Vulvar Vestibulitis

So I'm going a little out of order here and will get back to where I am with my IC treatment as well as PFD, etc. but I had my second treatment Tuesday for my Vulvar Vestibulitis so I felt like it was a good time to talk about it.  And sorry in advance because this is going to be a reaaaallly long post - but it's my entire treatment for Vulvar Vestibulitis.

This is actually an important post for me, because it's the reason I started blogging about my experiences in the first place.  Not BECAUSE of the VV or the injections, but because when I found out I had to have injections down there...as you'll read - I freaked!  So I did what I always do - looked anywhere and everywhere online to find something about these injections.  That's when I came upon Tamra's blog (Living with Vulvar Vestibulitis - linked on the right).  Although her treatment was different then mine, I felt soooo much better reading about a personal experience of someone who had actually had shots in their vagina! I never knew that happened and she had done it and documented it and shared it.  I couldn't believe how much anxiety it relieved just hearing her story and that - even if it hurt - it was ok...just another treatment.  And it wasn't some medical explanation...it was a real person, telling a real experience.  That made me think - even if our stories aren't the same...I should be sharing mine, so that one person can read what I go through and know they aren't alone and see what I've tried.  Something that works for me, may not work for someone else and vice-versa...but it gave me a sense of comfort, so that's why I started - and I have Tamra  to thank for that :)

So now, back to my story - for those of you who don't know -  we are talking about all sorts of pain in the "va jay jay" (my dad can't handle me running around saying "vagina" so this he can handle, haha ).  I have generalized vulvodynia as well as vulvar vestibulitis. 

Vulvodynia is chronic pain in the vulvar area.  For some people it's very localized, and others its just everywhere.  We have to be careful with soaps and the acid in our urine and exercise and wearing pants...just about everything.  This all came to light immediately following my last surgery in October 2009 (although the symptoms - I just didn't know they were symptoms - I had for years before).  I was getting a lot of pain and discomfort down there.  I started to get periodic bouts of extreme sharp pain (more on my right side - which may or may not be part of this), and started to  become much more aware of burning and pain when I wore tighter pants, crossed  my legs, sat a lot, having underwear rub against me, wiping after the bathroom - anything and everything was just so painful.  And sex - although my serious boyfriend of 3 years and I are GREAT together (not bragging, just lucky :) ) - started to really hurt more than normal (I say "more than normal because I always thought I guess this is how it is - it just hurts! until my mom - who I'm obviously very close with since I had this conversation with her - told me its not supposed to hurt!)  Upon penetration it always hurts and afterwards I feel like he was wearing a sandpaper condom!  So, in any case it got worse and worse until I brought it up with one of my Urologists at UPenn as well as my uro at Hershey Med - both were convinced I had vulvodynia - and both offering up "the best of the best" for me to see to have it treated.

Well I looove my gyno - she's so caring and just awesome and so I thought, you know what...I'd just like to see her first to see if she even heard of it!  So I set up my appointment (which was about 3 months out of course) and waited.  In the meantime, I went without underwear when I could and had lidocaine ointment left over from a really bad hemherroid so I used that down there which really helped.  So the moment of truth came and she took one look and said I was horribly red and irritated.  I told her it basically took a muscle relaxer and vicodin in order for me to sleep after sex.  I'm one of the lucky ones who can still enjoy sex - as a lot of women have just given up as its too painful (and that makes me very sad for them and their husbands, so I really hope my talking about this can help at least someone with some options - no one should have to live without intimacy with their partner)....but this was getting out of control fast.  I told my gyno what my doctors thought and she said, although she was sureI had vulvodynia all over because of the drastic redness and swelling among other symptoms  (mine's worse on the right side), she wanted to do the "qtip test" for something called Vulvar Vestibulitis.

For those of you who don't know specifically about Vulvar Vestibulitis - I found out really fast in that appointment, so I'll tell you that it's more localized to the entrance to the vagina...inflammation of the glands right inside the vaginal opening. So my doctor performed something called the "qtip test" where she pressed on different areas with a qtip and asked for my reaction.  Well just about everywhere she touched with that darn thing sent me through the roof - It just burned sooo bad (hence the sandpaper feeling!!!!).  So her options were treatment with Valium and Elavil (Elavil I tried and made me too out of it...like I'm not enough already!  And I was already on Valium which was good).  She also started me on a steroidal ointment called Clobetasol Propionate for the specific opening and other areas that were irritated, starting off with more applications and slowing down to once a day if needed.  She also wanted to start me on a series of injections - YES - whatever you're thinking - that's where the needle goes!  The way she did it was to use lidocaine and Kenalogg (a steroid) and do a set of injections, then wait 6 weeks and do another set and then see how I feel and possibly do a third.

