I'm a 27 year old woman living in Norway (born and raised so I hope I'll be able to make myself understood even though english is not my mother tongue).
I have been suffering from vulvar vestibulitis or vulvodynia (if that is even what it's called nowadays, they seem to change the name a lot) for about 8 years now. That's what I've been diagnosed with so far anyway..
I have been to see several doctors here in Norway (with very little help since there is not a lot of knowledge about the condition or any similar conditions here). I even went to England and New York to try and get help.
I have been recommended TCA's (tricyclic antidepressants) and some topical creams. The TCA's I'm not touching because I know what they will do to me and I really don't even consider them an option. They would in no way improve the quality of my life.
I've tried lidocain with no help, cranberry tablets (made me worse), been on several antibiotics (for multiple UTI's - urinary tract infections), diflucan (yeast infection treatment) and so on.
I've sat and listened to doctors telling me anything from it all being in my head to that I'm just extra sensitive (!) and feel pain more so than any other women. I've had doctors completely ignore me and gynaecologists continuing exams even though I was crying my way through it. None of them showed any understanding for what I'm going through.
I should mention that the doctors in England and in New York showed understanding and seemed much more educated on the matter.
I can't work or go to school because of the pain I have and I'm also having problems staying physically active. This condition has an impact on pretty much every aspect of my life.
Over the past few years I've only gotten worse and I fear that it hasn't reached it's peak yet. I fear that someday I won't even be able to take care of myself. Other days I'm more hopefull about my life and future.
I read your story and saw the link to the webpage. I have gone through the entire site by now I think! I hope that I'll be able to make an appointment with the clinic sometime within the next few months (or within a year atleast) and that they will be able to help me there or atleast give me some answers. I also hope that it's not going to be a problem that I live in Norway. It's virtually impossible to get the proper help I need here.
I could write a whole book here about my symptoms and history, but I'm not going to do that.
Thank you for sharing your story and the link to the site! Good luck with your treatment and I hope you'll be feeling even better soon!
Women who are suffering with this are true heroes for their fight for treatment and a productive life. Stay positive and hopefull.
If anyone would like to contact me please leave a comment and I'll reply as soon as I see it.
- Hege, from Norway.
P.S. I'm starting a drug called cystoprotec (a natural medicine) soon to see if it will in anyway help control my pain. I suspect that I might have IC (interstitial cystitis) as well as VVS or vulvodynia. I don't know if it will work, but I'll find out. Thought I would mention it in case someone suffering with any of these conditions is reading this.
There is a great network site for IC sufferers and I think there are links on this page for people who suffer from VVS, vulvodynia and similar conditions as well as they often co-exist. www.ic-network.com
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I'm a 27 year old woman living in Norway (born and raised so I hope I'll be able to make myself understood even though english is not my mother tongue).
I have been suffering from vulvar vestibulitis or vulvodynia (if that is even what it's called nowadays, they seem to change the name a lot) for about 8 years now. That's what I've been diagnosed with so far anyway..
I have been to see several doctors here in Norway (with very little help since there is not a lot of knowledge about the condition or any similar conditions here). I even went to England and New York to try and get help.
I have been recommended TCA's (tricyclic antidepressants) and some topical creams. The TCA's I'm not touching because I know what they will do to me and I really don't even consider them an option. They would in no way improve the quality of my life.
I've tried lidocain with no help, cranberry tablets (made me worse), been on several antibiotics (for multiple UTI's - urinary tract infections), diflucan (yeast infection treatment) and so on.
I've sat and listened to doctors telling me anything from it all being in my head to that I'm just extra sensitive (!) and feel pain more so than any other women. I've had doctors completely ignore me and gynaecologists continuing exams even though I was crying my way through it. None of them showed any understanding for what I'm going through.
I should mention that the doctors in England and in New York showed understanding and seemed much more educated on the matter.
I can't work or go to school because of the pain I have and I'm also having problems staying physically active. This condition has an impact on pretty much every aspect of my life.
Over the past few years I've only gotten worse and I fear that it hasn't reached it's peak yet. I fear that someday I won't even be able to take care of myself. Other days I'm more hopefull about my life and future.
I read your story and saw the link to the webpage. I have gone through the entire site by now I think! I hope that I'll be able to make an appointment with the clinic sometime within the next few months (or within a year atleast) and that they will be able to help me there or atleast give me some answers. I also hope that it's not going to be a problem that I live in Norway. It's virtually impossible to get the proper help I need here.
I could write a whole book here about my symptoms and history, but I'm not going to do that.
Thank you for sharing your story and the link to the site! Good luck with your treatment and I hope you'll be feeling even better soon!
Women who are suffering with this are true heroes for their fight for treatment and a productive life. Stay positive and hopefull.
If anyone would like to contact me please leave a comment and I'll reply as soon as I see it.
- Hege, from Norway.
P.S. I'm starting a drug called cystoprotec (a natural medicine) soon to see if it will in anyway help control my pain. I suspect that I might have IC (interstitial cystitis) as well as VVS or vulvodynia. I don't know if it will work, but I'll find out. Thought I would mention it in case someone suffering with any of these conditions is reading this.
There is a great network site for IC sufferers and I think there are links on this page for people who suffer from VVS, vulvodynia and similar conditions as well as they often co-exist. www.ic-network.com
(Comments edited to remove physician name.)
April 9, 2009 - 8:47amThis Comment
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