Guest post by Vicki Shattock
I started my periods at primary school, age ten, and they were excruciating from day one. I went onto the pill at 14 or 15, but wasn’t sexually active until I was about 21, when the pain became unbearable.
At 24 I was finally diagnosed with endometriosis and it was initially burnt away. Back in 2004 I had no idea this was the worst thing for it, as all it did was burn off the surface, and that excision surgery was really the best option.
I had a further three surgeries – some of which were excision, and some where doctors said they didn’t find any endo, despite me still experiencing heavy bleeding, pain and extreme fatigue every month.
Then, in 2014, I had another laparoscopy by a top endo specialist, who diagnosed endometriosis, adenomyosis and fibroids. He said the only option was to go on injections to put me through a temporary menopause and stop the active endo for a few months. These were awful and I had terrible menopause symptoms, but my doctor refused to let me go on HRT.
I was learning slowly that endo was a totally underfunded and under-researched condition, and I have spent so long fighting to be heard. As the injections again didn’t suit me, and neither did the pill or the coil, my surgeon assured me a hysterectomy would then be the answer, as the endo was not that widespread and my uterus was bulky and ‘toxic’ (his words).
After four years of deliberation, I chose this option. In 2018, at the age of 36, my hysterectomy was performed by the same consultant. I put my total trust in him. Immediately after surgery I was in agony. My whole left side hurt, all over my pelvis and down my leg, and I was having the most incredible stabbing pain up my bum. I wasn’t treated nicely by the nurses on the ward, and this pain has increasingly got worse over the past three years.
I spoke to two further gynaecologists who assured me this wouldn’t be endo as my hysterectomy had found one small spot of endometriosis and fibroids, but not adenomyosis. The consultant who did my hysterectomy discharged me there and then, and I asked for a follow up appointment. He said I’d made the best choice and the pain would settle. It didn’t.
I have been extremely depressed, almost suicidal, anxious and made to feel like the pain was all in my head. Some days I found walking unbearable – my left leg would feel like it was dragging. I’d be constipated for days, unable to sleep, and so fatigued every day. My bladder would have involuntary spasms, and I’d get period type pains daily, alongside other pelvic issues, which were being treated by a women’s health physio.
I eventually chose to go private during the pandemic, as I just could not tolerate the pain anymore. In October last year I had my first appointment with Mr Morsi at West Midlands, and for the first time in over 28 years I was listened to and taken seriously. Not once did he question my mental health – he immediately referred me for an MRI, but constantly asked whether I wanted to go private or the NHS route. As the NHS waiting list was so long, and I was becoming increasingly more depressed and reliant on painkillers all day every day, my family supported me and I chose to go private. The MRI spotted deep infiltrating endo and I was booked in for surgery, which took place in January.
The build up was such an awful period as I was constantly doubting myself and didn’t know what would happen if they didn’t find a reason for my constant pain, or if one of the risks – ending up needing a colostomy bag or catheter – did happen. I came round from surgery and instantly felt different from how I’d felt post-hysterectomy. I was in pain but I knew work had been done – and I was right! He had found deep infiltrating endo on my utero sacral ligaments, vaginal vault, pouch of Douglas, inguinal ring and pelvic wall. My left ovary was tangled up in my bowel, and my whole left side was stuck down.
For the first time in years, I feel hopeful for the future. I feel positive that I’ll live my life again, but I also feel extremely sad and angry that I was dismissed for so long. I was given no proper follow-up care post-hysterectomy. I wasn’t informed about the menopause – that within three years I would experience a decline in hormones and the menopause would begin, which it now has. I have a lot of work to do. My pelvis is weak and hypertonic, I still get bladder spasms. All of this is from being in constant pain, which has caused muscle and nerve damage. I’m hoping that with work from my women’s health physio, and being able to slowly begin exercise again, things will calm down over time.
All I want now is to support other women in the same position, to ensure they get the appropriate support and care they deserve, and aren’t just told to have a hysterectomy as if it will be a “cure”. I chose not to have children – which I wanted so badly – in order to not be in pain anymore. But in fact, I ended up in even more pain every single day.
You can find Vicki on Instagram @vagin_atrocity