Servicing the Chassis

2010-08-02T10:23:00.000-04:00

It's been awhile since I've posted. I didn't want to complain online anymore. There is plenty of that here.

Things have been okay, better, actually. Not like, "I'm all better" better, but better than they have been.

I thought that maybe one of my problems was birth control pills. I noticed a few years ago when I stopped taking them that the pain got a little better. But I also got pregnant. So, there was that. But the months between the time I stopped taking the pill and the time I got pregnant weren't so bad. Pregnancy was bad. Pregnancy hurt. VVDally speaking, that is.

So, off birth control and in with an IUD. The Paragard type. Not the Mirena one with the hormones. I was trying to drop the hormones.

First of all, getting an IUD put in effing hurts. Terrible terrible pinching cramping pain that lasts for a month. The doctor gave me a heads up, but she wasn't clear enough. It was awful. Worse than menstrual cramping, sort of like diarrhea but no pooping.
A lot of women have an IUD put in right after they give birth, so the pain and discomfort and bleeding and all that just sort of blends into the post-partum pain and discomfort and bleeding.
The pain eventually stopped and things got better.
I read somewhere that taking a Zinc supplement worked to counteract the presence of Copper in your body so I did that. I don't know if it truly helped or not.
Another thing that I found out after I had the IUD inserted is that the wires aren't 100% Copper, rather they are copper-coated nickle. That's a problem. I have a huge nickle sensitivity. I'm guessing that might be the reason I was so uncomfortable for awhile. The flare I had right after insertion was awful, and different than any I've ever had before.
I also got a bacterial infection after insertion. That's very common. Very very common. So common that I left the gyn with a prescription for a anti-bacterial in case it happened.
Have you ever had a bacteria infection down there? OMGross. It smells like fish and feels like you are rotting from the inside out.
I smelled like a city bus.
It was horrifyingly embarrassing.

There isn't a lot of information out there about all this stuff. That's sort of the reason for this post. It was scary to have a strange flare and an infection and all that pain. Not to mention the bleeding. I could hardly find anything regarding IUDs on American websites.
There is a strange insurance thing where lots of insurance companies won't pay for the device and tout it as dangerous and risky and terrible. I blame the Drug Companies. Of course they don't want you to stop buying birth control pills for ten years. How will they make all their dollars off of you trying not to get a baby all up in your guts? If you look to UK and Australian (read: other English-speaking) websites, you'll see that all sorts of ladies use IUDs over there with no problem at all. They are super popular overseas. You know, in places that aren't controlled by Pharmaceutical Giants?
An aside, I got mine super cheap ($75) from Canada and it was shipped to me directly from the UK.

Everything is back to normal, and except for slightly longer and slightly heavier periods (especially after being on the pill, which shortens and lightens them from your normal length and flow) nothing is uncomfortable or different or infected.

I've had fewer flares lately, for sure. But when they come they are just as bad. I always have a flare before my period starts, and then it gets worse because tampons and pads are so irritating. I used the Instead Menstrual Cups before, because even though it can hurt to put them in, there were no bleaches or dyes or glues that caused irritation once it was in place. I didn't want to keep using them with the IUD, I was afraid that the suction would pull it right out. The internet was full of Diva Cup and Instead Cup IUD removals.
No thanks. I want this thing to stay put, because I can't imagine it's going to feel good coming out. It's good for 10 years, by the way. That's pretty damned blissful.

More later on how I'm coping with the loss of my beloved Cups and a new and equally disgusting vagina issue I'm having (most likely as a result of going off birth control). I can't win, I swear to God.

2010-01-04T14:58:00.001-05:00

Holy crap I don't feel good. I have this chest congestion and this sinus thing and my head won't stop swimming and my ears won't stop ringing. It's been like this for nearly a week.

But guess what feels awesome?

My vagina.

I know, right!?

I've been on a steady diet of tea and Mucinex, and my entire body, save for my respiratory system feels golden.
I've read that Mucinex can work wonders for Fibromyalgia symptoms, and I've been pretty convinced that half of my vagina problems might be a horrid, horrid Fibromyalgia symptom.

So, I'm going to use Mucinex as a dietary supplement from now until eternity. I'll keep you posted.

But ladies, listen. I have a really hard time with my period because tampons are murder and pads are torture. I had no problem with either this time around. I'm on the last day, and I couldn't feel more comfortable. Usually by now it feels like someone has removed my top two layers of skin down there and replaced it with table salt. Granted, I changed my products (to Kotex) a few months ago because I read somewhere that Tampax and Playtex were just as bad as Always for anyone with a sensitivity. But I can't tell you how amazed I am that I'm not in tears right now. This is incredible.

I hope that one of you might find some comfort like I did.

The new face of VVD:

I really don't like to think about that guy all up in my guts.

2009-11-06T10:29:00.000-05:00

(this is a repost from my personal blog, which I'd be happy to share with anyone who asks, but I'm not going to link to it here. I'm just not there yet. And I don't know if I've ever outted him here, but Jake is my 3.5 year old son.)

So, there is a Cancer Support group next week at the Starbucks on 10th and Chestnut. It's for people ages 18-45 who are currently undergoing cancer treatment or have a history of any type of cancer diagnosis.

Starbucks is such a douche.

What would I say? How do those things work? Is the coffee free? Is the cafe area closed for privacy? Is it like AA?

"Hi my name is Lora and I was told at age 27 that I have cervical cancer but no one would treat me because if they treated me properly I'd never be able to give birth even though I've never had a desire to be a mom so they just monitored it and patted me on the shoulder and said 'everything looks the same as it did so we are just going to hang on and see if you change your mind about being a mommy' because our healthcare system is run by Conservatives who find more worth in a sick woman who can risk her own life by pumping out babies4jesus than they do in a well one who isn't fertile anymore.
Put your hand down please. Of course I saw more than one doctor. I'm not retarded.
So they just monitored it and periodically cut out the nasty chunks at these in-office procedures that would leave me bleeding and cramping for weeks and then when they finally decided to properly treat me I accidentally got ~~drunk~~ pregnant the week before so they let it go for two more years through the pregnancy and when they lost my test results in the shuffle of my doctor leaving and the practice getting a new office space and -
Put Your Hand Down, Please. My doctors were at Pennsy. You know, the best effing GYN hospital in like the free world? Yeah, that one.-
and so they let it go and it got so bad that someone had the sense to give me a proper gouging and even though it didn't magically disappear it seems that now, two years after the Big Real Surgery I might be all better."

breathe.

"Yes I have cancer in my vagina, but stop looking at me like you think I got it from a virus. I don't look at you funny when you talk about where your cancer is. It doesn't always have to come from a virus you know. It's not fucking sympathetic when I say 'I have cervical cancer' and you say 'oh, my sister had that too, the one with the warts and stuff, right? She was so embarrassed.'. Wrong. But so what if it was anyway? Icky stuff can happen to your crotch when you get laid. Big deal. It can happen to anyone, I'm just lucky it didn't happen to me. And you are so. fucking. fat. from the crap you shove in your mouth every ten minutes because it's the only way you can deal with the fact that your mommy never hugged you enough when the other kids called you out on being a geek. Stop judging people for repercussions of shoving something in their crotch. At least they can hide their scabby genitals. You can't hide your level of disgusting gluttonous gelatinous self hatingness self indulgent-ed-ness...
Moving on.
Cervical cancer turns you into a fucking pariah. Herpes gets more respect than cervical cancer. Sometimes I wish I had herpes. It's more normal and less stigmatized.
I'm so tired of people.

"And breast cancer campaigns.
I'm so tired of breast cancer campaigns.
You have no idea how tired of breast cancer campaigns I am.
Like society is doing us girls a favor that it finally recognizes that we can actually be physically sick and not just mentally hysterical.
Girls score a point!
Girls 1
Boys 18098
Cute, though, that we can talk about tits, finally.

"Breasts breasts breasts breasts breast breasts breasts. Pink pink ribbons ribbons donations pink fuck.
"Save the ta-tas"
"Fight like a girl"
"Save second base"
"Real men wear pink"
I could puke.

"When can we finally talk about vaginas? And cervixes and uteruseses. Maybe when we can start acknowledging vaginas people will finally start getting treated fairly and completely and with respect.
Six years of maintenence is five years too many.

breathe.

"So here I am, maybe hopefully fingers crossed that I'm at the end of all this and you know what?
It's scary to be done.
Getting cancer cut out of you removes a lot more than scabby lumps of cancer.

"If I don't have cancer, what do I have?
If I'm not a cancer patient, does that make me a cancer survivor?
Do I have to be?
Can't I just forget about it altogether?
Pretend like I'm just me, and always was and always will be, and that I didn't just go through that?
If I don't have doctor's appointments six times a year, who will make sure I'm still okay?
Where do I channel the anxiety? The hope?

"Without the cancer to concentrate on, I notice the arthritis more. What used to be a dull and constant ache now meddles in my daily life. 'I'm still here', it knocks. 'I will not be ignored", it whispers.
'Fuck you', I say. 'You aren't the boss of me'.
'What about me?' screams the migraines. 'You didn't think I was gone for good, did you? You blamed me on the stress of your rotting lady parts for the past few years, but I have another cause. I've been here longer than the cancer. Remember the scans and the x-rays and the poking around the doctors did when you were in kindergarten? I've been here for a long long time. Let me remind you of how your grandmother died of a brain tumor 25 some years ago.'
'Fuck you too', I say. I've been dealing with you for 30 years and I've decided to seek some professional advice and professional advice has come a long way since 1980".

"And me?', asks the rest of the world.
'You I can deal with, in small doses', I say as I step up my work ethic a few notches. 'I've been neglecting you a bit while I hid out in myself for awhile but I'm back'.

"And me?', says Jake.
"I don't know what the hell to do with you, so let's for funsies just run each other into the ground for the time being. It's really nice to know that I'm healthy enough to watch you grow up."

breathe.

new boyfriend

2009-09-18T19:37:00.001-04:00

I was beginning to think that maybe I had an abnormally low hanging vagina or something.
I don't.
Think so.

I don't think so.

It's pretty high and tight. Ish.

The irritation I would get from wearing pants would be unbearable at times. It's not like I had camel toe or anything, it's just that any sort of pressure felt so horrible. I've tried everything, and almost relegated myself to a lifetime of skirts.

Because that was the best advice my doctor could come up with:
Wear skirts. Don't call me, I'll call you if there are any medical breakthroughs in the field. Good luck with all... this.

Enter new pants. The Gap makes these Boyfriend fit khakis that may have just saved my life. They are cute, nice enough for work, and feel as good as a cool breeze on a hot crotch.

I'm writing a letter to ask if they will be the official pants of mysteriously sore pussies everywhere as soon as I come up with a way to talk about dysfunctional vaginas that sounds like I'm not a crazy person asking for free pants for all of us. $50 is kind of steep, but worth every penny.

I'm going to see if I can get us a deal.

since the nation is abuzz with health care talks, I think I'll join in

2009-08-12T13:54:00.001-04:00

Whenever I think of the phrase "women's right to choose" I think of abortion.

Maybe sometimes I think of birth control. We've pretty much got that one down, except for a few insurance providers who don't cover it. To me, that sounds judgmental and repressive, especially in cases where people are using the birth control pill to control for things like painful cramping and excessive bleeding. Sometimes a lady needs to adjust her hormone levels for reasons other than getting some carefree booty.

