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Vestibulectomy

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  • tweety34
    replied
    I am so glad to hear you are doing better and that there is hope.

    Cindy

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  • Maribeth-rn
    replied
    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.

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  • Maribeth-rn
    replied
    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 mayoclinic.com if you want to check out their website. Good luck guys. Hope to hear from you soon.

    Beth

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  • Angeles
    replied
    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!

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  • tweety34
    replied
    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.

    Cindy
    Last edited by tweety34; 10-05-2007, 03:12 PM.

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  • Maribeth-rn
    replied
    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.

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  • tweety34
    replied
    Maribeth:
    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.

    Cindy

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  • Maribeth-rn
    replied
    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.

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  • tweety34
    replied
    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.

    Cindy

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  • Batty
    replied
    Hope nobody minds that I'm bringing an old thread back up to the top.

    I was diagnosed with IC 2 years ago. I was only recently diagnosed with vestibulitis, but doctors seem to think I've had it as long as I had IC. My symptoms aren't as bad as some of you. I just have pain during the "swab" test. I have a lot of redness and occasional burning. I don't have problem with clothing or sitting, etc. I have not had sex anytime recently, so I don't know if it causes any problems.

    The gynecologist I've been seeing tried a combo cream of boric acid/antifungal cream for 4 weeks that didn't help. Today she recommended I have vestibulectomy. To me, it seems a bit extreme considering the other treatments have not been exhausted and since I do not have the constant pain that others have. Should I even consider this? I'm thinking of trying to find another doctor, but it is nearly impossible to find doctors who specialize in this disease.

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  • Maribeth-rn
    replied
    My doctor's name is Dr. Butler. His phone number is 859-381-1066. I first heard about the procedure while I was at Mayo Clinic in Rochester, MN. The gyn doctor there's name is Dr. Amols. The Mayo number is 507-284-2111. I am sure either of those would be happy to talk to you. There is also a VV specialist in Cincinnati Ohio. I don't know the number, but his name is Dr. Baggish. Those would be good places to start. They might be ablt to recommend someone. Good luck with your search. If I can be of any help, feel free to send me a message. Take care.

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  • ihurttoo
    replied
    Since you have the "right there" pain, vulvar vestibulectomy could help that. Beyond that, I honestly dont know what to tell you, since I can only tell you about my own experiances. Maybe someone else can explain this better than I can. What did the Dr. who did the Q-tip test tell you?

    I do remember from my post-op report that there were mast cells in my biopsies of both my bladder (during my cysto/hydro) and of my vulva, (during my vestibulectomy). But, I dont know if that is inflammation. I just know it is something that "normal" people dont have.

    Wish I could help more, but I am not able to think really clearly right now, since I am flaring and have already thrown all my meds at it, and they have already gotten me "fuzzy".

    Hopefully, someone else can explain this. Leelee! Where are you? (She is great at explaining this!)
    Last edited by ihurttoo; 04-27-2007, 10:18 AM.

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  • Kara29
    replied
    I will be having a little more than the opening of the vagainal entry removed as I have a left over Skene's Gland that is causing so much pain. I guess every doc does thing differently. I also have what they call Clitodynia. I don't have flares of this often but when I do I want to go through the roof. It feels like paper cuts on that part.....

    Thank You for Sharing your experiences on such an embarrasing thing to talk about.

    Kara

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  • icbop
    replied
    OK, Now I am confused. I am still learning about this. I have general inflammation in the vulva (biopsy results), but the q-tip test drove my through the roof.

    I thought that VV was inflammation in the vestibule, and vulvodynia was when there was nerve pain in the area you could not point to ans say 'it hurts right there'. I ahve the "right there" type. Though "right there" has grown from the 'oclock position to the entire ring.

    Any info would be helpful. I'm sure the treatments are slightly different, which is why I am curious.

    Thanks in advance!

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  • ihurttoo
    replied
    The only tissue that was removed from me was at the opening (entry) of the vagina. It was several small areas (each were about the size of a pimple.) Mine was nerve pain that didnt respond to any meds, (including the neuropathic meds). He didnt go anywhere near my urethra or clitoris. I know my Dr. doesnt do those kinds of surgeries...he only does goes around the entry of the vagina. I dont know if other Drs do or not, or if it is called something else....I am just not sure. But, he and I have discussed this before (regarding someone else, not me), and he said he doesnt do the surgery for anything but the entry to the vagina.

    One other thing, alot of people have pmed me that were confused thinking this was a surgery to cure vulvadynia. It isnt. If you have vulvadynia before surgery, you will still have it after surgery. Vulvadynia is more general vaginal pain, itching, soreness, redness, etc. Vulvar Vestibulitis is very focused pain, and settles into small areas mostly at the opening of the vagina. The areas are sometimes as small as the head of a pin, or typically are about the size of a small pimple or blackhead. They are exquisitly painful, but cant be seen by looking. The areas where they are look no different from the rest of the vagina. Vulvar vestibulitis is usually d/xed by The Q-tip Test. They touch you very lightly (no pressure is used) all around the opening, if you have VV, when they touch those spots, you almost come up off the table, it hurts so bad!

    From what I have read here, there is a subset of people who have Clitordynia. It is like Vulvar vestibulitis, but it is on the clitoris. I am not familiar with any surgery for this. (I am not saying that there isnt one, just that I dont know about this one.) Hopefully, if someone has had this, they can elaborate more on it and what can be done for it.

    Anyway, I hope that helps clarify it a bit more.

    Hugs,
    Amy

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