Latest Blog Article: New Fact Sheets for Interstitial Cystitis Treatments, Diet and Flares
Results 1 to 5 of 5
  1. #1
    ICN Member colourmetwice's Avatar
    Join Date
    Jul 2006
    Location
    Atlanta, GA
    Posts
    67

    Vulvodynia/Allodynia

    How do you get the doc to diagnose you with that?

    By this I mean, how can you or they differentiate between radiating bladder pain and a whole other set of pain?

    I am almost certain I have it, but the docs are so consumed by my bladdre, they really won't pay much attention to the fact that my vaginal lips feel like they are going to just fall off everytime I sit.
    -Taryn Vollrath

    Dx 2007 while in the Navy. Medical (honorable) discharge.
    Interstim 2008. Emergency removal of Interstim 2010 which nearly paralyzed me from the waist down.
    When I was first dx, I was literally on a shoebox full of meds. Now I am down to diet management, yoga, meditation, and only during flares Tramadol. Still go to ER on occasion for flares however due to the intense spasms my bladder does. Looking into Botox for said issue.

    My IC took my first marriage within a year. But I am remarried, with a step daughter, and doing fan-tab-u-lous! You can get there, ladies!!


    Consistently looking for ways to be proactive about a situation.
    My healing must start with my thoughts.


    "The acceptable and the unacceptable are both acceptable." -Tao Te Ching
    OOMM

  2. #2
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Location
    California
    Posts
    8,480
    Re: your Louise Hay quote.
    I must have been one angry, ****** off baby because my bladder problems began at around age 3 months & I needed 2 surgeries before age 5. I'm more likely to believe that my bladder problems/IC cause me to be angry & ****** off, rather than the other way around... (Especially like this week, when I had to plead with the pharmacy for someone to help me & order heparin.) Just a thought.

    About your question: Isn't vulvodynia often diagnosed by gynecologists? I seem to remember a rather unpleasant test involving poking various vulvar locations with a q-tip. Topical lidocaine can be very helpful for vulvodynia.

    I hope you find some answers soon & I hope things work out for you with your job, I read your other post & I'm sorry you were treated so badly....
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  3. #3
    ICN Member Briza's Avatar
    Join Date
    Dec 2004
    Posts
    6,393
    I saw a lot of gyns, a couple NPs and PAs, and I think one GP. All passed me on to someone else since they saw nothing visibly wrong in my nether regions; the last gyn I saw said just stop thinking about it, since there were no visible symptoms then it must be in my head, go see a shrink.

    I finally happened upon my current gyn who is now my IC dr (tho I was formally dxd w/ IC by a uro). This gyn is the best and most understanding dr I've had in this entire IC/Vulvodynia journey. By the time I found him I had already diagnosed myself w/ Vulvodynia and Vulvar Vestibulitis and suspected I had IC.
    So my Vulvodynia and Vulvar Vestibulitis diagnosis kinda went like this with my current gyn: hey Dr X, these are my symtpoms and based on my own research for the past year I believe and am quite certain that the invisible problems I have are Vulvodynia and Vulvar Vestibulitis. He just looked at me. I then went on to say I have researched this thoroughly and would like to try this, and this, and this for treatment to see if any of it improves my symptoms. Just about everything I suggested that he prescribe for me has worked, and he even came up with a couple of his own things that might help, and they did.
    It took some years, but I am now in remission.
    Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn

    I've been remission since Aug 2009! My apologies but I will no longer respond to private messages regarding my IC and VV symptoms, diagnosis, treatments, remission, lifestyle changes including my diet or stress management techniques, etc. I am simply too busy. If you have questions please refer to my remission thread as well as the other 6000 something posts I have made on this board....they pretty much cover it all from beginning to end.

    My remission story: Healing from the Inside Out
    http://www.ic-network.com/forum/showthread.php?75536-My-remission-healing-from-the-inside-out
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"

  4. #4
    ICN Member Briza's Avatar
    Join Date
    Dec 2004
    Posts
    6,393

    Post

    Quote Originally Posted by colourmetwice View Post
    How do you get the doc to diagnose you with that?

    By this I mean, how can you or they differentiate between radiating bladder pain and a whole other set of pain?

    I am almost certain I have it, but the docs are so consumed by my bladdre, they really won't pay much attention to the fact that my vaginal lips feel like they are going to just fall off everytime I sit.
    http://www.ic-network.com/forum/showthread.php?t=4883
    take a look at this the thread in this link...perhaps it might help you determine where your pain is coming from...quite a few have posted there to describe their pain(s) and other symptoms and where (part of body, conditon) they are coming from
    Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn

    I've been remission since Aug 2009! My apologies but I will no longer respond to private messages regarding my IC and VV symptoms, diagnosis, treatments, remission, lifestyle changes including my diet or stress management techniques, etc. I am simply too busy. If you have questions please refer to my remission thread as well as the other 6000 something posts I have made on this board....they pretty much cover it all from beginning to end.

    My remission story: Healing from the Inside Out
    http://www.ic-network.com/forum/showthread.php?75536-My-remission-healing-from-the-inside-out
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"

  5. #5
    ICN Member Briza's Avatar
    Join Date
    Dec 2004
    Posts
    6,393
    Had never heard the term Allodynia before so just looked it up. Here's a link if anyone is interested in taking a look:
    http://en.wikipedia.org/wiki/Allodynia
    Favorite quote: "Moderation kills." ~ Dr Caldwell Esselstyn

    I've been remission since Aug 2009! My apologies but I will no longer respond to private messages regarding my IC and VV symptoms, diagnosis, treatments, remission, lifestyle changes including my diet or stress management techniques, etc. I am simply too busy. If you have questions please refer to my remission thread as well as the other 6000 something posts I have made on this board....they pretty much cover it all from beginning to end.

    My remission story: Healing from the Inside Out
    http://www.ic-network.com/forum/showthread.php?75536-My-remission-healing-from-the-inside-out
    What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
    My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. Vulvodynia/Allodynia
    By colourmetwice in forum Introduce yourself and share your story
    Replies: 2
    Last Post: 06-21-2008, 08:13 PM

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •