I know it varies. I just began with a physical therapist this past Monday. I have tight pelvic floor muscles which may be impinging on my pudendal nerve causing pain IN any case, the PF muscles if i can get them loosened could possibly help a number of problems I have .. chronic constipation, painful periods, neuropathy.
I am doing exercises with dilators, taking 2mg of Valium to loosen the muscles, and she does myofascial release internally.
What do you do, and if you have PFD did PT help? How long did you go before you found some success?

thank you

Jess,

You already know my response...yes, it did work. Was Monday your FIRST appointment? I went twice a week but by the 3rd session I was pretty much well on my way to becoming painfree. She did have to release the Piriformis muscle too. Okay, well, I went for 6 weeks and it lasted about a year and then happened again. So, my Urogyn wrote another script for another 6 weeks. But this second time around the PT taught me how to use the dilators as well and I ended up purchasing my own. Since then and it is has been quite awhile I haven't had much problem at all. Anyway, my Urogyn has already said that this can be or will be a chronic thing and that if I need PT periodically, just to call in and he will write orders for it.

Oh, and Jess, your PT will probably eventually show you some exercises to help combat it. I had to laugh because the ones she showed me to do were almost like dancing LOL! So, sometimes I would just turn on the radio and do them. Still do at times LOL!

Hang in there and stay with it...I know sometimes it is uncomfortable after a treatment but the soreness I should say, passes within a couple of days.

Thanks so much Kathi, yes, I actually look forward to PT, even after the first session. Yes, Monday was the first one. I am hoping that either the pelvic muscles are impinging on the pudendal nerve, and once loosened, could help with pain, or the loosening of the muscles could help in other ways. It is possible that it plays a role in my pudendal neuropathy, at least that is what my nerve conduction test showed. I bought the dilators as well, and am using them on a daily basis. I have to take something afterwards as right now I have pain after internal work like that.
I would like to go 2 times a week, but perhaps because she is doing alot of internal work maybe she wants to start off slower, and also since my husband takes me to the appointments, it is hard for him to miss 2 days of working during those hours .. but we will see. I am so glad to hear about your positive experience!! Were your muscles tight or what issues where you having?
Thank you for the feedback Kathi!

Hi Jess,

Basically it was lumbar, sacral and coccyx nerve issues and/or nerve damage. But the symptoms were much like you said...constipation, extreme difficulty sitting for more than 10 minutes. I remember driving to my first appointment ALMOST crying from it and just dying to get out my car. Anyway, long story short...I went through a LOT of testing done by my Urogyn and spinal injections done by my spinal PM and THEN went into PT. I think the worst of it based on what the PT said was the Levator Ani muscle and then of course I had the Piriformis muscle compressing the sciatic nerve. So, she did internal as well as external work.

I can definitely understand going once a week for now and I know it is pretty uncomfortable afterwards. But it should pass. For me it seemed like two or three days so I also understand taking the medication. It is not a pleasant thing to go through but well worth it. Hang in there.

I've have had bouts of this pain off and on. It is not common for me to find posts discussing it. I don't even find that many doctors really know what it is. When the problem arises for me, I find it not only very painful, but awkward to talk about and cope with.
I was treated with valium and short bouts of physical therapy. The only PT I found who treated for this was NOT covered by my insurance and I could not afford long term care. I went when I had a bad flare and did get some help with PT...went about twice a week at times.
I also found heating pads to be a little helpful (lower abdomen). In addition, my doctor was willing to give me a small amount of a strong pain reliever to take if absolutely necessary.
Everyone is different, but I would consider trying a heating pad to see if it gives a little relief...something to add to your treatment plan.

Thank you , I appreciate your help as well. When I have my period, my husband likes to call the heating pad, my " best friend', but since I have had pudendal neuralgia, my main pain is burning , I don't use the heating pad, but need ice.
I have started Physical Therapy and certainly understand about the insurance. Mine will pay 80/20. She will be doing mainly internal work, some biofeedback, dilators, trigger point. I think I am willing to go for awhile if it can help me avoid any surgery. I am praying that this and the meds will help. I really didn't know what to expect when I first went to her, as I had never heard of this kind of PT. These types of Pt are harder to find, so it took some phone calls and research to find her. Do you still have problems now with this, and if so, what kind of pain do you experience?

I have problems with constipation and I have found if I push too hard, sometimes I am left with a very painful and deep pain in the pelvic region for weeks. There are times it is excrutiating. The PT is internal. No dialiators. I have gone briefly...perhaps 3 or 4 times each bout. I probably would have considered more visits if I had better insurance for this. Combined w/ medication, it is helpful. I wouldn't spend and inexorbitant amount of money on it though. There are back strengthening exercises you can do at home that also help a little and each time the pt reminded me what to do at home. (I forget each time...have to be reminded, etc.) They help the lower back and lower pelvis. The heating pad, for some reason, is soothing for me. The valium helps, but makes me tired. The episodes tend to not last (for me) more than about 3-4 weeks (thank goodness, because I do find them very tiring physically and emotionally). Ironically, diarreah can also trigger this problem, but not to the same extent as constipation. I have learned to be very aware of my "bathroom" needs, etc. and to be very quick with using a heating pad and relaxing my pelvic muscles if I have even the slightest bit of pelvic pain and/or tension.

Vowel Lady,

You are so right. It is very uncommon to find it being discussed so I am glad to see Jess posting about it and yourself as well. I should have clarified earlier that it was my Reproductive Endocrinologist who referred me to the Urogyn for this. And I should have added that I have a hysterectomy and have minor prolapses. But it was my spinal PM in conjunction with the Urogyn that sorted this out. In any case, it took a LONG time to sort it through it. So I know what you mean by some doctors not really knowing what is causing it. You and Jess are right. It takes a very specialized PT to do the work. I asked my Urogyn, since he keeps a list, how many there were in Indy. And at that point in time there were only 6. Friends and family have asked me before how I could possibly proceed with this; felt that it was an embarassement or awkward or however one wants to put it. Well, it is a bit embarassing BUT once I got past that it was nothing and I really learned alot from this PT. The thing is I am glad I went through with it because I almost didn't. I just couldn't fathom how it would or could help. But it certainly did.

Jess, another thing I use is a coccyx cushion ONLY when driving. But that is mainly due to the fractured tailbone. But it does help with the other. The other thing is a lumbar roll that the PT advised using. When I use that it pushes me up and forward taking the pressure so to speak off painful areas. I am not quite sure these two things would help in your case; just saying the help me due to the lumbar/sacral and tailbone issues. But the dilator is the most helpful.

Thanks again Kathi. Glad you made the step in going. Believe me, with pudendal neuralgia, I am past being embarrased!! When you get to the point of being in pain, you dont care where doctors look or what you say
I will let you know how the dilators work and yes, it is tough to find the Pt's who know pelvic floor dsyfunction and pudendal neuragia. I have only gone to the one I am seeing once and have another appt Thursday. Let you know how that goes.

Very true Jess LOL! It can get kind of funny actually. My Urogyn said...just be glad you aren't a guy! (Men can get this too). So, you can imagine. But in all seriousness, yes, it can be quite painful. Just one thing though and I hope I am not too graphic. Use the SMALLEST dilator or rather the PT should know and will probably tell you the same thing. Let us know how your next appointment goes and good luck.