Desperate! Does anyone know a physio that does trigger point therapy for pelvc floor in the UK? I have pudendal neuralgia, IC, endo, SIJD

I have pudendal neuralgia, interstitial cystitis, endometriosis and sacroiliac joint dysfunction. The endometriosis came first had all my life and was misdiagnosed and now it is too far gone to treat. Had surgery 4 times with no success. Scar tissue is severe. Then I developed sacroliac joint dysfunction and extreme pain in my sacroiliac joint on the left side. I was told that it looked like I had been in a car accident as my pelvis was out of line. Did pilates which improved it slightly but it comes and goes. Now it is back worse than ever and is on both sides, both joints hurt. Had buttock pain for 4 years of unknown cause, no doctor knows what that is. I cannot sit down very long without getting excrutiating pain in my buttock muscles. I have now developed interstitial cystitis (although it may not be that!) or the symptoms of it and it is extremely painful, it is the worse thing yet. I have also been told that it could be the pudendal nerve causing interstitial cystitis symptoms. I have tried numerous drugs with no help but I cannot tolerate the side effects as I am sensitive to medication. I have had Pregabalin, Amitriptyline, Dihydracodeine, Codeine, Tramadol, Carbamazepine etc. My pelvic floor squeezes very tight on biofeedback tests but if I do any type of kegal then relax it makes the pain so much worse in my bladder. I feel the pelvic floor may have knots in and need to find a physio that could help. I have researched this condition for 10 months and I am sure this is the cause of the bladder pain and pudendal nerve pain. I also have trouble with bowel movements ever since I had surgery 4 years ago. I wish I had never had surgery. I see consultants in Oxford, Birmingham, Worcester and they all say different things regarding what the bladder pain is. I really want to find a specialist in these problems who may help me. I have been told that surgery is not an option because of the scar tissue so I feel I am being fobbed off to live in pain for the rest of my life. I beleive Thiele massage may help but cannot find anyone who does it. Please help thanks

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  • This is so similar to me, starting with deeply infiltrating endometriosis, scar tissue then the other conditions including nerve damage and SJD. See a physio for the latter who aligns the pelvis using considerable force.

    Have you seen this article ? ncbi.nlm.nih.gov/pmc/articl... which mentions Thiele massage. This type of internal therapy is unusual here, in fact I don't know anyone who does this. Did you ask the consultants you have seen ? it may be worth seeking an appointment in Bristol to explore this.

  • Hi Judy, I seem to be getting a bit further on! So grateful for your help. Four years ago six months after surgery a physio in Oxford said my pelvis was out of line due to endometriosis pain and muscle tensing and needed to be corrected with physio. However because I live in Kidderminster my physio was done here and they just gave me pilates to do, they did not correct any other muscle imbalance and they said it looked normal. I have just seen another physio who agrees that one hip is higher than the other which could be the cause of my piriformis syndrome and sacroiliac pain. She gave me some exercises for that and she has started trying to correct the tight muscles on one hip to get it in line. My back already feels much better but my buttock muscles still hurt. I have studied this and beleive that my tight muscles and wonky hip could have caused pelvic floor dysfunction and is impinging on the pundendal nerve. I am hoping it is not too far damaged and with the correct physio it might be released! I really hope. However, the physio I see here doesn't do anything to stretch the pelvic floor they just do kegels so she is not the correct person. I might have to travel to London to get the physio I need. I wonder also if the Bristol team know good physios for pelvic floor dysfunction causing impingement of the pudendal nerve? I might try to contact them or get a referral to Bristol. Thanks so much for your reply. How are you feeling at the moment?

  • For Tobydog9 & Judy... I stumbled upon this online, entirely by accident. I had no knowledge of her before seeing this. It may not be anywhere near where either of you live and I cannot verify how good this physio is. But according to the website she seems to know something about our conditions and does thiele mssage. Might be worth contacting her and asking if anyone else she knows does this?

    All the best, PQ.

    traceymilesphysio.com/women...

