December 30, 2008
I did some traveling over the holiday season and, like so many, I got stuck in the airport for a few extra hours before departure. During that time I wandered around the airport shops with my future sister in law. In Brookstone she discovered a cushion designed to take pressure off your tailbone and she asked me if I could use it. I got really excited.
The cushion I bought from the Interstitial Cystitis website has been worn down by constant use. I keep it in the car and use it every day. It's served me well but I wanted something with more support.
This Brookstone cushion looked perfect! Only problem was it was $40. I felt quite conflicted. It seemed perfect, but that was an awful lot of money to spend on myself during the holiday season. My wonderful sister in law said she would split the price with me and call it my gift. I hemmed and hawed a bit, but she convinced me to buy it.
After some modifications with a kitchen knife, it fits my body just right. My doctor has advised using a kneeling pad and cutting an opening that would aliviate any pressure on the nerve while sitting. The kneeling pads at Homedepot are thin and uncomfortable. This cushion is fabulous. I feel no pressure on my pudendal nerve when I sit.
I don't plan on doing any marathon sitting, but it's good to know that I have the support I need when I do have to sit for extended periods of time in the car or elsewhere.
When I first visited my doctor about the last flare he said that it could have been attributed to the two and a half hours I spent between Baltimore and Philadelphia. I told him that I don't sit on my firezone and instead I cock my legs to one side and put all the pressure on my hip. He told me in that position I was hyper-extending the nerve, which could also cause a flare.
Man, sometimes it's impossible to keep my doctor and my coochie happy! He told me the best way to sit was with two feet on the floor. And of course, on a cushion.
Over the years, I've learned that it is in my best interest to heed his advice. I've been ignoring it for long enough and obviously my way isn't working.
Honestly, I'm so happy with this cushion, I might buy another one for my fiance's car and maybe my office.
BTW- Yes, that is a stick of deodorant on my dining room table...
December 15, 2008
The clitoral pain seems to be under control. I still have it, but it's tolerable. Obviously having hot wax ripped off that area causes a flare, but it usually passes in a day. I'm willing to take the chance because I just hate pubes.
Having a smooth peach makes me feel more comfortable. My vag has so many potentially embarrassing problems, I like to at least keep the lawn well maintained. For some reason, it makes me hate that part a little less. It may not work well, but at least it looks pretty.
My Dad always tells me, "tis better to look good than be good." How true.
December 12, 2008
Instead he tells me that my clit is fusing shut. Come on! Does that really happen to people?!?!?
The good news is, the steroid seems to be making a difference. I've used it for 3 nights and my clitoral pain has decreased. I'm sure digging out that mass of epithelial cells helped as well. I haven't started pulling things apart when I apply the ointment. I want to let it calm down first.
I think between my class being over and my clit being treated, I should have a pretty nice weekend. I hope you all do the same.
Thank you for your thoughts and support through this difficult flare.
December 10, 2008
First, a disclaimer: I've grown almost too comfortable discussing lady bits, but this topic even makes me squirm. Please forgive the graphic content.
When I told my doctor that I was still having miserable clitoral pain he asked me if I had recently experienced any kind of straddling trauma. The answer is a definite no. My doctor decided that he needed to take a closer look.
Wearing magnifying specs, my doctor got an extreme closeup of my lady lump. He had to stretch it and spread it apart in every which way. At times it was so painful, I thought I was going to shoot right off the examining table.
He asked if I used any creams on that area and I told him no. I tried once and some of the product didn't dissolve and got stuck in my folds, causing me unbearable pain.
Just as I described, my doctor uncovered some material stuck in my hood. He put on the screen to show me what he was seeing. He then proceeded to squirt water to try and dislodge the matter, but to no avail. Finally he took a toothpick, a blue toothpick to be exact, and began gently scraping the material out of the fold.
The whole order was extremely uncomfortable, but being able to see what he was doing really helped. I knew what to expect and therefore I didn't jump when he made contact. Don't get me wrong, the view was gruesome. I told my doctor he could use that footage in a horror movie.
