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Well, I guess I don't know where to start. Basically, I have suffered from extreme physical pain for the past five years or so. Just 5 days ago, after ONE more trip to the emergency room with pain so severe I actually passed out, I finally heard a diagnosis: Vulvar Vesitibulitis. After hearing the symptoms (if you can call them that, since I agree with Marie that VVS is a symptom in itself) and recognizing them as the hell I'd suffered through for the last several years, I almost kissed the ob/gyn who'd been called in to see me. This disease has taken over my life since I first began having "symptoms" at age 20. I'm just about to turn 25 now and the last five years have been unbelievably difficult. I went to doctor after doctor after doctor, all to no avail. I was diagnosed with UTIs, pudental nerve damage, scar tissue, yeast infections, herpes, pelvic inflammatory disease, and of course everybody's favorite: mental problems. No doctor could find anything physically wrong with me, and none hesitated to advance his or her theory of how/why the whole thing was basically in my head. During a particularly bad episode that drove me to the local University emergency room, a male doc stormed into the room, made a snort of disgust at my inflamed and swollen labia, chastised me for me cries of pain, then actually shouted, "she's got herpes" to the student who had initially seen me and was standing OUTSIDE the room, in the corridor. Confused, I queried the doc as to how this diagnosis could be correct. Didn't an initial outbreak of Herpes occur 2-3 weeks after initial contact? Why were there no lesions or sores? How could I have suffered from this disease for 5 years and two long-term partners without one outbreak from anyone? He didn't bother to answer any of my questions, and instead thrust a prescription for something into my hand and breezed out again. I was back in that emergency room one week later, after trying to kill myself. Ironically, by taking a massive overdose of all the painkillers/muscle relaxants that have been prescribed for me over the years by doctors weary of my complaints of pain. I really don’t know if I actually wanted to end my life and suffering or if I thought someone at the hospital might take pity on me and actually try to figure out what was wrong with me. My point in sharing all of this is to make clear to those suffering from VVS that it is a real condition. Don’t listen to the doctors, friends and family that tell you that it’s all in your head. Your pain is real, and as I am quickly learning, the only way to deal with it is by taking control of your own body and health and demanding help. I really think if enough women suffering from VVS speak up clearly and loudly, perhaps some progress will be made and relief found. If anyone who reads this has any information on VVS treatments, studies or specialist, PLEASE send them to me at saoirsekelly@hotmail.com. I wish you all good health and happiness.
In Reply to: What Vestibulitis has done to me posted by Maureen on January 20, 2000 at 18:29:51:
I also had this condition. It started for me after the birth of my first son. I had 3 surgeries (once a clever OB/GYN finally did some research into why I was having pain) to have some of the painful patches excised. I did NOT suffer the extreme pain you describe here. For me it was too painful to have intercourse, and I had mild pain from wearing jeans, dealing with my period, etc. This condition leaves a woman emotionally scarred. I now regret the surgeries, and I feel like it would have passed on its own if I had given it 5 years or so and if I had known how to heal my body with my mind. I hope you find the answers that will lead you to wellness. You are not alone my friend.
In Reply to: What Vestibulitis has done to me posted by Maureen on January 20, 2000 at 18:29:51:
Hi, Maureen
I've been researching in the ENDLESS ARCHIEVES this evening. Having, believe it or not, FUN researching in order to learn how to achieve WELLNESS. Would still be there if my Computer hadn't decided it was tired and shut down. (Hate that when it does that!)
In process of trying to get to where I was came across the BB and decided how about a Break girl. Amazes me to learn how much there is I've yet to learn. Though I've got a lot of things melting down, this is not one of them.
I typed into the search this site at the top of the screen and researcheda short time to learn. Came across one of the archieves which contained a website address. Believe me it worked on my computer and I even put bookmark there so I could bring it back up again. Included in this site is a chat time. Thought you might be interested in this link and I'll attempt to list below. (Hope it works) This is my way of trying to help others. Used to think I was all by myself as well.:-)
Dr Glazer's Vulvodynia..com
www.vulvodynia.com
___________________
Good Luck and I Pray for Everyone To Heal!!
