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  • Finally an explanation of the burning and itching

    I was very enlightened by today's PT. I was so nervous about going because of fear of having a flare during the internal work. (first time with the internal work) My fear stemmed from a severe flare I had yesterday due to stress, which caused me to go every five minutes, even less than that at times, being doubled over in pain. It lasted about two hours until I took Klonopin....which thank God worked.

    Thanks to God the appointment today went well, despite my nervousness. I want to share my experience in case it can help anyone. Firstly, the therapist massaged on the inner thigh area. I didn't even know I had the specific muscles she was pushing on. The pain was like a 6. I asked her if that was normal and she said for most people it's not, unless of course they have bladder issues or other things to cause that tightness. It felt like a burning sensation with tightness, like a rubberband. Now I consider myself to be flexible and have practice martial arts for a number of years, so therefore never would have thought those particular muscles would be so tight and painful. Those muscles are the ones closest to the pelvic area that can have an effect on the pain in the pelvis. Ok...so then she was doing (light) stretches internally, both as a test and treatment. The pain, and sudden burning and itching was unbelievable. I could feel pain that radiated to my backside, and suddenly it felt like I had an infection, like the sensation of having a yeast infection. Even my urethra felt this odd itching sensation when she pressed on muscles internally on the sides. I asked her why suddenly I had those strong symptoms. She said that from the tightness of the muscles, all the nerves in and around the area get affected and cause the burning and itching, with absence of infection. In fact, she said some patients' main issues are burning and itching.

    This is crazy to me. All the pelvic pain, back pain, chronic severe itching, burning, not to mention flares and frequency, has be been exacerbated due to muscular issues. So if there is already a bladder condition present, the muscles tightness can make it worse, or for some cause it, as well as cause hosts of other symptoms. Unreal!

    We discussed stress today because it's a major flare trigger for me. So my homework is a bladder diary, some pelvic floor relaxation exercises and deep breathing.

    I recommend for those considering PT that they absolutely find someone who specializes in this. My PT said that it's necessary to get the additional training to treat this patient population. My doctor also only recommended two specific doctors from a long list of doctors. My PT is actually listed on this site which I was happy to see. (I found that out afterwards)

    I'm not suffering in too much pain after treatment but do have discomfort and more burning than usual, and like before, would assume I have an infection of some sort. (which of course I don't) I can't tell you how many times I went to the doctor to be checked for yeast and all sort of other things and was told nothing was wrong. Heck I was checked for Edometriosis and was almost started on treatment due to my complaints of chronic cramping and sensations as thought my period would come. I didn't have signs of Endometriosis but the doctor was desperate to help me and listened to my symptoms. He also thought my painful periods could be a symptom. But the Urogynecologist said pelvic and bladder issues can make period issues work. Go figure! Had no idea about that.

    I can never say enough how VERY GRATEFUL for this site and all of you who have taken the time to help me. If it wasn't for this site I wouldn't be getting the proper treatment that I'm getting now. I don't know what I'd do if I didn't have this site and would be such a wreck emotionally because of this condition. I'd be continuing to go to doctor to doctor and always feeling depressed that I had some strange vaginal problem, infection, or something else. At least now I have an idea as to how the pelvic region works, how stress affects that region, and that I can maybe someday have some relief from my symptoms. (a little relief for me will be miraculous)

    I was hesitating to take the Gapapentin that the Uro described to be honest. (due to my strange irrational fear of medicine) But now after today's appointment I can understand how many nerves are being affected. So I'm praying the Gabapentin can offer relief. For me the worst thing I think is the unexpected severe flares with pain. Seriously, those darn things are debilitating. I'll be glad for the day when they are more under control.

    Thank you all again! Wish there was a better more profound way for me to say thank you.

    Any comments or discussions would be great if you have time!
    Last edited by Toto; 09-07-2011, 02:59 AM.
    Frances

    Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

    Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

    Other conditions: Migraines, allergies, mild IBS.


    "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

  • #2
    I'm so happy for you. The pt for this can be a tremendous help. You are lucky to find a qualified therapist who knows what she (or he) is doing. Mine was good but not as experienced as I would have like her to be. I still do all my pelvic stretches at home even though I haven't been bothered by pelvic floor spasms in a good while.

    Comment


    • #3
      The combination of physical therapy and amitriptyline saved my life. My pain at diagnosis had reached a level where I no longer saw dying as a bad option. Three physical therapy sessions in, I was able to resume my normal life, and my pain lessened as the months went by.

      Let me know what you think about the Gabapentin... amitripyline definitely decreases my pain, but I've had some pretty bad weight gain on it. I'd love a different option!
      Symtoms started July 2010.
      Severe pelvic floor pain only.

