Hi Kathi
Well, since I wrote I have had 2 appts. One appt she did Biofeedback to give a baseline on my pelvic floor muscles and we did some exercises to see how they were working.. They were tight, but not as tight as she expected. I dont put a ton of stock in bio, but do see it as a tool.
She also has done more myofascial work and then this week did skin rolling on my abdomen/pelvic area. I do think it is going to take some time to loosen my muscles. I find it funny ( sad) that that may be the only tight muscles I have at the moment. :(
There is one other Pt closer to my home that works on women with this problem and PFD, so I am going to ask her questions. I don't know how I should know whether to stick with this one, or try another.
I continue to use the dilators as well ( in the tub) and have purchased a bunch of candles ( pumpkin spice, pine etc) and bath scrub brushes etc. to make my tub nice since I have to do something that isnt as pleasant.

Hi Jess,

Yep, I remember well the Biofeedback tool. :) It IS helpful; gives you an idea how well you are progressing.

The best advice I can give right now is to stay with it since you are making some progress. It can take awhile. The first time was 6 weeks and so too was the second time I did this. I THINK I said that it was about the 3rd session when I noticed significant pain reduction. But also, after that very first session I got some relief. I remember being able to drive home without too much pain at all...just the soreness. There is no harm in asking questions. Let me know what the other PT has to say and I wish you well. :)

Thanks Kath. I was researching and ordered this book by Dr Wise, a PHD at Standford, called A Headache in the Pelvis. I need to learn how to relax my pelvic muscles myself. It also concentrates on using Myofascial Release and Trigger Point Therapy as the core methods for working on the tight pelvic floor.
I also use the dilators at home to help with that, and got a little over ambitious yesterday, and am in a pain flare today. :(
Also my PT wanted me to try using Valium Suppositories to directly get the medication to the pelvic floor. This is a therapy that is used and I am going to try it and see how it goes. i know patience is a virtue, wish I had more of it!!
thanks Jess:)

Hi, When you mentioned painful periods and neuropathy I wondered if by some chance you have low B12. If you have ridges on your fingernails or are losing your moons, that can be a sign of low B12.

Plus, if you are short of B12, then it might be that you are also short of magnesium which is just about as hard to get out of food as is B12.

Magnesium relaxes muscles.

I use magnesium for headaches since I read up on it, and it works great.

It's useful to know that taking calcium or eating calcium rich foods can lead to problems like increased pain and bone spurs if we don't take enough magnesium with the calcium for our bodies to use it properly.

I hope things clear up for you.

Ouch! Just went to the urologist...this situation is back for me. Treatment.. valium. I also gave them a urine sample for a culture. I have that book "Headache in the Pelvis"...it is wonderful!!!
PLEASE tell me what a valium suppository is???
Never heard of this.
Is it helping?
I am hoping since I caught this early...it will dissapate early.
Have any of you guys ever had an xray...btw? I have heard there is another disorder called "pelvic floor congestion" with similar symptoms...although it is rare.
Mine started after a very bad bladder infection...so the thought is...it is PFD...w/ no bladder control issues. Just pain!

Hello
A valium suppository is just that. A suppository that has to be compounded at a pharmacy and is used for pelvic floor dysfunction, as it is placed inside the vagina directly affecting the pelvic floor.
I have been going to a Physical Therapsit who specializes in PFT so it has been quite helpful as she works internally on loosening the muscles.
Jess:)

Hey Jess,

i went to my second Pelic floor PT session and they did external work and internal work. I was not expecting the intenral work so it wa a surprise but wow I certainly learned that muscles are spasming down there. Was well worth the visit.

They gave me some exercises to do and I am gonna go back for another session. BUt the internal work certainly helped free those muscles.

Shelly...I was sad to see you here posting on this thread...in a way. (hugs). This stuff is soooo painful. This problem has really "bugged" me to say the least. When I went to pt, she gave me some good tips/exercises to do. For one thing, she told me to never force empty my bladder. She felt that I was straining my bladder/pelvic muscles at times. It was all "news" to me and awkward. Who new? Oh...and for a few days I can't exercise aerobically...I'm bummed about this.

Anyway, tonight I took two liquid gel Aleve tablets and 1/2 tablet of Valium (2.5 mg. of Valium) along with my heating pad. I was pleased that the combination treatment was helpful. The liquid gel tablets put a dent in the discomfort.

I will inquire about the suppository...thank you Jess for the information. I did see info. about that on the IC website and thought it was interesting.

BTW, I take plenty of B12 and Magnesium as well. However, I should add that I had been negligent about taking the Magnesium regularly. I do believe that these things are important and helpful.

I am glad you found it helpful. My nerve pain today is horrible. It seems to eb and flow, good days and bad. YOu can ask your PT lady to show you how to do some internal trigger point therapy after awhile when you feel comfortable. I do this, ( pressing on a trigger point for 60 sec to release some of the muscle tension) and I also use dilators every other day to stretch the muscles in the pelvic floor. If anyone wants a link to those let me know. I have been going for about 3 months, and according to one PT I may be going for a year or so for pudendal neuralgia.
I had another injury about 7 weeks ago as a lady hit our car, and that added pelvic instability and low back pain to the issue, so I see my PT for back to back sessions. It may be a long hall, but PT is worth it. Let us know how the PT goes Shelly too.

Hello Jess,

My wife was diagnosed with IC, PFD, and vulvodynia. She is in debilitating pain most of the time. We are looking for a PT that will do internal therapy. Could you provide me with the name of your provider? We are having a difficult time finding someone in Charlotte. I would appreciate your help.