He was able to remove the material and he explained that it was a collection of skin that had sloughed off and gotten caught. He also told me that part of my clit was fusing together over a site of inflammation.
Apparently, when a collection of skins cells gets lodged in a clitoral fold it can cause inflammation and irritation. The skin then heals over the irritated area, trapping the material under the skin. What's worse is the skin now buried under a layer of fused skin is still sloughing off skin at the same rate. You can wind up with something similar to a cyst filled with sloughed skin matter. Gross!
Now the normal woman wouldn't even know this was transpiring just below her panties. But with my hypersensitivity from my pudendal neuralgia, the whole process is unbearable. Normal women only become aware of a problem much later when they lose sensitivity in their buttons.
At that point, my doctor performs a procedure to open up the fused folds and remove any trapped matter. It's a very minor procedure with only 2 or 3 sutures, but because of the area, patients must be in a very dark twilight sleep.
Patients who go through this procedure come out very happy on the other side because they can successfully flick their beans again.
I'm not a candidate for the surgery yet. My doctor gave me a steroid cream to help with inflammation. He also told me that when I apply it, I should try opening it up to try to reverse the fusion. If it doesn't get better in a few weeks, he told me to call and schedule the procedure.
I asked him what I could do for the pain in the interim and he told me not much. I can go up on the Neurontin or take opioids. Neither of those are appealing to me. I found this news pretty distressing.
When I left his office to go to the pharmacy, I started to feel nausious and panicky. The vision of my clit being raked with a toothpick coupled with the thought a surgical procedure made me feel sick and knowing that there's nothing I can do about the pain made me feel panicky, helpless and trapped in a body that continually fails me.
I bought myself a large Hershey's Symphony bar when I paid for my prescription and when I got home I took a Vicodin to try to take the edge off the searing pain in my clit from all the poking and prodding.
It was a rough night.
December 9, 2008
I still have intense feelings of rawness and burning. I'm taking every precaution to ensure that it's clean and dry, but that doesn't seem to be enough. I think my change in shampoo may have something to do with it. Perhaps it's causing some irritation.
I don't know for sure, so I'm headed back to my doctor's office tonight. I was scheduled for a wax job, but I thought it would be better to figure out what's wrong with my snatch before I subject it to more torture. This sucks!
November 25, 2008
He also found fissions, or tears in my clit, which could have been cause by trauma or just from the presence of yeast. I think the tears were cause by wearing pajama pants to bed. I would guess tossing around caused the seam to rub me in all the wrong places. Either way, the only thing I'm wearing to bed from now on is socks, maybe a T-shirt if it's cold.
My doctor wrote me a prescription for Climdese, which helps treat the bacteria levels in my cootie catcher. It's a cream that you insert. Fun stuff. And the best part is, as the goo is seeping out of me, it's getting lodged in the folds of my clit and causing me a tremendous amount of pain and discomfort. I've had to get in the bathtub 2 or 3 times a day to clear it out. It's so painful.
This is the first time I've had a pain flare in my clit and it is horrific. The increasing scope of my condition makes me worry that my nerve damage is getting worse. God knows it's not going to get better without surgical intervention, if then.
I really try to keep those worrysome, negative thoughts out of my head. It's completely out of my control. Besides, I have so much to be thankful for in my life.
You can't forget that life, in any state, is a gift. This is the time we have to enjoy. In the words of the late Joseph Campbell, "follow your bliss."
November 20, 2008
All of Monday I had all this burning pain. It felt like the skin in that area was stretched to the breaking point. I had no idea what was going on down there.
When I got home from class that night, I had a private moment with my mirror and discovered a swollen screaming red rash all over muzzle. I was horrified. I had no idea what would have caused it.
I went to sleep with the hydrocortezone and the next morning it had cleared up. But as Tuesday wore on I started to feel the familiar rawness of a yeast infection. I was really not happy about that.
My best guess is that my clam did not enjoy a night of sweating in panties and jeans at the concert. I think it might be something like adult diaper rash, minus the adult diaper. How disgusting am I?
I took a Diflucan that night. Wednesday morning things seemed to be better, but I noticed that my hot button was irritated. When I took a shower that night my clit really started to hurt. It felt like someone had sanded it, even the slightest contact was jarring.
