I don't know what is wrong with me. (long story)

Hi!  Essentially, I'm here to compare notes with people who understand what I'm going through.  I actually do not have a diagnosis for vulvadynia.  In fact, I do not have a diagnosis of anything!  However, I have done some reading up on sexual pain and I feel as though I might have vestibulodynia?  But I'm not sure.  Just going to give a quick run down of my stats and see if anyone has any answers (if I type it out it will probably get too long - this way you can see the whole picture at a glance!):

-Age: 21/F
-Relationship status: Boyfriend of 6 years.  I have been with him since I first became sexually active.  I have not had PVI or any other form of sexual relationship with anyone else - just him.  It's been a long distance relationship - we see each other once a year.
-When did this start: It started from the moment I first tried to have PVI.  I've known about this pain for 3 years now since I first tried PVI for the first time.
-Had PVI?: Not really.  He's never been fully inside (too much pain!!) however he did manage to rupture my hymen when I was 18 (when I first tried PVI).
-What does an attempt at PVI feel like: raw burning, cutting feeling at my vestibule area especially at 12 and 6 o'clock (so picture the vaginal opening like a clock face with the uretheral orifice at 12 o'clock).  I have a vague feeling of pain all the way around but not as bad as in the general area of the urethra!
-Penetration of other objects: I can do fingers - 2 of my fingers at most but my fingers are pretty small; I can do tampons no problem (although sometimes they hurt to remove although not tremendously).  Dilators hurt although I just tried them today for the first time.  I can do the smallest one with not much pain but moving it in and out to mimic sex hurts as described above.  I tried to move up a size today to the second smallest - burning, cutting, rawness pain ensues (I think maybe because I tried the in-out motion of sex earlier so I was already feeling bad down there but that's what I'd like to think - who knows).
-# Dr's appointments for this?: 1 - I just went just over a week ago.  It took a LOT of courage to go to my GP.

-What did the exam at the GP reveal?: Normal female reproductive anatomy (surprise, surprise)!!  Digital exam felt ok up to 2 fingers and speculum didn't bother me so much but I did feel a mild burning sensation in the areas described above.  I related this to my GP after the exam and expressed that I felt 'raw' and she said that yes I do look red down there.  I told her that my urethral orifice (I've become quite obsessed with that, haha) is red.  And she agreed that is was red indeed.  She said that, due to the nature of my relationship being long distance, I may not be used to being penetrated.  According to her if I were having sex on a regular basis I this pain would go away.  According to her, I feel this pain because I remember the time I lost my virginity and that it hurt and now I have a muscle spasm in response to being penetrated.  She recommended 0.5% hydrocortisone cream 3 times daily for 3-4 days and not to try penetration of anything until 3-4 days time had passed.  She also recommended I get a dilator set (which I have no invested in) and just let the dilators sit in for a little while.

Here's the deal: I tried the steroid cream for 4 days.  I did not notice a change in the colour of my vestibule - especially my urethra!  Still blood red.  Thought I'd go along step by step with the treatment and see how the dilators went.  I tried them as described above with water soluble lubricant.  The result was a very red and tender urethral orifice.

See, that's what has me really puzzled.  I know I need to see my GP about it again.  Perhaps even see a specialist if she can't do anything for me.  I'm going to sleep on it.  Maybe wait a few days and try again with the dilators - no dice?  I go to the GP and demand something be done.  I don't know if it's vestibulodynia or vulvodynia.  It hurts when I try to have PVI and it's ruining my life.

From my readings, I'm wondering if it could be a urethral prolapse?  I know that's typically seen in post-menopausal women (and at 21yo, I'm FAR from menopause).  But I did also read that it may be seen in pre-menopausal women and young girls.  Could this be a hormone imbalance?  Should I demand topical estrogen cream (that's a treatment for urethral prolapse).  It does not hurt to urinate.  Nor do I feel urgency to urinate.

Other signs & symptoms and more health history:
-history of yeast infections?  I've had 2, actually but I resolved them with vagisil cream (at least that's what I think - I do not feel the symptoms and the last time I had one was over a year ago).
-history of UTI? None (unless you can have a UTI without knowing - typically they're quite painful, right?).
-history of sexual abuse? None - fortunately.

