physical therapy questions

[gracie]

Hi all,
I am wondering if anyone can help me with a couple questions. There are no physical therapist that are specifically trained in PN therapy where I live. I found one that has heard of it and has treated one other person with it. I don't know the specifics about that person or the outcome. I have never been told that I have any kind of pelvic floor issues. I went for my first appt and she felt inside my vagina. She said that my left side feels very tight and the right side does not. All my pain is on the left side of my body. It is not inside my vagina at all. It is outside labia, buttock and hip burning and sometimes down back of left leg. She also said my hips are not aligned. We are starting with the vaginal muscles and then she said she may want me to see an osteo therapist. I assume that means to help align my hips. Has anyone else had this kind of physical therapy. I guess because there are not any trained therapists in my area, I have not kept up on what kind of physical therapy is out there for PN. Does this all sound right? I don't want to end up worse then I am now. I did print out info from this site to give to her. I just want to know if I am heading in the right direction. Any info would be greatly appreciated.
Lastly, love the ones close to you. I just lost my Dad to cancer last week. He was always wishing me to be better. I want to continue to search for treatments so this can happen. It would have made him so happy to see me healthy.
Thanks,
Gracie

[jamiegross]

I am wondering if anyone can help me with a couple questions. There are no physical therapist that are specifically trained in PN therapy where I live. I found one that has heard of it and has treated one other person with it. I don't know the specifics about that person or the outcome. I have never been told that I have any kind of pelvic floor issues. I went for my first appt and she felt inside my vagina. She said that my left side feels very tight and the right side does not. All my pain is on the left side of my body. It is not inside my vagina at all. It is outside labia, buttock and hip burning and sometimes down back of left leg. She also said my hips are not aligned. We are starting with the vaginal muscles and then she said she may want me to see an osteo therapist. I assume that means to help align my hips. Has anyone else had this kind of physical therapy. I guess because there are not any trained therapists in my area, I have not kept up on what kind of physical therapy is out there for PN. Does this all sound right? I don't want to end up worse then I am now. I did print out info from this site to give to her. I just want to know if I am heading in the right direction. Any info would be greatly appreciated.
Lastly, love the ones close to you. I just lost my Dad to cancer last week. He was always wishing me to be better. I want to continue to search for treatments so this can happen. It would have made him so happy to see me healthy.
Thanks,
Gracie

Hi Gracie,

I say give it a shot and if its not helping after several sessions, then you can decide if you think she is a good enough PT.. If she felt that the same side of your body that you have pain on is tight, that is probably an area that needs work so it is good she is starting vaginally.. and hopefully that is very related to the labia pain and it will calm that pain.. I have not seen an osteo therapist, nor do i know what that is.. but i have been doing PT.. usually i feel worse from it that day but the next day i feel better and that it helped

i'm new to all of this so i dont know as much as other people on the site, maybe someone else could be more helpful.. but i'll try to help as best i can

[JeanieC]

Hi Gracie,

I am so sorry to read that you have just lost your father. Losing a parent is so hard, I do feel for you.

Regarding your PT questions, I think you would be OK allowing her to work on your tight left sided muscles since your pain is on this side that would seem to make sense. If after a few sessions it only seems to make things worse, I would stop though. I don't know about the pelvic alignment, I would be more worried about that as I have read that one person developed sitting pain from a PT doing this. I did a try PT before surgery, which did not help, but did not seem to make anything worse though. I am also trying to make a decision about PT after surgery.

