December 29, 2009
There are a lot of factors that influenced my dry spell: for one thing I was depressed, so sex wasn't happening very often and also performances were less than stellar... But that day, I was at the helm. I didn't think it would happen, but it snuck up on me and boy did it feel good! A clitoral orgasm cannot compare to a vaginal orgasm in my book.
That leg-shaking, toe-curling experience drastically reduced my stress level while we were away.
However, just like the last time we knocked boots, I had a great deal of pain at the opening of my pink orchid that continued long after the sex was over and the lidocaine had been applied. Obviously, my vulvodynia is back with a vengeance.
To repair the damage I began regularly applying the estrogen/testosterone compound, and quickly found out why I had stopped it in the first place (I should really read my own blog!). It irritates the skin in the surrounding area, especially my clit.
The compound is Vaseline-based, so it's hard to wash off. The longer it lingers, the more my skin flares. I'm hoping my doctor can prescribe something that is water-based.
The pain from the sex trauma and the compound trauma has dissipated, but don't worry I fixed that by going to the gym and spending too much time on the elliptical machine. I caused a pudendal nerve flare that is concentrated on the opening of my urethra (sorry I don't have a fun way to describe that).
How the Hell am I supposed to lose the wedding weight, the honeymoon weight and the holiday weight? This blows.
Also, all the cheating I've done at work crouching on a desk chair when I should be standing has messed up my tail bone. Now it hurts to sit for a whole new reason! But to make it even better, it also hurts to bend over and lie flat on my back! Awesome!
This is what cheating gets you ladies: a whole new set of problems.
Please forgive me for the paragraphs of bitching. I just had to get it all out. Despite all this crap, I'm managing pretty well. I'm actually amused by how messed up things are right now. Perhaps that humor came through.
December 21, 2009
Last night, I decided to get it on, but I almost had to tell my husband to get it off. I felt so much pain at the moment of penetration, I involuntarily pushed him. For a fleeting second, I thought I have to stop, but like always I soldiered on. I don't want to give my husband a complex. He worries too much about everything as it is.
The pain is concentrated around the opening of my squish, and trust me it's still burning bright right now. I believe this is primarily a vulvodynia issue based on the location of the discomfort. I have to confess that I haven't used my estrogen testosterone compound in months. Perhaps all that resilience has worn off.
Tonight it's back to the compound and maybe I'll get intimate with an icepack for a while. I am really uncomfortable. I hope I haven't really set myself back.
December 16, 2009
The only thing I do know is that I'm now on THREE psych meds! ! ! That's ridiculous! What does that say about me? I asked my Dad that question and he said it made me lucky because 20 years ago there were only one or two drugs and otherwise you were on your own. Because of advances in modern medicine, there are many different medications available to treat mental illness.
I'm left wondering what kind of long-term effect these medications will have on my brain. Will my brain ever be able to produce the necessary chemical to maintain my mental health without drugs? Is prolonged drug use going to retard my brains ability to manage itself? Do these drugs set you up to be a user for life?
Think about it, the longer you're on a psych med, the more the doctors and pharmaceutical companies profit.
What am I going to do when I want to get pregnant? I don't think I can function without drugs and I don't think I can function pregnant. That's going to be a problem. Fortunately, I don't have to worry about that for a few years.
I tried to go off of one of my meds over the summer, but my mind went to very dark places once I did. Maybe I'm just one of those people who has to be on psych meds for the rest of my life. It's a disappointing thought.
December 11, 2009
I got to test that theory and it proved wrong. My friend's father passed away last Sunday. My husband (wow, still getting used to that) and I drove up the New Jersey for the viewing and the funeral. Now, a funeral isn't a happy occasion, but being off of work and traveling should have snapped me out of it. Instead, I was completely disengaged and down.
I feel like there are weights at the corners of my eyes and mouth, pulling the skin down. You can actually see it on my face. I always feel tired and in a haze.
I saw my therapist this week, but I found the appointment repetitive and pointless. Her theory that I'm craving chaos in my life and that's why I want to self-destruct seems inaccurate. Frankly, my life is in chaos. My basement has been flooding periodically since we got back from the honeymoon.
When the plumbing backs up we move out, the plumbers come, think they've fixed it, we move back in, the basement floods again, we move back out. I've been living out of suitcases for weeks. Finally we learned last week that we had to replace the main sewer line. There goes all the money we got for the wedding.
If that's not chaos, I don't know what is! ! !
And still I'm down... I saw my psychiatrist today to follow up on the higher dose of my mood stabilizer. I told him it left me too sedated, so he decided to add Wellbutrin to my daily regimen. He told me it would give me more energy, and there would be no weight gain or sexual side effects. Sign me up!
I start Wellbutrin tomorrow. I hope it brings me back. I don't want to feel this way any more.
December 7, 2009
My doctor wrote my prescription for Neurontin differently this time around. I usually take three 300 mg capsules three times a day, but my doctor wrote the new script for 1.5 600 mg tablets three times a day. I objected to the change, but my doctor insisted that he preferred to prescribe it that way for patients with vulvodynia and pudendal neuralgia.
I've been taking the medication this way for a month and a half and I've seen a reduction in my daily pain. At first, I thought I was still in a honeymoon period with my pudendal nerve. Three weeks of vacation left me with very little pain. I thought maybe I the pain would build up as I returned to work, but it hasn't.
I can't say definitively that the change in pills has made a difference, but I can't think of another reason for the improvement. It's a nice reprieve.
That's been one of my biggest problems lately. I completely withdraw to the point where I feel like I'm watching my life, but not actually a part of it. That may not make sense to you. Don't worry, that just means you're not crazy.
I was forced to speak a few times; and it wasn't as difficult as last week.
Once again, I felt completely exhausted afterward, but that was due in large part to a higher dose of my mood stabilizer. I curled up in a ball and passed out on the couch for two hours. I was a zombie for the rest of the day.
That was the only day I took the higher dose. I was far too sedated to function. This only confirms my doctor's belief that there isn't a pill to fix me. It's something I have to work on.
December 1, 2009
I've been stuck in a rough patch for a few weeks, worsening as time goes on. I saw my therapist two weeks ago and she told me that group therapy could really help me. She's suggested this before, but this time she was adamant. I need all the help I can get right now, so I agreed.
My therapist told me it was a handpicked group 8 of very smart, successful women.
I was terrified to go and I dragged my feet in the morning. I arrived 15 minutes late and the session was already in full swing. One woman was in complete crisis because she had just lost custody of her children. She was beside herself and no one could calm her down. She went on and on for the better part of an hour in tears. No one else felt like they could speak because she negated everything.
Finally, my therapist interjected and asked a woman who had been angrily rocking what was upsetting her. She said, "I had to put my cat to sleep yesterday and no offense to you Quinn, but it really pisses me off that you (the therapist) brought someone else into the group without asking our permission first!"
I was in shock. I felt tears well up in my eyes, but I blinked them away. Intellectually, I know she wasn't mad at me, but emotionally it still hurt. I didn't want to be there and it was VERY clear that I wasn't wanted there.
I was forced to explain a little bit about myself to the group with a lot of prompting from my therapist. I said, "I feel like it's insulting to talk about my problems considering what they're going through."
When the session was over a few women asked if I was coming back. I didn't want to, but I promised my therapist I would try it for at least six weeks.
I collapsed when I got home. I felt completely violated by the entire experience. I had to expose my problems to a group of somewhat hostile strangers and I felt wrecked. To make matters worse, I was horrified that my therapist thought it was appropriate to group me with women who were in so mentally unstable. I'm not THAT crazy.
