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**sully02** · 07-28-2011, 05:00 AM

Sorry Claire, I don't have an answer but wanted you to know that I am in the same boat. Since recently starting PT for PFD my Vulvadynia and burning with urination has increased a lot. Now wondering if it is helping me at all. She also does the trigger point massage. She told me I have a lot of trigger points. She had me doing kegels and that really put me into a severe spasm. now I have new pain in an area that did not bother me before. Just wanted to share my pain with someone who really understands. Hopefully, we can get answers to this. Please keep me posted as to your progress. I have put mine on hold for 3 weeks.

sully

**Claire_A** · 07-28-2011, 02:17 PM

Thanks guys

Sully,

Nice to know someone is in the same boat!! Thankyou!. I am not new to this however, I have been doing this for the best part of a year. It seems if I do not touch or aggravate the area at all my daily pain is at 2 (providing I don't sit too long or wear anything that causes pressure) after PT yesterday it has gone up to a 5. The burning is horrible, is this the case with you? I just can't understand it at all, nobody apart from us seems to have this issue. I am seeing a different physio tomorrow (I see two at the moment) so I will ask her as to why this is happening. I agree with bluegoo though that keagles are a no no.
I will post back after my physio appt to let you know what she says.

Bluegoo:

PT flares me for a few hours and then I go back to my daily pain level. Sex did become completely pain free after about 6 months of PT, this lasted for 2 months until I stopped doing the trigger point work at home. Daily pain however, remains unchanged throughout the duration of therapy. My pt is very very gentle.

Thanks for the tip with the lube. We use either olive oil or Yes waterbased lube. It seems to help some but I will look into the one you use.

Do you still have burning with sex/ daily pain after 1 year of pt? I don't feel like I am getting anywhere and have changed therapists twice. I am unsure if you have heared of Marek Jantos but he is considered the best in the business here in Australia. I paid a bloody fortune for months and months. The ladies I see now are both very gentle and are applying the same teqnique as eachother, I could not afford to keep up with Marek.

Claire

**sully02** · 07-29-2011, 04:37 AM

Claire and Bluegoo,

I do get burning in the vulva area that has returned since starting PT. I also burn a lot when I pee. I also have IC and it has been really good because I have had 3 nerve blocks in the last 4 months, but the burning is new again since the PT. This is my 3rd try with a PT. When I went last I told her I could not do kegels that I felt they were causing me more pain. So she only did internal massage, heat and stem therapy. I do feel she is knowledgeable in IC and PFD but am not sure why she suggests the kegels. At this point I will continue with her and see if she will not push anymore for the kegels. I am already driving 50 miles each way to see her since I live in a small community and the 2 other PT I tried were not successful in treating me. My IC nurse told me NO KEGELS also.......she has tried to tell these PT that IC does not respond to them but they are doing what they were trained I guess. Anyway, I asked her for some home therapy I could do myself, like exercises and I would like to learn how to do self massage. I cancelled 2 appt with her this week because I felt so bad and now have company coming so I told her I would call when they left. My plan is to go back to her for a while and see if she has a plan of treatment for me. Bluegoo, are you saying that you go once or twice a week for 6 months or longer now? Should I not expect a cure from her but only treatment to make the trigger points not so tight? I still have not had sex and would love the idea of my partner learning how to massage those trigger points for me. Isn't it kinda hard to get your fingers turned around the correct way to really massage well??? Do you want to explain how you do it for me? If not I understand.
Claire, I have been using lidocaine, nystatin cream and muscle relaxants which all help for a short time. I am so sorry you both have to go through this, it is really a pain in the ass, ha ha pardon my pun. I do appreciate talking to someone that does not have that blank stare in their eyes or the look of horror when I talk about it. It is weird now because I talk about it as if it was my arm or neck or any other part of the body. I forget that others are embarrassed by it.
Keep me posted on your progress both of you and thanks for listening.
sully

**sully02** · 07-29-2011, 04:43 AM

One more question for you is do your PT use electrical stimulation with an internal probe? Mine did that once. MY IC nurse said that caused my frequency and urgency. What are your thoughts?

**earthlady** · 07-29-2011, 09:48 AM

I can remember feeling very irritated after the internal pt work. It would last until the next day. I cut the visits to once a week instead of twice a week. Near the end of the two months of pt I noticed I wasn't getting as irritated as I was when I first started though so I don't know if my skin just got used to it or the pt itself helped to calm down some of the nerves in that area. It was not my most pleasant therapy to be in but it did help with the pelvic floor muscles.

**Claire_A** · 07-31-2011, 03:25 PM

Bluegoo

Thanks so much for your informative post.

I have found that Pt has helped my burny sex pain more than it has helped my daily pain (I think the daily pain is nerve related) I was for a time, pain free during sex (about a month) but then I stopped doing my trigger points, however it seems now that whenever I do them it takes me 3 days to go back to my normal pain level. My pt also said my trigger points were the best she had ever seen them the other day and I said well that is strange because I have not done any work on them in the past month. It seems to me that the trigger point work angers the nerves which tighten the muscle and cause trigger points. I am almost inclined to stop all together for this reason, but I know that it is Pt that has gotten me this far, very confused.