I am officially in a flare. Everything down there burns. I don't know what's wrong. I changed shampoo and I know sometimes that can set things off. Perhaps it's just a nerve flare from the trauma of the last few days. I have no idea.
I had to take pain medication today to manage it. That's my last resort and I never take it during the day, but I'm miserable. My clit is still raw and my baby shute is on fire.
I hope this gets better soon. It's especially distressing because I don't know what's wrong. Over the years I've become pretty in tune with my pain. I can usually pin-point what started the pain, but not this time. I think it's almost entirely vulvodynia related. Something irritated my skin and I'm paying for it. I'm sure my pudendal nerve has flared from the pain signalling.
I'm seeing my doctor first thing in the morning. I hope he can help me.
November 17, 2008
Last Friday was the best night of my life. My boyfriend and I went to see my favorite musician, Butch Walker, at the North Star Bar in Philadelphia. It was the best crowd I've ever experienced. Everyone was quiet and respectful and everyone knew the words to every song, even the songs from his latest album, which was release three days earlier. We die-hard fans have our ways of hearing his music before it hits the streets.
My boyfriend isn't too well acquainted with Butch's music, but he knows a few songs. When the song "Don't Move" began playing, I reach out and grabbed his hand. I knew he knew that song because I put it in a mix I made for him 2 years ago when we fell in love. He pulled me close and as the chorus began, I looked down and he was holding a ring in front of me.
I was completely overcome with love and joy. I began shaking and tears ran down my cheeks. I absolutely could not believe what was happening. He slid the ring onto my finger as my hands shook.
"I hope you'll say yes," he said.
"You haven't asked me."
He paused and said, "will you be my wife?"
I couldn't take my eyes off him. I couldn't stop hugging him and smiling. After that moment, there was only one man in the room. He is the only person who could take my focus away from Butch Walker.
I really thought my boyfriend was incapable of romance, but I was wrong. He took my breath away. I was completely shocked. I couldn't believe he pulled it off. I had no idea it was coming. I never would have thought he would propose at the Butch concert. It was perfect, a dream come true.
I am so blessed to have him in my life. He has been my best friend and my biggest supporter in my daily struggles with vulvodynia and pudendal neuralgia. I am a very lucky woman and the best part is, I get to keep him.
I'm getting married!
November 13, 2008
I'm having some trouble with sleep and anxiety. The last few weeks I've had bouts of insomnia and an elevated level of day-to-day anxiety. I know daylight savings time really threw me off, especially since I was out of time that weekend. The darkness that begins to creep over the skyline at 4:00pm is really getting me down. But despite of the lowered mood and the shift in time, I can't fall asleep.
This produces one nasty cycle: I have trouble initially falling asleep, then I worry I won't be able to fall asleep, my anxiety level increases, and then I can't sleep. You would think there was a pill for that, well there is, actually, there are a few, and nothing is working for me. I take a low dose Ambien, but it hasn't been able to get me to sleep. I have drugs for anxiety, but they haven't been able to take the edge off to help me fall asleep.
It's a mess. I'm seeing my psychiatrist on Monday to tweak my drugs, but until then I have feeling I'll be pretty tired.
On top of the anxiety produced by trying to go to sleep, I've been really anxious about school. I feel low and panicky when I think about having to go to class.
So this leads me to wonder, is this seasonal depression? I've always loved the fall, so that seems unlikely. Is it stress from the end of the semester? I'm in the home stretch, but the concepts in chemistry have become extremely complex. Could it simply be that the efficacy of my drugs have plateaued and I need to boost them? Maybe it's all of the above.
Whatever it is, it's taking a serious toll on me. I might go buy an over-the-counter sleep aid to get me through the rest of the week.
November 7, 2008
It was my first time in Bean Town and I absolutely loved it, but the travel was hard on my moose knuckle.
First of all we flew Air Tran and the seat was so hard, it felt like I was sitting on a wooden chair. I balled up my winter coat and sat on it, but that didn't make much of a difference. I contorted myself into a position where I wasn't putting pressure on anything sensitive and fell asleep.
