Dear Carola;Can Matia do something about this problem?  I hope you can get some relief.  I'm sure there must be others who suffer from it. 

Hi
I would think that wouldn't be an uncommon thing to experiece with IC. I've read stories women have written with IC about having a feeling of orgasm mixed with pain--all the nerves down there get affected. Sounds like the nerves need to be soothed or calmed down? I know at times I've struggled with that, always mixed with pain and stinging but I didn't have it constantly. I'm sure there are message boards out there on this particular issue, i would think it wouldn't be uncommon with ic though. what does matia say?

One of the first stories I read had info on this and here is the web site.  Her name is Camille and she has a great web site.  She also used Matia.  www.icsuccessonline.com.  I found it by typing into Google- Camille IC story and the link came up in case this web site will not open.  It is an uncomfortable subject and there is not much written about it but Camille is open and frank.  For me sex was out of the question when I was in severe pain, but the tension seems to build.  It helped me to masterbate in the mornings when I was in the least pain of the day to relieve the pressure.   I was scared it would exacerbate things but it did seem to help and I didn't think the pain was worse during the day.  This is an embarassing issue but be sure that it is not unusual and you are not alone.  Your gut will tell you what is best for you.  Trust yourself. 

I just wanted to say that I do think there are others out there who are dealing with the symptoms of Persistent Genital Arousal syndrome. this is a different syndrome from vulvadynia which I think many of us have to some degree or another.  but I think it This sounds soooooo very hard to deal with! I have been a patient of Matia since May 2008. I went to her for treatment of these symptoms-constant pain in my bladder, painful menstrual cycle, and pain in my vagina,vulva and pelvic floor muscles. After the first year- my bladder was feeling better- not the best- but better. But it was at this time that the pain in my vagina/vulva/pelvic floor/perinium became stronger and more noticable. Perhaps it was always bad and my bladder overshadowed it? I am not sure. In my second year I had good days and bad days over and over again. Good then bad. better and then bad. It was very draining to my energy. I would go back and forth- one month it would be my bladder hurt more and then the next few weeks my pelvic tissue nerve pain would be all I could focus on. Sometimes they both would be flaring- like the vulvadynia pain would extend into my bladder and spread out and also my bladder pain would do the same. Does that make sense? It was and when it does come back it isV ERY VERY VERY hard to deal with. I get depressed and scared but i also have had times where I felt good so I know that I am moving forward more and more.  I DO NOT KNOW exactly what is causing the pain. I think it is yeast/bacteria that is  buried in the tissues causing the pain. It is different for everyone. Some people feel this pain or nerve sensation in their perineum area ( the sensitive area between the vagina and anus) some feel it in deep in the vagina others feel it in the vulvar tissues. Others just feel it all over - numbness and pain.  I have NEVER felt the  nerve pain become sensitized in my clitoris. But I think that this can happen with our condition. even though we have different sensations of nerve problems and they are distinct I still think they are connected back to the imbalence in our bodies and that treatment and time will improve these conditions. The good news is that it is treatable. Even though you have this particular VERY difficult and irritating symptom of Restless Genital Syndrome I think it is - just a  part of the greater imbalence that can happen or show up in our body. I was reading about Restless Genital Syndrome and it appears to be linked to restless legs syndrome? I definately do have that creepy crawly feeling in my legs and arms  for sure. It is mild for me but I do notice it. Matia says it is yeast.  I think as you get better that it will go away. I want to report that after 2 years of treatment both my bladder and my pelvic pain has improved ALOT. I still have vulvar pain and some burning pain in my labia to be exact sometimes - like right now I am flaring and if I press hard on that area it  will feel hot and sore  but I have had many days and even weeks where it felt soooooo much better and my pain and sensitivity was much much less. I know I am getting well. I have not been able to have sex for 2 years and I have recently been able to do so. It was not 100% without discomfort but it was CLEARLY so much better. My tissue which had been SUPER inflamed is healing and improving. Orgasms used to make me flare. They do not do that now- and like another poster said- masterbation helped them - I have to agree sometimes the pain would cause me my pelvic floor to tense up superbadly and brining myself to orgasm was helpful to dispelling the overall pressure and tension. I was also in a sense trying to imprint on my nerves a feeling of pleasure because it had not felt good for so long. sometimes any kind of pressure to my pelvis felt bad. However I understand with this particular condition of Restless Genital syndrome orgasms are not necessarily helpful. sometimes Matia doesn't make changes to my formula even when new symptoms show up - because she is treating the underlying imbalence that is causing the that new symptom. somtimes the symptoms can be very temporary.  You should stay in touch with her about it --I am sure she is taking your symptoms seriously and creating your formula with your symptoms in mind.  It  took very very long time but I am improving in this issue. Please do not feel embarrassed or strange in asking for support. You are not alone in dealing with a painful/irritating type problem such as this but have faith that in time it will get better. It took me a full 2 year of struggles to see some significant improvement. I have never cheated and I work VERY hard on the diet and in taking care of myself. sending you healing thoughts and energy. I know this is a kind of an intense subject- we are taught to think of our genitals as dirty and shameful but they are anything but that- they are sacred! You will get through this! - Peace be with you- Mary