November 24, 2009
I am dealing with another problem that is unrelated. It may be difficult for others to understand. I grew up in a chaotic household. My parents had a lot of problems and as I reached adolescence, so did I. I have the propensity to be incredibly self-destructive in all aspects of my life; from the people I associate with, to the actions I take.
I hit rock bottom more than four years ago, and at that point I began to turn my life around. I learned to value my life and myself. I distanced myself from my associates and I got a handle on all of my destructive behaviors.
It was during this time that I met my husband and went back to school. My life has been busy, but not chaotic. Unfortunately, whenever I hit a lull when I'm not busy, I start to come apart at the seams.
I'm in a massive lull right now. The wedding is over and my next semester doesn't begin until February. Most people would enjoy the downtime, but not me. There are dark corners of my mind that begin to take over. I feel dissociated, like I'm watching my life happen, but I'm not really there. I'm fighting the urge to self-destruct.
I'm so disappointed with myself. I thought I was over all of these problems. I finally have a good, stable life and I don't know how to handle it. I don't know how to live without chaos.
I'm getting help, but unfortunately this isn't a problem you can just fix with a pill. My therapist told me that I'm very complex. Great, that's the same thing my pelvic pain specialist said about my cooter! I'm just complex all and therefore nothing is easy.
A SIDE NOTE: I find it amusing that I can openly describe every nook and cranny of my lady bits, but when it comes to emotional issues, I'm extremely vague. I guess even I have limits.
November 6, 2009
I've survived my first week back at work and I've had to wear pants and undies every day. Well, actually I couldn't take it today, so I'm going comando. I really can only wear panties for so long in a day before my clit starts complaining.
I'm back to the same old routine: my day begins with pain at a zero with the burning steadily increasing over the course of the work day. Resting at home after work brings the pain level down, but often not back to zero.
If I go to the gym, my pain level continues to increase. I call it waking the kitty. I'll be on the elliptical machine doing cardio when suddenly my kitty wakes up and starts howling. At that point I get off the machine and go sit on the toilet to rest my pudendal nerve. There's no science or medicine behind that, I just feel like maybe it might help. If nothing else I get to air it out after perspiring. Totally gross, I know...
Once I get home, I continue to rest and tender my pudendal nerve until bedtime. The next day, I wake up and repeat the cycle.
My life is like the movie Groundhog Day except with beavers.
October 29, 2009
Of course I had to bring my snatch along with me on the trip. I went to a lot of trouble to try and make sure my bits would be as comfortable as possible. I made a special cushion that could fit in a laptop bag. I even had the seamstress who altered my wedding dress make a special cover for the cushion...
Well, we arrived in Barcelona, took a cab to the hotel and I left the damn thing in the cab! I didn't realize my oversight until the next morning when we were packing up to get on the cruise. I can laugh at it now, but at the time I was really upset. I was very worried that the multiple two hour long bus trips in my future were going to cripple me.
The first night on the ship I was not in good form. I was in pain from having sat on an airplane for so long the day before and I was worried that I had developed a yeast infection from the wedding night.
I sunk into a very dark place. I felt trapped: trapped on a boat, trapped in my body, trapped in a bad place in my mind. I stayed up most of the night listening to depressing music and writing. What am I 13 again?!?!? I had very destructive urges, but I didn't act on them. I felt truly tested.
I realized that no matter how far away you go, you can never get away from yourself. I felt disillusioned.
The next day I came out of it and the boat finally left port. We were delayed because the ship had sustained damage on it's way back to Barcelona. The Mediterranean is not calm and smooth in October. We learned that the hard way.
October 5, 2009
Let me take this time to clarify: vulvodynia does not have to be a life sentence, but I think that pudendal neuralgia is. Pudendal neuralgia is damage to the pudendal nerve. It is unlikely that damage will heal on it's own and even surgery offers no guarentees.
I don't think there's a magic cure for either afliction. I think it is something you have to work for every day to ensure that you are as comfortable as possible. It is in that vein that I share my experiences. There are oral and topical prescriptions that I take and physical accomodations that I make daily to avoid causing myself any pain. I have good days and bad. I try to share them all.
There are days when it does get to me and on those days I go to this blog to share my sadness and frustration. I do so with the hope that others will feel a sense of connection and understanding.
It is NEVER my intention to make others feel worse about their condition. If my words have caused any of you to feel dispair, I'm so sorry. I'm not a medical doctor, I'm not an expert. I am only one person sharing my pain and my experience on the internet.
I am successfully living every day with vulvodynia and pudendal neuralgia. I've had to change my life to work around it, but I have an active sexlife and I even have days with no pain. I just take one day at at time and try not to focus on the big picture.
October 4, 2009
I'm supposed to go to work tomorrow. There are things I need to do before I take three weeks off, but it's my job's policy that I not return until I've gone 24 hours without fever. I don't want to risk getting my coworkers sick.
I hadn't told my bosses my diagnosis, but at this point I think it's necessary. I sent them an email explaining that I most likely have H1N1 and asking if they would like me to report to work tomorrow. I'm still waiting for their reply.
My fiance and my family don't want me to drive. On Friday I decided to run an errand and knocked the driver-side mirror off my car before I made it out of the driveway. Probably a sign I shouldn't be behind the wheel...
This is just getting out of hand. I need my life back. I need to get better. There are only six days until the wedding.
September 30, 2009
It started yesterday. I woke up feeling sick, but I shook it off and went to work. As the day wore on, my nose was dripping like a faucet. It wasn't like snot. It was like I was crying big splattering tears from my nose. I started to feel weak and light headed. I asked my supervisor if I could go home, although I was concerned about how I would get there. I got myself home and collapsed into bed. I felt like someone was sitting on my chest. It was exhausting to breathe. My neck, my arms and my legs ached when I moved.
I told my mom and she offered to drop off some medicine and soup. She called me after she had driven away to tell me she had left it on the porch. It's like I have the plague. My sister is afraid to see my parents because they saw me on Monday.
My fiance is sick, but he seems to just have a head cold. Thank God! I don't know how he doesn't have it. I pray that he doesn't start showing symptoms next week. We'll really be in trouble!
I'm trying not to think like that because it just makes me anxious. There's nothing I can do. It's all out of my hands. All I can do is try to get better.
I feel horrible. I hate feeling trapped and isolated at my house. I hate doing nothing. I always like to be busy and productive. There are things I need to do at work before we go on our honeymoon and I just can't do them. I physically need to be in the office to take care of them. I'm stressed about that.
The only positive note in this whole mess is that being sick is very good for my vulvodynia and pudendal neuralgia. I'm essentially reclining all the time. I'm not putting any pressure on my nerve. At least that's good. I couldn't take any extra pain right now.
September 25, 2009
I've been cool as a cucumber through this year of wedding planning. I haven't been stressed about anything until Tuesday. That night I went for my last dress fitting. It was a balmy day and my seamstress didn't have the air conditioning on in her house. It felt a little stuffy, but not uncomfortable.
Once the dress was on, it was a different story. My dress is large. I have a huge crinoline and a ball grown skirt. There have to be at least 30 layers of fabric between my lady business and the outside world. I started to get hot in my dress and my flower began to wilt.
I hadn't thought about being hot in the dress. I started to feel very anxious. If I'm hot in that dress, I'm going to sweat. If I sweat too much, I could develop a yeast infection or a spike in lactobacillus or a smegma build up. All of which could lead to days and even weeks of pain.
