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  1. #301
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    physical therapy and clitoral pain

    Has anyone had success with physical therapy helping clitoral pain? If so, what kind of physical therapy was done? What types of measures were used? Thanks. Krisssy

  2. #302
    ICN Member CarolinTexas's Avatar
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    Acupuncture in Texas

    Hi Krissy,

    I live in the Dallas/Fort Worth metroplex. I never had any luck with any PT technique/exercise on the clitoral pain issue. It went on for several months and became permanent.

    One thing I've noticed is that all the PT's and acupuncturists I've tried seem to have a different method of treatment for the same problem. My latest acupuncturist spent an hour with me going over history, discussing the bladder problems, pain, surgeries and everything else. Although I had asked her to go for a different nerve, she went for the pudendal without telling me she was doing so.

    It became very obvious once she started because I could feel the pain behind the pubic bone when she placed the first needle in my chest. She did a line of needles from under the ribcage straight down to the pelvic area, stopping short of the pubic bone. She placed the rest of needles around the body (hands, feet, etc like they all do) and clipped the chest needles to a professional TENS unit for 20 to 30 minutes. The clitoral pain went away within a few days and didn't come back until my next infection several months later. I got to where I could stop it on my own if I tackled it quickly (ice packs, heat, and peppermint soap).

    My clitoral pain initially started due to 100% bladder retention and remained even after learning to self-cath and an ER visit. Nothing budged it including PT, nerve blocks, exercise, lidocaine, etc. I used to lie on the floor in the middle of the night crying. Sleep was almost impossible and I was suicidal. That pain is the hardest one for me to take.

    I hope you can find an acupunturist that will try the same. Perhaps you could interview them and ask if they would try the above before committing to an expensive treatment.

    PM me anytime if you would like more information. Hope this helps. It's hard to believe it won't help others.
    Carol

  3. #303
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    Quote Originally Posted by CarolinTexas View Post
    Hi Krissy,

    I live in the Dallas/Fort Worth metroplex. I never had any luck with any PT technique/exercise on the clitoral pain issue. It went on for several months and became permanent.

    One thing I've noticed is that all the PT's and acupuncturists I've tried seem to have a different method of treatment for the same problem. My latest acupuncturist spent an hour with me going over history, discussing the bladder problems, pain, surgeries and everything else. Although I had asked her to go for a different nerve, she went for the pudendal without telling me she was doing so.

    It became very obvious once she started because I could feel the pain behind the pubic bone when she placed the first needle in my chest. She did a line of needles from under the ribcage straight down to the pelvic area, stopping short of the pubic bone. She placed the rest of needles around the body (hands, feet, etc like they all do) and clipped the chest needles to a professional TENS unit for 20 to 30 minutes. The clitoral pain went away within a few days and didn't come back until my next infection several months later. I got to where I could stop it on my own if I tackled it quickly (ice packs, heat, and peppermint soap).

    My clitoral pain initially started due to 100% bladder retention and remained even after learning to self-cath and an ER visit. Nothing budged it including PT, nerve blocks, exercise, lidocaine, etc. I used to lie on the floor in the middle of the night crying. Sleep was almost impossible and I was suicidal. That pain is the hardest one for me to take.

    I hope you can find an acupunturist that will try the same. Perhaps you could interview them and ask if they would try the above before committing to an expensive treatment.

    PM me anytime if you would like more information. Hope this helps. It's hard to believe it won't help others.
    Carol
    Dear Carol,

    I had seen you post this on another website and had cut it out. I called an acupuncturist from my pain Dr's office, and I described what your accupuncturist did asking her if she could do that. She rudely told me that she was the Dr. not me, and if I knew how to do accupuncture, to do it myself! So that was the end of her. I am so desparate from this exact pain that you describe, that I would be willing to go to Texas from Long Island. Could you please give me the name and information about your accupuncturist so I can contact her. Does she have a website? If not, could you give me her telephone number, address, E-Mail etc.? Also, did just one treatment cure you? If that is true, the trip would certainly be worth it if she could get me better. You can PM me if you feel more comfortable. Thank you so much for reaching out to others with your treatment. As you said, this clitoral area pain is just so debilitating. Thank you so much for trying to help me. Krisssy

  4. #304
    ICN Member navemj's Avatar
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    I had PT for vulvodynia which included pain everywhere down there including the clitoral pain. I had ultrasound with physical therapy. She worked on the inside muscles and trigger point therapy. I also noticed after bowel movements I had relief. The ultrasound really helped. Not sure why. I would highly recommend trying PT. I have a different PT now and she is not as good as my first one.
    Maryann

  5. #305
    ICN Member CarolinTexas's Avatar
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    Krissy & Acupuncture

    Krissy, I can't believe that acupuncturist said that to you. Usually, they are willing to try lots of things to help people.

