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Thread: Clitorodynia

  1. #1
    ICN Member
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    Jul 2005
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    Clitorodynia

    Not sure on the spelling there. This is the worst thing EVER! I have IC and vulvodynia and in the last 4 days, a new symptom of constant VERY unwanted feeling of swelling and arousal in the clitoris. It is making me crazy and I feel so disgusting about my body and just really emotionally vulnerable that my body is producing these feelings that are so unwanted!
    It is like a constant throbbing in the clitoris.
    I read on another old post on a thread on the ICN that only Pudendal Nerve surgery can get rid of it, and that really upset me.
    Might excellent pelvic floor/internal work by a PT who REALLY knows there stuff help this condition?

    I don't even want to go on, it is a total nightmare!


    Medications:
    Elavil 30mg at bedtime

  2. #2
    Support Volunteer leelee88's Avatar
    Join Date
    Nov 2006
    Location
    Louisiana
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    8,900
    I have written may post about this condition.. I have suffered from it right after I was diagnosed with IC.. It can make you crazy!! My GYN said it was caused from the nerves.. The ONLY thing that settled mine down was Lyrica..I have talked to a few other people who say that PT has helped them. BUT it agitated mine..

    Here is a post you might want to read:
    http://www.ic-network.com/forum/show...=clitoris+pain
    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.

  3. #3
    ICN Member
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    Jul 2005
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    251
    wow, that is a long thread. i did read through some or most of it. seemed like people were mostly sharing about how dreadful it is, but there wasn't much about how they got it to go away.
    how much lyrica do you take per day? dosages and what time of the day?

    i tried lyrica before i started elavil and my bladder flared terribly, but i guess i could talk to my dr and try it again.
    i wouldn't call it pain so much as a feeling of being consantly aroused, YUCK, like i said, i feel disgusting.

  4. #4
    Support Volunteer leelee88's Avatar
    Join Date
    Nov 2006
    Location
    Louisiana
    Posts
    8,900
    Well My GYN said it was considered a pain.. Mine would throb.. It was very annoying.. I take a VERY low dose of Lyrica only 25 mg a day.. And that has helped my symptoms..But I still flare sometimes.
    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.

  5. #5
    ICN Member
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    Apr 2009
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    Southeastern VA
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    199
    This is a major symptom for me too. If there is a complete solution, I have not found it yet. But I'm making it through my day with a much higher quality of life than I had a few months ago. And I'll go from there.

    There's more than one thread that has been on here about clitoral pain, that you can find if you do some different searches. I remember reading where one support leader posted that (I'm paraphrasing) she felt like half the IC patients she talked to brought some level of this up.

    The dorsal branch of the pudendal nerve, according to my PT, does feed into both the clitoris and the urethra on a female. I'm not an expert, but I think that there are a number of areas that can become irritated and refer or cause pain in this area. Your urethra and bladder neck are very close, etc.

    The problem I am having right now is that so far my vulvodynia treatment has focused exclusively on the vaginal opening, but we know that merely improving the mechanical functioning doesn't make the experience of using that part of your body easier. Clitoral pain does not seem to be much of an area of medical focus.

    If you have not been assessed by a PT, it's a good start. My recommendation from personal experience is that you do need to see exactly the quality and experience level of PT you mentioned, which may take some searching. Do some research, make some phone calls or send some emails, and find someone you are comfortable with. You may be able to travel for an assessment and have a plan drawn up for someone closer to work with. You want someone that is going to focus on calming your nervous system down. This is a great place to start to determine whether you need to be moving forward on other problems with that nerve, but I strongly recommend you refrain from dealing with anyone that knows just enough about IC/PFD, the pudendal nerve, and vulvodynia "to get in trouble" as they say. I started that way too, and was immediately given about a thousand Kegels to do. No more! :->

    If you haven't done a little research on anatomy and musculature, you might take a peek at the diagrams in the books like a Headache in the Pelvis, etc. recommended here, or on some of the info from the National Vulvodynia Assoc. This helped me be able to describe my pain patterns as a whole. It also helps give you a vocabulary to use when you talk to your doctors or PT, which can help bolster your confidence.

    You are not, not not alone. It's a humiliating feeling and I totally understand that. But please consider focusing on calming your nervous system and your mind, and taking care of yourself, and don't ever let someone make you feel dirty for asking for help with this problem. I know it irritated me greatly to get these weird uncomfortable sideways looks from my regular gyno, uro and urogyn. The way I am coping right now is with a little medication from a different gyno (you're already taking the same one), which for me means I don't feel it constantly but the soreness and irritation is still there (my brain just isn't always getting the pain message). I am working with a PT right now to straighten out some significant hip, pelvis, pubic bone and back issues, and the first PT that did my assessment wants to see me later to work on my pelvic floor. She wanted to wait before I did any driving to see her b/c whatever she wanted to do wouldn't stick as long as I was walking around all crooked. :->

    I think like many symptoms this will probably fluctuate for you and I firmly believe and hope that you will find a treatment to manage it. I really encourage you to practice thinking that you will not always feel this symptom at this level. Be very careful with your internet research on this issue as I promise you will upset yourself with info overload and often bad info, tense up and make it worse. I honestly speak from experience. Focus on calming your body and doing the research it will take to get you some help.

    One day at a time, ok?
    "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 gluten...in that order. Pleased to report that "it's something new every day" includes great things as well as painful things.

  6. #6
    ICN Member
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    Carried Cub, wow, thanks SOOO Much for taking the time to share so much great information and positive thinking and mantras, I really took it all to heart. I private emailed you that I have an appt with a great PT in a couple of weeks to get assessed.
    I am thinking about trying Lyrica again, the one time I tried it before I really flared my bladder.
    The Elavil seems to help the bladder, but not so much the Vulvar stuff.

    The clitordynia is upsetting because it is gross to feel the arousal all day. It is better when I lay down it seems so I am spending a good amount of time off my feet when I can.

    Many thanks again and best, best wishes to you!

  7. #7
    ICN Member kiffy313's Avatar
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    Just want to say that I have gotten some relief, too with seeing a PT who specializes in pelvic pain...my pain with regards to the clitoral area is more of what I would call pain...burning and feels like something is rubbing-even when there is nothing even remotely around that area... which makes my IC pain worse, and the Pudendal nerve stuff, too...or, maybe it is the other way...I don't know, all I know is it hurts and is very frustrating...The PT I see has just been to some more continuing education classes and has shared with me that the tissue that makes up the bladder is also the same that makes up the vulva area. Now, we knew that in development the nerves are all "intertwined" and that is where the referred pain gets going, but I did not know that the actual tissue was the same type. It makes sense for me that I would have IC and Vulvar Vestibulitis...it has been slow going at times, but the PT has helped, and I must agree that doing a lot of kegels is a no-no for me...it really gets it all flaring! I know that we are all different, but it does help to get some input from all sides; after all we are all just looking to feel better. I hope everyone is doing as well as possible.
    Happy Thanksgiving,
    Kif
    Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



    DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
    I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
    I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
    Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
    Elavil and Ditropan-severe bladder retention
    Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
    Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.

  8. #8
    ICN Member
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    Jan 2010
    Posts
    77

    fabric softeners

    I know that this is probably not the answer, but it can't hurt. I recently stopped using harsh detergents and switched to a baby detergent (Ivory Snow) when washing my undergarments after noticing the same problem with my clitoris. Seems to have helped although my perenium is still giving me trouble when I am stressed. It's also very important not to use fabric softener, especially the sheets, and I wash my underwear with an extra rinse.

    Sandra

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