From the airport we took a bus and then a train to a friends house. The public transportation in Boston is fabulous. It's convenient to get anywhere without ever getting into a car.
That would be great for anyone, unless you can't sit on hard surfaces. In hindsight, I should have brought my cushion. Although it never even occurred to me. Honestly, I think I would have been too embarrassed to lug it around.
I was there with my boyfriend and some of his closest and oldest friends. I didn't want them to think, "oh look, there's Nick's clippled girlfriend. What's wrong with her? Why is she carrying a cushion?"
Sometimes you want to keep your private business private. I don't like raising the eyebrows of his friends and family. I don't want to give them any reason to think that he shouldn't be with me. I hate being judged and condemned for something I can't help, especially because its something that doesn't impair my ability to be a strong and loving partner.
Don't get me wrong, it's human nature to judge and be concerned for the well-being of someone you love. But in my case, it's so difficult to explain. People may be curious, but as soon as you start using terms like "chronic pain" and "vagina," they want to run.
I'm still flared from my trip, but I'm managing. I had such a wonderful time. It was definitely worth the discomfort. But in December I'm flying Air Tran again and I'll definitely be bringing my cushion.
October 6, 2008
As I've become more active in the online vulvodynia community, I've felt compelled to use my name and not an alias. This is who I am, this is what I live with and I shouldn't be ashamed.
I made the decision to use an alias because I thought my family would be embarassed if they knew I was sharing the woes of my cha cha with the entire world. Over the last year, I've become more open with my family. They all know what's going on down there and a number of family member have read my blog.
I think reading my blog has helped them understand me and what I've been through. The first 4 years were rough both physically and emotionally, but I couldn't talk to anyone about it because I was so ashamed. I didn't think anyone could understand. I thought I was completely alone.
I have a completely different life now. I'm well both physically and emotionally for the first time. The last real demon clouding my mind, annorexia, is in a state heibernation. I'm fortunate to have the love and support of my family.
My mom frequently asks me, "how's your part?" She hates the word vulvodynia because it sounds like vulva, but she like the name pudendal neuralgia, although, she can never remember it. Baby steps, right?
October 2, 2008
It's chilly and blustery outside and I didn't want to be cold. I was freezing my toes off last night at school!
I'm still in some pain from my record/rule-breaking weekend, but the flare seems to be subsiding. As many of you well know, vulvodynia and pudendal neuralgia can make pants seem like torture. I've got a pretty good system: baggy pants, a belt and commando (no panties).
This is tolerable because I stand. As far as my cooty-catcher knows, I'm still in a skirt. There's no contact or pressure from the pants on my goods. Only problem is, I don't have propper footware to complement my outfit.
I bought Dansko's for my job, unfornately they're brown and my dress pants are black and I can't find any black dress socks.
I look like I got dressed in the dark! At least I'm not in any extra pain. I'm learning more and more that there are ways to lead a functional life, pants and all, while living with chronic pelvic pain. It may not be pretty at times, but it works.
September 29, 2008
I've gone to a lot of trouble to accommodate my never pain: I stand all day at work, I use the kneeling chair on occasion, I use a cushion in the car, I recline at home and avoid sitting. And for the most part, I've been doing well, certainly better than a year ago when I was in pain every day.
I use a compound for the vulvodynia at times, but sometimes it irritates my urethra, so my usage is sporadic.
My partner has been having some personal issues that have taken a very serious toll on our relationship. Last week was rough, but by Friday we had talked things through and we were back on track.
Makeup sex is the best part of a difficult time and let's just say that I was glowing on Friday night. Virtually no pain. Saturday, we needed the makeup some more, if you get my drift, but I wasn't physically ready.
I've always had the policy with my partner that I need at least a day off to recover, but I'd been doing so well with pain management and we were suddenly doing so well as a couple that I didn't want to stop making up.
I felt pain immediately and I thought it would diminish as we continued but it didn't. I was still in pain hours later. I realize now that by breaking my own rule, I started a flare. Two days later and I'm still in the same amount of pain.
