New to this group and have some questions!

[Justinb2000]

Im 19 years old, Male, and have been dealing with this condition for 3 years plus now. It’s been hell to say the least. I used to have pelvic pain and testicular pain all the time. But it seems the last year or so it’s For the most part, again, for the most part, has disappeared. I mostly struggle with hesitation urinating and constipation. I’ve been diagnosed with dyssnergic defecation, in other words hypertonic muscles or pelvic floor dysfunction. I was wondering how I can possibly be treated, I’ve been going to physical therapy but I haven’t seen a huge improvement . Especially with constipation. Can anyone direct me to doctors specialized near me so I can possibly see exactly what’s going on? I live in Virginia Beach, Virginia. Also wondering if I could have been misdiagnosed with pelvic floor issues from the anolrectal manometry test i had done to get diagnosed.

Thanks. New to this group!

[kalecolbe12]

Hi...first of all I am so sorry you are so young and going through this at least I didn't get my pelvic floor dysfunction till I was in my 60s however it's horrible no matter what age you are maybe it's almost better when you're younger cuz you have better coping skills I don't know ...anyway just wondering if you had internal or external physical therapy and if you had dry needling.?the truth is so little is known about this so you could indeed have been misdiagnosed....I also jav constipation and I did a mixture my pt doc gave me which has helped me be less constipated plus she taught me to breathe through the bowel movements...the mixture is oatbran,apple sauce and prune juice mixed together in a bowl and 1 to 2 tsp a day ...also stool softeners help....I would stick with the pelvic pt because it's obviously helping somewhat and it's a long process.....it will help with urinary hesitation and constipation eventually...and keep doing the diaphramic breathing....it will also eventually help....and i do believe you have pfd but I will ask my pt tommorow about your case ...best wishes...

[Justinb2000 in reply to kalecolbe12]

Okay awesome thanks! Please let me know what they say!

[kalecolbe12 in reply to Justinb2000]

So I talked to my pt doctor about your case today and she says it sounds like pfd to her and you are on the right track ....also a few people on here are talking about the dct program...I am gonna try acupuncture next and continuing my pt and muscle relaxers because it seems to be helping but this is all hard work and patience ...just stick with it and do that. Breathing because it's about resetting your pelvic floor.......email or pm me any time you want and update me...or if you just need tsome support....Audrey

[anne77 in reply to kalecolbe12]

My pt gave me that same recipe and I put the mixture in ice cube trays, freeze them and eat one every night before bedtime. Then I drink a hot beverage, followed by deep pelvic message with circular motions (as she taught me). I also take a stool softener every night (solace). I also do the diaphragmatic breathing. It does helps, but I am never totally pain free. I have also been reading about DCT, and wonder if anyone has seen improvement? I am always willing to try new things, but I have been through quite a few already and sure look forward to doctors coming together to find a real cure. It is exhausting "managing the pain"!

[kalecolbe12 in reply to anne77]

What have you tried?have you Tried Botox or vaginal/rectal valium or oral muscle relaxers?

[kalecolbe12 in reply to kalecolbe12]

I am still waiting to hear about DCT excercises

[anne77 in reply to kalecolbe12]

Nerve injections, botox, amniotic allograft injection w/ botox (also called RHEO injection), stem cell paste injection (total rip off), several different compounded suppositories, Chiropractic/Wellness Centers, a few prescriptions (gabapentin, lyrica, cymbalta, amytriptyline and others), Currently trying a second physical therapist. I have had biofeedback, dry needling, used tens machines. Probably most everything but surgery or acupuncture!

[kalecolbe12 in reply to anne77]

Hi ...did the Botox work at all or anything else??I am going to try acupuncture as suggested by my pt....I will let you know how it works...so do you have Levator Ani pfd pain spasms?or something else?do you have diagnosis?

[anne77 in reply to kalecolbe12]

The botox helped minimally for awhile. I do not think there is a way to diagnose PN except trying to rule everything else out. I had a Tesla 3 MRI at Johns Hopkins (which is supposed to be even better than an MRI), and it didn't even show the nerve. I have a lot of pelvic spasms, some of which most likely involve the levator ani. I am going to continue with pt, and would love input from anyone who has tried acupuncture or DCT

[ollHF]

I’m 18 right now I’ve had cpps and hard flaccid for 15 months now I tried pt,meditation, all that and none of it worked. I’m doing DCT rn. I’m 3.5 months in. Haven’t seen a ton of improvements yet but it takes time. It’s like bodybuilding you are changing the structure of your body. We’ve had several people in our Facebook group recover by using DCT. And David the creator recovered after 14 years

[Doggiedogmom1973]

Pain..would serrapeptase help??? Might want to do some research first...

[Ala2189]

I'm so sorry for you, that you're so young to be suffering like that.

I've also suffered for a long time. But frankly, barring the odd UTI or yeast infection, a lot of my problem is due to stress. I have pelvic/vulval pain and irritable bowel syndrome and I think, if I'm distressed, I hold my pain there. I used to take lots of pain medication. I'm now just trying to 'let it go'. I've obsessed about this pain for too long. And you know, I think it's starting to work! I wish you the very best of luck and release from your pain. People on this site are really helpful and we are always here if you want to chat