Had pelvic pain for ten years. Dr after dr, who cannot agree if ic , pelvic floor dysfunction, or pudendal nerve. Many, many tests and procedures. Pelvic floor therapy has given me the most relief, but now my therapists are at a loss what to do next to help. My symptoms are aggreviated with sitting, urethral burning, pelvic pain and spasms, and now urine leakage. I cannot do kegals because pelvic floor is always tight and that increases pain. They claim my bladder contracts before it is completely full. I have mild urgency and frequency. I am trying to find a way to deal with leakage, which is constant dribble. Thinking of going to acupuncturist, has anyone tried that? Also dr wants me to try mybetriq but am afraid of side affects, anyone have success with it? Thanks. Any advice appreciated.
New here: Had pelvic pain for ten years... - Pelvic Pain Suppo...
New here
What previous surgeries have you had done?
Only had laproscopic surgery years ago trying to find origin of pain, found nothing.
Do u get the pain all the time or at certain times and where is pain
Pain comes and goes. Used to be constant, but since pelvic floor therapy have some pain free days. I had severe Pfd, that all the drs confirmed. Pain comes mostly from sitting all day on my job. Didn’t have urgency and leakage till this last year. Bladder was scoped twice and no ic was seen, but I have smaller bladder capacity or my bladder contracts before it is full and they don’t know why. My leakage is like my bladder is a balloon that has a small tear and just drips out. It’s not when I cough or sneeze or laugh. It just drips constant and I feel nothing, no urge or pain, so they said it’s not my bladder contracting over and over. So they don’t know why it just drips. I don’t know where to turn next. Insurance has never paid for anything, they said since I didn’t crawl into therapy it didn’t justify paying. Also I have never been given anything for pain, not even in the beginning when it was constant and a ten, out of 1-10. It’s so hard to stay positive.
What’s is scoped of the bladder and ic
They just use a scope with camera into bladder looking for ic and ulcers. None was found
I have much of that and have been on methadone for 8 years. Very few side effects and takes away 50% or more of the pain. No loopiness at all if take the correct dose. I owe this drug my life.
Where are you located us or abroad?
Big fan of both pelvic acupuncture and dry needling. If problems are internal there are doctors who can help.
That sounds like i could have wrote that myself. I am doing Physiotherapist,she does her best to help me,but it's not really working.
I've spent years trying to get someone to admit,its nerve pain ex: perennial nerve,or Prudendal,or Prudendal neuralgia,but no one would,yet I've had a nerve block,which did nothing. This week I've seen a gynaecologist who actually said in her opinion it was Perennial nerve pain,but of course there's no way they can test nerves.
Then I came home,and found I could go through my records on my Patience access app,and everyone I've seen has put it down to Perennial pain,plus IBS,so looks like I'll have to live with it. Problem being it's getting worse. My Physio,did say the more I move and exercise the better.
So I've just started Tia Chi. Sorry for the long post,got carried away.🙄
No dr has said pudendal but therapy says tight pelvic floor can aggreviate pudendal nerve. Have you tried pelvic floor therapy? They have helped me the most thru the years. They have given me pain free days and hope.
What state are you in?
Botoxing the bladder? Which Dr recommended doing that?
Here are the states that have legalizing dry needing. Maryland is the best.
google.com/search?q=what+st...
My urogynecologist wants to Botox the bladder, even though he says it’s just a guess and gives it only 20-30 percent success rate. And 80% of people have to self cath for weeks after.
There are doctors in Ny that are great with bladder issues and treat with many options. Such as if you have adhesions around the eurythra hydro dissection is used to break up adhesions (it is one option)
I googled and found this person? Ever heard of her? Her resume looks modern day.
wexnermedical.osu.edu/find-...
....
I suggest calling these people below and see if there is someone they suggest who specializes in pelvic dry needling.
Jan Dommerholt wrote the book on Dry Needling so see if there is anyone who took his Pelvic Dry Needling classes at Myo Pain seminars
Consider a DRG Stim trial for a female discuss leads at L1, S2 and S3 with the expert.. Call Abbott and find a pelvic floor pain doctor who has experience in your problem area, ONLY.... Do not settle for less.. You can call Dr. Rowe, Dr. Ramana Naidu if you cant find a local expert. Good luck on getting your pain way down, it works for many and in the trial period you will know. Plz share this message with everyone as an option.
I have been receiving deep needle acupuncture for 6 years for severe rectal and pelvic pain (due to Crohns and resultant surgery). It has been helpful but not as much as a TENS machine which I wear nearly all the time, giving out a low frequency pulse.
I now have the same problem of leaking urine all the time but none of the aforementioned have helped with this.
I have had acupuncture for rectalpain Years ago i had purdendal neuralgia and gabapentin clearned it up I would get a good recommendation for an acupuncturist (I had good luck with someone trained in China) but had to change to someone else because of how far i had to drive. The new person did not help but just last week we found the problem is not due to my rectal spasms but my body allighment so we are working on my body allignment I would give acumpuncture 4-6 tries.
Not what you're looking for?
You may also like...
Hello, I'm New Here.
new here
New here! Pudendal neuralgia sufferer
Hi I'm new here, looking for advice on where to turn to with my symptoms.
New Pelvic Pain Diagnosis
new diagnosis uterine Prolapse 
Massive pain reduction - is it here to stay?
New to this group and have some questions! 
New member looking for others like me!