How long did it take for you to notice a difference? I seem to be the opposite to everyone I talk to. Everyone else seems to have their daily pain lessened by pt but the sex pain stays the same. I am the exact opposite.

My daily pain has not reduced at all really since starting pt.

I also use the cushion and find it helps so much, I simply can not sit normally now I have gotten used to the cushion!

I am glad things are going so well for you! My IC hasn't formally been diagnosed just based on symptoms but I am doing really loosely sticking to the diet so I wonder if my bladder symptoms are never / muscles only, as with you?

**Claire_A** · 07-31-2011, 03:29 PM

Sully

Originally posted by sully02 View Post

Claire and Bluegoo,

I do get burning in the vulva area that has returned since starting PT. I also burn a lot when I pee. I also have IC and it has been really good because I have had 3 nerve blocks in the last 4 months, but the burning is new again since the PT. This is my 3rd try with a PT. When I went last I told her I could not do kegels that I felt they were causing me more pain. So she only did internal massage, heat and stem therapy. I do feel she is knowledgeable in IC and PFD but am not sure why she suggests the kegels. At this point I will continue with her and see if she will not push anymore for the kegels. I am already driving 50 miles each way to see her since I live in a small community and the 2 other PT I tried were not successful in treating me. My IC nurse told me NO KEGELS also.......she has tried to tell these PT that IC does not respond to them but they are doing what they were trained I guess. Anyway, I asked her for some home therapy I could do myself, like exercises and I would like to learn how to do self massage. I cancelled 2 appt with her this week because I felt so bad and now have company coming so I told her I would call when they left. My plan is to go back to her for a while and see if she has a plan of treatment for me. Bluegoo, are you saying that you go once or twice a week for 6 months or longer now? Should I not expect a cure from her but only treatment to make the trigger points not so tight? I still have not had sex and would love the idea of my partner learning how to massage those trigger points for me. Isn't it kinda hard to get your fingers turned around the correct way to really massage well??? Do you want to explain how you do it for me? If not I understand.
Claire, I have been using lidocaine, nystatin cream and muscle relaxants which all help for a short time. I am so sorry you both have to go through this, it is really a pain in the ass, ha ha pardon my pun. I do appreciate talking to someone that does not have that blank stare in their eyes or the look of horror when I talk about it. It is weird now because I talk about it as if it was my arm or neck or any other part of the body. I forget that others are embarrassed by it.
Keep me posted on your progress both of you and thanks for listening.
sully

I spoke with my PT yesterday and she said it is common for some people to get flared up. She asked how often we are having sex and I told her about 3 times a week so she said do the trigger points prior to sex only. I hope this helps, I will give it a go.

**SFGirl** · 07-31-2011, 05:54 PM

PT COMPLETELY flared up my vulvodynia to a pain level of 10!! And everything else flared as well. After 10 treatments, I wasn't getting anywhere - I was much worse off, esp my vulvodynia.

We took a break and I started Lyrica. The lyrica calmed my body down to my "usual" level of pain before I started PT.

I went back to PT and with lots of modification to my treatments, the flaring is less. She trys her best to stay away from the pudendal nerve and its branches. I still have it after every session, but it tapers down by my next session.

All my docs say that I have pretty severe central nervous system sensitisation, so I'm just super prone to flaring.

It's important that your PT takes your flares into consideration and come up with a plan to reduce them. This may require pain medication or shorter or less frequent PT sessions.

**Claire_A** · 07-31-2011, 07:47 PM

Originally posted by SFGirl View Post

PT COMPLETELY flared up my vulvodynia to a pain level of 10!! And everything else flared as well. After 10 treatments, I wasn't getting anywhere - I was much worse off, esp my vulvodynia.

We took a break and I started Lyrica. The lyrica calmed my body down to my "usual" level of pain before I started PT.

I went back to PT and with lots of modification to my treatments, the flaring is less. She trys her best to stay away from the pudendal nerve and its branches. I still have it after every session, but it tapers down by my next session.

All my docs say that I have pretty severe central nervous system sensitisation, so I'm just super prone to flaring.

It's important that your PT takes your flares into consideration and come up with a plan to reduce them. This may require pain medication or shorter or less frequent PT sessions.

wow, it seems there are more like me out there!

It has been mentioned to me that I have Central sensitisation too as I had burning in my hands and feet which has now gone and buring in my scalp. Do you have the same symptoms?

Lyrica just flared my bladder out of control and my bladder has been pretty good since being off it. V is horrible though. I may ask my pt to stay away from the PN.

Very interesting that others have this central sensitisation thing. Did your v and ic come first or the sensitisation?