Six months ago I was talking with my gyno-oncologist about a partial hysterectomy. I was tired of being biopsied and gouged and cut and sewn up so many times. The mental stress was eroding my brain. The physical stress of having pieces of my ladyhood removed on a regular basis was horrifying. Neurological problems that may or may not be related to the cancer and the treatment and the lack of research surrounding all of this ("we just don't know enough about this to give you a definitive answer, maybe in a few years...") taking a toll on my sex life- hell- on my entire life. Nearly six years of going back and forth with this issue was wearing thin. I wasn't getting better. Every time I went to the doctor the cancer spots would spread or move or hide or mutate. I didn't understand why they couldn't just take out my tumory parts for once and for all and let me live like a normal healthy person.

"Because," she said. "Because what happens if you want another baby? We can't just take out your uterus and cervix in case you decide to have another baby. Your records say you are married, what if he wants another child?"
She said it like Bay-EE-bee.

"I don't want another baby. I want to be healthy for the one I have."

"Well, you are too young to be considered for this operation and you only have one child. If you had two maybe we could talk. If you were closer to 40, it would be an option."

"I'm quite sure I don't want to have another child. I'm 32. I've been told by two doctors that if I were to get pregnant again, it would likely be a high risk, bed-rest pregnancy. I'm not willing to go through that. I'm not willing to sacrifice almost a year of my life and my son's life just to have another baby."

"If you are interested in paying out-of-pocket for a hysterectomy, it might be negotiable."

And so on and so on and so on. I had this conversation with three other doctors and an insurance rep.

So, because I'm just a spring-like 32 years old and I've only spit one brat, I am not eligible to HAVE A CANCER-RIDDEN NON-VITAL ORGAN removed. Unless I wanted to pay for it.

Fucking lovely.

But the single 29 year-old healthy-as-an-ox yet childless man who works in my office, who carries the same damn insurance card that we all do here, is able to walk into the same hospital and get a vasectomy. No questions asked. He has a consultation, he talks to the girl at the front desk, he comes back in ten days, and he walks down to a taxi stand 45 minutes later with an ice pack and a pat on the back and doctors orders not to cum inside anyone for two weeks.

If I had a spot of melanoma on my arm it would be taken care of without question. If I had breast cancer it would be no problem. Anything anywhere else, and it would be gone and forgotten six months after it was found.

This is bullshit.

So I'm not allowed to decide I don't want a uterus anymore, but I can chose to take a pill every day to render it useless? Yes.

And if I forget that pill and I get pregnant I can chose to come to you and you can suck out the pregnancy with a vacuum on a straw? Yes.

But you can't take out my uterus because I might decide to have a baby but I can always decide to terminate that baby or I might be able to take a pill the next day after having unprotected sex so I won't have to have a baby that I don't want and I can do it all again and again and again provided I keep giving you $200 every time it happens? Yes.

And I can have my cervix and uterus removed on my dime? Yes.

But not on yours, and you are willing to pay so that I can have my reproductive organs nickled and fucking dimed until they are shredded into nothingness just so you can't say 'I told you so' if I get some sort of hormonal maternal surge in my late 30s? Just in case I want an eleventh hour child you say you are doing me some sort of favor? Yes.

What is this about, fundamentally?

I don't really understand all this. Six years brings probably over fifty office visits, dozens of painful biopsies, and one out-patient anesthetized surgery accumulated. Prescriptions filled. I can't imagine the total monetary cost.

But, cue the bluebirds and bring in the sunshine. Run a kitten across a field. Is that a bunny? Let's go horseback riding. Through a meadow of daisies. With ice cream cones for desert. Double scoop.

In better news, I've had two clean biopsies in a row. That's never happened before. I go back next month, and then in January, and if those are clean I can start living like none of this ever happened.

Three cheers for normal annual gynecological visits.

A girl can only take so many trips in those stir-ups before she gets a mite bit angry at the system.

2009-06-24T14:42:00.004-04:00

I had a screening earlier this week to see if the cancer is creeping back or not. It's been six months since my last clean test, and the doctor told me that everything looks cute up there but come back in three months and my results should come back in 3 weeks or so.

Really? Why could I wait six months last time but three this time?
I don't understand science.

And cute was my word, not hers.

And I typoed "results" as "resluts" which would be completely correct if I were waiting on the results of, say, a syphilis test.

You know what really freaks me out about these visits?
Okay. Some of your readers are VVD people and some of you are cancer people, but I think you'll all be able to relate.

You know how when you have lady problems your sex life gets put on hold for a little while sometimes?
And you know how when you have your period (three cheers for pelvic inspections and periods falling on the same day. Hip, hip, boo. Hip, hip, hiss. Hip, Hip, puke) your hormones get a little whacky?
And you may or may not get that tingly tickley warm warm feeling down in your underpants? And you worry that when the gentle doctor probes, lubes, and enters it might feel really good?

It did.

I'm worried that she could tell. I tried to fake it like it didn't, but she's a doctor so she may have been wise to my twitching.

This is my real life.

2009-04-07T16:44:00.002-04:00

I think I'm done here talking about pain, talking about tests, talking about horrible little cell mutations that threaten to eat the core of my being one reproductive area at a time.

I'm not done with the blog, but I'm done talking about that.

I'll keep a record of future doctor's visits and tests and results and (hopefully not) treatment plans, but hopefully those will be few and far between.

I have been struggling, over the past five years, debating, just how public to go with this issue.

Do I tell my family?

I did. All it did was worry them. My father thinks this is a punishment from his God because I had sex before I got married. He is convinced that only sinners have problems with their privates. I wonder if he knows that I know his wife takes (or at least took) Valtrex. I wonder if that's why he is so knee jerky about this.

My mother thinks it is somehow her fault. The guilt of motherhood is so strong, so overbearing. My son has some testicular issues and I already blame myself. He is three. I am somehow convinced that there is something I could have eaten or not eaten to prevent all this. Done or not done. Maybe it was that one prenatal vitamin I missed in my 5th month of pregnancy. On the day his testicles were supposed to burst forth with impending manliness. Genital cancers and abnormalities run in both sides of his family. Who the hell knew that? It's not something you ask grandma about. It's not heart problems.