I made a poor decision, but sometimes I just want to forget I have vulvodynia and live in the moment. I have to learn that there will be other moments and while the moment will pass quickly, the pain caused by not respecting my physical needs will last for days.
September 24, 2008
I'm sure you've all seen the ad campaign: What's Your Anti-Drug? The commercials show teens doing things that make them happy or challenge them and make them never want to try drugs. It's a little hoakie, but it stuck in my head.
Last night while I wasn't paying attention in class I posed the question to myself. Of course, in my case, the drugs are painkillers and narcotics legally prescribed by my physician.
I hate taking hardcore pain meds. I take them as a last resort or before going to bed in the homes of knocking out the pain signals. That might not be scientifically accurate, but it's helped me before.
I realized there are a number of things that I do to help reduce my pain or at least distract me from it.
-School is a big one. Even though those awful desks give me some grief, being so busy with school keeps me on track.
-Home improvements. When I hit a low, I usually pick myself up being doing something to improve my house. Even little things leave me so satisfied and content. Last weekend I got down on my hands and knees and scrubbed the bathroom floor. It looks great and it made me feel great. I may have inadvertently gotten high off the cleaning products, but I'm still going to count that as an anti-drug scenario.
-Being outside. Fall is my favorite time of year. You won't see bluer skies or prettier sunsets all year. The air is crisp and invigorating. I love being surrounded by nature. It makes me feel at peace and grateful for my life.
-A heavy movie. It doesn't even need to be even have to be a particularly good movie, as long as I find myself completely immersed in another world. Action, Fantasy, Thrillers, especially on the big screen. It's really nice to leave my life for a couple hours and be somewhere else.
-Lighting candles and opening the windows at night. This is something I used to do in my single days all the time. Now that I'm cohabitating, I don't have a lot of opportunities to light candles and relax. There isn't a lot of peace in my home. I've vowed to create a sanctuary for myself with candles, relaxation music and a fountain.
-A hot bath with lit candles. Can't get any better than that.
So, what's your anti-drug? What reduces or at least distracts you from your pain?
If you can't think of anything, you've got homework to do. Find something that beings you some peace and makes you happy. There's something out there for everyone. You just have to look.
September 18, 2008
September 11, 2008
-Driving a Car
-Working at a Desk
-Seeing a Movie in the Theatre
-Wearing Pants, Especially Jeans
-Going to the Bathroom
This is just a short list of mundane things that people do without thinking.
Living with vulvodynia and pudendal neuralgia, I have to take my vag into account when I do just about everything.
It's important to note that sex is not on this list because I never got to enjoy sex without pain. It was terribly painful from the first time, but now I'm thankful for every chance I have to enjoy sex with less pain.
September 9, 2008
The woman featured in the article had a story so similar to mine. It gave me a lot of comfort and hope. The word is getting out, ladies! The issue is on news stands now. Check it out.
August 27, 2008
I've got a manageable setup in my office: I've got me kneeling chair and my standing desk. I can get through the day without too much discomfort. My pain increases over the course of the day, but by 5:30, I'm usually home and reclining to take the pressure off my nerve.
I no longer have that luxury. I leave work, get in my car, drive to class and then plant myself in a rigid desk. I can't usually contort myself to tolerate an uncomfortable seat for a small duration of time. But last night, there was no comfortable position.
By the time I came home, I was in bad shape. I'm going to have to start bringing a cushion to class. Hopefully that will be enough. I don't want to draw negative attention to myself, but I don't have a choice. I'm not going to sit back and cause myself unnecessary pain.
Last night I found myself feeling frustrated and discouraged. I realized how much my pudendal neuralgia and vulvodynia have progressed over the last 2 years. They're getting worse and I don't know if I have the ability to stop them.
I still believe I made the right decision to put off the pudendal nerve decompression surgery, but I know it's on the horizon. Maybe I should try another nerve block.
August 25, 2008
Perhaps the most exciting part of the meeting was the sense of connection I felt. We're beginning to know each other a little bit and it makes it easier to discuss life and pain.
Thank you again to my participants.
Maybe next month we'll have a few more visitors.
