I don't know where to start, and I apologise if I ramble.I am awaiting a total hysterectomy with excision laproscopicly. My first surgery for endo. My diagnosis was via CT, then MRI of adenomyosis and Endometriosis with bilateral endometriomas and kissing ovaries, with my reproductive system, unusualy, pulled to the right.
Since my referral to a BSGE centre, it has been confirmed that I have a frozen pevis, through a specialist internal ultrasound where they checked the sliding sign.
My first appointment at the centre was with the endo nurse because a poor woman in surgery had required all of the specialist surgeons. I was lucky to see the nurse as the other specialist's patients had their appointments cancelled, some after arriving at the hospital.
It was discussed with the nurse that a total hysterectomy might be the recommended course of action. I am good with this.
I then received a letter from my consultant a few months later to say that he recommended the total hysterectomy and that I start a course of GNRH injections once I have had an udated MRI. I had my MRi in June, and was then contacted to say I would be moved to patient led care, until 2027, where I could request an appointment, if necessary, whilst waiting for surgery.
It is what it is, especially after covid, so I continued managing and coping. Even the bare minimum of being a teacher and a mum destroys me, but 2 years is the wait I was told, so for 2 years I will be superhuman, albeit not enough.
Recently it has got more, so I sent a message through the patient led system to say that I would like to start my GNRH injections, and that I wasn't worried if I had an appointment at all, or if it was phone or video. That was 6 weeks ago.
I am still in pain all the time, but more than I can handle more often now. I am struggling to eat. I have been having soup 1 time a day only for over 2 weeks. Any time I try to eat something with more sustenance, I am either sick or I have upset bowels. Neither of which look properly digested, and you can tell exactly what I have eaten from what comes out. Like it's not even digested properly.
My CA 125 is constantly high. My blood tests show my creatine and urea are high. I get bouts of total excruciating abdominal pain, from front to back and pubic bone to lower part of ribs.
I don't know what to do. My online patient referral system says I already have an active referral in process, so it wont let me do anything else.
I have no money for private treatment of any kind.
I àm losing hope.