One night of sweaty kitty could ruin my wedding night and even my entire honeymoon. Would you want to spend 8 hours walking in a foreign city if your crotch was on fire?
I started to feel hopeless and overwhelmed. Normal women don't have to worry about this nasty crap on their wedding day. It's not fair. I hate my vagina sometimes.
On the car ride home I curled up in a little ball. I felt powerless. My mom tried to comfort me. She told me to request that the AC be on at the reception location.
Since that night of panic, I've picked myself up and started strategizing. I made the request for AC and they were happy to oblige at the reception site. I'm going to pack a hand-held fan and baby powder in my bag along with a few pairs of cotton panties.
I don't really wear panties of any kind because the pressure irritates my clit. I purchased some hipster panties that have some extra clam room. I'm going to try wearing them a few times and see how my clit manages.
I don't want my stupid crippled vagina to ruin my big night. I'm afraid I'm going to have to periodically sneak away to air out my goods. I really hope it doesn't come to that.
September 17, 2009
Unfortunately for me and other women with vulvodynia and pudendal neuralgia, it can be extremely uncomfortable. Even worse is trying to get that smegma out of those folds. The stretching and pulling and rubbing only heighten the pain.
I went and saw my doctor about this matter a few weeks ago. I asked him what I could do about it. He said soak, use a squirt bottle or a hand-held shower head. I have a hand held shower head. When there's something really lodged in there, naturally my shower head fails.
I was hoping he would tell me something useful! Something I hadn't already tried. Even doctors don't have all the answers...
I am really looking forward to the season change. The summer heat has obviously exacerbated this rather indelicate problem to the Nth degree. Cooler weather means no steamed clam. I can't wait!
September 14, 2009
As you all know, I suffer from chronic pain. There are days when the pain is unmanageable and I have to resort to prescription pain medication to be comfortable. On those days I take Vicodin, an acetaminophen combination drug.
The U.S. Food and Drug Administration (FDA) is considering advice from its Advisory Committee that would eliminate all prescription acetaminophen combination medications (like Vicodin, Percocet). These changes could negatively affect me and other people suffering from pain who rely on these medicines every day.
I signed the petition "Acetaminophen: Educate, Do Not Regulate". I'm asking you to sign this petition to help us reach our goal of 5,000 signatures. I care deeply about this cause, and I hope you will support our efforts.
Thank you for your support,
September 1, 2009
Everything in our lives is either on hold or moving at a glacial pace. Sometimes it gets really discouraging.
My partner gave consoled me and made me feel a lot better. He also suggested a shoulder massage in the bathtub... We lit some candles and ran a bath. This was the first time we were going to break in our newly renovated bathroom. Wow it was HOT in there and I am not taking about the water temperature.
One thing lead to another and we decided to do some aqua aerobics, if you know what I mean... I always have to use a lot of KY to protect myself from trauma. I knew most of it would wash away in the tub, but I was willing to take that chance.
There was some pain and some friction, but it was incredible. That was two days ago and I'm still hurting. All the pain is again concentrated in my urethra again. UGH.
Right now, I'm saying it was worth it. If I still feel like this next week, I may feel differently about my aquatic adventure. Hopefully I can rest enough over the holiday weekend to allow my pudendal nerve to recover...
August 26, 2009
I even managed to spend a few hours a day in a bathing suite without irritating my clit! I think the secret was wearing a bathing suite with a little skirt attached. I was able to keep the crotch fabric away from my goods without anyone noticing my droopy drawers.
When I got back from the beach I resolved to continue to take better care of myself. I stopped where my wedge sandles to work. I'm wearing my flat Danskos. They may not look the best with a skirt, but frankly my deli meat is more important.
I'm standing more at the office and not cheating my crouching on a desk chair. It kills my knees and eventually my nerve starts to flare. Even standing for too long gets it going, but there's no question, standing is better than sitting.
I've avoiding using my compound lately because I didn't want to put anything nerve my inflamed urethra. The crazy thing is I've been able to have virtually pain-free sex without using the compound! Maybe the compound was doing more harm than good.
I'm going to avoid it for as long as I can. We'll see what happens.
August 13, 2009
August 5, 2009
My doctor had just gotten back from a vacation and I could tell he didn't want to be back. I was the last patient of the day and it seemed like everyone wanted to just get out of there.
When he called me into his office, I told him my symptoms. He then told me to go to the exam room and get undressed from the waist down. I know this routine by heart. He used the speculum to take a sample and then used his finger to feel the length of my urethra. I was in agony.
After taking a look at all my samples he met me back in his office. He told me that everything looked normal so it had to be a nerve flare. The problem is, there's no trauma I can attribute it to. Why is it happening now? My first thought was, "Oh God, it's getting worse." I started to fight back tears.
For once, my doctor really didn't have any answers. He didn't have a good idea of how to combat the problem. He told me the objective was to knock out the pain long enough to quiet the nerve.
He told me I could apply Lidocane to the opening of the urethra, if that didn't work, I could use a syringe and inject the Lidocane directly into the urethra. If the Lidocane fails he could give me a shot right in that area. All of these options sounded terrible. I couldn't imagine putting anything in there. I was in so much pain just from his exam that I couldn't sit.
I was troubled because it seemed that he really didn't know what to do with me. What's worse, he didn't have much patience. He was rather flip about the whole thing. He told me that if my condition were getting worse, most likely, the pain would be everywhere and not focused in one spot.
That was of no comfort to me. I cried to entire ride home. I felt so scared and discouraged. I can normally deal with the pain and still have a normal sex life, but this is so bad it's made me gun shy. I'm afraid to try on a good day.
July 28, 2009
Men would have a similar problem, but we circumcise them. In the USA, we take away the ugly extra folds of the foreskin that could cause hygiene problems. Why can't I get a little taken off the top? I'm not talking about full female circumcision. That's a horrific practice. I would just appreciate having my clit opened up a bit so stuff wouldn't get stuck in there.
I woke up in pain this morning. Usually I'm pain free in the morning, but today my clit feels raw and the opening of my urethra burns. The worst part is the urethral burning seems to be independent of peeing. What is going on down there?!?!?
I can't get comfortable and I have a painfully (yes, pun intended) long day. I have class until 10pm on top of a full day at the office. I'm going to go crazy. I can't skip it. It's the last class before the final, plus I have a quiz.
Sometimes, I wish I could just leave my vagina at home.
July 21, 2009
Unfortunately because my area was out of whack, I didn't use my compound all week. That became painfully obvious when I went to clean off. The burning was unbelievable. I thought, "God is this what it was like in college? No wonder I cried every time I had sex!" Ouch! I used some lidocaine to numb the burning. My urethra was also in flames.
I worried that I had crippled myself for the entire weekend. I took have a vicodin before we got on the road. It was very difficult to find a comfortable position in the car. I squirmed around a lot, hoping my partner wouldn't notice. Lucky for me, he can be utterly oblivious.
When I went to bed that night, I applied the compound and took another vicodin. In the morning I was much better. I'm not sure how sex and a drug cocktail put an end to my urethral pain, but I'm grateful to be better.
July 17, 2009
So the question is: do I have a nerve flare concentrated in my urethra or do I have an infection that is being magnified by my pudendal neuralgia? I really don't know. I don't have any other UTI symptoms, like urgency or increased frequency.
There have been times when I've had sex in certain positions and the opening of my urethra has been hit or rubbed the wrong way. The pain is similar, but it wasn't linked to peeing. This time, there was no sexual trauma.
