled in front of my class (I was a teacher at the time) and ended up leaving half way through the day. I saw a different doctor (coincidentally a female one!) who signed me off for 2 weeks immediately. (I must do a whole separate blog on this!)
My Laparoscopy Referral for Endo
Last year, I finally got referred for a laparoscopy. This was mainly due to the fact that I had been trying to conceive and could not. So, let’s just get this straight….it’s ok for a woman to be in chronic pain, but not ok that she can’t conceive?! Anyway, I finally got my long awaiting laparoscopy in 2016, 12 years after my first suspected diagnosis. It confirmed stage 4 endo (see stages of endometriosis).
At my follow up appointment, and after a traumatic miscarriage, I went to see my specialist. He emphasised the risk of operating and suggested….guess what? Trying to get pregnant again?!?!
Pregnancy does not Treat Endometriosis!
Here’s my problem guys – pregnancy is not an answer to endometriosis. Quite often, after giving birth, endo symptoms return. Not only will the woman be in chronic pain, but she will also have a baby to look after. What’s the alternative? Hormones? Pump your body with hormones that throw your body into menopause or make you depressed? I don’t think so!
How I finally got my Excision Surgery booked in with Ediosagie
I posted on Facebook, in the hope that I could both raise awareness and seek advice. It was a bold move, considering the personal nature of the disease…
Thankfully, a friend was listening. A teacher who I used to teach with sent me a message to my inbox, saying ‘I had endometriosis Amy, you need this surgeon, and this is how you get him!’
The surgeon that my friend Cath recommended was Ediosagie at St Mary’s in Manchester. She recommended for me to book a private consultation with him at the Alexandra BMI. The consultation was £200, and the best £200 I had ever spent! Finally, someone was listening to me, acknowledging my symptoms and giving me hope.
‘Your endometriosis is very bad, Amy’ he said sternly. ‘I know!’ I replied, ‘I can tell from being in agony!’ He told me that he can fix it, but it was going to be two surgeries. After the shit I’ve put up with for the last few years, I’m up for anything!
Dr Ediosagie wrote a follow up letter to my GP, and I got referred on the NHS, so I can get this excision surgery with him for free. I went to see a different GP in my surgery at the peak of my agony and she wrote to St Mary’s asking them to expedite my surgery. My private consultation was in February, and the date of my first laparoscopy with Ediosagie came for 26th April.
If you are in the same situation as me, living with stage 4 endometriosis and the severe symptoms, get a private consultation with Ediosagie at the Alexander BMI, and then get referred through the NHS. We all have patient choice, and deserve endo specialists, not just a regular ob-gyn.
Of course, I’m writing this as a patient in UK with access to the NHS (National Health Service). My heart goes out to US #endosisters who cannot get insurance to cover endometriosis excision surgery and also to those in countries where excision surgery is not so readily available. Love to all #endosisters.