KJs Hysterectomy Fund

Hey so, I'm KJ. I'm 24.

I have suffered with abdominal/pelvic pain which has gradually worsened over time, for almost 13 years now.

After making a comment about my pain worsening and being in an unusual spot, I was referred for my first ultrasound scan.

My scan picked up a few ovarian cysts but never anything of note (I did have a cyst that was the size of an orange which popped).

My pain began to become more intense.
Ultrasound scan after ultrasound scan and clinician after clinician pressing my abdomen, the doctors had no idea what was wrong with me.  

At one point my GP advised me to go to A&E if my pain got more acute over a weekend and of course, I ended up going, being assessed and then told they thought there was nothing wrong with me.

Over the course of time between August 2017 and when I was finally taken seriously and allowed to have an MRI done, I went from having cysts and nothing else, to having stage 4 deep infiltrating endometriosis and adenomyosis (within the muscle of the womb), with adhesions and rectovaginal endometriosis - which now is sitting on my sciatic nerve - meaning that simply opening my bowels, urinating and even eating cause me horrific pain.

In this time I have also been on so many different medications - if you think of something pain relief related, I've probably been given it, and had side effects. The same goes for hormonal treatments.

The main thing about my illness is that it is chronic, often debilitating, and makes me incredibly ill when I have a flare up (for reference: chronic fatigue/inability to move/eat) there's never any point in me going to hospital as they DO NOT DO ANYTHING.
no pain relief no nothing.
(Friends who I have stayed with for concerts/events/etc are well aware of how unwell I become).

I am currently unable to work due to the severity of my pain and the related issues alongside it.

I have been on injections for over two years that "turn off" my ovaries and of course, I cannot be on these for much longer due to the risk to my bones.

I am well aware that the only thing that will remove the adenomyosis is a full hysterectomy, which as someone that has gender dysphoria around biologically "female" things, I have actually wanted since I was 8 years old.

I have talked through a hysterectomy being the best course of action for my condition with many specialists and GPs and I would be looking to have this done privately.

I have been told that under the NHS, due to my age, that the specialist at Pinderfields hospital (my closest endometriosis centre) would not do a hysterectomy on me, but would do a laparoscopic excision of the endometriosis adhesions sticking my womb, bowel and bladder together.

He said that I would expect to have around 5+ surgeries of that kind, then ultimately, a hysterectomy.

I had excision surgery in October 2019 which had zero effect on my pain/condition progression.

As a trans person, the gynaecological side of things is a minefield and an uphill struggle.
I am unable to carry on much longer as this is all taking a massive toll on me mentally and physically - I currently have no quality of life and ironically the thing that gives me the most gender dysphoria is the thing in my body that is *broken* so to speak.

As you can imagine, my mental and physical health are suffering severely and I'm now struggling to do the simplest of things - so am wanting to try to get surgery ASAP and am needing to have some money ready.

Of course, it is a big surgery and does cost quite a large amount, my best bet is hoping that fellow endo siblings and other friends that have seen my journey are able to help get me to where I need to be.

I have been quoted £6.4k for surgery (this includes all relevant tests and outpatient care, plus all my prescriptions), getting to this amount is ambitious but every single thing helps.

Thankyou for your support

KJ

xxxx