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  • #16
    I was also recommended the vestibulectomy. My pain is the opening of the vaginia (6:00) I have an area of skin that fissures. I am also afraid of the surgery. I also would be interested in finding a doc that knows how to do this kind of surgery.

    William Ellery Channing:
    Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.


    • #17
      I had the Vestibulectomy

      Hey guys. Sorry it has been a while since I have been on here. I decided to go ahead and have the vestibulectomy in May (2007). I felt as though I had tried everything and had no relief. I decided for myself that I would give this a chance and if it didn't work then maybe I could except that this is how my body was going to be and I could maybe let go of my what if's. I have had a lot of success so far. I was uncomfortable for a few days after surgery. My doctor went ahead and had me spend the night of my surgery in the hospital just to make sure I didn't have excessive swelling and trouble urinating. I had a catheter for the first night, which I was glad about because I didn't have to worry about getting out of bed. It was difficult to get up and down for the first couple of days. Trying not to put pressure on that area made moving interesting. After the first few days I could move around okay except clothing rubbed a little and trying to get in and out of the car I had to be careful. I used a "donut" pillow to sit on which really helped. Now I don't have the constant burning and itching. I don't really even think too much about it anymore. I will warn you that for me, sex is still a work in progress. Everything it a little tighter since the surgery. (Sorry for the detail). I have used a dilator my physical therapist gave me which is helping. You just have to take it really slow and make sure there is enough lubrication. My husband has been very supportive through it all which has made the recovery process easier. I don't regret having the surgery at all, but it was definitely something I thought long and hard about. I hadn't 100% made up my mind about the surgery until I got to the hospital, but I would go through it again in a second. The best advice I can give is to really think about how vestibulitis affects your life and decide if the benefits out way the risks. For me the chance of it was worth it. Good luck to you and feel free to contact me with any questions or concerns.


      • #18
        How did you go about finding the right surgeon to do the procedure? I am considering the surgery. One of my doctors wants me to try steroid injections to the area first the other want to do a "vestiboplasty". This is all so new and scary for me and I am unsure about the surgery but I cant go through life without being able to have intercourse with my husband.

        I wish you continued recovery.

        William Ellery Channing:
        Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.


        • #19
          Thanks so much for the reply. I understand your concern and frustration. I am unfamiliar with a vestibuloplasty. I don't know if that is interchangeable with or similar to a vestibulectomy. I did not have the steriod injections. I used the boric acid, various antidepressant medications, lidocaine gels, and a few other meds and creams without any relief. I went to Mayo Clinic in April for an abdominal issue I was having. While there, I was sent to a gynecologist which I thought was a little strange since at the time I wasn't having problems realted to those areas. He was actually the person who found out what was causing the abdominal problems. I vaguely mentioned the vestibulitis during our conversation. My gynecologist here had basically told me that she couldn't do anything to help that if the meds hadn't helped I was forced to live my life the way it was. I assumed there wasn't any other option. The Mayo Clinic doctor told me I should check into the procedure. I called a gynecologist who had consulted on a previous surgery I had and asked if he did vestibulectomies. When I found out he did I scheduled an appointment and asked about my options. He agreed that since I had tried so many things before that it might be worth me having the surgery. I went ahead and scheduled my surgery. The day before surgery the doctor meet me and my husband for a pre-op visit. It was the best thing. He showed my husband where the problem areas were and explained what to expect with the surgery. How things would look and feel. My husband said he was glad he was involved and that it made him feel more comfortable with the surgery. Having surgery is definitely a big deal. There is always a risk of infection or the vestibulitis coming back. But for me, I was willing to try anything to get back to some sort of normal with my husband. I told him that even if it only worked for a few months. Then atleast I was pain free for a moment. Recovery was definitely uncomfortable but I kept reminding myself that many women had episiotomies with child birth and survived so I could survive having some of my skin removed. Feel free to contact me anytime for any questions. I know how scary it is to try to come to the right decision. Definitely ask around on the message board. I have read good reviews and a few from people who didn't get the results they expected. You just have to weigh your options. Give a few gynecologists (some urologists I believe may also do the procedure) a call and ask if they do the procedures then you can go from there. Good luck. Let me know if I can do anything.