  • Hi there, I see Helen Keeble who works near Barnes in SW London and also out of Harley Street. She is doing internal trigger point work with me and although we have just started my treatment she has already done a lot to calm my nervous system through acupuncture, trigger point massage and some other good strategies. Helen is the best women's health physiotherapist I have found during my last two years of a pelvic nightmare. Helen seems very clued up about scar tissue. I have a bad toothache bum! The toothache turns into the most awful spasms that go down my legs so my legs and buttocks ache all the time from the aftermath of the spasm attacks. I have a hot epsom salt bath, lather myself with Mr Wong stinky Tiger Balm like liquid and lie on three hot water bottles at night dosed up with my painkillers. Thank goodness my husband loves me!

    Anyway even if you booked into Helen to talk have an initial consultation, she is so helpful and caring. You could also ring her her and ask her if she knows of anyone more local to you. Look after yourself! Emma x

  • Hi thanks so much for your reply. Is your physio private or NHS? Does she give you any exercises to do at home? I seem to be getting a bit further on with all this info! So grateful for your help. Four years ago six months after surgery a physio in Oxford said my pelvis was out of line due to endometriosis pain and muscle tensing and needed to be corrected with physio. However because I live in Kidderminster my physio was done here and they just gave me pilates to do, they did not correct any other muscle imbalance and they said it looked normal. I have just seen another physio who agrees that one hip is higher than the other which could be the cause of my piriformis syndrome and sacroiliac pain. She gave me some exercises for that and she has started trying to correct the tight muscles on one hip to get it in line. My back already feels much better but my buttock muscles still hurt constantly and cannot sit for long. I have studied this and beleive that my tight muscles and wonky hip could have caused pelvic floor dysfunction and is impinging on the pundendal nerve. I am hoping it is not too far damaged and with the correct physio it might be released! I really hope. However, the physio I see here doesn't do anything to stretch the pelvic floor they just do kegels so she is not the correct person. I might have to travel to London to get the physio I need. Thanks so much for your reply. How are you feeling at the moment?

  • Tobydog. . . .please, DO NOT DO KEGALS!!!

    Kegal therapy is for those who have pelvic floor laxity and I would think that you have the opposite of that hence your added pain. Here is a list of pelvic physio's in the UK. I would still advise that you give anyone on that list who may be near(ish) you a ring before hand and tell them your problems. They need to be pudendal nerve aware, although I would say that probably everyone on the list will be.

    pelvicphysiotherapy.com/man...

    This will explain why kegals are not good for you, as in 'YOU' .

    They will help people who need to address any pelvic floor muscle laxity.

    Helen

  • Sorry THIS will explain why Kegals are not good for YOU

    pelvicpainrehab.com/blog/20...

  • Hi thanks so much for your reply. I seem to be getting a bit further on with all this info! So grateful for your help. Four years ago six months after surgery a physio in Oxford said my pelvis was out of line due to endometriosis pain and muscle tensing and needed to be corrected with physio. However because I live in Kidderminster my physio was done here and they just gave me pilates to do, they did not correct any other muscle imbalance and they said it looked normal. I have just seen another physio who agrees that one hip is higher than the other which could be the cause of my piriformis syndrome and sacroiliac pain. She gave me some exercises for that and she has started trying to correct the tight muscles on one hip to get it in line. My back already feels much better but my buttock muscles still hurt constantly and cannot sit for long. I have studied this and beleive that my tight muscles and wonky hip could have caused pelvic floor dysfunction and is impinging on the pundendal nerve. I am hoping it is not too far damaged and with the correct physio it might be released! I really hope. However, the physio I see here doesn't do anything to stretch the pelvic floor they just do kegels so she is not the correct person. I agree with you kegels are no going to help me! I might have to travel to London to get the physio I need. I wonder if I will be allowed to be referred to London on the NHS? I suppose one of my Consultants will refer me because of my serious health problems they do want to help but are just not that experienced in pelvic floor dysfunction for some reason. Thanks so much for your reply. Have you had pelvic floor dysfunction yourself? I really believe my pelvic floor is squeezing my urethra and my buttock pain is piriformis syndrome and possibly causing pudendal neuralgia symptoms.

  • That is what iam starting to have !! A deep pain on my right butt cheek !! What could it be ?? I just got off my topamax . And I take carbatrol still ???

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