PT

[RobertVerde]

I have been going regularly to PT for this - saved me - I used to go weekly, then every other week - now I go once a month for a tune up. The key is to find a good PT

[Buuldog]

Where do you live, I am considering a PT but finding a good one could prove to be difficult. I had been hoping that the medical professionals could help but seems I have reached the bottom with that.

[RobertVerde in reply to Buuldog]

pudendalhope.info/node/63 try this website - if you want to connect with me send me let me know - I am in CA

[RobertVerde in reply to RobertVerde]

There is a doc who understand these issues quite well - Daniel Shoskes at the Cleveland Clinic.

[RobertVerde in reply to RobertVerde]

Interesting site: health.usnews.com/health-ne...

[RobertVerde in reply to Buuldog]

thry this: pudendalhope.info/node/16

[kalecolbe12]

Can I ask what your symptoms were and what kind of PT your pelvic floor therapist did ....did she do internal trigger points etc mobilization, pudendal nerve glides ?I'm just trying to compare what I've had done and then do you do breathing and stretching at home ?also last question... are you on any meds or have you tried any meds or procedures...

[RobertVerde in reply to kalecolbe12]

Sure - symptoms were pain on a level 10 in my groin area - all over - she did work on the internal trigger points, nerve glides, etc. To relax the muscles= around the nerves. A doc prescribed Lyrica to calm it all down and allow it to start to relax and heal. Also gave me a series of stretches to lengthen the muscles in and around the region. When I would feel it coming on I would do breathing exercises and if that didn't help a Xanax would help me relax as well.

[kalecolbe12 in reply to RobertVerde]

Also internal vaginal or rectal pt?

[RobertVerde in reply to kalecolbe12]

Male here rectal - I couldnt believe how it helped - took time to get the muscles to relax - you at times have to do self manipulation but it worked and continues to work so far. I wish there was a support group where I could meet and talk to others with the same condition. It appears to be more of an issue than I thought.

[Billybob17 in reply to RobertVerde]

I wish that also

[Billybob17 in reply to RobertVerde]

I tried 75mgs of lyrica and I felt like a zombie. You’re lucky it doesn’t have that side effect because it really helped my pain but not my brain

[RobertVerde in reply to Billybob17]

try gabapentin then

[kalecolbe12 in reply to kalecolbe12]

How long did you have it and how long were you on Lyrica (dose etc)and at pt?

[RobertVerde in reply to kalecolbe12]

Still have it but at a very manageable level that does not interfere with daily life - still taking Lyrica - its all working so I am reluctant to change anything. I can work, exercise to a degree, etc.

[Bestill in reply to RobertVerde]

Hi there!! I am so happy to hear you are felling better! What does of Lyrica are you taking and how long on Lyrica before you seen benefits? Thank GOD!

[RobertVerde in reply to Bestill]

I started at 300 mg 2 times a day / now at 150 2 times a day - going for 75 2 times a day soon then once a day then hopefully off the stuff. There are some side effects but it controls the pain so I can live with them.

[Bestill in reply to RobertVerde]

Thank you for your response!! How long before you starting feeling some better and how long have you been taking it?🙂 It’s always good to know what helps others. I am currently taking Lyrica 300 mg 2X daily. My pain seems to be Pudendal Neuralgia. I am female and have it mostly left sided from front to back. I had my first PN block done yesterday. I have been suffering for 1 year this month.

[RobertVerde in reply to Bestill]

If the Lycira is not helping at that level you can also add an anti inflammatory like Meloxicam - I did this for about 6 months and it helped - the best thing for me was PT - you did read "A Headache in the Pelvis" correct?

[RobertVerde in reply to RobertVerde]

Note: I have never had a block - my pain level was off the charts where there were some nights at 2 AM where I wanted to end it all.

[kalecolbe12 in reply to RobertVerde]

Yep mine was like that too...couldn't cope....but pt is an enormous physical and emotional support....I am taking the muscle relaxer as needed and I will take gabapentin if I need it which is a neurological med like the Lyrica... I am one year in and starting to definitely have better days now

[RobertVerde in reply to kalecolbe12]

Lyrica works better for me - I suggest if you sense an attack coming on take a small dose of Xanax - relaxes you mentally - like a wave of calm that comes over you. Check it out. The days will get better if you have the right attitude - lots of people give up ans suffer.

[kalecolbe12 in reply to RobertVerde]

Oh no I go out and sing with my band and do things I just got a flare up occasionally and I know what to do now so I'm on the same wavelength as you I live as normal a life as possible and I'll take medication if I need it no problem....My PT just showed me some meditation and the feldenkrais rocking technique today so I'm going to try both of those too!!I will never give up just like you!!