I told my close friends. They didn't flinch. Most of them have stories about problems that they have had, that they do have. The ones that don't know a story about someone else who does. That is gold to me. The knowledge that are other people like me.

I have mentioned the cancer on my regular blog. People either ignore it or gush over it. Either is the wrong way to react. There is no right way.

I have mentioned it in small groups. People look at their shoes. I have mentioned it in larger groups. People look around. One person volunteers that she hurts too. Another shares that she has cancer. Another shares that she is afraid she might. It's amazing how many people are dealing with this stuff.

It's heartbreaking how many people are dealing with this stuff but feel that they are alone.

support

2009-03-20T23:40:00.003-04:00

All the flares in all the years I've been going through this were cake compared to the one I had a few weeks ago. I don't know what started it or what finished it but I'm guessing I sat naked on a fireant hill. Actually I'm guessing it was all the cold medicine and the fatigue of this plague that is going around.

To make matters worse, my son wouldn't let me be. He was sick and going through some sort of terrible twos stage and had a particularly rough day with another kid at the daycare. All I wanted was to lie still and pantsless until the pain stopped and all he wanted was to be close to me. He is three now, too old to be sleeping and sitting near me if I'm undressed because he is obsessed with the fact that girls don't have penises and wants to see what they do have. I'm not the kind of mom who will show him.

I was in my bed crying for relief, he was in his bed crying for me. I didn't know what to do.

I gave into him.

I put on a skirt, washed my face, and got out of bed to hold him.

Despite my efforts, he saw that I had been crying and stroked my face and played with my hair and told me that everything was going to be okay because he loved me.

And I stroked his face and played with his hair and told him the same.

And it will be, someday.

where i'm at

2009-03-01T15:07:00.003-05:00

I've been holding back from getting this post up for a couple of weeks. I called the doctor to find out what was up with my last test, and sure enough it was normal. Normal! I had a pap and a mini-biopsy that was normal. I'm not sure whether to believe it or not. Last time they told me I was all better I wasn't. I'm happy now, but cautious. Maybe if I close my eyes and believe hard enough it will be true forever.

I'm so tired of having eighty billion things wrong with my vagina.

It sucks because it hurts. It sucks because you can only share that hurt with a handful of people. No one wants to hear that you are worried, or in pain, or scared shitless. No one wants to hear that about anything, but mostly not about your lady parts. It makes for awkward conversation.

Hey! How are you? What's new?
I can't sit today because I have some sort of neurological issue that no one can diagnose and I can't lie down because I just had a vaginal biopsy and when I lie down it throbs. But when I stand it oozes packing materials and blood. Other than that, same old same old. And you?

Awkward...

I recently read through this blog and noticed that everything is everywhere and up is down and down is up and even though it made sense to me at the time it is all a bunch of craziness and uncertainty and dread and hope and maybe makes little sense to anyone but the girls who are going through this crap with me. Girls who I would've never found if it wasn't for this blog. Girls who have saved me from feeling very much alone and afraid and ashamed. Thank you, girls.

I've had pain down there since I was 13 or 14. Back then I always thought it was growing pains, or pain caused by menstruation, by hormones, by something I ate, by something I wore, by tampons, by pads, by, by, by. Back then I thought it was a normal part of being a girl. I thought it was a punishment for being a girl, for thinking about sex, for making out with boys, for touching myself. I was angry about it, but thought it was just part of life, just one of those things. Chalk it up on the list of womanhood injustices.

They found the cancerous spots more than a decade later. I was 27. I asked if that could be causing pain, and wasn't given an answer. Instead of removing it, they scraped and biopsied and tested and biopsied and told me that they don't want to treat until I've had a child. I didn't want a child. I wanted me. I wanted to live every day and not have to worry if the cancer was spreading down into my vagina and out onto my vulva or up into my guts.

When I was 21 I went through a breast cancer scare. It was terrible. It was nothing. It disappeared somewhere between the bonescan and the MRI and the mammogram and the cat scan and the ultrasound, but during my last appointment with the oncologist, she warned me that it can always come back. It can come back anywhere, anytime. The lump didn't last long enough to biopsy (I had crappy insurance and biopsy was the last resort), and she guessed that whatever it was my body fought it and won. I should have felt invincible, but I felt like I cheated something that would eventually win.

Now, five years after they first spotted the cervical cancer, I have half a cervix and hopefully removing that worked. Some of my vagina was removed too, but just a little off the sides at the top. You wouldn't ever be able to tell if you had the chance to check it out. Trust me on that one. You aren't getting the chance to check it out. I'll still have to go get checked every six months for a year or two, but that beats going every two or three months. I never want to hear anyone complaining about their annual. If I had a nickle for every time I've been in the stirrups, I'd take us out for ice cream cones. Double scoops.

The pain I have always felt is still there, but not as bad as it was for so many years. It sucks. It's improving. It was terrible last week, but it probably won't be this week. It hit it's peak while I was pregnant and breastfeeding. I don't plan to do that again. The fact that I haven't written about it tells me that I'm getting better. Little bit by little bit. It's almost at a level that I can ignore it. I can almost lump it together with my arthritis and fibromyalgia and toss it up as a "bad day". My arthritis was so bad four or five years ago that I would call out of work and lie in bed trying not to let one body part touch another because my joints couldn't take the pressure. The fibromyalgia was so crappy that I couldn't stand the pressure of clothing on my skin. It was torture.

It's not like that anymore.

Why? I have no idea. I'm more stressed, more tired, older than I was then. They say childbirth is good for rheumatism, and it seems that was true for me. Something about the hormones doing something to combat the rheumatoid levels. Some sort of voodoo science battle in your body.

I had chronic migraines while I was growing up, and I only get them a few times a year now. Maybe I'll get lucky and the same will happen with the old crotchola. I have a pretty high threshold for pain. It's bothersome, but I've been living with it for so long that it is no more bothersome to me than country music.