I don't know what could have brought it on besides the summer heat. Let's face it ladies, on a hot day, you're going to sweat down there. Pink part perspiration has caused me a lot of problems lately.
When my kitty gets overheated, my lactobacillus population increases causing burning similar to a yeast infection.
Could my hot muff have caused my urethral pain?
I'm drinking cranberry juice and hoping it will go away on it's own. I just saw my doctor last week. If it's not better by Monday I'll call. This is contrary to my, "Why Suffer," motto, but it's good to be sure you need medical assistance first.
I haven't been able to have sex all week and, of course, it has to be the week my partner has eyes for me. Hopefully he'll still be hot for me when this goes away. Maybe I'm just more appealing when he can't have me... or I'm not asking for it...
There might be a lesson in all this.
July 11, 2009
My partner is unfairly represented on this blog because I don't write about the good stuff. That's not what this blog is about. This blog is about my chronic pelvic pain and that pain plays a role in my relationship at times.
My partner is an incredible man, with a good heart. I'm truly blessed to have found him. I would not be where I am without his positive influence on my life. I have never been so happy or so well. He brings out the good in me that I didn't know was there. He supports my dreams and he believes in me. He makes me happy. Thinking about him makes me smile. Even after three years, I still get starry eyed.
I can't wait to be his wife. I am so proud to have him.
July 10, 2009
There are a lot of requirements in order to have a Catholic marriage. We had to go to marriage classes, take an hour long online exam, complete a lot of paperwork, and answer some very personal questions. The Catholic church takes marriage very seriously. I respect that.
For any normal woman in the hot seat, the questions wouldn't cause concern, but for a woman with vulvodynia and pudendal neuralgia, it's a different story.
At our first meeting with the deacon, we had to meet with him separately to answer a series of questions. My fiance went first. I figured if there were any road blocks, he could navigate them better than I. He was asked, "do you know of any problem that would prevent you from having a physical relationship with your future spouse?"
Naturally he said no, but he felt that in some ways his answer was not entirely true.
When my turn arrived, I was asked, "is there any condition that could prevent you from having children?"
In both cases the answer is technically yes. Yes, there are times when I cannot have intercourse with my partner because I have vulvodynia and pudendal neuralgia. And yes, because of those conditions it will be more difficult to have a child and natural birth is out of the question. But that's not the right answer.
I can't stand to be deceitful, but I don't think that line of questioning warranted a lecture on chronic pelvic pain.
The second time we met with the deacon, I was asked if I suffered from mental illness. I wasn't so cool with my answer that time. The question caught me completely off guard.
"That's an awfully personal question. What do they consider mental illness? I have anxiety sometimes, does that count?"
"I think they mean something debilitating like being institutionalized or having something like schizophrenia."
Hmmm. Aren't there HIPPA laws in place to protect my medical history?
I want to reiterate that I respect the desire of the Catholic church to try to ensure that their unions involve many children and don't end in divorse. I guess I just found it ironic that I got hit with those questions.
At this stage, I am capable of having fairly frequent intercourse and I see no reason why I couldn't have children. There is always the possibility that my world will come crashing down on me and I will lose those luxuries. I don't, however, think that's something that Catholic church needs to worry about.
July 1, 2009
This is outrageous! A panel has just recommended that the FDA ban Vicodin and Percocet because they can cause liver damage. What's next, are they going to ban alcohol? How many people suffer from liver failure related the excessive alcohol intake? The important word in that sentence is excessive.
How many people who had liver failure from these meds actually had a prescription, of that number, how many of those people were taking them correctly? One concern is that people would take Vicodin and then take Tylenol or NyQuil, not realizing that all of these drugs contain acetaminophen. Then why don't they just put a big warning on the bottle, "this drug contains acetaminophen and may interact with other drugs that contain acetaminophen."
I take Vicodin as needed for pain. On average, I probably take it once a month. I'll take one pill in one day and no more. I don't mix it with other pain killers or cold medications. I take it safely and responsibly. But apparently the FDA panel doesn't think I'm capable of properly taking my medication. Instead of making it more difficult for these medications to be prescribed to the wrong people, the panel advises that the drugs are taken off the shelves completely. It doesn't matter that many Americans rely on these medications to living comfortable, functional lives.
This decision is so painfully short sighted! They aren't thinking about the people who need these medications, they are only concerned about the people who abuse these medications, the people who shouldn't have access to this medication anyway.
I'm frightened and angry. I strongly believe that I have the right to take this medication responsibly. If the FDA takes away my medication, the FDA takes away my rights as a patient with chronic pain.
June 21, 2009
I have a lot of trouble wrapping me head around that. Call me sexist, but he's a man! Shouldn't he be perpetually in the mood? Shouldn't he be ready to go any time? Shouldn't even suggestive dialogue get him turn him on? Apparently not.
I've never been with someone like this before. Every guy I've ever been with has had a very strong sex drive. Even the one night stands, obviously they wouldn't have happened if the guy hadn't been ready to rip someones clothes off. I was just stupid enough to volunteer.
Sexual compatibility is extremely important to a successful lifelong relationship, even the Catholic Church thinks so. That's why I'm up at my computer at 1:00 in the morning. I'm worried that my partner cannot satisfy my sexual needs. How can I spend the rest of my life in that situation? How can I work so hard DAILY to enjoy sex only to be rejected time and time again?
There's always an excuse, "I'm exhausted, it's too late, I've got a lot on my mind." It's not going to get easier, we're always going to be tired, there are never going to be enough hours in the day, and we're always going to be worried about something, if we can't manage to have regular sex now, we never will.
June 11, 2009
I warned her that I was in some pain that morning and to go easy on me. She used her smaller speculum, but you could have fooled me. It hurt like crazy. I think that thing should be lubricated before it gets inserted. She did all the standard STD tests, leaving out HPV. Apparently it's so common in women in my age group that they only see fit the check for the virus if the pap test comes back irregular. I knew HPV was common, but I had no idea it was THAT common.
Since my gynecologist also handles pregnancy and delivery, I decided to ask her a few medical questions. I'm a very serious planner and with my professional and academic goals, I really need to schedule in a pregnancy or two between degrees.
I asked if it was safe to continue to take Neurontin during pregnancy. She said she wasn't sure, but she thought so. She said that would be better than having to take narcotics for flares. I also learned that other medications that I take could still be taken during a pregnancy with minimal risk.
I am tremendously relieved. I thought I would have to be out of my mind and in constant pain for the entire pregnancy. After so many positive answers I decided to ask the most important question: would she permit a C-section given my vulvodynia and pudendal neuralgia. She told me that was completely reasonable.
Now I feel like pregnancy is a real possibility... down the road... way, way, way down the road.
May 28, 2009
One year ago I through up so hard I broke blood vessels in my face. My head began to pound and I had stop myself. Hours later, the headache continued. The next morning it was still there despite doses or Motrin and Valium. Driving to work that morning, every time I hit a bump in the road, I would get shots of pain in my head. It was excruciating and more so, it was scary.
Another day passed and the pain was no better. Every bump, every pothole, every speed bump sent jolts of pain into my head. I started to worry that I had broken or damaged a blood vessel in my brain. I was afraid I was going to have an aneurysm. I called my neurologist and scheduled a battery of tests. I had an MRI, an MRA and an MRV.
Thankfully, I was fine. After 10 days, the pain subsided, but I vowed that that was the last time. I couldn't do that to myself any more and I couldn't do that to my loved ones. I wasn't going to let anorexia kill me.
