Is this Vulvodynia? Please help!

I am 25 and I suspect I could have Vulvodynia which is terrifying from what I have read about it so far. Really, really scary stuff! But information is good. I am going to schedule a GYN appt on Monday, but for now I thought I would ask here. I feel very hopeless and afraid. Please, please, take the time to read and let me know what you think.

Some background:
When I was in middle school and first started getting my period, I was in tears every month because I couldn't stand the feeling of pads touching my skin down there, but I couldn't insert tampons either. I didn't have pain, per say, with these things, but I just could not tolerate the sensations of them. Things improved for several years, but at age 22, I suddenly became VERY uncomfortable and sensitive to touch down there, with no obvious trigger. I have been diagnosed with Sensory Integration Disorder (SID) which is a very poorly understood condition even less known than Vulvodynia, where the brain is unable to habituate (get used to) normal every day sensations. (For example, when  in a room with a ticking clock, i consciously hear every single tick every single second which of course makes it hard to focus on having a conversation or much else and quickly becomes maddening). I thought that SID was the cause of my sensitive vulva. After 3 years of treatment (including specific neurological therapies for SID, cognitive behavioral therapy, and a high dose of SSRI) many of my SID symptoms have improved, however, the discomfort around my pubic area has not. SID is something I was born with, yet this vulvar discomfort came on rather suddenly at age 22. I am beginning to wonder if it is different? Perhaps vulvodynia can be caused by SID. I believe that dr's in different fields often have different names and treatment methods for the very same problems.

My symptoms:
From what I have read about vulvodynia, it sounds like I may experience some symptoms described as the generalized/unprovoked/dysesthetic type where it bothers me all day, every day. The thing is, I usually wouldn't describe the sensation as "pain", but more like extreme, intolerable hypersensitivity of my outer vulva.  Anything brushing against my hairs drives me insane and I simply cannot ignore the sensation. It sort of feels like the feeling you get when a big gross spider crawls over your skin at night, only you can't brush it off. When this suddenly started, I stupidly tried shaving, and worse, nair, in the hopes that completely removing my hair would solve the problem, but of course that made things hurt like hell for a long time. Even with the hair removed, my skin underneath was incredibly sensitive and was being touched more without the hair as a barrier. I am so confused because vulvodynia is described specifically as "pain". Although  I don't usually describe the sensation as "pain", it does hurt  if I move my hair forcefully with my fingers, especially going "against the grain". ****cringe**** When my partner touches me there and I am not prepared for it, I certainly react as though I were in pain.

I am sexually active, although less so lately. The problem is that I tend to avoid any touching of that area so its hard to be intimate  even though I desperately want it. I do have some pain with intercourse, especially upon initiation. This has been less with my current boyfriend of 1.5 years, which I attributed to the fact that I am more comfortable with him than I ever have been with anyone before. If I ease into it I usually feel better after a few minutes. It often burns or stings afterwards, but only for a couple hours and I can sleep it off. My day -to- day discomfort really just involves the outer vulva region covered in hair. I can use tampons now without much issue (I'll never enjoy putting them in but I can certainly tolerate it), but I can't wear a simple pair of cotton underwear because the seams in the crotch drive me insane.



Where I am now:
Without rambling too much, I am at a point where I am very very frustrated, to say the least. I have stopped wearing underwear altogether (and jeans or pants at all if its above freezing temperatures) and I get by wearing the kind of running shorts that have built in liners.  The synthetic materials are smoother and don't catch the hair or bother me so much. Going commando isn't good because anything at all touching me down there is maddeningly intolerable so really the only option would be to live life bottomless (which I do as much as possible when I can get away with it at home). I get by by not caring what other people thing of my attire, and by working from home when I can. The thing that has me depressed is that I used to love to run, but for the past year the sensation of my running shorts moving against my pubic hair has been intolerable. I have tried to stick with running as much as I can (well, I tried to quit but I missed it too much), but this problem has really killed the enjoyment of the sport I used to love. It often bothers me while hiking too, and frequently while simply walking around. How Horrible!

What do you think? Does this sound at all like vulvodynia? Has anyone had success with therapies specifically with the hypersensitivity? I wonder if perhaps I should pursue some other treatment options beyond those that have been prescribed for SID. I don't expect to ever be completely symptom free, but I just want to once again love to do what I love to do. I just want my life back.

Thank you so much for taking the time to read this and for any feedback you have to offer.

Hello Gazelle. I'm sorry to hear you are struggling with SID and possibly vulvodynia. I really can't say if what you are experiencing is vulvodynia or not. What I can tell you is that I believe vulvodynia is a neurological condition. The 'switch" is turned on by many different stimuli or a perfect storm of all of these different stimuli - infection, stress, injury, genetic tendency,
musculoskeletal disorders, etc.... I have a history of IBS, restless leg syndrome, Bells Palsy (I had paralysis of the facial nerve for months when I was a teenager) and migraines which are all neurological conditions. I CAN tell you that I have always been uncomfortable in jeans. I have never liked wearing them. Couldn't wait to get them off. I just assumed that everyone felt this way when they wore them. I too was very sensitive to movement of my pubic hair. Just assumed everyone felt that way too.
Vulvodynia came on suddenly for me. One night out of the blue sex was horribly painful like being cut with razor blades then I had swelling, throbbing, burning, drawing pain that never stopped. Over the last 10 months the swelling, throbbing pain has gotten better but the burning has been constant up until this last month. Sex was not painful the last time I tried it but I was in pain for days after. Sex should never be painful and it is not normal to have pain burning after sex. You should definitely see your doctor and get an exam to make sure there are no infections and go from there. Read all you can on this site and google vulvodynia to learn as much as you can. There are good books out there too. "When Sex Hurts", "Ending Female Pain" "The V Book" "A Headache in the Pelvis" There are many ladies on this forum who have a very good understanding of vulvodynia. Hopefully they will see your post and offer you more information . Good luck! Hugs to you.
Delilah

hi, I have the same symptoms on my left labia. It literally hates anything "pressure" and on some mornings the pubic hair when touched makes the skin vibrate. I just want to die, I don't think I will ever get better

Im not trying to be mean mary jane but all your posts are negative I understand this sucks but maybe putting a more positice spin on things will help sitting on a board saying you'll never get better is just gonna say to yourself you never will. Why dont you try telling yourself you can get better and maybe you'll start feeling that way. But dwelling on the negatives will never help. And if you arent finding help go somewhere else. Its not helpless if I had given up I would have never been cured. It may take some time but this certainly can be treated. We all have bad days I certainly have my days too

@Alana, I know, everyone keeps telling me I'm very negative. I'm just very frightened since I've read some similar cases to mine where the bartholin gland excision only brought more pain. It's making me paranoid

I dont mean to come off as.a bitch trust me.I understand but I think if you mentally think yoi can get better it'll help you more!