Hugs,
Jeanie

[gracie]

Hi Jamie and Jeannie,
Thanks for the responses. I guess I will give it a try. Hopefully it won't hurt.
Jamie, are you new to PN? I wish you luck in getting well.
Jeannie, I see you had TG surgery. I had the TIR. Do you feel the TG surgery has helped you? Are you better then before surgery. I have considered another surgery, but I truly hate the thought of traveling and the long recovery again. I am trying to do everything I can before that as a last resort. I feel I am somewhat better after surgery, but my lifestyle has changed drastically as well, so I wonder sometimes if it was the surgery or the changes I've made that have really helped. I am always interested to here how others consider their recovery from surgery. Best of luck if you decide PT. I will be glad to keep you informed on how mine goes.
Gracie

[JeanieC]

Gracie,

I am right at the 6month post surgery date, and have not really noticed any great difference either in pain location or in intensity. I am so discouraged as I had really hoped to see at least a little improvement by now. Still hoping of course, since many people report taking a year or even more to notice much change. My pain is left sided too. I would like to know how you do in physical therapy, do hope it helps you. I would like to know specifically what does help, as trigger point pressure just makes me hurt more. I am doing water exercise classes, but not any jumping up and down, just stretching the lower body muscles and some strengthening as well as stretching upper body. I had to find something I could do that does not involve sitting.

I see you are just one year post op, so I think you are wise to try whatever else you have not already done before redo surgery.
Jeanie

[stephanies]

Jeanie,

Six months is not a long period of time to recover from PN surgery. You could still see improvements from the surgery and your body is healing every day. Please don't get discouraged!

Gracie,

I think one of the mistakes I made was continuing PT when it was clearly aggravating my PN and pain rather than helping it. Everyone is different so do what feels right for you and your body.

My best to you both,

Stephanies

[jamiegross]

Gracie,

Yes i am new to PN.. i only first found out about it last month and it seems to match what i have been going through.. i don't really have perineal pain though which makes me doubt that i may have it, but I won't know for sure till I see a specialist.. thank you for the luck, i'll need it .. im currently prepping for a 14 hours flight to australia that leaves tonight ( i'm studying abroad for 4 months).. i've been sick in bed for the past hr because my lower abdominal pain is making me nausous, so im extremely nervous to see how this flights gonna go.. this trip may not be the best idea for me, but i got tired of putting my life on hold ( im only 20)

I'm so sorry about your father.. i can't imagine dealing with such a loss and this illness on top of it.. stay strong

[KC17]

i got tired of putting my life on hold ( im only 20)

Hi Jamie,

I understand that statement whole heartedly. I'm one of the younger people on this forum (I'm 23) and I feel like I've got my whole life ahead of me, but I've already got something that is holding me back.

Feel free to PM me.

Best Regards,

Krista

[gracie]

Jeannie,
I will definitely keep you up to date on my therapy. 6 mos is still early so stay optimistic. I went for therapy today. We only worked on the external part of my body. The good news is my therapist is going to Chicago in March for a conference. The conference is 3 days. One of the days is on PN. I also found out that she is treating another female with PN that is from my area. I was so surprised. I immediately asked her to give the girl my name if she wants to get in touch with me. I honestly can't believe there is someone here where I live that is like me. I do hope she contacts me.

Jamie,
You are so young and you do have your whole life in front of you. I pray you are cured. I am 41, and single Mom to two beautiful daughters. I know the feeling of having your whole life in front of you too. I thought I had a new chance at life and to give my girls a happy family. Then this thing happened. It holds me back too. I have also tried to live life as best I can and not be held back. It is just that little nagging thing in the back of my mind that constantly makes me scared about the future. Don't give up though. There are doctors that do want to help us. My therapist told me today that she was glad that I had done so much research and could give her information that might help. I flew last year before my surgery. I found it helpful to sit in a window seat. There was a little spot between the seat and the wall of the plane that I could put my foot on and take pressure off the spot that hurts the most. Not sure if this will help you, but I hope you have a pain free flight. Good luck on your study abroad. It sounds so exciting.

Wishing everyone well,
Gracie

[jamiegross]

does anyone find that any type of sitting flares their vulvar pain? i sit soo strangely to avoid putting pressure on my vulva and it still manages to cause me pain.. so strange though because i didnt have an issue with sitting until a few weeks ago!