When it rains, it pours.....and I think I'm drowning.

So, it looks like the name of my blog will soon be changed to just Chronic Pain...maybe  "Guess the disease or condition???".  So many of us go through this when trying to be diagnosed with whatever it is we have...which may be more than one thing.  Currently, I've felt like I've been getting worse and worse and every time there's a glimpse of feeling better - something else happens.  I've been really sick since January...first was a cold, that turned into a sinus infection so went on Augmentin which doesn't like my bladder but I stuck through it.  Things got a little better but stayed exhausted and sinuses hurt and the headaches were bad.  Then my WBC's were through the roof and I had every indiciation of a uti - probably kidney infection - went on Levaquin...didn't get better.  Then had TONS to do at work and just wore myself down...so I knew when the last proposal was in I needed to go back to the doctor...extremem flank pain, my urethra HATED me...pelvic pain, blood in the urine, fevers the works!  So she said the WBC's were extremely high - put me on Macrobid & tramadol and told me to call back for the culture.  When I called back they said mixed flora - so not really a high indicator of infection but I was in so much pain it was work to get out of bed and EVERYTHING hurt sooo bad...especially that darn right kidney!

When I was at my urologist I broke down - which I don't usually do - but the pain and exhaustion was consuming me...even with the pain meds I was on.  This is when she called the director of the pain clinic and he recommended Tramadol and a visit to see him soon.  So I finally gave in and scheduled a pain management appointment.  My PCP is against them as she gives me everything I could need...but they don't prescribe medicine, just recommend it and do trigger point therapy etc.  Since I have so many problems with Ulcers, my Liver, nausea and  IC, etc.  it's going to take someone who knows what they're talking about and since he's the Director and has been on TV a lot (not that that means anything) I'm feeling good about it....and then he'll just recommend things to my PCP so her and I can manage it.  I'm in soooo much pain but I'm very scared about becoming tolerant at my age (26) too soon.  I was born tolerant and never responded to things like Tylenol 3 or 1 regular Vicodin.  I just need something to have down the road...and don't want it to be too devastating when i get off meds when/if *fingers crossed* I get pregnant.  Anywho, my urologists exact words to the pain specialist was "she's a really good girl and i've been seeing her a while and well, she's just spiraling down hill really fast and I hate to see her like this...this is bigger than IC - it's everywhere".  Greeeattt.

Anyway, the tramadol was awesome for the all over pain.  But not for my really bad pelvic and lower back pain.  So anyway,  my "sinus infection" got way worse and i was living with migraines everyday....excruciating body pain...insomnia...and crazy fatigue.  It's affecting life, my job, my ability to work on my house, my family, my boyfriend, my sanity - everything!  So anyways went back and was treated again for a sinus infection with Augmentin and once I didn't get better I went back...my nasal cavities were swollen and bloody and the headaches excrutiating.  She gave me a Kenalog shot on the spot and is 90% sure I have fibromyalgia as every trigger point sent me threw the roof.  So, she set up a series of every virus and autoimmune disease and lyme, etc. she could think of.  Meanwhile, I threw my hip out, my great aunt passed away - and I decided to be a genious and get a shiatsu massage chair.  IT felt soooo good but the next day (around 4 am) I woke up at 4 am and was in sooo much pain.  I swore if I looked in the mirror my entire back would be bruised.  Only part of it was but it was so bad I had to take my shirts off and couldn't even have my hair touch my back.  so it was working from home half naked all day and I could finally wear clothes 2 days later.  I couldn't get the blood work right away because of the steroid shot, but I got it last Thursday so I had to wait out the weekend.  Needless to say I had a 6 hour panic attack Sunday night.  Not horrendous but felt like I was crawling out of my skin, chest was tight, uncomfortable and couldn't calm down.  After about 3-4 hours I realized what was going on and took some valium and melatonin to sleep (I have been sleeping only 2-4 hours a night for almost 3 weeks now until i started the melatonin).  Still on and off, but anyways.