I sound like such a damn whiner. I'm shutting up now. I'm feeling better. I'm feeling optimistic. I'm feeling lucky.

I'm headed out to play the number.

almost famous

2009-02-13T11:45:00.005-05:00

Holy crap! My day was totally in the shitter and then I got an email that completely turned it all around.

I'll get to that.

First of all, no one called me regarding my test results from my appointment on January 8th. I've made a phone call to the office hotline for getting back test results but no one called me from there either. So much for my faith in my amazing hospital that I love and trust.

No news is supposed to be good news, but the last time I had no news it was bad news. Belated bad news, which sends everyone rushing to make up for the time that slipped past. Time that could have been spent pulling out pieces of my womanhood and checking them for cellular errors. So who knows. Either way I probably wouldn't go back until June anyhow so I'm ignoring the whole thing. It's quite refreshing to let a few months go by without having anyone digging around in the trenches.

I'm having some pain issues lately- the staple remover pinchy kind- but not near my cervix, so I'm just trying to not cry and get on with things. I'm still having random bleeding, but it isn't like having two periods anymore. I'm getting one normal period and one pair of ruined underpants each month. SO much better than two periods. The doctor blames hormones and age.

I'm 32 fucking years old.

Age?

Really?

And hormones?

Gah.

So the good news. This blog is going to be listed in the resource section of a book!

I'm officially a Vulvodynia Hero!

I expect a parade, with tickertape. And a medal of honor. And a certificate of achievement. And a day off from work for everyone.

As if. I'm so incredibly thrilled that someone(alexandra@curetogether.com)is out there doing this kind of research and collaboration and getting the word out there to women who suffer so maybe they (we) don't feel so alone and scared and punished and terrible about our vaginas that my heart is exploding over the whole thing.

I've pre-ordered my copy.

I think I'm going to autograph it before I put it on the shelf, with a message to me about what I've been through and how proud I am of myself for making it through the madness without totally giving up on being a girl.

please participate if you can

2009-01-13T15:39:00.001-05:00

Invitation to Participate in "Exploring the use of online support groups among women with vulvodynia" Research

This is an invitation to participate in undergraduate research conducted by Ms Kate Flynn, under the supervision of Dr. Rebecca Knibb at the University of Derby.

Participation involves an interview of up to thirty minutes. This can be conducted via live chat facilities. The interview covers such areas as your experience of vulvodynia, your reasons for seeking out online resources relating to vulvodynia, and the benefits and disadvantages you have experienced while using them.

Participation in the study is completely voluntary and is open to all women aged 18 or over. Your answers will be quoted as part of an undergraduate research project, however the researcher will not use your real name, thereby assuring the information you provide will remain anonymous. You can withdraw from the study at any time.

If you would like to ask any questions regarding the study or express an interest in participating, please contact the researcher using the details below.

Thank you for your time.

Kate Flynn

k.e.r.flynn1@student.derby.ac.uk

2009-01-09T18:40:00.003-05:00

Mostly the same crap has been happening down there so I haven't bothered to write, but then I started getting emails (comments are closed so please feel free to email me with questions or whatever) because everyone thought I went off the deep end so I guess I should give the old vagiary an update.

My pain levels actually better, which is good. I'm having at least two periods a month and bleeding during and after the sexhaving, which is bad. I went to the doc yesterday for a routine cancer check. I was absolutely sure she would find tumors or polyps because of all the bleeding. But nothing. Which is good. But that means the bleeding is probably hormonal. Which is bad.

Maybe that explains my moustache too.

For all you lucky vvd readers, I just have to share how much it sucked to have a gyn visit the day after my period ended. I could have tried to schedule a little better, but since I'm bleeding all the time, it's near impossible. You know that big sign that says "no tampons, intercourse, or douching 72 hours before internal exams"? Yeah, that means pads for 3 days. I'm totally raw. I swear that no matter what brand I use (Stayfree this time) I have a problem.

My big goal for 2009 is to end it with the same amount of vagina as I started it with. We'll see how I do.

news

2008-11-07T08:34:00.001-05:00

I don't know how I let this blog fall to the bottom of my dashboard all the time. I know you are all dying to know what goes on in my pants.

Things are remarkably good.

When I went in for cervical follow up the doctor couldn't find anything nasty to biopsy so she just sent me home with a pat on the back and an order to come back in January for another looksee. Multiple months without gynecological guidance is a godsend.

The pain and aching and burning and tightness and general crappiness is at bay. Any sort of flare ups last hours instead of weeks. I'm still on the Diflucan every six (or is it seven now?) days to regulate the PH balance in there. The doctor said to go cold turkey but I'm a little nervous to do that. My insurance company doesn't cover the prescription as he wrote it, and screwed up the refills so I have more than he intended to give me. I am weaning myself off it slowly. I used to take it every four days, then I took the next round (of eight pills) every five, and now I'm taking one pill every six days for four pills then one every seven for four. I still have at least one refill left, so I'm guessing I'll do four every eight and then four every nine and see where that leaves me.

Clearly the specialist's area of expertise doesn't extend to OCD. I warned him about it in the beginning via the questionnaire, and since he said the medication was harmless long term I don't see a problem.

Right?

Right?

I've never gone cold turkey on anything. I have an elaborate system of letting things trail off into infinity.

So I'm guessing that since things are balanced out down there with all the acids and bases, all I'm left with is the bone, nerve, and skin pain which is most likely a part of the fibromyalgia and arthritis that I'm dealing with throughout my entire self.

Therapy (mental not physical) is probably helping matters too. Who knows.

I've been eating like shit and skipping the gym and if I could just get it together there I'd probably be doing a lot better too. But I'm just so tired of watching what I eat and exercising. And since I'm getting a piece of ass regularly it falls by the wayside. If he'll do me when my breath smells like coffee and frying oil what's the use of caring?

results are in

2008-09-15T10:57:00.000-04:00

Guess who's test results got lost at the doctor's office?

