I just wondering if there’s anything else I can be doing at this point to expedite surgery for deep infiltrating endo. I have been waiting for 2 years now and my quality of life is diminishing fast.
I have left several messages with my consultants secretary and the waitlist officer, and initiated a PALS complaint. I also visited my GP on Monday in tears begging him to write a letter to my consultant to speed things up. Prostap is effecting me badly and I can’t continue beyond the agreed three months protocol. I am frankly at my wits end.
Is there anything else I could try?
thanks for listening.
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Medicalmenopause
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Absolutely nothing!.. There’s no rhyme, nor reason! There was me and another friend under the same consultant! Well wouldn’t say a friend, but someone I went to school with!
I was diagnosed at 31 in 2015! Had to wait til late 2016 for my ‘priority surgery’ which was major surgery!.. Then I got kept on 3 monthly consultations for 5 years…. My first surgery was major, but only managed to remove half a fallopian.
She was diagnosed if my memory serves me right, 2019! She had one surgery in 2019.. Within the 18 week period. Not major!
In late 2020, I almost died from sepsis! An Endometriosis complication….
In 2021 she cried pain!
I got promised a hysterectomy with total excision in 2021 to have it within the year! Major, major surgery!
She signed for her hysterectomy got it within 18 weeks!.. In 2021
My surgery kept being put off! Was within the year, minimum 2, upto 6! I hit the f’ing roof!….
I was told, no word of a lie, that they deal with the less complex cases first because they can do 5 for one complex case! It’s apparent healthcare is the opposite! It’s not on a for need basis it’s on a ‘oh look, we did 3000 cases this year, can I have more funding!’.. I’d be surprised if most of these people even need hysterectomies, or if they’re just performed for numbers!
So anyway, 1 major surgery, need one major, major surgery, almost died, and now at Tertiary Care because my disease is so complex! There’s no hope for complex patients!…..
You can do what I’m about to do! I have given the NHS an ultimatum! They have 3 options at this point! Either 1) they do the surgery and within a reasonable time frame or 2) they give me every ounce of relevant information in order for me to source a surgeon abroad or 3) I’m going to take a knife to myself and I will leave them with no fk’ing choice but to go in!
I know exactly how you feel! I’ve told the secretary I’ve been having suicidal thoughts on prostap and even that hasn’t made a jot of difference?! What is it going to take I wonder…🙈 I hope you get somewhere
I wasn’t even told I was under tertiary care! All I was told was I’d never be rushed into theatre! I went to my appointments every 3 months for 5 whole years being bounced between Zoladex and the combined pill, with no relief, which I stated! In fact, made me worse, not better!.. To then almost die, to then get promised surgery, to then have it being put off and off and off, til they more or less told me they had no intentions of doing it! Had my care moved! Which I thought would be to another BSGE centre, but nope, I got offered a choice of only 3 other hospitals! Manchester, Birmingham or London! Went with Manchester as the closest! They was my ONLY choices! Went other week and now they’re talking about just taking the womb/cervix and leaving the ovaries! 🤣! Only IF they feel like it like! And a minimum of 18 months! At this point I’m fuming! Fuming! Left hand doesn’t know what right hand is doing! I’ve been taken off all hormonal treatment and can’t have it!.. So god bloody knows! I give up at this point! I just want to go abroad! I’m done with the NHS! Xx
I have recently been in the same boat and unfortunately I had to pull out the big guns. Now I'm not saying be a b*tch but what did work for me to get in contact was to stay extremely firm on the phone - full business woman style do not let them pass you off, be clear if it is having a financial impact and address the issue of quality patient care. Explain that they have not fulfilled their duty of patient care.
It's tough and you have my full empathy, as when you are ill the last thing you want to do is call people up and sometimes you then get emotional and don't get you're point across.
I know they are under stress but unfortunately I have found from experience you must be blunt and refuse to be transferred over take names of people that you speak to on the phone and do not give up. One person you find in that long list of people on the phone will eventually listen. If they say they will chase it for you ask for their contact details and how you can track the progress.
I hope you get the contact and surgery you need soon.
Best of luck, add in: if there is still an issue make a formal complaint and get somebody to proof read before hand again with emphasis on quality of life and patient care xx
You can try nutrition. Research has shown that 80% of endometriosis sufferers get some relief by avoiding wheat and gluten. This is not easy to do without some help. You need a good nutritional therapist like Dian Shepperson Mills who understands the issues as she’s been through it herself. endometriosis.co.uk
You are doing everything right. I am in the same position. I have been waiting 18 months and an emotional wreck with my endo. It affects when I go out and my work now. I got a doctor to write to the surgeon to speed it up which moves me from 3 years waiting to the next 6 months but my surgeon has broken her wrist so it is now another 9 months! I have explained I am willing to travel to other hospitals within my county. I am not sure if this helps or not but it opens up other options. I hope you get moved up the list soon and take care of yourself x
I rang the waitlist back up again today and the health Gods must have been smiling on me because I’ve been given a surgery date of next Thursday!!! I’m in absolute shock right now
hi i am also waiting for the same spoke to the the gp she has wrritten a stern letter to gynae saying its not acceptable can you contact your local mp??? as you say no one gets back to you ever++++ its so fraustrating i am lucky i have great gps keep pushing good luck
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