Thanks,

Claire

**sully02** · 08-01-2011, 07:26 AM

Bluegoo, Thanks for your very informative post. I feel so happy to have you and Clarie and all the members of this board to talk to, I really think I would be a weeping, crying mess if I did not have this support. Anyway, I was very interested in your ways of doing self massage. I just got a book called Healing Pelvic Pain which was recommened by Jill here on this website. It is awesome. In describing pelvic pain I have almost all of the symptoms and am now wondering if PFD is at the source of my problems besides IC. You described how to do the massage almost exactly like the book. The book also has a variety of exercises that I can do at home. I also love to exercise, when I feel well and bike riding is my favorite and my PT told me to not ride for awhile. So I understand you not running and feeling frustrated by that. I plan to do the first level of exercises and try the self massage some..............I guess I should go very slow at first?? I am not going back to PT for a few weeks but do plan on returning to her. But NO KEGELS. However, the book has kegels in there too.................kinda makes me crazy that we have so much contradicting information. She was very good the last appt and just did massage and I felt she heard my complaints. Which in itself is good since most of the Drs I have seen do not know what I am talking about most of the time. I feel blessed to have a very good nurse who is extremly knowledable in IC. The book said that vulva/vaginal irratation with burning, itching and painful urination could all be caused by PFD. I have not been told I have central nerve sensitisation but I sure have a ton of sensations that are painful!!

Hugs

Sully

**Claire_A** · 08-01-2011, 12:57 PM

Sully

I have the same book!

The keagles are meant for once all the pain has gone to strengthen the muscle so the dysfunction doesnt happen again.

The book is so informative but I felt that to do all the stretches etc as many times a days as she suggested at 30 mins a time, I was doing them all day. I felt my whole day was taken up with controlling my pain (and it wasn't doing enough for me to continue at that level) I did however feel much better after doing the stretches so I have kept up with yoga 3 times a week.

**SFGirl** · 08-01-2011, 02:10 PM

Originally posted by Claire_A View Post

wow, it seems there are more like me out there!

It has been mentioned to me that I have Central sensitisation too as I had burning in my hands and feet which has now gone and buring in my scalp. Do you have the same symptoms?

Lyrica just flared my bladder out of control and my bladder has been pretty good since being off it. V is horrible though. I may ask my pt to stay away from the PN.

Very interesting that others have this central sensitisation thing. Did your v and ic come first or the sensitisation?

Thanks,

Claire

Hi Claire! Yes, I have burning hands and feet too! Sometimes it feels like my skin is burning, other times it feels like the burning penetrates into my bones. If my hands get cold or like if I stick in the fridge, its like a cold burn, similar to keeping your hands in a bucket of ice for too long.

I also have lots of other symptoms, like migraines, fatigue, and eye pain.
I think IC came first. I've had IC-like symptoms since I was a child, but it got severe at the same time V got severe, and unfortunately PT makes the V worse.

My Pt tries her best to stay away from the actual pudendal nerve itself, but the nerve branches out to innervate the entire lower back/genital region, so it is impossible for me to get PT without irritating the nerves.

It's always interesting to meet others in the same boat! If you don't mind me asking, how are you treating these other central sensitization symptoms?

**Claire_A** · 08-01-2011, 03:47 PM

Originally posted by SFGirl View Post

Hi Claire! Yes, I have burning hands and feet too! Sometimes it feels like my skin is burning, other times it feels like the burning penetrates into my bones. If my hands get cold or like if I stick in the fridge, its like a cold burn, similar to keeping your hands in a bucket of ice for too long.

I also have lots of other symptoms, like migraines, fatigue, and eye pain.
I think IC came first. I've had IC-like symptoms since I was a child, but it got severe at the same time V got severe, and unfortunately PT makes the V worse.

My Pt tries her best to stay away from the actual pudendal nerve itself, but the nerve branches out to innervate the entire lower back/genital region, so it is impossible for me to get PT without irritating the nerves.

It's always interesting to meet others in the same boat! If you don't mind me asking, how are you treating these other central sensitization symptoms?

Perhaps we need to calm down the nerves prior to pt. This may suggest why I have only progressed so far. Then there is the hormonal theory - I have recently come of OBC to see if that helps. It seems to be helping my IC but not V.

I wonder if I am the same as you and PT will always irritate the nerves, I hope not. I always wondered during my intensive therapy why it would burn so much afterwards. The specialist never new and just put lidocane all over me after the session to stop the nerves firing which would cause the muscles to tighten back up (undoing all the work of that session) perhaps that’s why I felt so well after coming back from the 4 days intenstive work - because lidocane was used to stop the nerves firing after all the muscle work. Now nobody uses lidocane on me afterwards.

I am currently seeing a naturapath/womens health physio/nutritionist all rolled into one lady. She mentioned the connection between my b vitamin deficiencies and nerve pain. My b12 is fine though just the others. Not found a solution for the other central sensitization problems.

I was using Endep25mg for the burring hands and feet and scalp (worked great) but after smoking weed on it changed my mind, I came off cold turkey after 5 months. My hands and feet went crazy for 4 days and then the symptoms disappeared! I get it occasionally now if I am tired, if I drink alcohol or if I am stressed. It doesn't seem to bother me and hasn't for about 2 months. The burning scalp remains however, but only bothers me if I touch it or run my fingers though my hair.

Not sure where to go from here really. My bladders actually really bothering me today. I had grapes yesterday....I miss grapes.

Hope you are feeling ok today.

Claire

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