I have endometriosis, adenomyosis and poly-cystic ovaries.
At 12 I saw my GP because my periods were so heavy and so painful I couldn’t cope.
I’d have to wake up numerous times during the night to change because even super
tampons and pads and towels weren’t good enough. I could barely walk from a few
days before to a few days after, the pain was so bad. My mother said it’s because
I’m young, it’ll get better. My GP said I’m young it’ll get better. I was offered nothing.
I remember crying in year 8 French class because I wasn’t allowed to go to the
nurse and I wasn’t allowed to go to the bathroom for a second time, even though I
genuinely needed to change twice in that hour, and I was in so much pain.
Pain and hormones mean it’s so difficult to control
emotions, especially when you're 12 and no one cares.
I think I was 13 or 14 when I got a scan that showed polycystic ovaries. I was told
there was nothing they could do, it was an explanation I guess, but nothing to help.
I was told I’d probably struggle to conceive children, but there would be drugs to help with that if I need them. So even as a child my fertility was deemed so much more important than my pain and suffering. It took until I was 16 to be allowed to go on the pill. That did help a bit, with the bleeding at least. I still had cramps though,
most of the time, so I was diagnosed with Irritable Bowel Syndrome. The tablets for that made me
so ill, I was convinced that wasn’t the problem, and I recognised the pain of period cramps.
Obviously no one believed me.
My parents and my doctor all called me a hypochondriac and to get over it. My mum told me it was just hunger, my dad told me it was because I didn’t eat enough fruit. The nurse than came into school to do our lecture on periods said that exercise cured cramps. It doesn’t, it makes them worse. Maybe it actually helps other people, I hope something does, but sometimes my cramps are so bad I can’t even sit up by myself. I constantly try and keep an active lifestyle, regularly I just can’t because of the pain. Exercise does not help my cramps, I’m please if it helps others, but it makes mine much worse. Not that that nurse, my mum, my PE teachers or my doctors believed me. There’s a theme here, no one believed me, at any point, and everyone told me to stop exaggerating and work through it.
When I started work it caused so many issues. My first job, in a care home, called me in a few times over my absences, I could explain the symptoms, but I couldn’t give a diagnosis, they called my explanations excuses so many times. I felt like I had to just take it, it was a professional job for real adults, I was 18 and not really capable of openly disagreeing with any authority figure. This continued throughout my working life, never kept a job too long, eventually I’d be let go, sometimes they admitted it was due to my absence, other times they tried to cover it by making up a reason that didn’t really make sense, but I was also too tired to fight it. Luckily I now have a job with a very understanding manager, but my probation was still extended due to high absences, and I have also missed out on advancement opportunities for the same reason.
At 24 I was finally referred a gynaecologist. She suspected endo immediately and I was booked in for my first laparoscopy. I was told small amounts of endo were removed, and it would be unlikely to grow back. I still don’t know where it was removed from or if it was ablation or excision. I was still in pain after the surgery, but I wasn’t allowed a follow up with the gynaecologist and my GP didn’t believe me as the letter said it was unlikely to go back. I then broke down crying to a different GP who agreed to refer me to a different gynaecologist. This new consultant said it was very unlikely to have grown back but did agree to give me another laparoscopy after me and my mum, (who I brought to the appointment expecting this would happen) insisted. More endo was found and removed, again I don’t know where from or how it was removed. I was still in pain a few months after this second surgery though. Again my GP refused to believe me, told me it was all in my head, and refused to refer me to an endometriosis specialist.
I spent years in bed, on strong painkillers including tramadol and oramorph. They make me so nauseous, even more nauseous than endo. They mess with my head and stop me thinking straight or being able to drive. They make me hot and sweaty and itchy. It’s no way to live. I’d go to the Emergency department at QA or Southampton, most doctors would accuse me of being dramatic and I wasn’t drying so needed to leave. Some doctors checked me for appendicitis and when that came back as fine, they’d discharge me. I don’t blame them, there wasn’t anything they could do, but I couldn’t cope with the pain.
When no-one believed I was still in pain after my second surgery and I was denied access to an actual endo specialist I went private. I earn minimum wage, going private was a difficult decision and I’ve had to make a lot of sacrifices to do it, but it felt like my only option. I was referred to Mr. Guyer at Spire Portsmouth Hospital by a lot of the girls on Endometriosis south coast. That decision was actually life changing. He believed me straight away, and said it sounded like adenomyosis, which would explain the pain after the removal of endo. He sent me for an MRI and put me on zoladex, (an injection that causes chemical menopause,) both of which appear to confirm his theory. The zoladex, despite the terrible side effects, is the only thing that has ever helped with the pain. I will be having a hysterectomy, which is the only known treatment, as soon as I am able. Unfortunately, due to covid this has been pushed back a few times and I had to go without zoladex for a few months, which left me in horrendous pain again, but at least now I have a plan. I am 27 years old an I am looking forward to major surgery that will stop me being able to ever have children, but if it helps with the pain and gives me the opportunity to actually live my life rather than staying in bed on painkillers then I can’t wait.