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Thread: Leg Pain

  1. #1
    ICN Member
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    Aug 2008

    Leg Pain

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    I joined this forum a little over a year ago, desperate to find an answer to the pain that I was having. I had rectal/vaginal pressure pain, a feeling like a had an egg or even sometimes a burning stick up my bum, bladder squeezing pain, sacral pressure/pain, tailbone pain, clitoral sensitivity, a low burning pain just behind my pubic bone, leg pain, hip pain, sore spots out acoss my gluteal muscles and in my hips, and weird sensations in my feet. All of these symptoms would come and go throughout the day some worse than others, some days worse than others. I saw several doctors in my area including 2gynos, 3 mds, 1 pain specialist, 1 urologist, 1 neurologist all of which looked at me like I was crazy. Some even wanted me to take an antidepressant to see if that helped.

    Last November I found Dr. Weiss in SF via the internet and started seeing him. In one hour he had me diagnosed with pudendal neuralgia and muscle spasms and gave me a set of nerve blocks. I saw him and his pt every 1 to 2 weeks for internal and external trigger point release and stretching of my muscles until about March. Then I started going every 4 weeks and now I am going once every 2 months. So far, my symptoms have improved about 85%. That man is amazing and definately my hero. He gave me my life back. The only thing that I struggle with now is a little bit of off and on tailbone and sit bone pain, a little prickly feeling every once in a while on my vulva and buttocks and the leg pain.

  2. #2
    ICN Member aleet7's Avatar
    Join Date
    Apr 2008
    I'm really glad that you got the help you needed! Most of your symptoms sound a lot like the symptoms I was having(pelvic and rectal pressure, hip pain that went to my foot etc). I ended up getting pelvic floor therapy that helped substantially. My pelvic pressure and anal pressure returns sometimes. I was told that I have a prolapsed uterus that cause the pressure on my pelvic and rectum. I have not gotten that repaired yet because I thought it may put me in a horrible flare. I suffered from bladder spasms so bad that I could not ride in my car without severe pain because the car engine caused my bladder to spasms everytime I got in the car. After therapy I haven't had any spasms riding in the car. I was told that my tailbone pain was from arthritis in my spine or degenerative disc disease. This causes me to have sciatic pain from my hip down my leg. For that I take warm bubble baths. I wish that I could take an anti inflammatory pill but that tends to hurt an IC bladder.
    I wouldn't tell most people all of these disorders because they would think that I'm a basket case. That's why I'm so grateful for this board! I hope that you will be pain free soon!
    DX'd with IC 5/08
    other Dx's~SVT: had Catheter
    Catheter Ablation Aug 19,2010
    Migraines, PFD, Hypertension,
    Prolapsed Pelvic
    Organs and Degenerative Disc
    Disease, Kidney stones, Insomnia
    Two bulging discs w/tears and osteo
    arthritis in multiple joints in the spine

    Current Meds:Elmiron 400 mg per day
    Benicar Hct 40-25mg for Hypertension
    Norvasc 2.5
    Vicoden as needed for pain
    Cymbalta 30 mg
    Lidoderm Patch

    Psalm 121
    I will lift up my eyes to the hills from whence comes my help? My help comes from the Lord, Who made heaven and earth.

    "Be Kinder than necessary because everyone you meet is fighting some kind of battle"

  3. #3
    ICN Member
    Join Date
    Aug 2008
    Oh whoops...I didn't know that that posted up top. I started to write it and got side tracked. Here is the rest of it...

    This brings me to my question...does anybody else get this leg pain? It is in the hamstring area about 3 inches under my bum to about 6 inches above my knee in the back. It usually is not sore unless I do any bending down, stretching or squatting. I was organizing pictures on the floor for awhile yesturday where I had to do some of these moves and later that evening the back of my leg felt like I had pulled a muscle and kind of stung a bit. It is still sore today. Does anybody else have this? And do you know what causes it or is it completely unrelated. Every type of pain/sensation I get from the hips and pelvis down now I attribute to this condition. It may have nothing to do with it.

    Thank you!!!

  4. #4
    ICN Member
    Join Date
    Aug 2008
    Hi Aleet 7,
    Thanks for replying. I am glad that you have found some relief too! I still wonder if I will ever be fully rid of all of this. My doc tells me I will it just takes a lot of time. Everything that he told me in the beginning has come to fruition from length of healing, to how this condition heals, and what I could expect. He has been spot on. I too still get the anal/rectal stuff every once in awhile but it doesn't stay long...thank goodness. I find it comes on if I am feeling stressed or upset or mad about something.
    I don't tell people all of my aches and pains either, especially where they are. I have a few close friends that I have told and they have been fantastic and very understanding.
    Thank you again...take care.

  5. #5
    ICN Member
    Join Date
    Apr 2009
    Southeastern VA
    cc123, thank you for posting this. It's encouraging to me! The back of the leg pain I get if my piriformis and girdle across the hips is extra troublesome, but you might just be stiff or sitting funny. I can't sit in the floor yet. But I get the foot's referred from my vaginal pain. Freaky.
    "When fear seizes, change what you are doing..." --Jean Craighead George, Julie of the Wolves

    --Dx: IC, PFD, V, PN irritation, yeast, and "IBS-like symptoms" that includes a lot of difficulty with that order. Pleased to report that "it's something new every day" includes great things as well as painful things.

  6. #6
    ICN Member
    Join Date
    Aug 2008
    carried cub,
    Yes, I know the referred pain the you are talking is wierd. I know it sounds strange but I used to be able to feel the same sensation in the bottom of my foot that I would have in my pelvis. If it was a tight achy feeling then that is what I would feel in my foot. If it was more of a burning then I would feel that in my foot. It wasn't all of the time but every so often.
    Yes, I do have problems with my piriformis too. Still not sure what that is down the whole back of my hamstring though. I can't sit on the floor flat on my bum either. I haven't tried it in a long time and quite frankly am a bit afraid to for fear it will hurt those nerves again. My doctor thinks that it was the bike I got and started riding back in March of O8 that caused all of this trouble. The way I understand it, I compressed the nerves that run under my sit bones so I am not too quick to sit on a hard surface again for awhile...if ever.

    Take care

  7. #7
    ICN Member Kara29's Avatar
    Join Date
    Oct 2005
    Central, NY
    I'm so glad he helped you! It's so nice to get your major symptoms taken away. It's easier to deal with small things that don't take your life away when you find a Doc like that!


    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at: and

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  8. #8
    ICN Member Jase's Avatar
    Join Date
    Apr 2010
    Quote Originally Posted by cc123 View Post

    This brings me to my question...does anybody else get this leg pain? It is in the hamstring area about 3 inches under my bum to about 6 inches above my knee in the back.
    Thank you!!!
    I wish I could tell you what to do about it but yes I get that leg pain as well. I know a few others that have it as well , I think its fairly common. I have had PT for it but that has not worked. I think it could be caused by the periformis muscle.

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