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I am so EMBARRASED!

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  • Kara29
    replied
    Those sound very similar to Pudendal Nerve Symptoms.....................................

    Check out the sticky attached to the front of the Pudendal Nerve Condition page.

    Here’s a Comprehensive Website that gives you Everything you wanted to know about (PN), Pudendal Neuralgia (PN), or Pudendal Nerve Entrapment (PNE) from what it is, some Facts and Questions from patients, what the symptoms are, diagnosis, treatment Options, for example it goes into detail regarding such topics: Lifestyle changes, Medication Management, Physical Therapy, Botox, Pudendal Nerve Blocks, Pudendal Nerve Decompression Surgery, Neuromodulation and information about the Intrathecal Pain Pump. The site even talks about Emotional Aspects that go along with having PN/PNE, the Anatomy of the Pudendal Nerve, Related Conditions that have very similar Symptoms to IC, A List of North American Doctors who diagnose and treat PN/PNE, a list of Physical Therapists who treat it, Personal PN/PNE Stories, and even a Pain Scale. The link to this website is as follows:
    http://www.pudendalhelp.com/home.html


    Thank You to the Doctors and Administrators who put this site together.It is to them that I owe the greatest gratitude for putting it up on the web for all Chronic Pelvic Pain Sufferers to view. I have used it in a forum that is just learning about PNE/PN as it has become increasingly similar to those of us that also have Interstitial Cystitis. Thank you for putting together such a comprehensive site. It’s a lot of information but it could save an IC person from getting their bladders removed which is very drastic and in my case as well as many others, we may not have known what caused the pain because it was so close to the bladder that Doctors had and currently have trouble not seeing other possibilities for the their patients. I want to bring this to the table and forefront so that they all take one more step before drastic operations. This is meant for patients and doctors to start discussing this disease together as a team.

    So take a look and print out any information you feel may help you and your doctors in your quest for pain reduction.


    You are NOT ALONE! I had similar symptoms and had the PNE Decompression Operation in May. I've gained the ability to sit for 4 hours at a time on a good day as well as reduced clitoral symptoms and most recently a reduced pain upon having a bowel movement. I did a lot of research before having this surgery and I'm grateful that I did the research because it has saved me from worsening symptoms. It takes up to 2 year to heal from this surgery so the results are slow to come. It takes a lot of patience and will to keep going. I am on month number 8. I pray for continued relief of other PNE symptoms and pain relief for my future. ONE DAY AT A TIME!!!!!!!!! ONE HOUR AT A TIME!!!

    Kara
    Last edited by Kara29; 11-29-2009, 05:57 PM. Reason: adding site into

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  • wolfaleena
    replied
    sorry you guys are having to deal with this.
    sending prayers and positive energy your way.

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  • peaceplease
    replied
    Clitordynia

    Oh, so there is a name for this which I just found on the web. I have IC and vulvodynia and in the last few days a CONSTANT throbbing and VERY unwanted sexually stimulated feeling in my clitoris. I am SO embarrased about this and was hesitant to post. Does any body have any history of this or treatment success in getting rid of it. Is it FOR sure caused solely by Pudendal Nerve issues? I read on a previous post on this thread that the only way to get rid of it is surgery. That really made my heart sink!!!
    Is there any way that really good pelvic floor Physical Therapy where they work internally etc could help?
    It is the WORST feeling, like an unwanted arousal all the time. I feel disgusting inside!

    Medications:
    Elavil 30mg at bedtime, clearly not helping my Vulvodynia.....

    Leave a comment:


  • sandymarie
    replied
    RE stay after surgery

    When my son and DIL had their first child, the baby had to stay in the hospital for over a week. They were moved a time or two while they stayed from one room to the other. The hospital said that if they had a charity room empty they would let them stay in it for a short while until the baby got ok to go home. Maybe if you would talk to the hospital administrator, they would consider doing that for you. It really would be worth a try. Most hospitals have charity rooms for people without insurance. Hopefully one might would be vacant for you if you let them know your circumstances. Just a thought. This is the only time I have ever heard of it, but you wouldn't know unless you asked.

    Hope your surgeries go well. My prayers are with you.

    JJ

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  • Kara29
    replied
    Thank you April,

    That was very nice of you to say! You kind words are very uplifting today!

    Hugs to you!

    Kara

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  • aprilchen
    replied
    Kara,

    You are always SO compassionate to everyone and listen/read about our problems so well. You should be a counselor out of this. You are doing so well at answering others' questions and concerns. God gave you a wonderful gift, Kara!

    Leave a comment:


  • Kara29
    replied
    Dear Annie,

    I may not be having the pudendal nerve surgery for another year so it may just work out that we meet. I have to have one other surgery before the PNE Surgery happens in NH.

    I will keep you posted! Shucks about your summer home.

    Kara

    Leave a comment:


  • Annie2
    replied
    Kara,

    I haven't been on the boards much at all the past few months as I, too, have been having problems. I just saw this post. We had a summer home in NH about 1 1/2 hours north of Manchester (not terribly close, but not a horrible commute, either), but sold it this spring. If we still had the house, I'd certainly do all I could to help. We may purchase a new place in NH in the future, but it won't be for another year or so. Keep me in mind for future reference should this be delayed or you have future need. In the meantime, please know my thoughts and prayers are with you.

    Leave a comment:


  • Ginny
    replied
    I'm sorry you are having such a hard time. I did not read the tread until now.
    There is no reason to be embrassed but I know the feeling. I feel that way with IC. I hate telling people it's my bladder. I shouldn't but I do.

    Wish I could help. All I can say is don't be embrassed here.

    Ginny

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  • Kara29
    replied
    My Doctor is going to look into some way of getting a better deal at the local hotels around the hospital. I have one surgery first to get through. If that surgery doesn't help then I am off to NH.

    Thanks for all of your continued love and support and great suggestions!

    Kara

    Leave a comment:


  • mom_in_ma
    replied
    Kara,
    I've found amazing hotel deals at sites like priceline.com. I know it's not free, but it could be fairly cheap.

    Leave a comment:


  • Kara29
    replied
    Nicole,

    I have PM'd you back.

    Kara

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  • NicoleB
    replied
    I live in Nashua NH!!!

    if you need a place to stay, i could see about that. its not my place, but i have a nice roomate and a really nice dog and cat to annoy you!

    Leave a comment:


  • ICNDonna
    replied
    Another thought: If you contact the Social Services Department at the hospital where you'll be treated, they may have some information about resources in the area.

    Donna

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  • Kara29
    replied
    These are all great ideas that I will have to check into. I am not going to schedule surgery until I can afford it. So far I'm planning on doing this while on Disability. Thank you all for being such WONDERFUL support. I could not do any of this without you.

    Warm Hugs!!!

    Kara

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