It has been a long year. There have been times when I've been tempted to self-destruct, but I haven't. I'm healthier than I've ever been. I eat well and I work out twice a week. Every day is a battle, but now I'm strong enough to fight.
May 22, 2009
This was the most difficult class I have taken so far. The professor was a kookie old man who probably should have retired a few years back. He did not stop to answer questions and he erased figures on the board as soon as he had finished drawing them. He justified that by saying, "it took me this long to write it and it should take you the same amount of time." Of course, he neglected the fact that he was standing in front of the figure as he was drawing it and therefore unless we had the gift of X-ray vision, there was no way we could see what he was drawing. Going to class only confused and frustrated me.
I got a 73 on my first exam and my heart sunk. The exam was extremely difficult. He included material that we had never discussed in class. I'm an A student and I need strong grades to even be considered for the nursing program at any school. I realized that my future was in the hands of a mad man.
I started studying religiously, teaching myself the materail, taking extensive notes from the book and supplimenting it from what I could grasp from lecture. The harder I worked, the better I did. I got an 89 on the second exam and a 96 and the third.
The final was cumulative (ugh!). I studied every day for a week, writing and rewriting formulas and strutures to cement them in my head.
The day of the final I was surrounded by pages and pages of drawings of polysaccharides, fatty acids, amino acids and other organic compounds. I felt confident going into the exam, but the confidence dwindled as soon as I got to the short answer section. He threw in questions that were so far out of left field. No one knew how to answer them. He left us so ill-prepared. (Did I mention that he didn't believe in reviewing because "every class before the exam is a review."?)
When he stepped out of the room for a minute everyone began saying, "what the fuck is this?" At least I wasn't the only one who felt completely lost. I did the best I could and reluctantly turned in my exam, reminding myself that based on my other grades, I could get a 62 and still get a B.
I didn't want to get a 62. I wanted to get an A. It wouldn't have changed my final grade, but I wanted that A for me. I studied harded for that exam than I ever have for anything. I knew the material so well.
This morning I went to meet with my professor to see my exam grade. After all the stress and worry I got an 86. I honestly thought I was going to get a 65. I'm very proud of my grade. I finished the most difficult class that I've taken with a strong B. I'll take it!
May 15, 2009
I went with a firmer foam this time that was still very comfortable. I was very impressed with the store and the gentleman working. I would highly recommend checking out House of Foam for your lady part needs. Unfortunately, it's a local store.
I took my new cushion out for a test drive as soon as I got back in my car to drive home. It seemed to work well, but the big test was going to be the next night at the baseball game.
Because I felt self conscious and I also wanted to keep it clean, I carried my cushion in a large plastic bag. I had no problem getting it past security. When we got to our seats, I took the cushions out of the bag and spread the bag over my seat, before positioning the cushion. After a few adjustments, I was ready to go.
I am proud to say I sat for 3 hours with no discomfort! The game wasn't so bad. There were a lot of homeruns. I wasn't really paying attention though. I think I enjoyed the game because I had wonderful company. My finance was in great form. He was loving an affectionate, something that is rather out of character. I could tell that he was so happy to have me on his arm. The couple who brought us to the game were so much fun.
Best part was, my cushion passed with flying colors.
May 8, 2009
Sing it with me:
Leave me out of the ball game
Leave me out of the crowd
I need a cushion or I can't sit
Why should I put up with this shit
I am not a baseball fan. When I'm subjected to it on television, I'm bored out of my mind. Tomorrow night I'll be subjected to it in person. My fiance and I, along with another couple are going to a baseball game. I'm going because I really like the other couple and I thought it was more of a "thing to do." I didn't think we'd stay that long. Turns out the guy we're going with is a die hard Yankees fan. Looks like we'll be there all night...
Of course, even if I didn't have an aversion to baseball, this would be a problem. Everyone sits at a baseball game. I can't be that weird chick who's standing up the whole time. People will throw stuff at me. Frankly, I've had enough shit thrown at me lately.
Guess that means I'm sitting...
The coushin I have is Tempur Pedic, which means it gets softer as it warms to your body. That was fine in the winter, when I bought it, but now it's warm. As soon as I put my big butt on that cushion it turns into a pancake! No support at all. It's not going to do me any good tomorrow when it's 80 degrees.
Chances are I'm already going to be a bad sport (bad pun intended) so I have to make a better cushion. That way at least the game won't be physically painful. But trust me, it will still be quite painful!
Today after work, I'm going to the House of Foam to have a new cushion made. I need a more supportive foam that won't be influenced by temperature. I've never been there before. Hopefully this goes well and the price is right. I might have a couple made.
I'll write a review later.
May 2, 2009
I do everything in my power to not let it spill into the rest of my life. More often than not, I see no point in letting people in on my pain because there's nothing they can do except feel bad for me. I don't want to make people feel bad for me. Sometimes I really need the support and I'll talk to someone, but generally not my fiance.
I'm currently battling another problem that I can't fix because it's not mine. My partner can be extremely moody. When he gets in a state, he completely shuts down and just won't speak or he's curt and nasty. Both options are awful. It's happening more and more and there's nothing I can do to help him. He won't communicate with me about what's wrong and try as I might, I can't get him to snap out of it.
When he gets like that, I feel trapped. He inevitably pulls me down with him. His behavior has me worried and discouraged, but there's nothing I can do.
How do you cope with a moody partner? What is the best way to handle it? Is it ok to leave for a little while so you don't get sucked down into it when he's having one of those days?
I honestly don't know what to do to protect myself from his moods without making things worse. Will my leaving for an hour or two when he's sulking and brooding hurt him? I tried to go out to get myself a sandwich on a particularly bad night and I felt so guilty I just turned around and went back home.
There's no manual on how to deal with this. Technically there are professionals who can advise me on this matter... I'll probably turn to my therapist next. I really need to learn some coping techniques because this is killing me.
April 23, 2009
Yesterday was Administrative Appreciation Day. My bosses took me and the other admin staff to lunch. It was a long meal. By the time we got back I only had an hour to catch up on work before I had to head out to the salon.
In my haste, I completely forgot to take my mid-day dose of Neurontin. It occurred to me as I was walking to my car, but I didn't think it mattered. Trust me, it did.
My Brazilian bikini wax was so painful this time, I almost had to tell her to stop. Every place she spread the wax hurt and when she pulled the fabric strips off my skin, I thought I was going to go shooting off the table. I tried to use mind over matter and force myself to relax, but nothing could block out that pain. As she rubbed a strip over my right lip and the outer edge of my clit, I thought I was going to scream.
The pain and the anxiety of anticipating more pain made my head hurt. It took so much strength to keep my composure that by the time it was over I felt completely exhausted.
I'm still in pain today. The area feel extremely raw. Waxing is not for everyone, especially women with vulvodynia and pudendal neuralgia, but for me it's normally worth the pain. I know for next time to be sure I've taken my Neurontin well in advanced.
Frankly, it's good to know Neurontin is actually worth taking. I'm on quite a few meds and I'd like to start going off of them sooner rather than later. I know in a few years I'll have to stop all my prescriptions in order to have a safe pregnancy. Neurontin, I'll save for last.
April 17, 2009
Suddenly, I heard the sound of a rock hitting my window. I turned and saw the kids laughing. A little ways down the road I pulled over to call the police. I got out of the car to inspect the damage and see if the kids were approaching. They saw me and ran around the corner. I didn't know my exact location and as I walked to see the closest street sign a rock flew at me. The kids had run around the block and were now throwing rocks directly at me. I got back in the car and waited for the police to arrive as rocks continued to fly.