Paulette
In Reply to: What Vestibulitis has done to me posted by Maureen on January 20, 2000 at 18:29:51:
Hi, Maureen
I've been researching in the ENDLESS ARCHIEVES this evening. Having, believe it or not, FUN researching in order to learn how to achieve WELLNESS. Would still be there if my Computer hadn't decided it was tired and shut down. (Hate that when it does that!)
In process of trying to get to where I was came across the BB and decided how about a Break girl. Amazes me to learn how much there is I've yet to learn. Though I've got a lot of things melting down, this is not one of them.
I typed into the search this site at the top of the screen and researcheda short time to learn. Came across one of the archieves which contained a website address. Believe me it worked on my computer and I even put bookmark there so I could bring it back up again. Included in this site is a chat time. Thought you might be interested in this link and I'll attempt to list below. (Hope it works) This is my way of trying to help others. Used to think I was all by myself as well.:-)
Dr Glazer's Vulvodynia..com
www.vulvodynia.com
___________________
It didn't work, I'll try one more time. If it doesn't work maybe RHJ++ can fix! Sorry BIll & Dr Stoll
Vulvodynia Homepage
___________________
www.vulvodynia.com
Good Luck and I Pray for Everyone To Heal!!
Paulette
In Reply to: Anonymous You're Right-You're Not Alone No One IS ALONE NO ONE IS AN ISLAND!!:-) posted by Paulette on January 20, 2000 at 23:07:03:
Paulette:
When we were arranging the in-site search engine a while back, the archives sure seemed like the ENDLESS ARCHIVES. We had to keep going back to FreeFind and begging for additional disk space for our extensive archives index.
When Walt and Bill look at archiving the last year's posts, (some % of 20,000 of them!) it sure looks like the ENDLESS ARCHIVES.
When a person shows up here and starts looking at the arvhives on some popular subject, it sure looks like the ENDLESS ARCHIEVES.
Glad you are willing to put in a little time and effort to enjoying and benefitting from them!
BTW, when you type in a link (and I NEVER type them in, I copy and paste them in for accuracy), the form is http://www.vulvodynia.com/
RHJ++
In Reply to: What Vestibulitis has done to me posted by Maureen on January 20, 2000 at 18:29:51:
Maureen, et al:
I have had vulvar pain for about a year and have found that doing relaxation is dissolving that pain. I know it's hard to deal with this.
I have to disagree about that vulvodynia bulletin board and site. It is dismal and not energized with power or positivity. Just reading those posts can make you feel physically WORSE.
Dr. Stoll can you comment on any success stories you've seen with this?
Any ladies out there who've healed?
Anonymous, are you all better now? What are the "healing mind" therapies you indicated?
Thanks for listening. Good luck and peace to all...
Dee
In Reply to: To everyone, including Dr. Stoll posted by Dee on January 21, 2000 at 11:22:23:
Thanks Dee for sharing.
I have not explored the BBS that you did, but your point is well taken in general. Too many "support groups" are really depressing places in which the participants are Victims.
And they usually (unconsciously) plan to remain Victims forever due to the power that this gives them over other people around them (special treatment, a special badge you wear, frequent attention, because you're sooooooooo sick you don't have to ___, etc).
So there's often no exit from the support group. Once you join, you will have and will complain about the (whatever) malady till the day you die, without ever actually doing anything about curing it. No one ever recovers completely and "graduates" from the support group back into normal life.
We have discussed this phenomenon of "support groups" here before, to be sure that a support group will actually support you and help you get thru/past whatever the problem is.
Hope this helps someone avoid this frequent trap.
RHJ++
In Reply to: Re: Beware of "support" groups that drag you down! posted by RocketHealer Jim++ on January 21, 2000 at 11:37:07:
Hi, Jim
Agree with you in some aspects reference to support groups.
I'm currently in support group in which our discussions are centered on Healing and never to be a Victim again.
Purpose of my group is to let each member know they're not alone, direct them to where help may be accessed, HOW NOT TO BE A VICTIM FOR LIFE! Those who were victims share their experiences and assist others towards healing and getting back into the mainstream called LIFE.
Can't speak for other support groups, however, my group on Domestic Violence I can. Due to my pathway to wellness I no longer need the group. Now find myself cancelling my attendence at these meetings due to my pathway to wellness. If I do go, it's in order to assist those needing assistance in picking up the pieces of their lives and families and continue with their lives.
