"Hysterectomy as a treatment option"

Eventually, I was diagnosed with endometriosis back in 2016, via laparoscopy. I used Visanne for a couple of years post surgery and that worked great to relieve all PMS and Period symptoms, I basically had no cycle for almost two years. Once Visanne stopped working I had to go ahead and try other things. I tried simply having my period and allowing my body to try things out without treatment - no good, very painful periods. I tried Implanon (constant bleeding and cramping), 2 other oral tablets(the same, constant spotting and cramping and painful abdomen) and I eventually landed on Noriday. It didn't really reduce the pain or heavy bleeding and clots, but I had a normal cycle again without spotting. I couldn't stand anymore trials and my GP at the time agreed that we'd tried enough and we hoped that maybe in the future it would improve!

It didn't, unfortunately. My periods got more and more painful as time went on! There was lots of other health issues cropping up too... I've now had diagnosis of PTSD, Treatment Resistant Depression, Anxiety, Hypertonicity (suspected to be caused by the PTSD), severe food sensitivities, year round allergy issues with exacerbation during 6 months of the year and chronic daily migraines... so I didn't request a referral from my GP for Gyno until late 2021. Two more referrals went through and I ended up waiting around a year and a half before finally seeing a gyno at hospital. Which seems like a ridiculous amount of time! Disappointing. While waiting for the gyno, I paid for a private specialist ultrasound at medical centre. The doctor diagnosed me with adenomyosis. Which I hadn't experienced before and explained why my periods had become so severely painful. They'd always been painful, but nowadays I have to use celebrex, paracetamol and THC oil, just to feel low levels of pain.

At this point I thought, "Well, I am sort of lucky! I don't want to procreate so they can perform a hysterectomy at the next surgery and that is the only cure for adenomyosis. And it will reduce the chance of reoccurrence of endo too." I'm an ideal candidate for this procedure. I've worked as a Nanny and a babysitter, I know what it means to look after a child and I know that I am not capable of those duties nor do I enjoy them. I have been forced to spend a great deal of my life caring for others (adults and children) and I know what I want from my future - having children of my own does not factor in. My family will look different to the average, they'll be adult friends, my siblings and probably as many scaly and furry babies as I can reasonably manage. My partner feels the same! Now, I also thought, from what I'd heard, that there is still a lot of difficulty to get a hysterectomy if you haven't had any children. It's a big decision and it's irreversible. So I prepared myself for lengthy discussion, resistance and a psychiatric review.

However, the state of things is far worse than I thought. I saw a doctor and I was really surprised that such a well educated person couldn't seem to fathom a hysterectomy as an option for me, even though I'm an excellent candidate. They suggested I have the same surgery I had in 2016, go in, look around, remove endo lesions or any cysts or anything that needs to go, but they didn't think removing my uterus at that point was wise. I told them that with my list of symptoms (including so much chronic pain and mental health issues, etc, etc...) I would much prefer to remove the uterus in the same surgery. Why not? I'm already going under. The doctor still said no.

Disappointed with their position on my treatment, I submitted a letter explaining my situation in more detail. Hoping that with better understanding, surely someone would back the hysterectomy as a good treatment choice for me. It went through the complaints pathway at the hospital. I saw the doctor again in person and spoke once more with them on the phone. They still didn't feel a hysterectomy was appropriate. There was supposedly a meeting held with several gynos present and gyno surgeons where my case discussed and my letter was passed all the way up to Executive Director. I was denied the hysterectomy procedure by everyone. They suggested I still have the surgery and keep trying hormone treatments. I've been trialling Slinda. It has worked brilliantly for the period pain and heavy bleeding. I'm in the second month and I now seem to have no bleeding at all and almost no pain. However, Slinda has caused a noticeable increase in my depressive symptoms - it's a common side effect of progesterone only pills. So I know it's not a long term solution. I'm still on the waitlist for surgery, but I do not want to have it unless a hysterectomy is included. I've reached out through social media and asked for advice and tips. People have said that my hope of receiving a hysterectomy via the public system is extremely unlikely, which is really scary and upsetting. I was given one name of a doctor who apparently is one of the few public gynos who isn't so seemingly prejudiced when deciding whether to perform a hysterectomy for a patient. I am unsure whether I can be transferred over to another public hospital so I can ask for this doctor... but will reach out to their people and see if they can help somehow.

I'm unsure of what to do from here... feeling extremely disappointed by the public health care system and even more specifically, I'm disappointed by everyone who reviewed my case and still denied me a procedure that is appropriate. This feels like prejudice against childfree people and I feel it is medical negligence. It feels cruel and unjust.