Seeing Mayo specialist soon for VVD
Posted , 5 users are following.
After having my pelvic PT last week, my PT therapist discovered I had red raw swollen skin. She has referred me to a specialist who handles Vulvodynia exclusively. I'm hoping she can find methods of reducing the pain and and treating it. I see a regular Gyn first to check the skin and see what can be done to treat it before I see the specialist. Please wish me good results. The pain has been bad for a long time now. I'm running out of tolerance.... and getting increasingly depressed. I'm praying there are REAL answers to this problem. Regular doctors have no idea how to treat it. Thanks in advance.
1 like, 32 replies
erika90744 debi14820
Posted
linda41401 erika90744
Posted
Hi Erica, just to say, my Vulvadynia feels like cystitis would be at times, deep inside. Other times it can feel like burning sensation all around, and also on lips, sometimes too in back passage, I guess everywhere there are nerves. Sometimes the pain goes to be replaced with a dragging sensation and uncomfortable feeling, similar to if you have used a tampon and got it in wrong. My gynaecologist could see nothing abnormal, there wouldn't be anything to see anyway with Vulvadynia. But she did diagnose Vulvadynia. I don't know what started it,bit began overnight almost on 22 November. I also wonder if it anxiety or stress related. I am having counselling too for anxiety.
Suki_girl erika90744
Posted
debi14820 erika90744
Posted
Not many ob/gyn can catch vulvo dynia... I'd get another opinion if you can. It takes months of repeated exams for Gyns to catch it. Mine went on for 4 years before it was diagnosed! Don't wait that long! Yes vulvodynia can just affect the labia only. Try Aspercream with Lidocaine... or Recticare... (bowel aid aisle). and try ice packs... And yes stop reading all the horror stories. Some people like to tell them. Lord knows why. It's like pregnant women sometimes tell the worst stories that scare pregnant women half to death. You can also look at NVA for advice. They have lots of articles, newsletters, its worth it. They have a whole video of vulvodynia. I have pain in vulva and vag. it's like an aching and sometimes a throbbing. Ice packs help it the most. Laying down helps a lot. I also take Cymbalta, Amitriptyline, and Gabapentin. They all work together. Keep seeing doctors if you can to find the right one for you. Look up vulvodynia specialists in your area. Also the NVA has a list of vulvodynia specialists by state... Best wishes Erika.
debi14820 erika90744
Posted
If you have pain anywhere near your vaginal opening, that is usually considered to be vulvodynia, unless they can prove it's from an infection. I get burning pain in lips... and sharp aching pain in vag. No, OB/Gyn don't usually catch it unless they can see the spasms or feel them. Or if you continually go back with pain and they can SEE that you are in pain... usually during an Gyn exam. And yes it can be anxiety, but I feel its brought on by not knowing what is wrong. Then of course you would be anxious! I hope you can find the right doctor to give you answers. Look for a vulvar specialist.. They know the most. Best wishes Erika.
debi14820 erika90744
Posted
Yes that is a common response from idiot doctors that can't see anything. They blame it on us. Only a vulval specialist can determine what is going on. We are not imagining it! I finally saw a new doctor and he feels that maybe my endometriosis is acting up again. I had it all removed over 20 years ago, but it can come back. So I'm scheduled for surgery in March. I hope he finds something!! Keep looking and keep persisting... it's a real issue and it needs real treatment! Keep looking for a new doctor... if you can.
sa25296 linda41401
Posted
Hi, Linda. Have you managed to cure yourself? I have exact the same sympotoms as you.