A counselor is in attendence at ALL sessions.
Normally would keep quiet for fear of having what I convey misunderstood. This is my opinion and observation only with my personal group and I'm not passing judgement to anyone or group.
May God Bless You and Always Keep You In His Care
NAMASTE
Paulette
In Reply to: Re: Beware of "support" groups that drag you down! posted by RocketHealer Jim++ on January 21, 2000 at 11:37:07:
True! However, all "support groups" are not that way. I was raped and even years after, I was still experiencing panic attacks. My father made me go to a support group at a rape center and it was the best thing I've ever done for myself. *THANKS DAD*
There I saw people who had experienced the rape and violence even worse than what I had experienced. That was an eye opener. One girl had the scar on her neck where she was slashed and left for dead. Thank God he didn't get her artery. She is a really sweet and wonderful person.
Our counselor had us take self defense classes...and I swear to you, THAT gave me strength! I stopped feeling helpless...that this would NEVER, EVER happen to me again. It empowered me and the panic attacks stopped. *THANK YOU DAD*
So please don't nail all support groups in one grave. Sometimes you need help.
Terrie
In Reply to: Re: Beware of "support" groups that drag you down! posted by Paulette on January 21, 2000 at 12:25:56:
Whew! Well said, well said!
Bless You,
Terrie
In Reply to: Re: Beware of "support" groups that drag you down! posted by RocketHealer Jim++ on January 21, 2000 at 11:37:07:
Hi Jim.
You might check take a moment to check the site out, just to get a glimpse of what so many women see when they are looking for help. It's a lot of "no cure" "no hope" and WRITING IN CAPS ABOUT HOW TERRIFYING THE PAIN IS AND SCARY AND ENDLESS
You get the picture. Vulvar pain can last a long time (but then, there's no "rule" that says it *has to*, and so many doctors are clueless about it, and it affects your sexuality, your integrity, the clothes you can wear or not wear...etc. I should say, it affects your integrity, but it doesn't have to detract from your integrity. There is power in every experience, because underneath it all you're still a human being with a soul and that is where you find strength, always, always, no matter what.
I believe that it is possible to "store" emotions in areas of the body including and especially the vulva. Female issues, issues of anger or having been hurt by a man, does this follow with you?
Anyhow, I've created my own "support group" and it can be scary sometimes but I've learned great things on the journey, and I have healed much more alone than through the conventional methods I have tried. THis may not be everyone's route, but it is mine.
Thanks for your vote for personal healing.
Dee
In Reply to: Re: Beware of "support" groups that drag you down! posted by Terrie on January 21, 2000 at 13:03:56:
Funny, the last time we discussed "dead-end" support groups someone thought we were lumping them all together and blasting them all. And got all upset/defensive about their particular support group not being "like that". Your reply was not exactly that way, but I was reminded of our earlier discussions.
Certainly some support groups are great/beneficial/etc. Some are not.
I believe that a little awareness before stepping in to a new group can be wise.
RHJ++
In Reply to: Re: Beware of "support" groups that drag you down! posted by RocketHealer Jim++ on January 21, 2000 at 11:37:07:
Hi, DR Stoll
Appears I opened a can of worms by providing information on a website for Vestibulitis last night.
I scanned through it prior to writing the reply and felt that each person had the right to have as much information as possible, in order to make their own decision. Aware there are probably some support groups that perhaps don't provide adequate services to those needing it most.
Made judgmental error in naming my support groups' name. I am in support of support groups, as long as it provides necessary for the individual to begin healing and return to mainstream of life.
Agree that healing needs to include a wellness plan. Really had no intention of putting my foot in my mouth.
Paulette
In Reply to: Re: Funny, the last time we discussed dead-end support groups someone thought we were lumping them all together posted by RocketHealer Jim++ on January 21, 2000 at 14:08:54:
Thanks for saying that. I agree that a support group HAS TO be a support. Mine was, Thank God. Those panic attacks were awfull!
I'm not sure I'd be alive today if it weren't for that group. I used to get these things out of the blue - even while driving. Luckly, I was always able to pull over until I could breath again and the dizziness stopped. But what if?
Thank God I'm alive and thank God for that group.
Terrie
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