So near, but feeling so far

[Macdunc29]

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.

[Tropic]

I am so so sorry. I am in Australia and if you were here I would connect you with my doctor. Hopefully someone in the UK can help you connect with a good doctor. Praying for you xx

[Ess1982]

macdunc you do not have to put up with this least of all wait until 2027! Speak to your consultants secretary see if you can get an app to be seen. Failing that make yourself heard, I had been in a similar situation where I was too polite I didn't want to 'waste' nhs time or resources. Make yourself heard, if you're in agony don't be afraid to call an ambulance. I used to take taxis tothe emergency department eventually I ended up calling an ambulance as I was so poorly. Don't put up with the pain, we are conditioned to think we have to. We deserve better Xx

[EvieJ70]

As ess1982 you do not have to wait. Insist on another appointment with your specialist and tell them everything that you have written. Just because your initial assessment showed you wouldn't be receiving surgery until 2027 it doesn't mean you can't be moved up the list over time. If it is affecting your health and quality of life they can change your priority on the waiting list. Mine was suddenly brought forward when they had to stop my prostap as my blood pressure was at 200 and I was at increased risk of a stroke x

[Lindle]

I don't think A and E are going to be able to help as you have such a complex case and are under the BSGE centre system. Initially I think your GP should be fighting your corner by first giving you appropriate pain relief and contacting the centre. Whilst we know there are delays there should be some priority system where the most complex and potentially risky severe cases should be filtered out and thoroughly reviewed so they can be brought up the list.

CA125 is usually raised with severe endo so that might not be of any immediate concern but the raised urea and creatinine should be taken seriously as severe endo will usually involve the ureters and can lead to kidney failure , with no symptoms. I should go to your GP and get all your concerns recorded on your record and ask them to directly contact the lead consultant at the centre for a review of your case in view of these results.

I would also contact PALS if you are in England and get them behind it.

[Pinkmice]

Hi

Things with endo take an age to sort- Quite a few years back had to make the course

journey after having the big op- My pain levels and resulting pain- the fod issue

with sickness/ etc so do not lose hope.

Try if you can - charcoal can reduce sickness,ginger with-in your diet may help wind

and some of the issues with eating at the moment.

Even now have bouts of illness - been in hospital while on holiday in uk, plus local

hospital. The waiting for things to happen with endo is even with the current situation

long periods of time lapse - months,year,s

Hope you and your partner

Keep safe for now

Big hug from myself