Male Hypertonic Pelvic Floor & Nerve Pain on left side

Hi all - Just found this site, and hoping it can be an opportunity to learn. I have been dealing with a hypertonic pelvic floor and some nerve pain for about 2.5 years. I've tried physical therapy, medications, and have not found any relief. I met with Dr. Hibner down in AZ and he is strongly recommending Botox. I'm curious if anyone has done this and what the success was. I deal with that horrible rectal pain and perineal pain. I also live in Minnesota, so in case anyone has any recommendations locally, I'd certainly take them! Thank you!

[Midori83]

Hi! I have tried botox injections into the pelvic floor muscles. It works, but my nerve pain starts higher up, (I have found out that surgery damaged my ilioinguinal and iliohypogastric nerves), so I need to have a nerve block injection instead, and perhaps try radiofrequency. Botox is only a temporary solution, but overall I have seen some long term improvements.

[Skye22]

Hi there I have levator ani syndrome and over the past few years get 3mthly Botox Injections into pelvic floor with great success.It doesn't eradicate symptoms but make them much more bearable. In conjunction I see a specialist women's physio who does trigger point therapy around the pelvic floor. Combination of treatments really does eleviate painful spasms and rectal pain.

It took a good few years to get the combination of treatments that work for me and also take antispasmodics and ammitryptiline to good effect.

I stay in UK so unfortunately cannot recommend treatments in your area.

Hope you find treatments that work for you.

[EffieT]

It's awful to be in pain constantly and I really feel for you. I have had pelvic pain for 4 years now which after many specialists and tests has been diagnosed as musculoskeletal. Pelvic physio helps as does dry needling into my glutes and adductors. I have no experience of Botox but I know Dr Hibner is an expert in this area. Good luck and I hope you find some relief.

[RobertVerde]

I hope you are better soon - I suggest you read this book: "A Headache in the Pelvis" available on Amazon - also here are a few sites that helped me quite a bit: pudendalhope.info/ / health.usnews.com/health-ne... / I started having pelivc pain years ago and can finally manage it on my own. The trick for me is to learn what triggers an attack. Good luck! BG

[parivash]

Hello. I live in Ireland. I found a physiotherapist on the pudendalhope.info website. It lists specialist and physiotherapist in different countries that deal in this area. She does internal work but also spends a lot of time working on my back before she does internal massage. Painful but I have had some relief from the pain with this treatment. There is a lot of information on this site about pudendal nerve if that is the cause of your pain.

She was the second physio I tried. My gynaecologist and pain specialist had recommended someone else but she was not in the same league as the one I am going to now.

Good luck on your journey. This is a difficult condition to manage and staying positive can be a challenge!!

[sungirl55]

Hi there! Have you tried the drug Baclofen? I'm female and have been suffering from tight muscles for two years! It's been horrible! The pain feels like there's a vice inside me squeezing all my sensitive parts. I live in Oklahoma and finally found good doctors and PT's. I'm on my third physical therapist at OU medical and I'm also seeing their medical team. The doctor told me to start with Baclofen to relax my pelvic muscles and man, it worked like a charm. I take 20 mg (10mg in the morning and 10mg at night). The only side effect is a bit of constipation, but I deal with it. It doesn't take the tightness away totally but it takes the pain away to where I can endure the pain of dilator therapy and internal pelvic therapy. Give it a try if you haven't already and maybe it will take your pain down. I know it's a tough road to hoe, but don't lose hope. Prayers for you and all those on here who suffer so terribly.

[Hidden in reply to sungirl55]

I have not. I tried Flexeril, and it didn't do anything. But it sounds like Baclofen is different. Can you work and function on it? Or does it make you drowsy?

[sungirl55 in reply to Hidden]

Yes, Baclofen works on your brain to relax the muscles of the pelvic floor. As much as I tried to stretch my muscles inside and out it never worked because my brain was in a constant state of panic, which is the source of the tightening. This drug slaps your brain around (think old movies where a man slaps a woman when she's hysterical to calm her down). This is what this drug does to your brain. It says, "STOP! RELAX!" So, now when I use my dilators, my brain doesn't panic or cause my muscles to recoil. It stays calm and it takes the fear of therapy away. I still have pain with therapy but it's not as bad as before. I had to recently go down to 15 mg because at 20 mg it was giving me headaches and dizziness (grogged out feeling) but I could still function fine. I'm still in the trial phase because I've only been on it for two to three weeks. My suggestion would be to start with 5mg before you go to bed. That's what I did. Split a 10mg pill and go to bed. See how you do the next day. I felt no pain relief and no side effects, so I upped it to 10mg the next night. The next morning I felt good and I was not sleepy at all. So then I took 5mg in the morning in addition to the 10mg at night. I wasn't sleepy or anything, so I decided to go full on and take 10mg in the morning and at night. After about 4 or 5 days I noticed that I was having headaches and felt a little bit dizzy but it really took a lot of my pain away. I think it accumulates in your system, so now I think I'll take 5mg in the morning sometimes and 10mg in the morning sometimes and see if I do okay with that. I hope your doctor has knowledge about this drug and can give it to you to try. Keep us posted!

[Harrythecat]

I had Botox injections for CPPS last week. My feeling is that it has been positive, it seems to have dialled down the burning and discomfort. I feel quite encouraged. Pain Consultant, Bristol UK said that would have max effect after 4 weeks.

[ouch421]

If you are in USA try accessing: pelvicpainhelp.com/clinic-s...

[ouch421]

The wise anderson protocol book .. headache in pelvis has clues to diy. It is available in some? libraries.

[Jobun1]

Mayo Clinic, one of the worlds leading medical centers, is right in your backyard! I’d absolutely make an appt with them! I would start with one of their pelvic floor physical therapists. Be sure to check credentials and pick one with many years experience, as well as Herman and Wallace certification. The therapist can then recommend an appropriate Mayo Clinic physician for you to go see.

[BridgeburnerSapper]

If you are a resident of Minnesota you might consider Sandra Hilton, DPT, over in Chicago. You didn't say if you had dedicated male pelvic floor physiotherapy. Hilton is co-author of the book why pelvic pain hurts, together with Adriaan Louw and Carolyn Vandyken. (I am waiting for the second edition.) Hilton did a recent podcast with Susie Gronski, DPT, on YouTube. Gronski herself also wrote a book on male pelvic pain and is present on YouTube. Both strongly emphasize the neuroscientifical approach.

For a general overview on male pelvic pain there is a presentation from Shan Morrison for the Pelvic Pain Foundation of Australia on YT. Male voices on YouTube are Karl Monahan in England and there is some Scottish dude, Bill Taylor, also a PT. Then there are Akincilar/Prendergast who run a chain of clinics dedicated to pelvic floor health in the US, on YouTube on the Pelvic Health and Rehabilitation Center. And there are several more of which the YouTube suggestions should take care off.

Wise and Anderson are old school. If it works for you, it works for you. I would like to give a big shout out to the UPOINT-boys, who followed up, but Nicholls, Shoskes and Pontieri sadly neglected to write a book for the general public.

If you have not found any relief with what you have tried, you may want to check out gentle movement stuff. Neil Pearson has an entire series over on the PainBC channel. Remember: Motion is Lotion. If you don't remember than you have had a subaverage PT. Active is nice, but 'going through the motions' physically could be just the level of intensity which puts you on an upward track.

And last but not least, a squatty potty extra wide step for grown-ups works miracles for number 2.