left to wait

I have been waiting a long time to find out where my endo has spread to. Referred to the consultant in December 2016, I didn't see the main consultant until I paid to see him in March 2018 after I had only seen his registrar who disregarded what I said and said unless I had tried Mirena coil again and the menopause injection he wouldn't do surgery.

I was told in March they would put me on the waitlist for a diagnostic lap to see where the endo has spread too. in July I saw my consultant again and got MRI results and he confirmed I was on waitlist. but would stay at the top of the waitlist until My allergy specialist gave me the all clear. In December they still hadn't heard from my allergy specialist who was meant to write in August and again in September. January I got a copy of this letter and sent it to my gynae consultant. he then sent me a letter to say how they had heard from my allergy specialist they would put me back on the waitlist.

I hit the roof back on the wait list you mean I wasn't already on the list. I spend hours calling various people in the hospital for the next month. End of January I had, had enough not treatment or surgery and had been waiting for the last 2 years for any help. I paid to see my consultant privately again and he said I could have a drug called Provera, because the allergy clinic had tested me with this med and it is the same drug that's in the injections. so should do the same thing and put me through menopause but I have to take drugs 3 times a day.

My consultant confirmed that while he requested I go on the waitlist and stay at the top until they hear from my allergy specialist they didn't do this. He said if your at risk of going over the government guidelines while awaiting tests of any sort they take you off the waitlist and put you back on the list when they have results. the issue with this you don't go back to where you would have been on the list you go to the bottom. for me and my local hospital diagnostic waitlist is about 7 to 8 months. I had waited
15months from the first referral to get put on the list. dec2016-march2018
10months from being put on the list to allergy specialist writing to the consultant.
then I was looking at potentially a further 8 months.

I got very upset and kept chasing every person I spoke to gave me a different answer and different expectations of when I would eventually get a date. I knew there had been other patients who had not waited as long at all same doctor same hospital. One lady had been seen by consultant end of Dec and surgery mid-JanJan less than a month wait. because she was marked as an emergency.

I explained that I have allergic reactions to whenever my body is under stress and that every month my endo gets worse and my reactions are getting worse. with every ovulation and period, I have reactions. they can sometimes be so bad they affect my breathing and I end up in Resus having adrenaline this can be very dangerous, what part of that is not emergency, my endo could kill me if it causes an allergic reaction they can't stop.

Next couple of weeks I felt like I was talking to brick walls then suddenly I get a call they have a date in less than 2 weeks time. I couldn't believe almost a year of waiting I will know how bad it is and then they can plan the treatment operation. I have only 2 days too wait then its big op day. its finally feeling real and im getting nervous about knowing the true extent of my illness.