Guess who's bad news test results got lost at the doctor's office?

How did you know? You must read my real blog where I mildly lost it and started drowning my fears in Bourbon and blue eye make up and posted while drunk, which is always a good idea if you are a mommyblogger. (It works, btw, all three things made me feel better).

So, I go in for another horribly painful and bloody biopsy on the 9th of October and then the doctor will decide what to do from there. I'm guessing that I'll have to have more cervix taken off. Away? Out? I don't know what word to use there. Seriously, why can't she just remove the whole damned thing? I'm willing to have my crotch sewn shut at this point.

I love my doctor, I really do, and I especially love how she reassures me that I don't have HPV related cancer, as if that is supposed to make it all better. Congratulations for not being contagious!, now for the bad news.

Why can't I just have an STD like a normal person? Life would be so much easier.

I guess in kinda good news the results show that it isn't as bad as it was the last time, and the last time it wasn't as bad as the first time.

The first time showed raging mutations, then I had Jake and I guess pregnancy causes your cervical cells to overturn so fast that it can actually cure whatever is wrong. Then it came back so I had that surgery last September. Then it was gone but then it came back and here I am today.

Make sense?

Don't worry, I don't get it either.

is this thing still on?

2008-08-27T15:32:00.000-04:00

Hi there! Remember me? The girl with the faulty vagina? Yeah, I'm still here.

I was doing really really well for awhile, and I was under the treatment of a very good, highly respected doctor at Hahnemann/Drexel Hospital who initially said that there were all sorts of signs of inflammation and irritation and general grossness all around. He put me on twice weekly anti-yeast meds and this helped considerably. He said that even if you don't have yeast infections you can still be irritated by the normal levels of yeast that is up there so if you control it things get better fast. Provided, of course, that most of the pain is located in your skin and not in your muscles, nerves, or organ parts.

Guess what? It worked, pretty well. There is still some neural pain and some other nastiness but he said that he wants to pull me off the ridiculously high doses of Diflucan and see if I can live like a normal human girl again. He warned that it might get worse and then get better and it may even get so terribly worse that my crotch will actually ignite and I will pray for death (20% chance. ick) but maybe I'll get really lucky and nothing will happen and I will just feel the way I've been feeling.

I had a ten-day flare up two weeks ago. That sucked. But I'll gladly take a ten day stint and a few two and three day flare ups here and there over the 29 days of misery that used to plague my existence.

We'll see how this goes. The nerve pain sucks, but I'm not considering a block at this point. It feels very pinchy, exactly the way it would feel to take one of those bitey staple remover office supply things and clamp it down on your left lip and squeeze hard. The burning has subsided, I guess, but the tightness is still there.

At this point I feel okay because yes, it hurts, but I also have some sort of idea why. I guess. Hurting and knowing is worlds better than hurting and wondering if you sat on the wrong toilet seat and you have a raging herpectic infection that for some reason isn't showing up on an STD screen. Because that doesn't add any stress or anything.

I don't have to go back to the specialist unless I have a flare up that lasts more than four days, which is good. I like doctors that tell you not to come back unless you want to. It makes me feel like they care about me, not my co-pay.

Now if my regular gyn would just get back to me about the PAP and mini-biopsy I'd be set. I'm giving her until mid-September and then I'm calling her ass.

shiny

2008-03-13T20:37:00.000-04:00

Today was the big doctor visit, the one that was going to solve all my problems and turn me back into a princess. Hell, I'd settle for a stagecoach at this point.

Of course when I got there the receptionist told me that there was no record of my appointment, which I had to wait over two months for. All my information was in the computer, including symptoms and words like itching and anus. Everything but my 9am go-time.

Because I nearly cried, she spoke with the doctor and he said he'd see me anyway. At eleven. Whatever. I've waited this long. What the hell was two more hours.

Okay, I did cry a little. But no sobbing and I pretended to sneeze a couple times and put in eye drops as if my allergies were bothering me. I'm such a phony.

After giving the rundown of symptoms, he said that he suspected lichen sclerosis (LS) but after the exam he said he wasn't so sure despite the "shininess and snugness". His words. He said there wasn't enough scarring to indicate anything specific but there were signs of irritation and swelling. Eww.

He wasn't sure what the bumps were, only that they weren't of the contagious sort and probably not cancerous.

He wasn't sure why things are changing shape down there. It's not gross or anything, just different. He wasn't sure what the cause of anything was. But he doesn't think it's LS. Or at least developed LS. Maybe just the start of it. Or maybe something totally different. Or maybe something meh, or something bleh. He says it is definitely something diagnosable and maybe even treatable based on the way it looks and feels (the way I feel it, not the way it feels to him- I find that important to note).

This is the leading effing VVD specialist in the country, dammit.

I was given two options. One was to do nothing until I get another flare up and try to get in, although it really isn't guaranteed that I'll get in. Two was to treat for recurrent yeast infections. Turns out you can have them but not really know you have them and treat for them but get nowhere because you are doing the wrong sort of treatment. Who knew. Also turns out that nine times out of ten (or something like that. I make up 58% of all statistics I quote. Don't ever trust anything empirical coming out of my mouth) if you are experiencing any irritation at all in your Volvo there is bound to be a yeast issue. Word. Whatever. Just fix it.

One more thing, I got about eight pieces of literature today telling me to absolutely not under any circumstances use Always pads. They are my favorite because they are slender and fit my crotch nicely. Unlike the horses that Kotex, et al. sells. I did some independent internet research and it seems that they use plastics and glues that are highly irritating. They make Luvs diapers too, and I have heard terrible things about them too. I've never used them because of what people say. Live and learn and don't get Luvs. What do you use?

scheduled

2008-01-14T15:04:00.000-05:00

Have you ever had to call your doctor to make an appointment while at work? Times that by eighty and you can maybe start to imagine how much it sucks to call a vagina specialist.

