Pelvic Pain Support Network

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chillijava profile image


you all probably know me now and if you dont i did a piece on my local radio show about pelvic pain specifically pne.

i went to see my pain consultant today for a routine appointment and to also see if he could do me an IFR, individual funding request, for decompression surgery as professor robert said i needed this, well i can tell you i was so angry with the response i got from him, it was that he would not refer me anywhere else and would not send in an ifr on my behalf because he didnt think surgery would work and o really got the impression he was totally ****ed off with me, his attitude was appalling and i have now been dissmissed as such, as all i have now is an open appointment.

he was a completely different doctor in attitude since i last saw him before i was on the radio, if he thinks i am going to lay down and die, he has another think coming, and doesnt know me, its a set back thats all, most of this journey i have done by myself and so it would seem thats the way it is going to be again


15 Replies

I think you should outright ask him if he heard you on the radio, and if so if it influenced his behaviour. Obviously we need stuff from these people but jeez, we cannot let them d*** us around to that extent, wow.

chillijava profile image
chillijava in reply to Megaera

its not worth the hassle it will only inflame things more and there is nothing he can do anyway.

it wont stop me searching for answers it just means its back to paying for things myself, i will have to find the money from somewhere.

its really hard to take though, that the nhs has failed me once again, i have paid into it all these years to get nothing back in return and when i really need them they have let me down


Megaera profile image
Megaera in reply to chillijava

I've met a guy just like that. An NHS consultant in a field with limited resources where all the patients are desperate for help. After years of that these guys turn into little emperors. Power games like going through the first ten minutes of the consult without making eye contact. Completely power drunk. It just made me look down on him.

kalecolbe12 profile image
kalecolbe12 in reply to Megaera

It's interesting because I'm from the UK but I've lived in the US for about 39 years and it's very different here in the US even though we don't have an NHS some of the insurance is really good and we do have co-pays but it's really nice how the doctors a very personable and really try to help and that's across the board most of the doctors I've gone to have been like this in all the years I've been here one or two maybe were little emperors but apart from that it's been really good.. I am so disappointed to hear that the doctors are not very forthcoming there I remember when I I was growing up in England the doctors were fabulous back then I don't know what's happened

Peanut67 profile image
Peanut67 in reply to chillijava

Write to the professor personally and he will take you on himself for treatment as he considers it's warranted

yes and thats exactly what i think, well i have managed on my own for the past 6 years to get a diagnosis etc i will continue to do so, it so annoyed me that every time i asked a question or asked about other treatments, he just dismissed them as not working, when we all know what works for one may not work for another and vice versa and it is a matter of trying whatever you can to get relief.



You keep plugging away and don't let a doctor like that even cause a flare up. Not worth it. I have been through the same **it here in the States more than once. I have only 2 doctors that I see that I completely trust and the funny thing is. They know they have done all they can to help me but they are that caring that they won't dismiss me. I thank god for that everyday. You are an inspiration to all of us for going on that radio station and talking about this dreadful condition. It let's those doctors out there who know nothing about this condition that there is such a thing, that it's not in our heads and it destroys lives. So, I thank you. I think your doctor was wrong for what he did and very unethical to all medical oaths that they must take the day they graduate from medical school. I think a lot of them forget that oath once they are practicing for a few years. It's a shame. So I commend you for what you did. You shouldn't be punished for a great thing you did. Hugs Deb and prayers for us all.

maybe he did me a favour as i have now made my mind up that i will have the surgery offered to me by professor robert in nantes, i am just waiting for judy on here to get back from her trip and i am going to ask her to try and make me a date for the surgery, i am sure i wont have to go back to them for a consultation as it was only 6 months ago, i will then also contact the radio station again and maybe they will also follow my journey for surgery, i will keep everyone informed


Can you let me know how your decompression surgery went please? I just came across your post here in March 2020

To chillijava and the other ladies:

Yes little emporers with power - the NHS surgeons.. I just tried messaging chillijava

to get the name. I have rectocele and multiple compolicatios post hysterectomy


alaine1 will be contacting you shortly with the info you wanted


Barbara9 profile image
Barbara9 in reply to chillijava


did you get the funding?ive filled in aEU directive application but wondering if it should be an S2.Ive been told i can only get the decompression done privately in the Uk so this will hinder me.So we need to ask a pain specialist or can our GP do a IFR..im not sure about theGP.i know its tough to get through to theNHS England team now


chillijava profile image
chillijava in reply to Barbara9

no i didnt get the funding, i had to fund it myself, and non of my doctors would do an IFR as they said it was a waste of time as i would not get the funding, even if i did

Ok.been thinking again today,do I go Paris see Maigne about coccyx as read this surgery won't help area around coccyx and coccyx,maybe also if cluneal involvement another surgery.its too much to take in...

the only thing i can say to you is, make sure you are 100% certain of what your problem is and think very carefully before having surgery

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