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Diagnosis #3...having hope

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  • Diagnosis #3...having hope

    Everyone here has been so supportive and helpful and I would like to share my recent doctor's visit. Thursday I went to the new doctor I mentioned in another post. Her office is listed on this site.

    I received a new diagnosis on Thursday called MPPS. So far (starting 7 years ago) I have been diagnosed with three different conditions. First, at one of the best hospitals in this country, I was diagnosed with overactive bladder and was told no medications would work and that my only hope would be the Interstim. (had Urodynamic testing) At that time I decided to live with my condition and basically did nothing. Last year I sought out a urologist again because my condition has gotten worse over the years and the gynecologist said they couldn't help me. (could find gynecological issues) The new urologist did Urodynamic testing, as well as a Cystoscopy. No lesions or other issues were noted inside my bladder. I was diagnosed with IC, told to go to this website to read up on it, and was given a script for Atarax. The Atarax didn't work and they told me the next step is a Hydrodistention. (I can't tolerate Elavil or related meds and those were offered as well) I talked to my primary doc and he agreed with my decision to find a third doc and get yet another opinion. So I found a Urogynecologist because I heard about that kind of doctor on this website. The doctor I chose coincidentally is on this site as a provider. (so I was glad about that)

    Wednesday I met with my new doctor and my diagnosis now is Myofascial Pelvic Pain Syndrome. The doctor said that the office doesn't even use the term IC anymore for anyone. Many of her patients are patients that could not be helped by other doctors and she specializes pelvic issues (she's a Urogynecolost that works with Harvard, teaches and does research in field as well). At the end of the appointment I got printouts (very thorough I might add) of the last research literature that explains in great detail what this condition is (research is from 2009). The symptoms are pelvic/abdominal pain, urinary tract symptoms (eg, frequency, urgency, incontinence, nocturia, dysuria, incomplete emptying, bladder pain), vulvovaginal discomfort, dyspareunia, rectal fullness or constipation, dyschezia. The pain with this condition can be continuous or episodic. (there are many more details but these are the major ones I'm including)

    I was VERY relieved to hear this news. All the symptoms described are exactly what I'm dealing with. I also got an internal test where the doctor pushes on areas in the vagina. I experienced a lot of pain when she pushed on these specific pressure points. She also asked me to try to bear down and hold the muscles as if I'm holding urine in. I wasn't able to do those things correctly. Additionally, she took a tool to check skin sensitivity on the outer vaginal area. These tests were far different than any I have received thus far. After the evaluation and looking at my records, I was given the diagnosis of MPPS and was told there is hope for me. I was very pleased to say the least.

    Here's the treatment plan. First is PT. I will meet with a PT every week until the symptoms are better. It can be from a couple months to a year she said. I was given a prescription for Gabapentin to help with the nerve pain that I experience in my bladder area and lower back. She is totally on board with trying other meds but wants to go slow and try one at a time. Another possibility will be Valium suppositories to help with muscle tightness and relax everything, being used in conjuction with the PT.

    The reason she chose this first line of treatment is because in her experience most patients do not get better with meds alone. Most have tried everything and have not had enough relief. Research is showing now that PT is very helpful and a very high percentage find relief. She doesn't even do hydrodistentions because she found that it didn't work for most patients and that it can cause more problems in the bladder such as tears. (I'm not at all saying this doesn't work for some...I'm just telling you what she told me) She also said her personal opinion is that the diet is bogus. She said that most of her patients come in and say they are on the diet and that it doesn't work and they are still in pain, even though they follow a very restricted diet. She found most are more miserable because of doing a diet that offers little relief. (again, I'm not saying personally that I think the diet is not a factor, just sharing what we talked about for those of you who have no relief at all from the diet) She did say that it's possible for some foods to be irritating and that if I found them, to not have them of course. But she said no to obsess over it and not to use it as a main treatment.

    I asked why PT is successful. She said most women with bladder issues have tight muscles that the pelvic area, whether it be from stress, childbirth, sexual trauma, bad posture, accidents and/or injuries, etc. If those muscles are chronically tightened then the bladder, stomach, back and other areas will have pain. She gave the example of having a tight shoulder muscle. We can feel it and massage it and it can help. But we can't really do that with the bladder area muscles and surrounding muscles. Because of the tightness the nerves are effected and therefore, that is one reason why there is burning and discomfort in the vaginal area. So I'm hoping for me that the gapabentin can help with those symptoms.

    Please realize I'm not explaining things perfectly because I'm not a doctor. I'm explaining it in the best way possible, hoping this might help someone else.

    I'm quite nervous about the PT because it's not easy to have someone work on vaginal muscles. Talk about serious training is become LESS modest...LOL I'm being sent to the best in the area and am confident they will help me. There are many PT's in the area but she gave me two names out of more than a dozen, saying those two were the best.

    I am SO GLAD to FINALLY have an explanation for all my stomach woes, back pain and other mysterious pains that have been making me absolutely crazy!

    If you want to share thoughts, opinions, experiences, please do! I am not going to follow the diet so strictly I've decided. I do know I have definite triggers and will avoid those known triggers for now.

    Thanks for reading.
    Last edited by Toto; 08-26-2011, 05:27 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
    Thanks so much for your interesting post on your experience. I had two months of pt for internal vaginal work and it really did some good for my pelvic floor spasms and cramping. It was hard to keep up though due to the cost of the therapy unfortunately. I was wondering if you could pm me with the name of the doctor you are seeing and where she is located. I would really appreciate it.

    Comment


    • #3
      this is so helpful and enlightening..

      [B]Hi ToTo just read your wonderful letter...
      So glad to have "tuned in" today...joined in August. i read your plea for
      help earlier....you have helped so much by sharing this experience..hope everyone reads it!
      I've had 2 good things happen today, yours makes 3....
      I was referred for PT and haven't gone yet....could not get there!:
      Miss my regular foods and pray my diet is adequate on IC diet..but I was
      always in pain...cottage cheese, pears and cashews aren't upsetting but so
      boring!!!
      Just big HUGS ToTo....Would post lots of angels..( when I learn how)
      God comfort you today,
      Mineola

      Comment


      • #4
        thanks

        ToTo I sent a reply for the letter you wrote..it ended on my site...Mineola

        Can you find it?

        Comment


        • #5
          Pelvic Pain Syndrome is another name for interstitial cystitis. It does sound like you've found a doctor you feel comfortable with.


          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

          Comment


          • #6
            diagnosis #3

            Hi Toto,

            What an interesting post.

            I'm so glad to hear that you've found a wonderful doctor who is willing to try various treatments, and seems to really understand what's going on.

            I hope it works out great for you!
            Laurie

            Comment


            • #7
              Thanks everyone...

              Earthlady...I sent you a PM.

              Mineola...I did receive your email and will respond. Let me know if you receive it ok.

              Donna... I like the new diagnosis name better than IC. Pelvic Pain Syndrome "sounds" less serious... I'm happy with the new doc. Let's see how the PT goes... What a challenge!
              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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