-psych history?  I do have a small problem with anxiety.  I've had it for as long as I can remember.  It's transcended so many levels of my life from socially to academically.  I am hoping I don't have to add 'sexually' to that list.  I am currently seeing a counselor at the university I go to about it (since october, 2011).  I don't have a formal anxiety diagnosis, however and I'm not sure it's severe enough that a diagnosis would be of much help to me.  I have had some improvement in my issues with it since seeing the counselor (I go 1-2 times per month).  I find that talking about what I'm thinking and feeling helps (basically dumping out all my emotional problems which I cannot and probably should not do with anyone else in my life).  I also have a history of being bullied.  The bullying was especially bad starting when I was 10 years old up to when I was 13 years old.  I don't think this bullying is especially related but may play a role in my problems with anxiety.
Currently, my emotional status has gone to hell.  I've been having a lot of frequent fighting with my BF surrounding this sexual pain issue.  I realize the emotional toll it must have on him must be as excruciating as the pain I myself am going through.  I tell him I love him so much but sometimes I wonder if he really believes that.  Sometimes we pretend everything is ok but I feel an undercurrent of something being off-kilter between us.  Sometimes I get very upset with him when I feel that he is trivializing the pain I feel.  I try to communicate that it's not that easy for me to just have even full penetration.  I worry he feels I don't love him enough to try full penetration.  I feel horrible - words can not describe the sadness I feel when I tell him to stop or push him away.  He must feel so rejected by me.  It hurts me psychologically and emotionally to be pushing him away.  I'm sure most of you know all to well how much we want our intimate partners in that oh-so-special way that is sex.  I want to share a PVI with him so badly.  It hurts me from my core to know that I can't simply have sex together with him like a normal human being.  Hell, I can't have sex at all - period.  I am starting to develop a very sinister feeling of helplessness in the situation I am in right now.  I feel as though my future is just a thick fog - I'm starting to feel hopeless about things ever getting better.  I think this might be due to the fact though, that, because I have anxious tendencies, I tend to over think things too much and too quickly.  Since I've known about this for 3 years, I've let this issue fester mostly because I feel a real sense of hopelessness about this.  Also, because I have a real issue about expression of intimacy, affection and anything to do with sex which made going to the GP for the first time a very frightening experience (but it didn't actually turn out to be as bad as I thought - in fact, I feel much less inhibited to go again to investigate the urethra issue!).

-Ideas and attitudes towards sex: I was raised Catholic.  To be perfectly honest - I identify as Agnostic and have even held a vague sense of Agnosticism since I was 12 years old.  So, all that stuff about religion being a contributing factor in sexual pain, I'm skeptical of - at least in my personal case.  I think it's more of the way sex and intimacy was presented to me as a child growing up.  My parents relationship is incredibly lousy.  It has been ever since I can remember.  Without getting into details, I've always seen my mother act aloof to my father showing affection towards her.  I feel like, without even thinking too much about it, I grew up with the sense that affection & intimacy was something to be ashamed of.  As a result, my parents do not know that I have a boyfriend.  For a very long time, neither did any of my friends.  Until recently I have been telling friends about him.  In general though, I have a hard time with expressing affection especially in public (ie holding hands used to be a little tough for me; kissing in public can be sometimes uncomfortable but fortunately that is one of the things in my life I can actually tell myself to suck it up about - sexual pain? not so much).  This difficulty with affection is separate and was evident before I knew that I suffered from sexual pain.

Anyway - story of my life, eh?  I think this is all I have to say right now.  Input, questions, words of wisdom and kind words very much appreciated.  Thanks.

When I first had sex, I found it painful for the next few times, and it turned out to be a UTI I didn't know I had, so it would have been a possibility, but of you'be had it 6 years, it's unlikely that's the cause.

I think you need to ask you GP to refer you to a specialist. GPs just don't know enough about this sort of thing. The next step would be to have swabs taken to test for any bacterial infections etc. It is possible that it's a muscle reaction, but I'm not sure if that would be expected to cause rawness. In me, the red raw colour turned out to be an allergy, so look at shampoos and check for common ingredients, stop using fabric softeners and washing powder etc. The most important think is to see a specialist early, your GP will try lots of treatments, but you just risk that they will make it all worse.

I would go to a specialist and get off google. You can find symptoms that put you in a category of anything (HIV for example mimics the flu!). Unfortunately vulvodynia is hard to diagnose and most regular doctors dont know how to do it and if they do know how they dont know treatment. But it seems you've done a ton of reading about stuff you might have rather than getting to the bottom of your own problem. There are so many problems that contribute to painful sex vulvodynia is just one of many :/ but once I found my specialist he changed my life! It could be anxiety, muscle spasms, vulvodynia, endo, pelvic floor, a combination of all of these its important to know what is affecting you personally. I doubt you have a uretha prolapse- vulvodynia can affect your uretha too! If you dont have pain while peeing and its not difficult I wouldn't worry about your urinary tract.

Alright - good advice. I'm going to book another appointment to see if I can get another look down there and a referral. Despite no difficulties with urination, the urethra has me extremely concerned especially since penetration seems to make it even redder and causes pain in that area. But you're definitely right it could be ANYTHING. I know for sure urethras should not be red! I don't use fabric softener and I don't use soap down there. Hydocortisone yields no effect. I'm puzzled but you're totally right - enough google & more action.

Thanks.

I was hoping that didnt come out bitchy lol

Hi and welcome. I'm going to chime in now as I often do!