The kids who through rocks at me walked across the street staring me down to meet up with a friend. I wrote down a description of the boys clothes, pretending not to notice them. One boy in particular seemed to have it out for me. He circled my car like a shark. I pretended not to know who he was. He brazenly walked right by my car, looking in at me. I kept my gaze forward, still pretending to be unaware.
He and his friends disappeared momentarily before two more rocks flew at my car. One hit the center of my windshield with a loud crack. I jumped out of my car and yelled, "Stop it, asshole! I called the police!" I thought this would scare them away. I thought this would make them stop. I continued to wait for the police.
Now I was scared. Tears were rolling down my cheeks. I tried to keep my composure. Then two more rocks hit my car. CRACK! CRACK! One hit my windshield and one hit my roof. I jumped and screamed when I heard the sound. I didn't know where the rocks had come from this time.
I began to completely fall apart. I called the police to tell them that I couldn't wait for them anymore because I feared for my safety. I wasn't thinking clearly. I got out of my car to retrieve one of the rocks for evidence. More rocks flew at me when I stepped into the street.
I ran back in my car, blinded by tears and drove away. There were so many people walking along that street. School had just gotten out and kids were walking home. Families were sitting on their front porches with their young children. No one stopped to help me. No one cared. They just stared at me as rocks bashed into my car and flew at me.
Two blocks away as I sat at a light, I saw the boy who circled my car like a shark. He was sitting on the steps of a church. He saw me and got up, coming at me, making threatening gestures. I was terrified. Before he could make it to my car, the light changed and I floored it.
I drove back to my parking garage shaking and crying. It was then that I realized that they had shattered part of my windshield. I could hear the sound of one of the rocks scraping around the roof of my car as I circled my garage searching for a parking space.
When I parked I took the rock with me to show the police. It was a large piece of concrete. I called my friend at work and told her what had happened. She came to be with me while I waited for the police to arrive.
I tried to get a hold of myself, but I couldn't. The first officer on the scene was curt and unkind. He took my information and told me I should have left the scene immediately. I didn't know I could leave. I had reported an incident to the police and I thought I had to remain in that location until the matter had been settled, like a car accident. I also thought that there would be consequences for the boy who throw the rocks and harassed me, but I was wrong.
Because the rocks never hit me, the incident was being filed as destruction of property. A description of the boy would be included in the report, but that would be the end of it. When I realized how the system worked, I began to feel so angry at myself. I felt like a fool. I waited there for the police for nothing. My car was badly damaged and there would be no consequences for the boy who terrorized me.
As I began to completely lose faith in the justice system in my city, the second cop on the scene asked me if I wanted to ride along while they looked for the boy. I said ok and my friend and I climbed into the back of his cruiser. I was terrified, but excited at the same time. I leaned over to my friend and asked, "Is this the craziest thing you've ever done?" "I think so," she said.
The cop put his lights on and went from 0 to 75 in seconds, tearing up a major road. He turned on his siren to get through intersections. We didn't have seatbelts in the back, so we had to hold on tight.
The novelty wore off and the fear sunk in as we got closer to the crime scene. My whole body started shaking. What if we did find him? What if he did get arrested? What would he do to me then? He knew my car and he knew my face. What kind of retribution would he seek for my tenacity? I ducked down in the car. I didn't want people to see me, but every person we passed on the street stared at us in the back of a speeding police car.
The kid and his friends were gone. The cop brought us back to the garage and dropped us off. I collected my police report and my friend and I went back to our office. The work day was nearly over.
I learned a few hard lessons that day. Never stop your car when someone throws something at you. You can file a police report later in a safe location. I also learned that there's really no punishment for that kind of crime. Those kids got away with destruction of property and attempted assault. They had no fear. It's frightening to think what they could be capable of. I strongly believe that karma will catch up with everyone person who threw rocks at me that day, unless they turn their lives around. They are all racing down a terrible path, one all to common on my city.
Ladies, please taking something away from my ordeal. Don't put your lives in jeopardy for something stupid like a car. Keep yourselves safe.
April 9, 2009
The estrace cream seems to irritate my clit. I've had to reduce how much and how often I use it. That's ok, I'm not having much sex anyway...
I can get pretty far into the day before the burning starts as long as I'm good about standing in the office. By the time I get home from work, there's always some burning, but most days a short rest lying down is enough to calm the nerve down.
I can't seem to go a full day without some pain. That's distressing, but it's at a manageable level. I'd really like a vacation from my vulvodynia and pudendal neuralgia. We could use some time apart.
March 31, 2009
I was on the elliptical for 20 minutes, but I only give it 50%. That's enough to get moving and elevate my heart rate to enough to be considered low impact fat burning. Usually by 12 minutes I start to hurt. Reducing my speed and resistance reduced the trauma to my nerve.
Since the last flare I hardly sit to do any weight training. I've been standing or lying down and working my arms, shoulders and legs. I have to sit to do back, but I've VERY careful.
I'm extremely relieved that I finally had a pain-free workout.
I'm not a gym-nut, by any means, but I've found that exercising makes a big difference in my life. Working out makes me feel proud of myself and satisfied. It's also helped reduce my anxiety and helped me fall asleep faster. Sleeping has been a problem for me since college. I'm now sleeping without Ambien. I've been on Ambien for 3 years. Finally, going to the gym has improved my appearance. I gained 25 pounds on Lyrica and I've spent a year and a half trying to work it all off.
I highly reccommend some form of exercise to any woman living with vulvodynia and pudendal neuralgia. Impact can irritate the nerve, so don't go out and run a marathon or walk five miles, but get your heart beating. It feels good.
March 25, 2009
It is a great comfort to know that I'm not alone and there are other women out there who understand.
If you missed the meeting last night, you can check out the transcript in the chat box.
Thank you again, ladies.
March 24, 2009
Rules of Etiquette
-A topic will be introduced and then everyone will be invited to share her experience.
March 19, 2009
Recently, I found a ray of sunshine in the cloudy abyss of vulvodynia and pudendal neuralgia. I got a jury duty notice in the mail. I was summoned, but I had to give all my information in preparation of a jury summons. Boo! I did not want to be called for jury duty and now I never will.
When I showed my notice to my brilliant fiance, he said, "can't your doctor write you a note for that?" Of course, how in the world could I sit in some horrible chair for 8 hours a day? There's no way. I would be in agony. I don't think the court system would let one random juror stand up during the trial.
I called my doctor and found out that he has completed the necessary paperwork for other patients. It took me a week to get through to the city courthouse, but now the permanent disability form is in the mail. As soon as I receive it, I have to take it to my doctor to complete and I have to return the original to the courthouse.
I'm very relieved I have the opportunity to do this. I appreciate the civic duty of being on a jury, but it's really not something my body can handle.
I had an important meeting yesterday at work and I had to sit properly at a table for an hour and a half. It started a minor flare. Next time, I'm just going to stand, even if it makes me look unprofessional or conspicuous. It's just not worth the pain to pretend to be something I'm not.
March 11, 2009
I've learned that while it's good to monitor your symptoms, but for a diagnosis and treatment, I'm better off going to my doctor. For all I know, it was lactobacillus all along and there never was a yeast infection.
My doctor has a policy where you can be squeezed into the schedule on a given day for a yeast check. I didn't want to trouble my doctor or myself because I really thought I had it all figured out. In the end, I still had to go see him. Next time I think I have a yeast infect, I'm starting with him. Even if there's no yeast, he my see another explosion in the lactobacillus population.
