Advice before evaluation by pelvic floor specialist

[Cade]

Soon I am going to make an appointment with this place to get an evaluation. http://www.pelvicfloorandcore.com/

They have a page with a lot of information on pudendal neuralgia and they claim to have successfully treated PN and even list the causes of PN for which there have been successful treatments by PTs.

"Causes of PN that Pelvic Floor Physical Therapists successfully treat include:

*Tension of the nerve from muscles, ligaments, scar tissue or from pelvic misalignment.
*Trauma to the nerve from a fall, exercise, childbirth, prolonged sitting/cycling, or surgery in the abdominopelvic region.
*Stress that provokes or increases the pain of PN.
*Tension or scar tissue that has occurred and is still present following a medical diagnosis which has been treated and cured."

I am going to ask to be evaluated by someone who has experience successfully treating PN or at least has a lot of knowledge on it. The reason why I've avoided it up until now is that I know it's really the only option I have that's close to me that could possibly get me on the right track and if it doesn't work out I'll be devastated. It's hard to believe claims that they've treated it when reading on this site and forum gives the impression of it being so difficult and unlikely to successfully treat. I know I have reason to be hopeful, since I was able to figure out what this was my first year into it, and medication has taken away the majority of my pain. I'm going to do it in spite of my fears, I figure that at least I can hopefully get a diagnosis or at least an evaluation on what's going on with my pelvic floor and get some kind of idea of what to do or where to go afterward treatment-wise based on that.

I'm going to try to make this as productive as possible so I have some questions regarding preparations. What should I expect, what should I come prepared with and be prepared to talk about, what questions should I ask, what information should I seek? Should I try to obtain a copy of the pelvic MRI I had a few months ago beforehand? What are all the causes of PN that are verifiable by pelvic floor evaluation? Basically, looking for any tips on how to make it as fruitful as possible. Thanks in advance for any help.

[Joe house]

First I'm sorry you are going through this I know how incredibly painful this is. I have been in pelvic floor dysfunction therapy on and off for a year. My advice being a man is to tell them all your symptoms no matter how embarrassing. And for it to work you have to learn how to completely relax during therapy in order for the pelvic floor to release. That is easier said than done, if they are doing internal work. The internal work can be very painful but stick with it because it will be worth it. They may have you get a wand to use internally in order to release your pelvic floor at home, I would be as gentle as you can because you do not want to trigger a pain cycle.

If your pelvic floor is so tight that it is affecting your pudendal nerve the main thing you will want to do is keep the pelvic floor muscle tension as low as possible, watch your stress levels and learn to breath and relax. If you have anxiety like I do I find that I hold my breath and guard a lot which makes it worse very quickly. You also want to be careful with what exercises you do, because for me working my core makes it worse, I have to do very low impact exercises. Doing any kind of squatting is a killer. I can get into more detail if you want me to PM me anytime Good luck it can get better Joe

[Cade]

Thank you Joe. I will PM if you have I have any questions about your personal experiences.

One of the reasons that I've been so hesitant about going is that I have some irregular symptoms that I haven't seen discussed on the forum and in addition to the fact that I haven't come across anyone for who the same event set their PN into motion it makes me feel like my cause is irregular worsening my chances at diagnosis and successful treatment.

[Violet M]

Hi Cade,

Looks like these people are really experienced with treating pelvic pain and PN. Kathleen Novicki has been on our PT list for a long time. I agree with Joe that it's important to be candid about your symptoms for a proper diagnosis. My guess is they have seen a lot of symptoms that we may have never heard of on this forum and something you tell them might be the important piece of the puzzle that helps them figure out what is going on.

Violet

[Cade]

I just made an appointment for the 12th. I asked for someone who was educated and experienced with pudendal neuralgia and the receptionist said they all were, which kind of makes me nervous but I guess we'll see.

[Cade]

Sorry for double posting, but what is the recommendation on frequency if I do decide to go through with PT? I'll probably only be able to afford once a month. Is that too infrequent?

[Violet M]

My guess is they are going to want to see you at least once or twice a week but you should have an idea pretty quickly as to whether it is going to help or irritate. If you have seen absolutely no improvement after 6-12 sessions I believe it is unlikely that you will. If the therapy causes flare-ups, I think it is unlikely to help. At least that was my experience. I think one of the important reasons for PT is to find out if you have some musculoskeletal issue that is the underlying cause for your pain. For me it was bad ligaments and SI joint dysfunction that contributed to the nerve irritation. The PT was able to diagnose those problems. So, even if I did not continue with any PT treatments, it was valuable information to have had the evaluation. So if you can't afford lots of treatments, it might still be worth the evaluation.

Violet

[Cade]

Lot of snow and ice expected tomorrow so I canceled my appointment, it will be the 26th instead.

[Violet M]

Awww, too bad. I guess better not to be trying to drive on ice.