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how bad do you need to be?

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  • how bad do you need to be?

    for surgery? I feel like i've hit a plateau in pain relief from the elavil, lidocaine, etc. I get SOME releif, but pressing on the bad nerves still sends me through the roof ( and not in a good way!) i wouldnt say i have severe VV, but its bad enough that its affecting my life badly. I mean, sometimes the emotional effects are worse than the my fear of being alone because no man will ever want to be with a girl who has so many sex dysfunctions. my boyfriend now (probably soon to be ex!) is ready to dump me because of my "problems". I feel like he's scarred me for i'm meant to be alone because i have trouble with sex

    Truth is, i'm sick of minor cures. i just want a vestibulectomy and be done with it. My urethra kills me too. is there some way to cut those nerves out too? i know i have bad nerves...i just want them gone! i'm ready to find a doctor who's willing to go with drastic measures because i cannot continue being so depressed over this. Its been so traumatic and i feel like i'll never be in a relationship again because i've been treated so unfairly. Do you think somebody like me who doesnt have a severe case could still be a candidate for surgery? It cant be good for me to be popping pills left and right, and only get about 50% releif.
    Last edited by ICNDonna; 04-04-2007, 12:52 AM.
    diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
    frequent UTIs
    No frequency, just urgency and pain!

    tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

    Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

    TENS may help a little

    Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

    fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

    Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

  • #2
    I had a vulvar vestibulectomy a few years ago. I suffered with Vulvar vestibulitis my whole life until I had the surgery. As for your question of how bad it has to be, I dont know the answer to that. I can only tell you my experiance. I failed all treatments and the Diet. Nothing worked. Mine was so bad that I had to be sedated to have vaginal exams at the end, and when I was pregnant, they could not examine me to see if I was dialated or effaced b/c it was just too painful. It hurt to sit, wear pants, and even underwear hurt. It was so bad that I did not have sex at all until I was married at age 27, and even then I had to take a bunch of valium, drink 1/2 a bottle of wine and threaten to divorce my husband if he didnt rape me while I was unconsious to get it over with b/c I couldnt tolerate the pain. So, needless to say, mine was real bad.

    I dont know if you have to be that bad or not. But, the surgery helped me 1000%. However, there are a few things you need to know. First, they remove the offending nerves at the entry of the vagina. Not all the nerves are removed, just the painful ones at the opening. I dont know if they can remove the urethral nerves or not, but my Dr. did not, and most dont. But, that is something to ask your Dr. about.

    Also, at the time I had my surgery, a few years ago, the Dr. told me there was an 80% success rate with the surgery, but he had no experiance doing it at all, b/c it is so rare. So, I was his first patient. He is only done a couple of others since then. It is that rare. (By "success rate", that doesnt mean that 80% are cured. It means that 80% have much less pain than they did before. ) When I am in a bad flare from anything, whether it is Lupus, IC, vulvadynia, or anything else, sex still hurts. But, the rest of the time, sex for me is now pain free.

    The other thing he told me is the nerves can grow back. Sometimes it happens within a couple of months, other times, it happens in a few years. For a lucky few, it never happens. Knock on wood, so far, I have been lucky, but it has only been 3 yrs for me, so I am not out of the woods yet. If Iwere one of the unlucky ones that had it grow back right away, my Dr. said I would not be a candidate to do the operation again b/c he said it would just grow right back again.

    Lastly, it does not cure vulvadynia. Vulvadynia is a separate condition. Vulvar Vestibulectomys are only to help with vulvar vestibulitis. There is no cure for vulvadynia. So, if you have that too, please dont think a vestibulectomy will cure that, b/c it wont.

    If you decide to proceed and find a Dr. that is willing to do the surgery on you, and if you have any questions, feel free to ask. I dont know anyone else here that has had this surgery, so you probobly wont have alot of replies regarding that. But, if there is anything that you want to know that I can answer, feel free to ask me anything. I will be glad to help you any way I can. Vulvar vestibulitis is a horrible affliction and I sincerely feel terribly for you and anyone else who has been stricken with it.