    I've PM'd you the info you requested but hope you can find someone locally who will try the same thing! I can't believe they won't even try it. I was suicidal with the clitoral pain and understand the desperation. This doctor likes to do her own thing as well, but is open to suggestions.

    It came back last month briefly when we were out of town and I was panicked. Luckily, alternating hot, hot showers with ice packs (all night long) kicked it. Self cathing was also essential. My ob/gyn later said retention is absolutely the cause and was willing to try a pudendal nerve block in her office (if I needed it). She usually only does them in the hospital when delivering babies. I thought that was really nice and cost effective for an office copay.

    I'll definitely try it if it becomes chronic again. Sounds like we both had abdominal surgeries that triggered our problems.

    Good luck!
    Carol

  6. #306
    ICN Member cem's Avatar
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    Northern Indiana
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    I think I might have vulvadynia. I went through the NVA tutorial online the other night & I'm going to print out a couple pages to take to my doctor when I see him in a couple weeks. I think I might have secondary VVS.

    I was a virgin when I got married & our first sexual encounters were excruciating. We actually stopped the very first time because I started crying. Finally by the end of our honeymoon we had actually achieved intercourse, but basically only because I pretended like it didn't hurt much.

    Later on I found that the only way for me to orgasm was for me to be in a completely relaxed state- either after a full body massage, or if I was so sleepy I didn't care about the pain. Looking back I think this may have been because I have vulvadynia & it was just not surfacing enough for me to notice it being a major deal.

    Lately I've noticed a searing pain from time to time on the right side of my vulva, almost similar to nerve damage. It's brief, but quite painful. The other pain is a throbbing sensation, usually brought on by vigorous exercise or direct sexual stimulation. I've found that ice packs will help this type of pain to some extent.

    I am unsure exactly how to talk to my doctor about this. He referred me to the urologist for the IC, and I won't see her for at least another month. I'm hoping maybe he can recommend something at least until then.

    (Me & my husband)

    IC- June '09- Elmiron, occasionally Urelle & Sanctura XR, also take joint supplement
    Vulvodynia- Aug '09- Elavil, Calcium Citrate & occasionally Lidocaine gel
    Semen Allergy- Nov '09- just preventive measures
    IBS- Jan '10- mild case, so just high soluble fiber diet
    Still have unidentified pain, possibly from PFD.

    Also migraines & hypertension.

    Follow IC diet when flaring, otherwise hasn't proven very helpful. Also follow some IBS diet guidelines.

    Exercise (2 miles walking per day, some yoga & mild kettlebells) and stress relief have also helped much!


    Lover of all animals!

    Visit my blog about living with IC & VVS: http://icthereforeican.blogspot.com/

  7. #307
    Support Volunteer leelee88's Avatar
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    Nov 2006
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    Louisiana
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    cem, I go to my GYN for my vulvodynia and she is a woman.. I found it a lot easier to talk to a woman about this..

    It does sound like V that you have..Next time you see a dr ask for Lidocaine Gel 2% this really helps after intercourse of just when you are flaring..

    If you do a search on Vulvodynia you will find some helpful info on it..

    Or if you have any questions you are welcome to PM me..
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  8. #308
    ICN Member cem's Avatar
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    Northern Indiana
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    Thanks, leelee!

    I printed the explanations of the two types of V off of the NVA website. I'm just going to give it to my doc & tell him that I think I might have it & I'm wondering if he can give me a script for the lidocaine gel for some comfort til I see my Uro next month.

    I also printed off a copy of a low oxalate diet & that has helped somewhat.

    Tho, today I had a really bad episode of pain & couldn't seem to find any trigger for it. I just had to lay down with an ice pack finally. I don't know what I would have done if I had been at work!

    Does vulvodynia get worse during periods? I noticed that my IC was extremely bad the last time I had a period & mine is coming shortly. Maybe that had something to do with it.

