Re: Vulvar Vestibulitis

[Guest guest]

What kind of cream are you using???

Thanks

Jen

Subject: Vulvar VestibulitisTo: VulvarDisorders Date: Tuesday, July 29, 2008, 10:39 AM

So, I was diagnosed with vulvar vestibulitis in May of this year. My sypmtoms started Feb 11th of this year (my 31st birthday ya happy birthday to me).I guess I am lucky in that I have read of some people who took years to get a correct dianosis of it. I of course went through the usual they thought I had a yeast infection, vaginal bacteriosis, bladder infection and of course when all those were negative they went on to the STD testing. When all that finally came back negative the PA I was seeing threw up her arms and sent me to a GYN.I was lucky in that once he talked to me he pretty much knew right away what was wrong. He tested the area with a q-tip and when I reacted exactly how he thought he diagnosed me with the VV. He told me we had 3 options. The first was a cream, the second was an oral medication and the 3rd was surgery but he said he cautions his patients with the 3rd

because of the inherant risks of surgery. So far I have been using option 1 and it works pretty well for me. I started out having to use it twice a day. Now it seems only a few times a week but I have noticed if I am stressed out I seem to have to use it more.I don't know if everyone knows what VV is but basically from what the DR told me it's a misfiring of nerves. So basically you suffer from a burning sensation when you shouldn't be. He told me they don't know what causes it and there is currently no cure, only treatments to help keep it under control. I find it frustrating to be suffering from something that isn't well known about. My friends and family have all been with me through it and inquired on how I was doing, but they just don't get what it is like to deal with this on a daily basis.

[Guest guest]

Hi there,If you look back through our older posts, you will find that you are so NOT alone. Many on the group have either primary, or more likely, secondary vestibulitis/vestibulodynia. What kind of cream are you using that has helped. Using topical Estrace cream has helped my vulvar skin. I have an area of localized Vestibulodynia...(caused by using the birth control pills) and also I have generalized Vulvdodynia caused by nerve compression. Welcome to the group....~Chelle

[Guest guest]

Betamethasone valerate cream. It seems to work pretty good so far.

Vulvar VestibulitisTo: VulvarDisorders@ yahoogroups. comDate: Tuesday, July 29, 2008, 10:39 AM

So, I was diagnosed with vulvar vestibulitis in May of this year. My sypmtoms started Feb 11th of this year (my 31st birthday ya happy birthday to me).I guess I am lucky in that I have read of some people who took years to get a correct dianosis of it. I of course went through the usual they thought I had a yeast infection, vaginal bacteriosis, bladder infection and of course when all those were negative they went on to the STD testing. When all that finally came back negative the PA I was seeing threw up her arms and sent me to a GYN.I was lucky in that once he talked to me he pretty much knew right away what was wrong. He tested the area with a q-tip and when I reacted exactly how he thought he diagnosed me with the VV. He told me we had 3 options. The first was a cream, the second was an oral medication and the 3rd was surgery but he said he cautions his patients with the 3rd

because of the inherant risks of surgery. So far I have been using option 1 and it works pretty well for me. I started out having to use it twice a day. Now it seems only a few times a week but I have noticed if I am stressed out I seem to have to use it more.I don't know if everyone knows what VV is but basically from what the DR told me it's a misfiring of nerves. So basically you suffer from a burning sensation when you shouldn't be. He told me they don't know what causes it and there is currently no cure, only treatments to help keep it under control. I find it frustrating to be suffering from something that isn't well known about. My friends and family have all been with me through it and inquired on how I was doing, but they just don't get what it is like to deal with this on a daily basis.

[Guest guest]

I am using a cream called betamethasone cream. It seems to work pretty good so far. The Dr. said as long as that keeps it under control we will leave it as is and I don't need to see him again unless things worsen but he did advise me to keep getting my yearly pap. It is mixed feelings to know there are others out there...It sucks knowing others have to go through it as well but good to know I am not alone.