          • #20
            Sorry to get personal, but what were your symptoms before the surgery? I have swelling and splitting of the vestibule. Was yours more nerve related or did you actually have visible signs of irritation?

            I am very hesitant about the surgery because I work as an RD in a surgical unit and unfortunately have seen the best and the worst case scenarios.

            Last edited by tweety34; 10-05-2007, 03:12 PM.
            William Ellery Channing:
            Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.


            • #21
              I'm also thinking about this surgery. I've tried so many many yeast treatments, all the creams, boric acid, etc which along with the yeast led to my V V (started a year ago or so.
              Topicals that I have tried them all(clobetasol, EMLA, lidocaine, Elavil cream, premarin, Cortizone, A&D ointment,) lactobacilus inserts, yougurth inserts, etc.
              Right now I don't want to put anything else on my skin, I want to leave it alone. I'm thinking they make things worse b/c the kin is already so sensitive.
              I've talked to a woman that treated her IC and V V with botox and that worked for her. My IC is not as bad to go to the Botox route but I was wondering if it could work for v v? before trying surgery? I'm just brainstornming here since I have to deal with it too and have my life back.
              Now, once surgery is teh option, how do you choose your surgeone? I would want one that has perfromed this many times. I know my gyno did it once and he wasn't so thrilled when I mentioned it.
              I see the results of the women who posted here and they are encouraging.
              I'm so glad it worked for them!
              Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
              UTIs since mid 2004
              Recurrent yeast infections since mid 2005
              IC dx 3/2006
              V V dx 12/2006
              Other conditions: IBS, allergies, dry eyes.

              Current IC medications:
              Elavil (since 12/06) 10 mg;
              Cysta Q (since 5/07)
              Rephresh acid jel every 3 days
              D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
              Probiotics Femdophilus or other brands
              Gy-Na-Tren for yeast infections (started using it as needed since 2010)
              Other Rx:Omeprazole 20mg; benadryl as needed, Restasis

              Past Meds and why I stopped them:
              Elmiron: March to September 2006: headaches
              Lyrica:2 weeks in 2006: headaches
              Cystoprotek: from Jan to April 2007: nausea

              Femcon Fe (2/07 to 10/07):caused spotting/bleeding
              BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.

              "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"


              • #22
                Hey guys! My symptoms were lots of itching and burning. I also had "raw" patches in various areas. That's the best way I know to explain it. It looked red and slick from being so irritated. After I urinated the burning and irritation would get worse. Certain clothes would cause irritation. Even the thought of being intimated seemed to make me hurt because any amount of touching would set my skin on fire. I would occasionally have some slight bleeding from the "raw" areas. As far as botox for VV, I am not sure. I know that there are lidocaine injections you can get. Lidocaine does burn slightly, however it appears to work for some people. I do not respond well to the caine family so I unfortunately didn't have relief for lidocaine. I also understand what you meant about seeing the worst of things Cindidi. I am a medical/surgical nurse. I have a lot of urology and a few gyne patients. I had a lot of patients with similar surgeries and I would see the good and the bad. I didn't make up my mind until the morning of my surgery that I was even going to have it. You just have to trust your gut. There unfortunately are risks with every surgery. The good thing about this one is that there is more skin than other tissues removed. I think that helps decrease risks, but that is just my personal opinion. As far as doctors go, the first gyne I was seeing wouldn't talk about surgery as an option either. I would just call around and ask if the doctor does the vestibulectomy and go from there. That is what I did. I had seen the doctor who did my surgery through having another surgery. I just called his office, asked if he did the surgery, when they said yes, I went ahead and made a consultation just to hear what he had to say. There is no harm in finding out what the doctor has to say. If you aren't comfortable I would definitely consult another doctor. I was lucky in the my doctor really went over everything with me. He asked me to bring my husband in so everyone could be on the same page. I felt that if anyone could help it was him. I felt that he would try his best. That definitely comforted me. There is a little bit of info at if you want to check out their website. Good luck guys. Hope to hear from you soon.



                • #23
                  I forgot. VSL#3 is awesome!!! The Mayo Clinic suggested it to me in April 07. It has helped my digestion a lot. Since I have IBS along with IC (don't most of us?), they said it would help to decrease some of the side effects of IBS.


                  • #24
                    I am so glad to hear you are doing better and that there is hope.

                    William Ellery Channing:
                    Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.