[kalecolbe12 in reply to RobertVerde]

But you didn't tell me what you thought caused it can you tell me...as for me it was just extreme levels of stress and butt clenching over a long period time... So naturally it's going to take a long period of time to undo the damage

[RobertVerde in reply to kalecolbe12]

I never heard of the feldenkrais rocking technique - do you have details? I have been one of those people that played college and professional sports - I got knocked around physically for years. After my "career"ended i started bike riding and working out lots - I think that started me down that road - then while on a trip I fell off a 6 ft wall and landed on my back - pretty sure that was the trigger. Have you noticed how you have learned not to clench anything anymore

[kalecolbe12 in reply to RobertVerde]

So the feldenkrais rocking technique is you lie down on your back and completely relax your whole body then you dig your heels into the floor and to start rocking your toes forward and back and making sure that the rest of your body is relaxed you just rock until your whole body is rocking it's supposed to align your spine and you nerves and help your core to relax..one last question how long did you go to pelvic floor physical therapy when you were going weekly? I went for 6 months and now I'm on my 7th month and I'm going to go every two weeks now I think... But she said she'll put me in if I feel like I need an emergency session

[Billybob17 in reply to kalecolbe12]

I couldn’t take lyrica because of the side effect symptoms. Does gabapentin have the same side effects?

[RobertVerde in reply to Billybob17]

I have Pudendal Neuralgia as well - going on almost 3 years - with PT it has gotten better and I have learned how to self treat - which works almost always - did you read this book " a headache in the pelvis"

[AuntieH in reply to Bestill]

Hi Bestill. What state are you in? I'm wondering where you got your nerve block?

[Bestill in reply to AuntieH]

I’m in Florida

[AuntieH in reply to Bestill]

Thank you. I'm looking to find one in SE Wisconsin.

[Bestill in reply to AuntieH]

Hello🙂 Go on Pudendal Hope website and they have a breakdown by state. Are you on any medicine?

[AuntieH in reply to Bestill]

I looked on there and there are just pelvic floor therapists who I called and they did not know of any doctors or places where I could go for a ct guided pudendal nerve block in WI. Does anyone else know?

[Bestill in reply to AuntieH]

Ok then try pelvicguru.com. You definitely should find one there🙂

[AuntieH in reply to Bestill]

Ok, I'll try them. Thank you!

[Bestill in reply to AuntieH]

Let me know! Have you started any medicine yet?

[AuntieH in reply to Bestill]

Right now I just take Tramadol once or twice a day. I tried gabapentin, but that made me drowsy and took my sense of taste and smell away.

[Bestill in reply to AuntieH]

I have a friend that I met from this forum that also relies on Tramadol. It works for her, but please try pelvic therapy🙂

[AuntieH in reply to Bestill]

Will pelvic therapy work if the pain is just at sit bone to tailbone, but not internally? I don't have any pain with vagina, urethra, or inside anus.

[Bestill in reply to AuntieH]

Yes it should. They do pelvic therapy externally🙂

[AuntieH in reply to Bestill]

Ok, I already had 4 months of hands on external pt, but still have symptoms.

[Bestill in reply to AuntieH]

That’s terrible!

[RobertVerde in reply to AuntieH]

pudendalhope.info/node/63 you should be able to find someone on this list.

[AuntieH in reply to RobertVerde]

Thank you!

[Billybob17 in reply to Bestill]

I also have pudendal neuralgia. The spasms that are the most painful is the ani levitor and iliococcygeus. Internal myofacial did help with this. Started having Botox injections there. I wish I knew why I have more pain after a bowel movement. I did have a neurologist tell me I had no anal wink. I tried one 75mg of lyrica and it made me feel like a zombie I couldn’t take that and drive. It was a shame because it helped my nerve pain.

[kalecolbe12 in reply to RobertVerde]

Can you tell me what the side effects of Lyrica you experienced?

[RobertVerde in reply to kalecolbe12]

Tired. Sometimes a bit dizzy like a small buzz. Weight gain. But it works v

[pudendalpainpatient]

I agree that a good PT is the most important thing in treatment of PN. I think I finally found one and started yesterday with her. The first PT I had nearly destroyed me!

[kalecolbe12 in reply to pudendalpainpatient]

Why did the first PT you had nearly destroy you ..what did they do?

[pudendalpainpatient in reply to kalecolbe12]

To start with I'm 66 years old. So when she did the internal therapy she was pressing so hard and stretching so much that my internal area could not take it. I was in severe pain after the session. She told me it should only last another day, and she scheduling me twice per week. I didn't know any better, so I kept going and the pain just kept getting worse - shooting knive pains, burning in buttoks, vaginal pain so bad I could hardly walk. After 8 sessions, she said she had met HER goals, and she was finished. I, on the other hand, could barely walk out of her office. Fortunately, I have now found another very carrying PT who understands that she has to go slower in therapy with an older woman and she cares very much whether I'm hurting after the session, unlike the first one.

[kalecolbe12 in reply to pudendalpainpatient]

Yep same will be 66 in April and I have to have very gentle pt also...anything too deep or rough exacerbates the pain

[RobertVerde]

anyone had an injection for Pudendal Nerve pain? Get good results?

[RobertVerde]

/website worth seeing: health.usnews.com/health-ne...

[RobertVerde]

Has anyone tried DRG for pain management: abbott.com/corpnewsroom/pai... - thinking about it as a last resort.