Hello to fellow sufferers,
I hope you are not all in too much pain today.
I could really do with some advice on the above conditions, I have been suffering from Vulvodynia for 7 months following a series of yeast and bladder infections. It has got to the extent where I cannot wear jeans and can just about tolerate underwear. I wash the area only using water or aveno wash, wear only cotton underwear, use sensitive washing powder and change my underwear twice a day. Sitting is so painful, the pain is with me 24/7 and what makes the whole situation worse is my Husband and I got married only 2 months before all this started. I am only 22.
for the past 4 months I have been going to see a Vulvodynia and PBS specialist once a month. His method is Biofeedback and trigger point work as well as massage, tummy breathing etc. I am sure many of you are familiar with this type of treatment. This man is truly a godsend. He has helped me go from not being able to insert a finger to being able to progress to the largest size dilator and actually understands the pain we are in. However this has not reduced the amount of daily pain I experience what so ever, he said this should have been happening by now. Although I know how to control the muscles of the pelvic floor now, and can relax them, the pain just does not ease. Would anyone have any ideas as to why this might be? I use the biofeedback machine twice a day and practice with the dilators twice a day. I have taken up Yoga and do various stretches as per the 'Heal Pelvic Pain" book by Amy Stein... To no avail. I also take 20mg of Endep for the burning pain that seems to have spread to my feet and right arm. This works extremely well for the feet and hands but has done nothing for the Vulvodynia. I am travelling to Adelaide (South Australia) from Qld to commence some intensive therapy with the man I see on a monthly basis next week and am scared it will not help ease the horrific pain.
As of about 3 months ago I have been experiencing bladder pain and frequency with little warning. The Endep seems to work for the ureather pain for the most part but the frequency is getting worse. I also experience rectal pain and little warning when I need to go to the toilet.
I can not express my frustration with the medical profession enough. In just the first 3 months I saw 6 Doctors and 4 Gynaecologists before I got a diagnosis of Vulvodynia. I have finally found a doctor that is willing to prescribe the Endep for me and actually believes that Vulvodynia is a medical condition...Most of the doctors told me I either had yeast or it was in my head.
I manage to have sex with my Husband on occasion, stretching with the dilators helps but he feels frustrated with this as we have to do 'warm ups" before. It is in no way a pleasurable experience for me, but doesn’t cause agonising pain. Before this all started we had a wonderful sex life....I fear this condition may tear us apart, despite him telling me every day he loves me and will never leave.
Someone please tell me there is an end to my pain. I do not know how long I can live like this. No sex drive, constant pain 24/7 and even worse at work (sitting) needing to go to the toilet all the time....It just seems to be one thing after another....no progress, just going backwards....
Someone please give me some advice that I don't already know. I am sick of being told the same things by doctors.
Sorry for the long post I am very distressed.
Thanks,
Claire
I hope you are not all in too much pain today.
I could really do with some advice on the above conditions, I have been suffering from Vulvodynia for 7 months following a series of yeast and bladder infections. It has got to the extent where I cannot wear jeans and can just about tolerate underwear. I wash the area only using water or aveno wash, wear only cotton underwear, use sensitive washing powder and change my underwear twice a day. Sitting is so painful, the pain is with me 24/7 and what makes the whole situation worse is my Husband and I got married only 2 months before all this started. I am only 22.
for the past 4 months I have been going to see a Vulvodynia and PBS specialist once a month. His method is Biofeedback and trigger point work as well as massage, tummy breathing etc. I am sure many of you are familiar with this type of treatment. This man is truly a godsend. He has helped me go from not being able to insert a finger to being able to progress to the largest size dilator and actually understands the pain we are in. However this has not reduced the amount of daily pain I experience what so ever, he said this should have been happening by now. Although I know how to control the muscles of the pelvic floor now, and can relax them, the pain just does not ease. Would anyone have any ideas as to why this might be? I use the biofeedback machine twice a day and practice with the dilators twice a day. I have taken up Yoga and do various stretches as per the 'Heal Pelvic Pain" book by Amy Stein... To no avail. I also take 20mg of Endep for the burning pain that seems to have spread to my feet and right arm. This works extremely well for the feet and hands but has done nothing for the Vulvodynia. I am travelling to Adelaide (South Australia) from Qld to commence some intensive therapy with the man I see on a monthly basis next week and am scared it will not help ease the horrific pain.
As of about 3 months ago I have been experiencing bladder pain and frequency with little warning. The Endep seems to work for the ureather pain for the most part but the frequency is getting worse. I also experience rectal pain and little warning when I need to go to the toilet.
I can not express my frustration with the medical profession enough. In just the first 3 months I saw 6 Doctors and 4 Gynaecologists before I got a diagnosis of Vulvodynia. I have finally found a doctor that is willing to prescribe the Endep for me and actually believes that Vulvodynia is a medical condition...Most of the doctors told me I either had yeast or it was in my head.
I manage to have sex with my Husband on occasion, stretching with the dilators helps but he feels frustrated with this as we have to do 'warm ups" before. It is in no way a pleasurable experience for me, but doesn’t cause agonising pain. Before this all started we had a wonderful sex life....I fear this condition may tear us apart, despite him telling me every day he loves me and will never leave.
Someone please tell me there is an end to my pain. I do not know how long I can live like this. No sex drive, constant pain 24/7 and even worse at work (sitting) needing to go to the toilet all the time....It just seems to be one thing after another....no progress, just going backwards....
Someone please give me some advice that I don't already know. I am sick of being told the same things by doctors.

Sorry for the long post I am very distressed.
Thanks,
Claire
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