    It's just nice to know I'm not the only one... cuz some days I feel so alone!

    (Me & my husband)

    IC- June '09- Elmiron, occasionally Urelle & Sanctura XR, also take joint supplement
    Vulvodynia- Aug '09- Elavil, Calcium Citrate & occasionally Lidocaine gel
    Semen Allergy- Nov '09- just preventive measures
    IBS- Jan '10- mild case, so just high soluble fiber diet
    Still have unidentified pain, possibly from PFD.

    Also migraines & hypertension.

    Follow IC diet when flaring, otherwise hasn't proven very helpful. Also follow some IBS diet guidelines.

    Exercise (2 miles walking per day, some yoga & mild kettlebells) and stress relief have also helped much!


    Lover of all animals!

    Visit my blog about living with IC & VVS: http://icthereforeican.blogspot.com/

  9. #309
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    Quote Originally Posted by cem View Post
    I think I might have vulvadynia. I went through the NVA tutorial online the other night & I'm going to print out a couple pages to take to my doctor when I see him in a couple weeks. I think I might have secondary VVS.

    I was a virgin when I got married & our first sexual encounters were excruciating. We actually stopped the very first time because I started crying. Finally by the end of our honeymoon we had actually achieved intercourse, but basically only because I pretended like it didn't hurt much.

    Later on I found that the only way for me to orgasm was for me to be in a completely relaxed state- either after a full body massage, or if I was so sleepy I didn't care about the pain. Looking back I think this may have been because I have vulvadynia & it was just not surfacing enough for me to notice it being a major deal.

    Lately I've noticed a searing pain from time to time on the right side of my vulva, almost similar to nerve damage. It's brief, but quite painful. The other pain is a throbbing sensation, usually brought on by vigorous exercise or direct sexual stimulation. I've found that ice packs will help this type of pain to some extent.

    I am unsure exactly how to talk to my doctor about this. He referred me to the urologist for the IC, and I won't see her for at least another month. I'm hoping maybe he can recommend something at least until then.
    Oh that throbbing sensation I know so well-I think I brought it on by working on the treadmill daily a year ago-never went away. Presently after all the doctors, medications etc. etc., I am finding that ICE ICE ICE helps especially lying down with a meditation tape or sitting on it nice and HARD while on my computer keeping my head busy. I am also practicing living with and accepting it and not crying and fighting it everyday. My PT taught me that, and it works even though it sounds crazy. But this whole thing is crazy, so try it. You never know. Krisssy
    Last edited by Krisssy; 08-12-2009 at 11:20 AM. Reason: spelling

  10. #310
    ICN Member cem's Avatar
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    Northern Indiana
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    I saw my doc today & he said what I described did sound like vulvodynia, especially since it seems triggered by exercise & sex.

    He gave me a script to try Diflucam (or Diflucan?- can't read his writing). He said that he's had some success with that in other patients & wants me to give it a whirl.

    Just curious if anyone else has tried that as a remedy!

    (Me & my husband)

    IC- June '09- Elmiron, occasionally Urelle & Sanctura XR, also take joint supplement
    Vulvodynia- Aug '09- Elavil, Calcium Citrate & occasionally Lidocaine gel
    Semen Allergy- Nov '09- just preventive measures
    IBS- Jan '10- mild case, so just high soluble fiber diet
    Still have unidentified pain, possibly from PFD.

    Also migraines & hypertension.

    Follow IC diet when flaring, otherwise hasn't proven very helpful. Also follow some IBS diet guidelines.

    Exercise (2 miles walking per day, some yoga & mild kettlebells) and stress relief have also helped much!


    Lover of all animals!

    Visit my blog about living with IC & VVS: http://icthereforeican.blogspot.com/

  11. #311
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    Join Date
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    Diflucan is a treatmentfor thrush.
    Regards
    Jodi.b

  12. #312
    Support Volunteer leelee88's Avatar
    Join Date
    Nov 2006
    Location
    Louisiana
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    Some people with V do have yeast, but I do not think the Diflucan will help your V.. BTW Diflucan is a med to get rid of yeast..
    You need something that will calm the nerves of V.. Like Lyrica, Neurontin, Valium and some people have had great success with a low dose of Elavil..
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  13. #313
    ICN Member cem's Avatar
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    Location
    Northern Indiana
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    I knew it was an antifungal, but it is not helping. (I think the problem is that the women he's seen before who responded to this treatment probably had some form of yeast infection, therefore that would help them. I don't!)