Without a microscope and a wet prep, I can't make those determinations from home. Hmmm...
March 6, 2009
A few months back, I had the infamous mole removed from the outskirts of my anus. My doctor advised that I see a dermatologist to get the rest of my moles checked out. He was astounded that the first dermatologist who identified the butt mole as atypical didn't check me.
I decided for a thorough job I needed to make an appointment with my primary dermatologist. The old guy who saw my ass is my fallback. I can be seen much faster when I call his office. Yesterday I went to the dermatologist and guess what? She found two other atypical moles.
She removed one on my stomach and took pictures and measurements of the one the second toe of my right foot. I have to come back in three months to see if it has changed. I'll probably have that one removed and biopsied then.
I asked my dermatologist why I had so many pre-cancerous growths, especially considering I never go out in the sun. And obviously, I've never tanned my asshole. She told me that sun damage is only one factor of melanoma. I am genetically predisposed to develop melanoma. She told me to avoid being in the sun and to protect myself thoroughly when I do spend time outside.
My dermatologist asked me if I had any history of melanoma, but I didn't know of any. After my appointment I called my mom to tell the latest health problem I have. She told me that my father's cousin died of melanoma. Ding! There's my family history. Yikes!
Fortunately for me, this news isn't devastating. I'm of Swedish and Irish descent. I don't like being in the sun and I'm prone to get overheated. I'm happy to stay under the umbrella on the beach or in a big sun hat.
March 5, 2009
I'm taking Clindamicin for the next week to get the flora levels back to normal. Hopefully, that gets everything undercontrol. In the meantime, I'm very uncomfortable and the only relief I get is from a hot bathtub. Too bad I can't keep a bathtub at my job.
March 4, 2009
I made an appointment with my doctor for tonight. I didn't want to wait another day. This has been going on for a week and a half and today is the worst day. Today should be my best. I don't get it. Hopefully my doctor will be able to detect whatever is going on down there and get this flare under control.
March 3, 2009
I didn't expect to see anything, but that night I got a clue. There was a small amount of discharge (gross, I know) and I thought, "Oh thank God, it might be yeast! Please God, let it be yeast!" I took a Diflucan and got in the tub for a hot soak.
I assume the yeast infection started after the gym on Monday. I worked out really hard and got really sweaty. I've learned from experience that sweaty bits are often followed by yeast infections. Working out on Wednesday probably only exacerbated the problem.
By Sunday, I saw a good amount of improvement. Unfortunately, I had to work from home on Monday due to snow. I don't have any accommodations at home for my vulvodynia or pudendal neuralgia. I had to sit at a desk of most of the day. I took a second dose of Difluca that day.
I have a lot of burning today. Is it from sitting or is it a remaining flare from the yeast infection? Only time will tell.
February 27, 2009
Monday I went at it a little hard. I was doing short bursts of rigorous activity followed by periods of my normal pace... God, reading this I sound like some kind of workout freak! That couldn't be further from the truth. I started going to the gym after I gained 25 pounds on Lyrica. Exercise has been really good for me. I find it really satisfying and I can see the results.
After 20 minutes of that I was sweaty and tired and I started to feel some pain. I only did standing weights and hoped for the best. It didn't get better and by Tuesday I became more and more aware of my irritated nerve.
Wednesday, I was feeling better, so I thought I'd give it another shot, without pushing myself. Just so I could get my heart rate up. It took me 3 paces on the running machine to realize that was out of the question. I hopped off and got on the elliptical. After 20 minutes going extremely slowly, I started to feel that same burning pain around my urethral meatus.
Give me a freakin' break! I can't do anything. I'm getting really frustrated. I might make an appointment with my doctor to get some advice on what physical activities I can do. I'm feeling like a complete cripple.
I have a horrible flare. I'm in so much burning pain today. It's very uncomfortable, standing doesn't help at all.
This whole situation is exacerbated by the fact that my eating disorder demons have been sitting heavily on my chest all week. Wednesday marked 9 months free of any eating disorder behavior. It's been 13 years since I've gone that long.
It's probably a combination of stress from school, my first exam was Thursday, eating big meals with family and being bigger than I'd like to be. I want to be trim and fit for my wedding. I don't want big flappy arms in all my pictures.
It's a bad combination and I've had a very difficult week. I'm very grateful anti-anxiety medication. It came in handy more than once.
February 20, 2009
If you have a doctor that you see, please send me his or her name, address and phone number. More importantly, please send me any comments you have about that doctor and rate your experience.
It took me 5 years to find the right doctor. With this list, maybe we can help save someone else from years of discomfort and deadends.
Please email your doctor's information to lifewithvulvodyniaATgmail.com or post comments to this entry.
Thank you very much for your contribution.
February 18, 2009
By the end of the night, I was exhausted and beginning the next morning, I was in pain. Same place as the night before. It was dull, but it increased as the day wore on. Sitting really exasperated it.
I saw my doctor during my lunch break. He told me that everything looked fine, but in order to keep the skin from refusing I had to manipulate it. He applied some KY and began spreading open my clitoral hood with his thumbs and index fingers, while pushing my hood up.
"I don't want to do this a lot because it will hurt."
"It already hurts."
He told me to apply lidocaine jelly, wait for the numbness to kick in and then manipulate my business the way he had.
I didn't want to pull my folds apart and rub myself raw. Between the gym flare, caused by my ever-present pudendal neuralgia and the clitoral pain, there was no way I was going near by lady lumps.
I was in pain and feeling down. By the time I got home from work, I was exhausted and miserable. I was in a lot of burning pain and I felt helpless.
I miss the days when my pain was only caused by sex. I don't know what happened to bring on the pudendal neuralgia, but I hate it. I can't avoid it. Pudendal neuralgia affects everything I do.
I started feeling trapped in my body with a life sentence. I am going to be tortured by this pain for th rest of my life and I feel like it's getting worse. I just want it to stop.
I took a percocet after dinner and went to bed.
I'm in much better spirits today. I know thinking like that only makes my situation and my mood worse. But sometimes, it gets to you.
February 16, 2009
I was really happy to learn that Servicing My Chassis will also be featured in the resource section. Congratulations Lora!
For those of you who have not checked out CureTogether.com, take a look. It's a site that "helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research." You can compare your health with people with the same condition, track your health and ultimately make better health decisions.
You don't have to use all the features, but by comparing your health, you are providing extremely valuable data that can help professionals discover novel therapies for patients like you. I think this site has the potential to have a tremendous impact on the future of medical research.
February 13, 2009
I'm off to the beach for a sexless Valentine's Day. I can't have any fun for 2 weeks. I really couldn't have picked a worse time. My fiance's birthday was Tuesday and Saturday is that stupid overrated love holiday.
Frankly, I think it should be call V Day and I think it should be a day to raise awareness about the mysterious snatch.
Every year at my college the women's group performed the Vagina Monologues on Valentine's Day weekend. My senior year I got on board and performed My Short Skirt in the production. It was a lot of fun.
So on Saturday, instead of whispering sweet nothings into your honey's ear. Take a moment to talk to someone you know about your muff and, more importantly, your pelvic pain. It's time to give V Day a whole new meaning.
I hate the word and I never used it in my blog, but let's shout it out. Vagina!
Here's an excerpt from the Introduction to Eve Ensler's Vagina Monologues:
I bet you're worried.
We were worried.
We were worried about vaginas.
