Constant Urethra Burning + Legs

[Rome81]

Hello

I will keep this post short, as I started having problems 5 years ago and a detailed account would be pretty boring. I would like to know if anyone has the same symptoms I will describe below and if they found someone who could help (possibly in London):

- Burning in my urethra - 24hr, not only during or after urination - that actually doesn't change anything

- Burning sensation going down to my legs - like a sun burn but with no remedy

- Sometimes constant feeling of the need to urinate even if I just went - the sensation is from my urethra, not my bladder

- Symptoms become worse before menstruation, then quiet down during my period.

The only things that worked for me so far were:

- mixture of laroxil and rivotril (italian names) - but they made my life an hell as I was always sleepy

- trigger point injections - first round worked brilliantly - second round didn't, hence why I am here.

Thank you

Rome81

[Pinky2233]

Yes I had all these symptons exactly as related to my period. I had to find a physio who could do myofascial trigger point release in the urethra. Took a long time but improvement is improvement. I had to take alot of valium to get through treatment. The down the leg part was pain spreading for me. When left without treatmeby the leg returned. With treatment I could feel each piece release and there were many pieces. I had trigger point injections, botox, drugs nothing helped.

Ask for advanced certifications in myofascial release. Find the schools and associations that teach this and email / call everyone till you get enough referrals you can try people out. Try many and it is well worth the expense. Only wish I had started sooner. Truly my only answer. Be repared to take clonopin or valium to help get through it buy stay the course for months to determine if it is helping because it takes awhile. At least that part of my nerve damage is gone. Im in the US.

[Mary1222]

Have you had treatment for Interstitial Cystitis yet? If not I would start with that. I also suggest S. I. Joint injections. If neither of these work you'll likely want to find a Pudendal Nerve Entrapment doctor.

[Ladydidi]

Hi-I have these symptoms too but I'm pretty sure mine are from getting bi-weekly bladder installations for over 2 yrs. plus i've had over seven cystoscopy's and I've had my ulcers burned off my bladder twice going into the urethra. Now I'm constantly pushing to get Pee out that hurts the urethra too. I can relate with you on how painful this is. Mine also is going down into my legs. I just got Botox and that usually helps a bit but this time I got a bladder infection afterwards and since I just have been feeling horrible. I've been trying to do very light stretches from the Heal Pelvic Book as I also feel mine is party due to nerves. I agree w Pinky w pelvic floor therapist that specializes in Myofascial trigger point release. This is a tough thing to accomplish. I've seen over five pelvic floor therapists And one was excellent however they were over $200 per hour and I just had to discontinue due to lack of funds. Hence can't work. You are not alone. Hang in there. Best wishes and happy holidays!

[Rome81 in reply to Ladydidi]

Hi there

Thanks for your reply - I found a bunch of physiotherapists that do internal trigger point release - I am seeing one next week - I will let you know if it goes well - the initial fee is 150 but follow up sessions are 60 pounds which is expensive but still better than 200!

I have also found an hypnotherapist that deals with chronic pain due to the type of problems we have - my professor in Italy says that hypnotherapy as a high rate of success and it's worth a shot - if it works I will def keep you updated!

Good luck and happy holidays!

[Ladydidi in reply to Rome81]

Hi! I'm in California. I'm glad you were able to find a good therapist. Good luck to you! Let me know how it goes.

[Hidden]

It sounds to me like a nerve to the urethra may be the cause. I would suggest you get a referral to any uro-neurologist as they specialise in the urinary system. There are plenty of uro-neurologists in many London Hospitals, although I would recommend University City London Hospital (UCLH ) or Guys and St. Thomas's. Hope this helps, Good Luck.

[Rome81 in reply to Hidden]

Hello, thanks - yes it's a nerve problem - I will try to check these two hospitals and share my findings with the other doctors I have been able to find here in London.

Thank you!

[Hidden in reply to Rome81]

Another hospital I would recommend is the National Hospital for Neurology and Neurosurgery, Queens Square, London. One of the uro-neurologist there is Doctor Panicker, he is very thorough. I wish you all the best. Good Luck.