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Please - is there any relief!?

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  • Please - is there any relief!?

    Lately, my vulvodynia has been pretty out of control. I have the type that only hurts when the area is touched, and for the last month or so, anything at all that touches it (water, toilet paper, etc.) just sets it on fire. The pain is an intense burning that lasts for awhile after.

    The worst part is having sex, which I can't even do at the moment. My fiance and I tried to last night and it ended up with me in tears, it was such an intense burning, raw feeling around the opening of my vagina. Also, for about 12 hours afterwards I was really sore and peeing felt like hot lava.

    My doctor says I'm a perfect candidate for a vestibulectomy, but I don't know if I want to resort to surgery this early in my problems. So, my questions are:

    -Are there others that feel this kind of pain?
    -What do they do to help prevent and treat the pain?
    Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

    Medical research addict.

    Likes: hot baths and naps with cats

  • #2
    I echo everything Briza said! If you try creams, you may have to try a lot before you find the right one. I think I went through 4 or so before I found the one I currently use, the one that's been slowly helping over many months. Valium suppositories are a great idea too if you haven't yet tried those.
    34 years old, bladder symptoms all my life
    diagnosed with PFD and VV October 2009; IC May 2010

    Current meds:
    Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
    Other past treatments:
    IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
    Tried and didn't work:
    Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture


    • #3
      Briza somewhere I read that you also had irritation on your lower buttocks. I tried to find the post but couldn't. Right now I have not been diagnosed with VV but I have vaginal irritation and irritation on my butt too! Could you tell me your experience with this? Thanks Tammy


      • #4
        Thanks for getting back to me. I sooo appreciate it. Did you have redness on you buttocks? I have not been diagnosed yet with VV. They told me that they would have to wait awhile. How did you get rid of it? I am sooooo scared. I feel like my womanhood has been taken from me. Isn't having the IC enough? I have changed to all cotton underwear. What kind of detergent do you use? I feel so bad like I am hurting my husband and not being a good mother to my 11 year old daughter. I am new to all of this. What causes VV? Thanks for your time. Tammy


        • #5
          Vulvular Vestibilitis

          I have been suffering for almost two months with these symptoms. I had originally a bacterial infection. My nurse practitioner at the gyno office gave me flagyl (spelling error); I called her because it wasn't working, well she didn't write the prescription right. I was supposed to be taking two a day not 1. It seems like it just snowballed from there. I kept going back because the Bacterial infection was still there. Finally it's gone but still irritated and inflamed. So the nurse practitioner sent me to the main dr. She said I have no infection but the inflamation and symptoms I describe she diagnosed me with vulvular vestibilitis today. I am so with Tammy on saying isn't I.C enough?! I was doing so so good with my i.c. and could even eat a few things here and there without any issues. Then this added to my list is just so overwhelming. I feel like my womanhood has been stripped from me also.The dr. wants me to start a steroid pack to see if it helps; in two weeks I go back and if I have no improvement she is sending me to a specialty clinic about an hour and a half away. I have lidocaine and I am scared to use it on the vaginal opening area. My poor husband. I feel so bad for him. I feel like I am punishing him and I think that upsets me more than anything. Also I am having period type cramps without my period. For anyone suffering with this is this condition like i.c. comes and go symptoms? or am I constantly going to be in this pain/uncomfortablness? My docs never give me any pain meds either they always want to dope me up on xanax or something I've never heard of can't think of the name because I turned it in at the pharmacy. UGH again.
          Career wise: I am a stay at home mom of a 4 and 6 year old; however, I having been taking classes to go into nursing and now am I concerned I am going to have to go a whole different direction? I am so scared and confused. I am glad I am not alone but dang! It's hard being a woman. :/


          • #6
            Hi there...I completely understand how you feel!!!

            I have had had IC now for 4.5 years and vulvadynia for 1.5 years. My gyno presribed me lidocaine 5% to rub on the outside of my private area. I also sleep with a freezing bottle of water every night, in between my legs. I put a sock over it to tame down the coldness a bit. It helps me get my mind off of the burning pain so I can sleep.

            Big hugs!!!
            As I think, so I shall be....

            I have had IC for 4.5 years now. I also have fibro, sjogren's syndrome, and vulvadynia. I live in immense pain. I often daydream of life before this demon . When I feel good, I embrace it with all of my heart! I pray that someday I will feel 100% again, we all deserve it!


            Vicodin (as needed, so daily!)
            Percocet (morning & night)
            Klonopin (.5 mg at night)
            Zanaflex (2 mg each night)
            Thyroid med for low thyroid (hypo)
            Vitamin D (4000)

            IC, CFS, Fibro (it is really bad it has taken so much from me and changed my life), Anxiety, Depression from it all, & Hypothyroid.


            • #7
              I don't know if this will work for you or not, but I use Harvest Aloe Vera Gel everyday after I shower. It comes in a pump bottle and it has made a huge difference. It really seems to calm down the burning issues whether it be vaginally or on my bottom. I purchase it on line at the Harvest Aloe Vera site where I get my Aloe Vera tablets.