So down to my specific experience with the treatment. Needless to say I was a nervous wreck because who wants needles down THERE when they are in constant pain - let alone, um....EVER!! And let me tell you, I've been through over 5 surgeries and kidney stones and I think I was most scared of this, haha. Luckily, I have my wonderful b/f who went with me as I wasn't sure how driving home would be and I took some of my valium and a pain pill ahead of time - so he was my chauffer.  Before she started, she actually showed him the areas and he could see the inflamed spots that were the worst - he actually commented they were on the side that shoots me through the roof in physical therapy, which I'll get into more in my PFD posts. But it's definitely something to think about - how all this stuff is related.

So I don't want to say it wasn't so bad - because the first few shots hurt but weren't horrible...but the last two (in my most sensitive areas) were really bad.  I'll leave it at that because it was a lot of pain.  My boyfriend held my head (as I was affraid I'd break his hand :) ) and he said I shook horribly, espeically on those last two and moaned a little, but she kept asking if I was ok throughout it. After the injections were over she rubbed in the areas externally and internally very quickly. All together it was about 30 seconds and *poof* it's done. Not like a kidney stone that goes on for hours...its done. I bled for a little while, and was shakey and just had to go through a little emotional period and stuck a pad on and was out of there. I did feel a little like I got punched down there the first 2 days after or so- but that's how I usually feel after I get a shot into muscle.  It was however, incredibly bruised, which I think is normal considering all the nerve endings.  A few days after I was already feeling less burning and at my PT visit a week later we noticed my pelvic floor muslces had calmed down a bit and I still didn't have a lot of sensation on the right side (we think that was the lidocaine).

So that was the first time.  My second round was Tuesday and needless to say I was SOOOO nervous before - verge of freaking because I kept thinking about those last 2 shots. I should mention, on top of having these done, in the past 2 weeks I've had what they think was a kidney infection, sinus infection and the flu all at once so I wasn't feeling great as it was, but she said if I was up for it she would still do it - and I just wanted to get it over with! So I did the same prep as last time - Valium and pain pill and I also did feel a little confident that I was feeling better and told the doctor when she came in. She did the qtip test again just to map out the problem area and noticed dramatic improvement and my painful area had really shrunk. She didn't even need to use the full dose of the injection! There were still 2 areas that were really painful (more of an intense burning feeling) when she touched - which were those on the right and left that were bad the first time - but the whole experience was better than the first. It was still pretty painful but not nearly as bad as the first time at all!

So far the recovery is better than last time too - not quite as sore and after having my boyfriend inspect (really how romantic is that - spread eagle with him checking out the bruising...hot, I know haha) he said that the bruising was definitely there but not as wide spread as before, it kind of yellowed up my vulvar lips before, but not this time, just that immediate area.

So as of now, she thinks that will be it and I can continue the clobestal ointment in the broader area if need be. I am hoping I don't have to go back for number 3 but she said it was up to me and how I feel. I guess I should note that sex hasn't been as regular lately between me being sick, my boyfriend being sick and each of us traveling for work, so once I get back to more regular sex I think that will determine how this thing is going to pan out...hopefully it's less painful!

So that's it - that's my personal experience with the injections and although it sounds painful and scary (sorry I didn't want to hold back!!)- it has been incredibly worth it!  I have some friends who have had them done with natural supplements such as Traumeel as well as allergy meds such as chromolyn and been helpful. I've also known folks who have had weekly injections. I have other friends who have gone more of the naturopathic route with coconut oil and traumeel creams as well as seeing naturopaths for full body treatments and have been feeling better.  This is just my personal experience and I know folks it hasn't worked for...I just wanted to share what I went through.

With Vulvodynia and Vulvar Vestibulitis it's really a lifestyle change; soaps, tight clothes, creams, lotions, pads, underwear, medications, supplements, vitamins, foods, sex - all of this stuff can really effect us.  I just hope this continues to help and keep getting better.  For anyone going through this or considering it, feel free to email me with any questions :)