There is nothing like practically shouting the words "I TESTED NEGATIVE FOR STD'S!" and "VAGINAL PAIN, IRRITATION, AND A BURNING SENSATION" and "IT SOMETIMES HURTS WHEN I URINATE" and "MY PANTIES FEEL LIKE A VICE" and "THE PROBLEM ALSO SEEMS TO BE AFFECTING MY ANUS" on company time.

Despite the guy in the next bank of cubes over who feels that it is totally okay to order bootlegged Cialis over his work phone on a monthly basis, I can't bring myself to say this stuff in front of my nearest and dearest colleagues. I usually try to get into a conference room to do things like this, but they are all booked today, and I needed to make this appointment now because it takes forever to get in to this guy (March 13th was the first available). No more waiting. My sex life can't take it.

I opted to make the call from the second floor lobby, where it was just me and the guy who has been trying to fix the security wiring to our doors all day long. He pretended not to hear me and I pretended not to giggle when he was screaming into his phone: "I'M HAVING SOME SERIOUS DIFFICULTY WITH THIS J-BOX!!"

Me too, guy. Me too.

could be worse

2008-01-10T10:01:00.000-05:00

I could be avoiding sex because my bladder, rectum, or vagina was falling out.

I took a pic of the questionnaire I had to fill out before I saw Dr.Wrong.

Turns out pain and sensitivity and cancer and all the other gross stuff I'm dealing with isn't so bad after all.

try again

2008-01-09T18:52:00.000-05:00

Seems that my GYN was a little confused about what was wrong and where. I told her where the pain was, so she sent me to a pelvic floor specialist. The PFS took one look at the intake form and said that she thinks that there was a mistake with the referral and gave me the name of a Vulvodynia specialist at Drexel Med (nee: Hahnemann). She warned me that it is hard to get in, but it will be well worth it if I dedicate myself to the lengthy screening procedure that the guy does.

I asked her to poke around down there and take a look at a few lumps and bumps and tears and she said that she can see that something is wrong with the skin in and around my lovetube, but she doesn't have any clue what it is.

Of course she was the nicest, most sympathetic doctor I've ever dealt with, and I'll never see her again. Maybe I'll write her a letter.

In happier news, I've been trying to stick to the vagina diet and I've been taking a Calcium+Citrate and L. Acidophilous supplement and I can almost live without crying most days. Good times.

help

2007-12-26T12:04:00.000-05:00

I've scheduled an appointment with a urogynecologist for January 9th. I just want to get better.

repeat after me

2007-12-08T08:31:00.000-05:00

VA.GI.AR.Y (vuh-jahy-uh-ree)
~ noun, plural -ries
1. a record of one's emotions and experiences as they relate to the physical status of her pink

I googled it and nothing really came up that made much sense. I think I can corner the market on the word and maybe even submit it to Webster's

can't spell diet without die

2007-12-04T12:52:00.000-05:00

In a never-ending quest to increase my vaginal comfort, I am attempting to follow a low-oxalate diet.

Despite the fact that I am eating a bag of peanut M&M's and considering making a strawberry rhubarb pie for Christmas right now as I type.

I'm day eight with no coffee, and even though people at work are asking me if something is wrong or telling me I look a bit sick, I'm trying to stick with it, even if it is at the risk of others. I swear to your mother that I will bite someone's head off at any minute.

ABDEFGHIJKLMNOPQRSTUVWXYZ

2007-11-05T13:09:00.000-05:00

All signs and traces of cancer and other abnormal cells gone, according to the doctor and her fancy pathological reports. Hooray for modern medicine. Hooray for the all-clear sign to have sex again. Hooray for no appointments with the cold speculum until June.

Boo for the other stuff going on down there, but I'll deal with that later. I need a break from doctors for a little while.

surged

2007-09-29T03:58:00.000-04:00

As of yesterday, there is a chance that I'm no longer a card carrying member of the Cancer Club. We'll see when the results come back from the chunks they took out of my vahooj.

I had to be at the hospital at 6am, they pre-op-ed me by stripping me down and giving me a little shot of something to make me happy, walked (yes, walked) me to my operating room, lied me down on the crucifixion bed like the one I had my baby on, strapped me down and put me under sedation and when I woke up I was in a different room and I all but scratched my face off because they gave me Fentanyl despite my terrible reaction to morphine post-Jake. And then I was back on my own couch by 10.30 or so.

I don't have any real pain, just a few cramps, and I'm not going to bother with filling the Tylenol 3 script my doctor gave me. My nose is raw from the post-op digging, but other than that I feel pretty normal.

Have you ever walked into your own operating room? It's real weird. Thanks to the drugs and the fact that I had to get up before Jesushimself rolled out of his own bed, I wasn't sure if I was having an Astral Experience and actually asked the nurse if I just walked into there all by myself. There are all sorts of dials and instruments and pokey things and big machines and beeping monitors and cold linoleum and people rushing around in gauzy blue gowns and the lights. Oh, the lights. I tried to stay away from the lights but they were so beautiful.

pre-op

2007-09-19T12:17:00.000-04:00

I answered some questions, peed in a cup, and gave up some blood this morning in anticipation for the Great Vagina Removal of '07 next Friday. It should be fantastic. I have to show up at the hospital at 6am.

No jewelry, no make up, no food, no coffee, no booze, no water, no gum chewing. No lotions, no perfumes, no hair product, no pubic hair. No sex, no drugs, no rock and/or roll. No laughing, no games, no fun, no fucking fair. Apparently a few days of Amish living is wonderfully conducive to cervical stability. I'm going to be an absolute joy to be around. You are going to effing love me.

BTW, I am a terrible cup pee-er. I can never direct the stream, I'm concerned whether there is too much or too little. Is it too yellow or too clear? Too warm or too cool? Too lumpy or too runny? Kidding. No lumps. Yet.