We were worried about what we think about vaginas, and even more worried that we don't think about them. We were worried about our own vaginas. They needed a context of other vaginas- a community, a culture of vaginas. There's so much darkness and secrecy surrounding them - like the Bermuda triangle. Nobody every reports back from there.
Happy V Day, Ladies.
I tried to go to work yesterday, but I couldn't see straight. I know from experience that I shouldn't get behind the wheel of a car when I'm seeing double. I don't want to drive into another parked car.
It was a nice and much needed break. I got to catch up and sleep and do some knitting. I know for future reference that it takes my body a long time to recover from anesthesia.
Honestly, the anesthesia was the worse part of this whole experience. The pain really wasn't that bad. Nothing compared to a flare. I had to ice my folds every night and the area is still extremely tender, but nothing I can't handle.
I worried for nothing, but how could I know? I've tried spreading my beef curtains to find the incision, with no luck. I know it's in there somewhere, but chances are I wouldn't want to see it.
Thank you to everyone for their support and good wishes.
February 10, 2009
I took a nap mid-day then tried to eat lunch. As soon as I brought the soup to my mouth, I had to run to the bathroom and lie on the floor, willing myself not to throw up. It was awful.
I used an anti-nausea suppository and was able to choke down some soup. I didn't really feel any clitoral pain. All the pain was in my stomach and my head. There was no color in my face. I looked terrible.
After another nap I had dinner. I really had an appetite, despite the nausea. But an hour later I was back on the bathroom floor fighting the urge to vomit.
I got in bed with a cold washcloth and a dose of vicodin, my normal pain medication.
I didn't learn until today that oxycodon causes nausea! Why didn't anyone tell me? I wouldn't have taken the second dose. Anesthesia makes me nauseated anyway, but I have a feeling my day wouldn't have been quite as bad.
Today I'm feeling better, but I'm accutely aware of my clitoral pain. I feel like I have a big cut. There's a lot of soreness. I can't really get comfortable, but it doesn't seem to be effecting my pudendal nerve. Thank God!
I can't believe it's already Tuesday. I lost a day to surgery and nausea.
My mom was a saint and took incredible care of me. I was in no condition to be alone. I'm very lucky to have her.
The good news is, the pain is not nearly as bad as I thought it would be. The bad news is, I really don't respond well to anesthesia. I'll make sure to bring home a prescription for nausea next time.
Thank you to everyone for your support and good wishes. I'm going back to work tomorrow with advil and vicodin. Hopefully I'll be comfortable.
February 8, 2009
Hopefully, I'm worried for nothing. I'll know when the anesthesia wears off.
February 6, 2009
The 3 hour lecture is held in a lab room with tall lab tables instead of desks. The tables are about waist high and the chairs are small rolling desk chairs. I tried to orient my body in such a way to avoid putting pressure on the nerve, but there just wasn't enough chair. I couldn't fold my legs up and to the side, putting the majority of my weight on my hip.
By the second hour my nerve began to flare. I was in pain and I didn't know what to do. That old familiar pain crept into my throat and my eyes stung with tears. Why can't I sit through class without pain like everyone else? I felt like a cripple, hopeless and angry. Why does pudendal neuralgia and vulvodynia have to creep into every area of my life?
I swallowed my hurt and frustration and stood up. The bench is too low to write on and too tall for a different chair. I awkwardly spread my legs to bring me to right height to use the table as a writing surface.
To make matters worse, my professor is a terrible teacher. He's a pleasant funny old kook, but when it comes to explaining content he's the worst. My classmates were all in shock by his methods and extremely frustrated. I need to do well in the class and it looks as though I'm going to have to teach myself the material.
There's an online learning tool that comes with our text book, but we can't use it because, as our professor stated, "I don't use that crap!" I anticipate this will be a miserable semester.
When class finally ended, I drove home angrily and draped myself on the couch. Obviously, I couldn't sit. I was inconsolable . Thank God for anxiety drugs. I took one before bed to calm me down.
I succumbed to my tears before falling asleep. I hate the thought of living with these conditions for the rest of my life. Especially the pudendal neuralgia.
I have control over the vulvodynia. I use plenty of lubricant and I apply my hormone cream every night. If I'm in pain, I can avoid sex.
I don't have control over my pudendal neuralgia. I feel like it has control of me and it's never letting go.
February 2, 2009
With his magnifying camera and the screen above the examining table, he was able to show me where the skin had fused. I could see the build up of cells under the skin. It's funny, that's not where I thought the problem was at all.
I proceeded to hunch over, spread my bits and show him the area where I continually find a build up of cells. He told me that my trouble spot looked ok. I told him that he would probably wind up having to open that area next.
Back in my doctor's office, he told me that there is always the risk that the problem not improve or get worse after the procedure, but it was unlikely. He told me, he could really do it in the office, save for the fact that I wouldn't be able to tolerate the pain. You do not want a patient to flinch when you're slicing her mystery mountain.
I'm nervous, but hopefully everything will be fine.
January 28, 2009
Last year on this date I posted a tribute to one of the true pioneers of physical therapy, Florence Peterson Kendall. This year, in honor of her passing and her miraculous life, I want to once again pay tribute to Florence P. Kendall and remember her not only as a physical therapist, but also as my grandmother.
She continues to be my inspiration for trudging forward towards a nursing degree and eventually a Master's in Women's Health. I know she would be proud of me. Even though it's been three years since she left, she's still in my thoughts every day.
The greatest compliment I ever received came from my mother when she told me, "you have Amma's spirit." Sometimes I wish she could see how far I've come. My life was a mess when she died, but I believe in my heart that she knows.
For those of you who still have grandparents or even older parents, treasure them, love them, give them your time. Sometimes it can feel like an inconvenience to go out of your way to pay grandpa a visit, but the time we have is precious and fleeting. You'll be grateful for the moments you shared when they have gone.
January 22, 2009
You'll never guess what came of all this sitting... Another flare. I could smack myself. I know better, but I thought by perching on the kneeling chair and lounging on the couch I was cheating the system and I wasn't really sitting.
Apparently, I was wrong. My pudendal nerve has made it abundantly clear that I was in fact sitting.
I've gong back to lying on the couch and standing in the office. I'm coming out of the flare, thank goodness. And I know for next time that I can't trick my body into thinking that I'm not sitting. If there's pressure, there's pain and if there's pain, a flare is just around the corner.
January 14, 2009
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.
January 13, 2009
Yesterday I had an important meeting after business hours and I wanted to look professional. No baggy pants without panties. I wore a sharp pair of gray, fitted dress pants and a button down shirt. Naturally, with pants that fit, I need to wear panties.
The ensemble didn't bother me for most of the day, but by 7:00 pm when I headed home I became acutely aware that something was wrong.
I smiled my way through a lovely dinner that my fiance prepared. As soon as I finished washing the dishes, I had to excuse myself to take a look at my lady flaps.
To call a vag a clam or an oyster seems rather accurate, at least in my case. In nature, a pearl is created when a grain of sand or some other foreign matter enters the oyster and causes irritation. In response to the discomfort, the oyster coats the foreign invader with layers of mother of pearl to make it less abrasive. In the end, a beautiful pearl is formed.
When foreign matter becomes lodged in the folds of my oyster, the skin becomes inflamed and eventually the skin tries to heal over the invader to eliminate the discomfort. What I find are essentially pearls of sloughed skin deep in tiny craters that have formed around previous irritation. This is totally gross, but picture acne scars on your silk flower.
If a cranky oyster could just expel the foreign material, there would be no pain, and of course, not pearls.
Good news for me, bad news for anyone who loves pearls.