“Oh my God!” She said when I told her what I’ve been going through, “I could NEVER deal with that!” I swallow and don’t know how to respond because what I want to say is this –
You COULD in fact go through it if you WERE in fact going through it.
You see, I don’t have a choice. Chronic conditions don’t show up at your door and say, “Hey hey hey… do you feel like experiencing chronic pain for a year straight? No? Let’s make it a year and two months then shall we?”
Hello, my name is Lisa and I have a condition called Vestibulitis / vulvodynia.
WHAT IN THE WORLD IS THAT?!? You ask.
Well, let me tell you my story.
It all started around the 29th of June 2013.
It was a Saturday and I awoke to what I can only describe as burning and aching in my urethra (Yeah, you might have guessed already but we’re going to talk about private parts in this blog, so if you’re “sensitive” run away now). At some point in the morning, I thought that I had a “UTI” due to the feelings that I was experiencing. So, after taking a test or two, I went to an urgent care place where they tested me assuming that I had a mild UTI…
They gave me medication (Macrobid) and sent me home… I took it, and for a few days I felt fine… then the NEXT Saturday, my pain returned, so I went back in and this time they told me that there was no bacteria in my urine but they gave me another round of macrobid assuming that maybe what was left was just barely irritating me. I took it again and the same thing happened. Fine for a few days, but then in pain AGAIN. Hmmm…
At this point, I was getting a little desperate because the pain was starting to become steadily worse. Or maybe it just seemed worse because it didn’t go away. Either which way, I decided to go to a different doctor.
There, he examined me and stated that he saw nothing wrong so he put me on something for another condition that I had at the time, and metronidazole gel assuming that maybe some bacteria was out of whack and that this would help.
Funnily enough, the SAME thing happened. Took it, fine for a few days, and then again, it came back.
This was a full MONTH and a little later and I was in the middle of drama camp at a church (I volunteer and teach children) Mind you, at this point I was in pain AND I started having issues with my urine again.
I went to see a DIFFERENT doctor.
This doctor, (though kind) had no idea what was wrong with me. She didn’t have a clue… and as a result, she put me on something (which I don’t remember) and sent me packing…
Same type of thing, okay for a few days, burning, terrible, inflamed pain again.
At this point, my family took our annual trip to Vegas, so I sort of did the grin and bear it thing while we were there, and waited til we came back to see that same doctor. She was no help for me and this time she charged me 100$ for talking to her for fifteen minutes.
Finally, I went to see a urology specialist (remember, this is now SEPTEMBER… so three months that I’ve been in pain?) the specialist examined me and told me that TODAY (wut?) I had an infection. She believed that I had something called “urethritis” which honestly? Doesn’t sound like they know a whole heap about. All that she could tell me was that somehow bacteria might have gotten backed up into my system and that as a result, it’s inflamed my urethra.
Okeeday. She put me on Doxycyclen and I puked that everywhere so they put me on something else.
A few things…
I have only had sex with my husband maybe 2ce in over a year in which it was not terribly painful to me.
At this point, not only does my urethra hurt, sometimes my insides hurt too and to a point where I feel like I’m being kicked in the gut repeatedly. There were two or three times where I was a ball on the bed, couch or floor.
Right before this, they had put me on cephlex and I contracted a yeast infection due to the fact that no one told me that I needed to be taking probiotics after every time I took a pill.
The last time that I went to see this doctor was in late October I think… and at this point she took my blood (something that I absolutely DREAD and did sobbing my eyes out) and did a cat scan of my body in which they blatantly told me that they saw nothing wrong with my tubing, kidneys OR my urethra. There was apparently nothing wrong with me…
This was the day that I FIRST discovered the “other” pain… When this doctor “examined” me for the last time her finger going in felt like a sharp knife splitting my skin in two. I was knocked back on the table and all I could do was say “that hurts” because for all I knew, she just hit me wrong or something… This pain lingered the rest of the day. It was crazy terrible and different from any other pain I’ve ever felt but seemingly, it went away.
During a craftfaire which took place on November 2nd, I experienced some of the WORST abdominal and urethral pain ever and I called an “on call” doctor who prescribed me Cipro (are you paying attention to how many drugs I’ve been on yet)? I felt better and had some relief for a short while.
However, I continued to have issues, so I came back to this place and saw ANOTHER doctor. This one was also female and I have to give it to her, she tried her HARDEST to do everything right for me. She was sweet (albeit, she had a moment with me later on that pissed me off, but I blame that more on my ragged state), and worked hard to try and discover what was wrong. After ANOTHER urine sample (I did like nine during this whole thing) it was discovered that I had “Group B. Strep” … something that apparently 25-40% of all women carry (Without knowing it) and is a bacteria like strep but only lives in your lady parts. It can overgrow (like any bacteria) and apparently mine had and was in my urine (great)… sooooo I went on cephlex again.