-Kathy

Re: Vulvar Vestibulitis

Hi there,If you look back through our older posts, you will find that you are so NOT alone. Many on the group have either primary, or more likely, secondary vestibulitis/ vestibulodynia. What kind of cream are you using that has helped. Using topical Estrace cream has helped my vulvar skin. I have an area of localized Vestibulodynia. ..(caused by using the birth control pills) and also I have generalized Vulvdodynia caused by nerve compression. Welcome to the group....~Chelle

[Guest guest]

Kathy,I had a doc prescribe that cream for me 4 yrs. ago. I told him I thought my problem was with my hormones and I wanted to try Estrace cream (bio-identical estrogen) topically. He declined. I decided not to use the Betamethasone and saw another gyn. I asked him to use Estrace topically, he allowed me to. That was indeed the problem with my skin. Of course everyone is different, though. Since you are using the cream, I would ask for the Estrace. Steroids creams can indeed be good for inflammation, but many women use topical Estrogen with the steroids. That way, it minimizes the skin being thinned out from the steroids. And yes, I know it's hard to think that you are one of many women with vulvar pain...but stay determined to get well! Also, just so you will know...tight pelvic floor muscles can 'refer' pain to the vestibule area. Several have gotten well from an

experience Physical Therapist who works on pelvic floor dysfunction & properly aligning the pelvis. We have a lot of info in our older posts, as well as, the files, database, etc. which can be found on the homepage. Scroll down and you will find the homepage link! Take Care,Chelle

[Guest guest]

Hello!

It looks like that betamethasone cream is a type of steroid. I have also used a similar cream-clobetasol. It is helpful. However, you do have more than 3 options and I think most of us who are almost 100% better have found that it usually takes a few different pieces to put together to get permanently well.

First of all, are you on birth control pills? There is a link to BC or hormonal contraceptives to vestibular pain. If you are on the pill, the patch, or the ring, or the shot you may want to consider alternatives. The other option is estrace cream applied topically. This helps toughen up and heal the skin, whereas a steroid cream is more of a band-aid estrace does support the body's ability to heal. Of course, oral meds can also help your body learn to turn off those pain signals and a lot of women do well on both topical AND oral meds. Physical therapy has helped many of us get well. The muscles in the pelvis guard against pain, which restricts blood flow and increases inflammation and decreases the body's ability to heal.

www.pelvicpainrehab.com

is a good resource. Finally, allover holistic approaches such as yoga, meditation, counseling, acupunture-anything that promotes overall wellness and the body's ability to heal itself is a good support to the medical things you are doing. You CAN get better....many women have gone from "managing" it to well again. It just can take some time and a combination of treatments.

Take care,

Lindsey

[Guest guest]

I haven't been on birth control pills for probably 6 years now. The physical therapy does sound interesting, however I live in a rural area where access to that kind of care is not readily available. As it is the GYN that I saw is only at the clinic I go to once every two weeks. The closest place that I could go that might be able to provide that kind of service is 2 1/2 hours away. I might be able to talk to the dr about the estrace cream though and see what he thinks about that. Thanks for the info!

Re: Vulvar Vestibulitis

Hello!

It looks like that betamethasone cream is a type of steroid. I have also used a similar cream-clobetasol. It is helpful. However, you do have more than 3 options and I think most of us who are almost 100% better have found that it usually takes a few different pieces to put together to get permanently well.

First of all, are you on birth control pills? There is a link to BC or hormonal contraceptives to vestibular pain. If you are on the pill, the patch, or the ring, or the shot you may want to consider alternatives. The other option is estrace cream applied topically. This helps toughen up and heal the skin, whereas a steroid cream is more of a band-aid estrace does support the body's ability to heal. Of course, oral meds can also help your body learn to turn off those pain signals and a lot of women do well on both topical AND oral meds. Physical therapy has helped many of us get well. The muscles in the pelvis guard against pain, which restricts blood flow and increases inflammation and decreases the body's ability to heal.

www.pelvicpainrehab .com

is a good resource. Finally, allover holistic approaches such as yoga, meditation, counseling, acupunture-anything that promotes overall wellness and the body's ability to heal itself is a good support to the medical things you are doing. You CAN get better....many women have gone from "managing" it to well again. It just can take some time and a combination of treatments.

Take care,

Lindsey

[Guest guest]

If you can do pt (physical therapy) 2 1/2 hours isn't bad at all. I travel that or even more to be seen. The nice part is that my husband was trained on how to do the pt, so he does it for me several times per month. For your health and wellness it's worth it!

Lindsey