      2 time PT graduate!
      In medical remission since August 2011; able to eat and drink anything I want currently.

      IC meds:
      200 mg Elmiron in the morning
      100 mg Elmiron @ night
      Macrobid after intercourse

      03/11 07/11 01/12
      If at first you don't succeed: 07/26/2013!

      Comment


      • #4
        Earthlady...thanks for your kind words and sharing your experience! I plan to do the exercises at home too.

        meResque...I couldn't tolerate the smallest does of Amitryptiline. I then was prescribe Nortriptolene. This was for migraines. I did well on the latter, and my mood was even good. Brought my migraine pain level down. However, on a small does I packed on like 7 pounds in a month. I'm a small person. So it was very noticeable and none of my clothes fit. I was eating like crazy and always hungry. I didn't have the willpower to control food portions, though I'm sure that would have helped. At that time I was too tired to exercise. So if you need to stay on that drug, if you can watch very closely your food portions and exercise (even a little) you might be able to beat the wait gain. Those drugs really do cause a lot weight gain (not in everyone...for some it has the opposite affect). I also went off it because it made me have trouble sleeping, even in the morning. I'm hestitating about the Gaba because of sleepiness it may or may not cause. I take Ambien to sleep, which works well, but I have another med that makes me very tired, even throughout the day, but doesn't help me to sleep. So complicated. I am nervous the Gaba will add to my daytime tiredness. I just have to try it. This weekend I will do so and will definitely keep you updated.
        Frances

        Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

        Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

        Other conditions: Migraines, allergies, mild IBS.


        "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

        Comment


        • #5
          that is good you found that out! I hope you find someone who can really help you get this under control.
          The body is this strange amazing thing. I think sometimes the nerves and muscles get confused too and cause pain elsewhere. I have had this pain in my left very lower abdomen that they think it caused my an ovarian cyst on my the upper side of my right ovary. I am it's so not in the right place, but apparently they are pretty sure.
          Good luck and keep us posted about pt etc!
          -Pammylynn Rose
          Wishing everyone a pain free bladder day!


          Painful symptoms start in May 2011
          Diagnosed with IC in Aug 2011

          MEDICATIONS
          Elmiron
          Axert (only for rare migraines)
          Strict IC diet
          Gluten/dairy/egg free diet


          Comment


          • #6
            Thank you for sharing your story!

            I have been terrified about PT and refused to go... when I had PT for my knee years ago it was SO PAINFUL that even though it made it better, I kept imagining that amount of pain in my pelvic area and stress out like crazy and then cancel my appointments.

            Reading this has made me more comfortable about going, it's still scary but I am definitely considering it now.
            Medications and Supplements:
            BladderQ
            Pyridium
            D-Mannose powder
            Cranmax

            Lifestyle:
            Lacto-ovo-vegetarian and IC diet
            Meditation
            Positive mental attitude!

            Comment


            • #7
              I recommend trying the PT. If you find the right person it could work. I'm desperate and will try many things these days. I try to look on the bright side... I will now be MUCH less modest. It just amazes me how much my body reacts to stress without my knowing it. The worst part for me is the deep breathing. Even though I know it works to reduce stress, I just hate sitting there and counting my breaths. Normally I do it in an emergency panic situation. Now it has to be a big part of my life.

              Pammylynn8...did you have an ultrasound to check for the cyst? It hurts like heck if it should ever burst. This past year I was convinced I had ovary issues because of chronic pain on my right side (have a history of cysts). However, there were no issues! It was crazy because the pain in that region was so strong. Eventually it went away and now I have other bizzare pains. So frustrating eh?
              Frances

              Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

              Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

              Other conditions: Migraines, allergies, mild IBS.


              "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

              Comment


              • #8
                Hi Toto..yes, i had an US three months ago and I am due for one again in 2 weeks. They are monitoring it for now. whatever that means, lol. Yes, pain is soo frustrating!!
                -Pammylynn Rose
                Wishing everyone a pain free bladder day!


                Painful symptoms start in May 2011
                Diagnosed with IC in Aug 2011

                MEDICATIONS
                Elmiron
                Axert (only for rare migraines)
                Strict IC diet
                Gluten/dairy/egg free diet


                Comment


                • #9
                  OH... I see... Yes, I remember that the doctors sometimes just monitor to see if they go away. They can go away on their own. One time I took birth control to get rid of one. Though I can't do birth control now.

                  I hope it goes away for you. It's so uncomfortable!
                  Frances

                  Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

                  Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

                  Other conditions: Migraines, allergies, mild IBS.


                  "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

                  Comment

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