Dilators - you're rushing them!! It takes months for them to soften the muscles enough for the in and out movement not a few days, when your GP said "let them sit awhile" that's all you do. It takes a lot of perseverence to move up to larger sizes and the in and out movement is a big no while you're still tight and sore. So is sex for that matter, sorry!

The hydrocortisone cream won't work if the vestibule is red because of muscle spasm, the spasms stop fresh blood and nutrients getting to the skin to flush the inflammation out so it can't heal while they are present, the pain increases the spasm and the body senses a problem and throws yet more inflammation at it in an effort to heal it. If you are feeling it at 6 and 12 o'clock I'd say muscles are definitely in need of some help. Mine started at those spots and like you I obsessed about my urethra for a while but if like me you research carefully you'll have found pictures of a urethral prolapse and realised they aren't general redness of the area they are a small bulge only so that would be something any doctor could see, I really think you need to stop worrying about that because if your issue is a urethral prolapse why are you getting pain at 6 o'clock too? It doesn't fit does it?  

The next thing your GP may want to give you is a stronger steroid cream and if that happens ask for a referral to a vulval dermatologist first to get their opinion. I stupidly tried the stronger one and it took a layer of skin off my already excrutiating raw skin. You could also ask to see a Women's Health Physio so they can check your muscles and tell you if they are spasming. In the meantime cut out all potential irritants which likely won't make much difference, avoid sex for now so you don't make matters worse and very slowly, that's slowly, start using the dilators. Get yourself back on Google and look up diaphragmatic breathing if you don't already know how to do it and start practising. The breathing will help you progress with the dilators too.

It won't hurt to get swabs and a urine sample tested but don't be surprised or upset if they show nothing, it's just sensible to rule those things out. Anxiety is often associated with muscle clenching so you may be holding tension in your pelvic floor/ mucles around the pelvis for that reason which again is where the breathing should help. You still have lots of options and things to try but you have to give them time unfortunately.

@Sarah001: Yea that's my issue - I'm impatient. But this takes time. And you're right - I'm at the very beginning of this. I'm going to look into the breathing exercises. I've tried relaxation techniques for anxiety before but they don't do a heck of a lot for me but it may yield different results in this case. I'm going to attempt dilators again tonight but use them as prescribed - no motion. I'll try this for 2-3 days, see what happens and re-evaluate if I want to go to the doc again. I talked it over with my bf who just so happens is studying for his medical license and he's said similar things about don't rush it and he seems supportive of the process right now. Thank you for your post - really so helpful! Especially hearing about someone who is also obsessing about their urethra, haha! I'm not the only one!

@Alana3: No worries. You're totally right. I need to stop over thinking things and start trying stuff out. My issue is that I'm scared of failure but this is a big process. Failure is going to happen and I need to learn to deal with it.

Where are you from

Later - I should clarify - I never used soaps down there either, but was advised to stop using them at all - when you wash them off, the water can carry them round, and they work their way inside.

Hi, yes one of the problems with this disorder is that no one really knows for definite what we suffer with and many people have different symptoms. I have had diagnosis of vulval pain from many specialists and virtually everytime there is a different name. Currently I'm at provoked vulvadynia, but its also been referred to as vulval vestibulitis. Personally I think the problem is quite different if you suddenly out of the blue acquired the problem as apposed to always having it & I would like to hear more from people who have had this from birth.

I'm not clear if you are in pain all of the time or whether the pain is just when the area is touched. Unlike others here I think I've had this problem from birth, although it wasn't until I started trying to have regular sex that I realised there was a problem.  I generally have no pain in everyday life, its just when the area it touched.  I've had examinations lots of times & often drs can't see anything wrong.  To me, the problem is crystal clear, I can see 2 small red oval patches at 4 & 7 o'clock on my vulva, so this seems similar to you. The patches vary in size but generally look like raw skin that just wont heal.  Having sex just inflames the area, hurts a lot and makes me swollen ( I often bleed from small cuts).  Over the years & after having 2 babies vaginally, I hoped it would improve but it really is an on going battle that I have just accepted.  My specialist has told me the only option I have left is surgery to remove the skin that's causing the problems but I just can't take the chance that it might make matters worse & leave me in constant pain. So I put up with it but ever so often have a good old cry at the injustice of having this for 37 years.

Interestingly, the more regularly I have sex the less painful things are (although still painful) and for no reason sometimes its much worse or much better & I get a taste of what normality must be like. I cannot find a reason for why it gets better & worse marginally.  Although wearing cotton underwear & not using fragranced things is sensible, for me despite this its never really made a huge difference.  I now just use Aveeno moisturiser to keep the area nice in the hope that the skins more strong and protected.  I also prefer more greasy lubricants to water based as they seem to add more of a barrier over the skin.

I hope this helps you feel not so alone and you get some help T xx