"Endometriosis"

From a young age i had horrific pelvic pain but was told it was normal. In my mid twenties I finally made the call to investigate my pain, I felt my GP Dr John was wonderful, and sent referrals to multiple hospitals.

I was admitted to care of a womens & children’s service in a hospital; from the beginning I told them the pain was so severe my end goal was a hysterectomy and reiterated this in each of my appointments, even though I was aware that this would not cure my endo I was traumatised from a termination a year beforehand, my mental health and chronic pain conditions could not handle the pressures of being a parent and the pain that came with having a period as well as PMDD. I didn’t discover until three years later when I had jumped through all their hoops (pelvic physio, every birth control under the sun, 6 months of zoladex/chemical menopause) that they had not noted my request down. 

Two years after my initial referral they performed a laparoscopy, excising and ablating endometriosis; there was no aftercare, no follow up appointments, no explanation of where my endo was removed from. I felt like I was being punished for having the disease and had to follow up myself for treatment after 6 months of recovery pain and no support.

Last year I sat through an appointment where a young doctor, I recall, told me a minimum of 20 times that I would die young if I had a hysterectomy. 

Last year I presented to emergency at another hospital begging for some relief to my endometriosis/adenomyosis related pain. They instead treated me as an appendix patient and I felt talked down to me when I demanded to be discharged as it seemed they were not listening to me or taking my endo/adeno seriously. 

When I was in my late twenties I presented to another hospital (this was at the first hospital where the women and children's service was located) at the request of the initial hospital who did not have a gyno department and had treated me overnight, and was brutally, I felt, told by two doctors that I could have nurofen and go home as I was drug seeking. It turned out that an internal ultrasound had popped a cyst, but they seemingly didn’t care. 

I’ve listened to doctor after doctor tell me I should get pregnant, go on birth control, I’m too young to know what I want.

I’ve had to fight every step of the way for my treatment; even being debilitated by daily pain I was not eligible for disability support and had to lean on my mental health to qualify.

Last year when I pushed and finally spoke to the head gyno at my hospital begging for approval for a hysterectomy, I received an apology for the dismissal of my pain. To me, though s huge milestone, I’m angry. I believe that I, and not anyone suffering from endometriosis and adenomyosis, should have to be put through the ringer and broken down. I understand the gold standard is excision surgery; not hormonal treatments, not ablation. I feel they should take this disease as serious as it is, because the pain were in daily is debilitating. 

At the start of the year I received a call from a third hospital following up on the referral sent through when I was in my mid-twenties. It has been 4 years. This isn’t good enough.