    I was going to wait for the script to end before calling him, but I don't know.

    An ice pack still gives me the best relief of all. My Elmiron seems to finally be working some, so that really makes things a bit better. (So far it just makes me have to pee less, I still have pain, but I'm on my period now & it is far better than last month's was!)

    (Me & my husband)

    IC- June '09- Elmiron, occasionally Urelle & Sanctura XR, also take joint supplement
    Vulvodynia- Aug '09- Elavil, Calcium Citrate & occasionally Lidocaine gel
    Semen Allergy- Nov '09- just preventive measures
    IBS- Jan '10- mild case, so just high soluble fiber diet
    Still have unidentified pain, possibly from PFD.

    Also migraines & hypertension.

    Follow IC diet when flaring, otherwise hasn't proven very helpful. Also follow some IBS diet guidelines.

    Exercise (2 miles walking per day, some yoga & mild kettlebells) and stress relief have also helped much!


    Lover of all animals!

    Visit my blog about living with IC & VVS: http://icthereforeican.blogspot.com/

  14. #314
    ICN Member cem's Avatar
    Join Date
    Jun 2009
    Location
    Northern Indiana
    Posts
    68
    I put in a call to my doc today & he recommended going to my gyno. Normally she is really hard to get in to see, but when I mentioned pain & my doc wanting me seen they were able to schedule me for tomorrow!

    Today was just horrid. I had a terrible flare, plus the VVS was awful & my lower back ached & since I'm on my period I had cramps too! Eek! Nothing seemed to help at first, but finally a warm bath, followed with baking soda (shaken, not stirred) and some stretching seemed to help.

    I feel a ton better now, but I'm worried about going to work tomorrow. Luckily I only work 4 hours so I can leave if it is unbearable, I hope. Then off to the gyno!

    (Me & my husband)

    IC- June '09- Elmiron, occasionally Urelle & Sanctura XR, also take joint supplement
    Vulvodynia- Aug '09- Elavil, Calcium Citrate & occasionally Lidocaine gel
    Semen Allergy- Nov '09- just preventive measures
    IBS- Jan '10- mild case, so just high soluble fiber diet
    Still have unidentified pain, possibly from PFD.

    Also migraines & hypertension.

    Follow IC diet when flaring, otherwise hasn't proven very helpful. Also follow some IBS diet guidelines.

    Exercise (2 miles walking per day, some yoga & mild kettlebells) and stress relief have also helped much!


    Lover of all animals!

    Visit my blog about living with IC & VVS: http://icthereforeican.blogspot.com/

  15. #315
    ICN Member cem's Avatar
    Join Date
    Jun 2009
    Location
    Northern Indiana
    Posts
    68
    My gyno did the poke test today. I didn't think it would hurt, but YOWZA! I almost jumped off the table at one point!

    She's trying me on a low, but increasing dose of Elavil (which is covered by my insurance, yay!) and also gave me lidocaine gel for intercourse.

    Since I'm on a ton of medication now she really wanted us to practice a more strict form of birth control (we've just been using spermicide) but because of other health issues & family history I'm kinda limited. I'm not comfortable with the idea of an IUD so she prescribed the low dose pill. My insurance won't cover it up front, so I'm waiting to see if she can convince them it is necessary for me to start.

    I broke down crying after the appointment. It's good I know what's wrong & can work on making myself feel better.... but I'm tired of all the things that keep seeming to go wrong with my body too.

    I'm glad I have this board I can vent on. It's kinda like a hug some days!

    (Me & my husband)

    IC- June '09- Elmiron, occasionally Urelle & Sanctura XR, also take joint supplement
    Vulvodynia- Aug '09- Elavil, Calcium Citrate & occasionally Lidocaine gel
    Semen Allergy- Nov '09- just preventive measures
    IBS- Jan '10- mild case, so just high soluble fiber diet
    Still have unidentified pain, possibly from PFD.

    Also migraines & hypertension.

    Follow IC diet when flaring, otherwise hasn't proven very helpful. Also follow some IBS diet guidelines.

    Exercise (2 miles walking per day, some yoga & mild kettlebells) and stress relief have also helped much!


    Lover of all animals!

    Visit my blog about living with IC & VVS: http://icthereforeican.blogspot.com/

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