For about two months (maybe three) I ignored the “pain” and just took an azo when I was desperate (I can NOT tell you how many of those I’ve taken, but I was wise about it and only took them when necessary).
Christmas happened, New Years happened and OCCASIONALLY I got a day where the pain was near to nothing.
Then, it started turning into a “different” kind of pain. A pain similar to that pain that happened when that doctor examined me but less painful.
The pain was in the lower parts of my “entrance” and as you can guess, is not fun.
I finally coughed up a ton of cash to go to a doctor who’s been a professional for over thirty years. She is older, dry and humorless but she seemed to know exactly what she was talking about.
She talked to me for twenty minutes and said, “You have vestibulitis” then laid me on the table, did a test, asked “does it hurt?” I said, “Yes.” she nodded and said, “Vestibulitis, stop going to morons who are putting you on antibiotics”
She told me that I had destroyed my system (which has created different problems) from being on so many meds… and funnily enough, some studies suggest that being on so many meds might have actually CAUSED the damn issue…
Are you ready for this?
Chronic vulvular pain in the outer area, lips, or around the clitoris that can burn, itch, ache, or just be aggressively unhappy. There is no known cause, and there is no known “Cure”… What I was basically told was that it was “auto immune” and that essentially it would either “go away” or it “wouldn’t…” She seemed confident that mine would “go away” because I had a “mild case” of it. BUAHAHAHHA…
She told me six months… and gave me lidocaine jelly for pain and sex…. which has worked occasionally.
Well, August marks six months and I’m still not pain free. I will admit that there are times when this seems to go into remission but there are certain steps that I’m about to take in order to get rid of this for good which will be difficult.
What it’s like to live with Vestibulitis…
Depending on how bad of a day it is it can be almost debilitating, but you just sort of “pretend” that it’s not going on… like the constant burning, itching, or aching in your vagina is like… “totally okay dude”
I am essentially “sexless”… for lack of a better way of putting it. I don’t have sex much at all, and mostly? I Don’t want to. It hurts and as you might have guessed, yes, this has ruined marriages for other people and I’m fearful that it could ruin mine.
It alters my perception of the world and what I can and can not do… People don’t understand what it’s like to be in CHRONIC pain… Think of a very annoying headache that you had once… now imagine that that headache is always there… like 90 percent of the time… or even 75% of the time if you’re lucky… now imagine it’s on top of your skin AND underneath it… now imagine that it’s in your genitals…
It feels (At times) like you’re being violated. It does… how can it not? You’re dealing with a VERY private area of your body and there are days that it feels like someone is pouring mild acid on it.
It causes depression… and why wouldn’t it? Look at what we’re talking about, here…
What you’re supposed to do to help cure it –
REMAIN STRESS FREE!
LOL… Yeah… because being in pain all the time in your privates ISN’T at ALL stressful.
Stay nude… YAY! Naked party twenty four seven… well… it’s not really a party… cause like you can’t have sex or anything… mostly you’re just naked… and in pain…
wear cotton underwear… check.
Apply lidocaine. Yup… when I can
No soap down there… I’ve basically been “soap free” for a year. Lots and lots of water.
Clean well after urinating and bowel movements … check.
This list really goes on for a while…
What I can say is that this is difficult… It’s so difficult that honestly, there have been times when I’ve thought of “quitting…” For those of you who don’t know, I was a virgin until I was married. I wasn’t a saint, but I saved myself. Now, I can’t have sex at all… I often wonder what in the world I Did to deserve this. To deserve the situation that I’m in…
I don’t want to live this way. It impedes a lot of what I want to do with my life in many ways.
I’ve tried to focus my life on other things… but I’ll admit there are days when I’m just… horribly depressed, stressed, and done with the whole world. It doesn’t help that right now, life IS stressful.
What can YOU do?
Be patient with me. Seriously. If I said that I’m going to do something? I’ll probably do it, it just might take some time. I’m still getting used to this “way of living”.
Pray for me (if you’re into that, I know I am)
Shoot me a message from time to time… my current situation at home leaves me VERY lonely. I have no car, and my money is EXTREMELY tight right now.
Two of my only friends are either moving away or considering it. I’m not sure what I’ll do after that.
I cry a lot. I cry so much sometimes that I’m not sure if I can cry anymore at all.
But mostly, I’m angry… then I self sedate (mentally, not with drugs or anything) then I’m just vapor and depressed. This is really hard.
That’s all I really have to say…