    I hope you find something that helps you soon.

    Many hugs,


    • #3
      What treatments have you tried for the VV?

      I just started capsaisin cream and i have to say it is helping me. It does burn at first, but then it burns less and less.

      Im on my period now and it doesnt sting like it used to.

      Have you tried any of the creams for this? Lidocaine wont cure it, its just temp relief.

      hang in there. I have the urethra burn too.

      Lyme disease diagnosed 11/05
      vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
      IC diagnosed with hydro/cysto- may 17, 2006

      Over growth of lactobicilli found 8/07 treating with doxy.

      Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

      8/22/07- was able to get my first speculum exam, with pap

      Strep D found in bladder with United medical labs May 2006
      2 strains of strep in stool culture 9/06
      high Strep ASO titre found 10/06

      NEW MED

      Capsasin cream-once a day for 20min,
      BUt wont lie it does burn

      About to start valium supositories for PFD

      Trigger point injections- oct 07

      Current meds:
      Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
      Zanaflex 2mg
      IC and low oxalate diet, no sugar diet
      Xanax for appointments to help relax me since they cause so much pain

      Started PT 3/07, PT has really helped me in ways I never knew that it would

      Meds ive tried
      Soma- can barely tolerate half a pill
      Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
      Estradiol cream
      Urelle- caused worse bladder spasm and retention

      Various antibiotics for lyme which caused yeast and made the IC and VV worse

      waiting for the next chronic illness to pop up

      "Did you know?
      Every 15 seconds,
      a person is
      diagnosed with
      interstitial cystitis."
      Source: J. Dimitrakov, MD


      • #4
        lotsa love!

        I really wish I could help you out on that one! (Regarding the surgery) This is all still so new to me and I have not even investigated or considered drastic surgical measures yet, so for that I am not sure what to do. Though often I reallyy do wonder! I am sure that if it seems worth it to you, unless it would create more complications, your doctor will support your decision, whatever it may be. Do lots of investigation about the procedures you are considering, and only then determine whether or not you think the cost will outweigh the benefits.Share all your research with the doctor, symptoms, cost/benefit etc. (helpful to give them their own little list to keep) and take it one day at a time from there..
        Regarding the intimacy element, I completely hear you on that one. However, you must not allow the misconceptions of others to impact your esteem in a negative way. I know its much easier said than done, I struggle much with this issue too! We I.C. er's have far too much to worry about, and far too much daily pain, than to compromise what's left of our self esteem. I do this all the time, self-defeating, negative talk, and it never does any good... at all! So please, hold your head up high, if they give you a hard time, look up whatever it is you want to tell them (diet, concerns, symptoms) etc. and then give it to them. Give them their own personal crash course on a very significant part of your life. Perhaps, have them sit with you for a while and see what it is that happens and/or is said on these boards! Or simply, talk about your feelings and let them know you are hurting in this way. Even if they don't understand now, time will help them to relate. If they are still unsympathetic despite your attempts to help them understand, you are much better without their opinion, and such... let it be.
        BTW I have also had the hardest time, for the longest time with sexual pleasure and desire. I find the most relief, of course, when there is plenty of LUBE!! Have him start slow, if he likes to go faster, until you are warmed up persay. Also, do try to determine whether or not you are allergic to latex. I am and this made sex a living he-double hockey stickss!!! Burning the night away!! Many people are allergic or sensitive to it.. and don't even know! Perhaps you should try different positions as well. Some will feel better than others! OR if this one partner is the one who is making you feel down over your situation, by all means, there are so many people out there who do care, and would be all the more concerned and patient with you, I.C. and all! I wish you all of the love, compassion, empathy, and understanding in the world. Best wishes and warmest of regards...... P.L.U.R .
        Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

        Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

        Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.


        • #5
          I forgot to mention that the founder of this website, Jill Osborne, has recently created a new site for people who have pain with sex. It located at They ladies there are very helpful and have some great ideas.

          I hope you find something soon to help you feel better.