I thought that you probably would have consulted a doctor already, and I can understand the feelings you have about surgery, my first surgery didn't go too bad but after the second one I nearly fainted and got a really bad stomach upset. Since I went home straight after the operation and since it was a weekend I had to wait 18 hours until we could get a doctor to come out to give me medicine to stop the vomiting etc. . My mom thinks that it was bad tea they gave me after the opeartion that caused it but I have been wondering for a while if I just had a bad reaction to the anasthetic.
Since these troubles I have looked into alternative forms of surgery and sedation and I think that if you conuslt the right surgeon they might do the operation with local anasthetic if it isn't too big of an operation.
On the forum I gave you the link to I have read somewhere that the surgeons do sometimes do another operation to remove nerves that cause post operation pain, and since they operate in that area and do those kind of operations they may be able to help and be competent I would think, even if it is just to answer some of your questions.
Also maybe you can phone some kind of medical board or something and ask them for surgeons that specialise in nerve removal, if there is such a thing.
I am sure that if you do the research you will find someone you feel is competent and that you can trust.
If the pain has affected your life for so long, how bad can a few hours of surgery and a few weeks of recovery be in comparison? I am not trying to say that it will be easy, but maybe think of all the benefits if you have the surgery, and I am sure that a surgeon who can perform the operation will be able to give you an outline of expected recovery etc.
I can't imagine how bad the situation must be for you, to be that limited in social and personal life is horrible, especially for such a very long time. I think if something can be done about it and even if the only option is surgery I would really consider going for it, and I am sure that no surgeon will attempt the surgery if they don't see a chance of improved life or full recovery for you. Do you know how invasive the surgery would be? I think maybe if you really ask the doctors on the forum, or even phone them up and speak to someone they may at least be able to answer some of your questions and to maybe referr you to someone they know that is competent in your area.
I hope you find a good solution soon, you really shouldn't have to live your life like this and I think it is terrible that you had to live like this for so long.
I often felt disabled with my hernias, I had hernia pain since I was 9 or so and never got diagnosed until I was 14, so experiencing pain after doing sports has been pretty much part of my life since then. Also not being able to do any proper lifting and having to say "i'm sorry, I can't do that, I am not allowed to do any heavy lifting" especially while I was at school felt horrible, and often people look at me in utter bewilderement when they see this young, healthy and fit looking woman asking them to maybe lift her luggage off the bus, train, etc. So to a certain extent I know how it feels in a social context, but I can't imagine how bad it must be for you since you don't seem to be able to hardly do anything without there being pain involved.
Have you tried counselling? I am sorry if this sounds too personal and you don't have to answer, but if you haven't maybe you could, it might help you get through an operation, prepare you for it and also to help you afterwards to work through some issues.
I often notice how I get quite emotional thinking about my medical history and all the mess ups from doctors I had to go through, so if I feel like that now I can't imagine how you must feel after 20 years of pain and it might be helpful for you to talk to someone.
Anyway, I wish you all the best and that you will find a good surgeon that you can trust, I am sure that an operation would probably sort you our or make your life a little better and more liveable at least, so I wish you strength, courage and good luck on your journey!
Maybe let me know how you get on, of course you don't have to but it would be nice to hear if you find a solution and if it works.
Take care of yourself,
lena