3 weeks

2007-09-07T11:20:00.000-04:00

The surgery scheduler called and told me that the doctor doesn't want to wait any longer than the end of September to lengthen my lady by stealing the bottom inch of my cervix. Because she is booked for the 14th and 21st, the 28th is the day.

I feel like I'm going to puke but I really want this to be over with.

pre.op

2007-09-05T14:04:00.001-04:00

This morning I sat in with the doctor who will be carving me a new one soon. She explained that she will be taking about two or three centimeters away from my cervix and sending it to the lab. If the inside of the offending lump tests negative for anything terrible and horrible, that will be that and I just have to go back for Pap Smears every four months for a year or so and make sure they come back normal. If the inside of the gore tests positive, I go back on the chopping block.

It's gonna be sooner rather than later, but I'm not sure when. I'm sitting on my phone waiting for the surgery scheduler to call me. And of course my phone is on vibrate to make the sitting on it part more fun. So call me. Often. Don't be offended if I don't answer.

lady killer

2007-08-16T12:33:00.000-04:00

Word on the biopsies are in, and it isn't good. The doctor would like to dig up in there and cut out all of the nastiness. Although this doesn't guarantee a recovery, it ups my chances at avoiding chemotherapy and sudden vaginal failure and whatever else could possibly happen in the future

My old doctor suggested this in the past, but hesitated to gouge me because I didn't have any children. Now that I have one, the new doc thinks it is time to take care of this. She gave me the option of bi-monthly biopsies instead, but I don't want the anxiety and pain and everything else that goes along with that garbage.

I called and left a message to schedule the pre-op appointment, and hopefully we can get this surgery over and done with by the holidays. It is out-patient, but I'll be off my feet for a couple days while the girl is on the mend.

Things certainly are about to get interesting in the deep South.

fall out zone

2007-08-14T12:49:00.000-04:00

If you've never had the pleasure of a crotch biopsy, one- you are really missing out, two- you don't know the sheer disgusting nauseating feeling when the packing leaves your body. It looks like you just gave birth to a half decomposed mouse encased in a mustard yellowish grey balloon sac. It feels like someone caught your vag on a fish hook and reeled you in before you knew what happened.

So that's what I got to go through last night, with little sympathy from anyone but the cat.

Today marks a week out from the test, and I have yet to hear from the doctor. I don't expect to hear anything this soon so I'm not worried. My GYN gave me a few numbers of Vulvodynia specialists and told me to bring it up with my rheumatologist (who I see next week) but I haven't called the specialists yet. I plan to tell the rheumguy, but he is an old white codger and might get a little squirmy at the mere mention of my jayjay. And whether that is a good squirmy or a bad squirmy I'm just not sure.

I'll leave it to the lady docs to take care of this little problem.

vagthritis

2007-08-08T08:34:00.000-04:00

So the good news is that I'm 100% infection free, which is always nice. The other good news is that the level of cervical cancer that my innerworkings and I are now experiencing is much better than it was in 2005, but worse than it was in 2006. I'll take that. Middle of the road is okay.

I had three cervical biopsies yesterday, and underwent the the mother of all scrapings when the doctor took a pointy metal hook thing and actually scraped a few chunks from the inside and top of my cervix (hint: that hole that only a baby is supposed to touch and the part that is inside my uterus) because she is concerned that the cancer is spreading deeper and deeper into my lady parts. I'll get the results in 1 week to 10 years. All right, a month. I should have some word in a month.

The colposcopy and biopsy were less painful than they have been in the past, but by no means comfortable. When I walked in the room and saw all the instruments and solutions and pastes and packing materials, I panicked a bit. That's never good, because when I panic I fart. Luckily the doctor had an emergency phone call and the air cleared long before she had to stick her face down there. Picture me in a tanktop and socks (I always bring clean socks to a GYN appointment) airing out the room with the paper sheet that is supposed to offer me a feeling of privacy while someone is digging out the old Erie Canal and talking to me about the weather and my job. That's what I call Classy with a capital C. And triple X Sexxxy. So hot.

I feel kind of crappy now. My cervix hurts the way it does when you dialate in labor, without the uterine contractions. Every once in awhile I get cramps, but it's manageable. Sucks that I can't take any painkillers because of Friday's sinus and eye surgery.

Truth be told, I'm okay with the cancer spreading upwards, I don't plan to have any more children and I wouldn't complain too loudly if I had to have a hysterectomy somewhere down the road. No more periods? Where do I sign up? I was really worried that the cancer was spreading down into my vagina because of the stabbyburnyraw feelings I've been having down there. Unlike my uterus, I use my girl. A lot.

Because I don't have any infections, and there are no cancerous lesions or spots in my vagina, and because I have been diagnosed with fibromyalgia, and have some rheumatism problems, and because of the way that my hips are put together with my knees (Pattelo-femoral Syndrome, got that too) are causing problems for my pelvis, coupled with the osteoarthritis, my gyn thinks I may have Vulvodynia and is sending me to a specialist to check it out.

Bottom line- I have arthritic and nerve pains in my goddamned pussy. Kill me now.

Please?

Anyone?

Ladies,

2007-08-07T12:02:00.000-04:00

Because things might get a little personal, I'm moving all things southernly over here.

Despite my fervent google attempts, there doesn't seem to be a lot of personal accounts of what I'm personally accounting for.

So, here we go.

If you know me from my other blogs or from real life (as if. No one really knows anyone these days), you know that my vagina is falling apart. Cervical cancer comes and goes, it seems that I've had a yeast infection for two years, and sometimes the pain down there is so bad that I can't sleep.

In three hours I will go in for another biopsy and hopefully I will get some results from a few other tests to make sure everything is in ship shape down there. I'll keep you posted here, not over on the baby blog.

Cause that is just getting creepy.

Comrades

2005-02-16T09:35:00.002-05:00

If My Penis Hurt, There Would be a Pill

Life With Vulvodynia

The Body Chronic

Mad Peach