Pelvic / groin pain specialists in UK?

[JessH]

Hi, I have suffered from chronic groin pain only on the right side for over 3 years now & despite many investigations, scans & a recent laparoscopy the doctors still can't discover the root of the pain. For the past 6 months approx I have also had soreness & achiness all over my body which really hurts but I never thought the two could be linked.

The doctors & my pain consultant are now referring me to see a rheumatologist as they are thinking I could have ME/Fibromyalgia.

Does anyone else have this which has started in a similar way with localised pain??

Also do you know of any specialists of groin pain in the UK? I really am getting desperate now so willing to travel anywhere to see someone who may be able to offer some help:((

Thank you. X

[Sheilam]

Dear JessH,, I do sympathise with your right groin pain. I, too, have had horrible pain, pulsating and soreness in this - and other ']pelvic' areas for a long time. (I won't tell you how many years!) I also have it - sore, pressing and pulsating in my rectal area and right through from the back to the pubic area, with cutting sensation and soreness in, especially, the right crotch, but can be felt in both. Sitting down is agony, sitting driving, sitting at the computer, sitting watchin gTV etc. I have found that almost the only diminution of the pain is if I am walking about or sitting talking with visitors. I am 80, so all this causes me great problems. I don't feel that I have been fully investigated for what now seems to be called pupendal neuralgia. I am taking 300mg twice daily of Pregabalin, which was a new drug about 8 years ago, specially produced for neuropathic pain. Like you, I don't feel that I have had investigations, and actually don't feel that I have had any applicable investigations. Look up pudendal neuralgia on the interest, also 'pudendal nerve entrapment'. There are some special nerve blocks done under local anaesthetic at the National Hospital for Neurological Diseases and University College Hospital. A Dr. Baranovski is mentioded in the second article, and we works with Dr. Curran. They do these procedures under the NHS but there is quite a long waiting list. I have had them, and they were unsuccessfull, but they thought that might be because I had had the pain for too long. What are the investigations yoh have had? I am seeing my GP tomorrow, to say that I don't think I have had any appropriate investigations - it has just been assumed that PNE is what I have suffered with for so long. Maybe there weren't the investigations a few years' ago. But on one of the sites I mentioned it states quite a number of investigations that can be done - but these may only be avilable in the States! Also we can't put our trust in investigations - we've got to get on to treatment and relief! What medication do you take? My best wishes, Sheilam