So it was really strange....my doctor's nurse called and said the only thing that showed up in my blood work was chronic fatigue.  But there isn't a test for chronic fatigue and I tried to ask her a bunch of questions but she didn't want to talk about it until I meet with the doc. to explain it next Tuesday grrrrrrrr.  So my guess is I do have Fibromyalgia and potentially Chronic Fatigue Syndrome...but at least I have answers.  I'm slightly discouraged as I've tried Gabapentin and Lyrica and both didn't work.  She started me on Celexa so I'm hoping it works a little....the amitryptiline made me feel like I was drunk until 1 pm!!!  In the meantime I haven't been using the Clobesatol ointment on my vulva so that spiked up again grrr...but my friend Alex has been very helpful at keeping me sane.  I can't wait til I figure out what this is so I can make a case study on her site (listed on the right - Vulvar Vestibulitis Relief).

So, anyway - I picked up all my radiology work to take to the pain specialist friday and found out i have "multiple stones" in my left kidney - here I thought I passed the only one i had!!!!! So they're deep in there but makes me nervous that there's more. 

I guess the moral is it just feels like one thing after another and I'm sooooo exhausted all the time...then I get really hot and feel like I'm going to pass out even when I do the smallest things!!!  I'm glad I'll have a "diagnosis" and can work on what to do from there...but I'm not looking forward to this pain...it's a scary thing, but it could always be worse.  I'm blessed to still have what I have and the support that I do - I feel soooo deeply for those who are going through this without support...I can't imagine - bless you.

Well i'll keep you posted as to how it goes..... and wish you all a pain free and peacefull night of sleep tonight :)

Vaginismus on Dr. Oz!

So I just wanted to put this out there to folks who have any type of Pelvic Floor Dysfunction problem - even if it isn't Vulvodynia or Vulvar Vestibulitis or Vaginismus (as Dr. Oz is referring to as "Vaginal Panic Attacks" - and I don't really know why...but anyway).

I saw this episode the other day and they finally got it up on the site and I got soooooo excited because it's the EXACT same type of electronic biofeedback device I just started using in Physical Therapy!  My first time through PT (which I'll explain a little later when I talk about PFD) she used the external electrodes that you see Dr. Oz put on the woman's arm.  She placed one right next to my vaginal opening and one on my abdomen as a control.  This time around, since I've been diagnosed with VV as well, I got the "little penis" as I like to call it - which is the little white insertable electrode you can see in this Dr. Oz clip.  Then the program Dr. Oz shows is the EXACT one I use too, so I just got really excited!

I do the biofeedback both laying and standing so I (and my PT) can see the difference.  The internal probe has been a much better tool as it gets right next to the muscles internally that spasm....although when I hold for a long time I start to get incredible pain against my coccyx bone (feel like the muscles are being pulled right off!) but afterwards it hurts internally - so its sooo weird how pain can trigger in different areas.

Another benefit of the internal probe is that you can also hook it up to a little machine (kind of looks like my Tens unit, but more like an electric heat control box - the ones with a knob you turn up for more heat and down for less you know?)  Anywho, she hooks it up to this and I can either use it for frequency or pain...it then acts similar to my tens unit sending electronic impulses inside to help calm the muscles.  I personally know that I am constantly contracting my muscles down there - especially on my right side, so having started biofeedback has made me think much more often throughout the day that I need to calm down and relax and take a few deep breaths and stretch.

The second video I found yesterday was Melody Thomas Scott (who plays Nikki Newman on the soap opera The Young and the Restless - my mom was obsessed so I learned to love it :) )  - well as a lot of you with IC know, she has IC and has been in remission for a while and is a huge advocate - I love having celebrity advocates for these diseases as for some reason it seems to make it "Real" to folks who don't understand it.  I don't know how many celebrities would come out and say "Hey I have a problem with my vagina and it hurts when I have sex!!!", but hey...the attention really helps the cause.  So this video talked a little about IC and her experience with it - noting that it is incredibly painful and serious.  I can't find it today but will upload it as soon as I can!

Anyway, I just always get so excited when I see these things on TV, to bring attention to what we go through, so here is the Dr. Oz Link:

http://www.doctoroz.com/videos/vaginal-panic-attacks

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 :)