August 19, 2008
August 18, 2008
The atypical cells extended all the way to the edge of the mole, so to ensure that he successfully removed everything, he must reopen the now healed incision and check. Hopefully he'll be able to do it in the office tomorrow. If not, I'll have to have the remaining tissue removed in the OR.
I really thought it was nothing. I thought I was being overly cautious, but apparently I was just being smart.
There are two lessons you can take away from this experience:
1) if you have a skin growth that worries you, have it assessed by a professional
2) it's not a bad idea to sneak a peak at your butt-hole once in a while
August 14, 2008
I was scheduled to have my pudendal nerve decompression surgery on Monday; and my boyfriend had graciously taken three days off to take care of me. I decided a month ago to postpone the surgery, so we decided to take advantage of the time off and head to the beach.
I had a great time until the last day. I've managed to get through the summer almost entirely without underwear. It's been a pleasant stay-cation for my lady bits. But you can't go to the beach and the pool without your bathing suite, at least not in New Jersey, so my moose knuckle was tightly confined spandex for 4 days.
By the fourth day, my clit was throwing a fit. I was extremely uncomfortable and I had to cut my final day of beach time short because I was just miserable. To make matters worse, the I had spent 25 minutes on an elliptical machine the day before to work off some vacation pounds, causing my urethra to flare.
I was feeling pretty crabby, but after half a vicodan and a long soak in the tub, I started to feel a little better.
I've never had a problem wearing a bathing suite before, but pain is dynamic and ever evolving. I know now to limit my bikini time. It's frustrating, but by now I've grown all too accustomed to vaginal setbacks.
August 6, 2008
A week ago I went under the knife and had my poorly placed mole removed. I'm extremely fortunate to have to doctor that I do. This procedure was so routine to him, he had taken a mole off another woman's anus just 4 hours earlier that day!
Turns out my mole was on butt skin and not anal skin. My doctor said that aside from the size, it looked normal. In preparation for the removal I got a gigantic shot of lidocaine. It hurt so much it took my breath away. After that I had no pain, but I could feel all the pressure and pulling as he cut the mole out and then stitched me up.
The mole removal wasn't bad at all. I should get the biopsy results this week, but I'm not concerned. I did learn, however, that vulvar skin can be quite susceptible to melanoma. I was shocked. When I think skin cancer, I think of someone who spent too much time in the sun. There's a reason they call your privates "the place where the sun don't shine," but apparently that doesn't matter when it comes to skin cancer.
That's something to keep in mind. If you see an abnormal growth or discoloration in your lady canyon, have someone take a look. It could save your life.
July 29, 2008
Now this may shock you, but I make a point to get a Brazilian Bikini Wax every month. That probably sounds like sheer torture, but after doing it for 2 years, it's not so bad. And having a nicely maintained crab claw makes me feel less ashamed of that part. It may cause me a lot of problems, but at least it looks pretty.
After my first Brazilian, I got down on my hands and knees, spread my cheeks and snuck a peek. I wanted to see how thorough it really was. To my surprise, I discovered a freckle near my leather cheerio. I thought it was kinda sexy, like having a beauty mark. Cindy Crawford wishes she had this freckle!
Well two years have passed and that sexy little beauty mark has grown to be at least 10 times its original size. I'm sure most of you out there are pretty comfortable with a hand mirror by now. I was doing a routine check to see what was going wrong down there this week. While I was down there, I thought I'd take a look at my cute little freckle. It's not cute any more!
It's important to keep an eye on all your moles and marks. From afraidtoask.com, here's the ABCs of Mole Warning Signs:
Asymmetry can be assessed by comparing one half of the growth to the other half to determine if the halves are equal in size. Unequal or asymmetric moles are suspicious.
If the mole's border is irregular, notched, scalloped, or indistinct, it is more likely to be cancerous (or precancerous) and is thus suspicious.
Variation of color (e.g., more than one color or shade) within a mole is a suspicious finding. Different shades of browns, blues, reds, whites, and blacks are all concerning.
Any mole that has a diameter larger than a pencil's eraser in size (> 6 mm) should be considered suspicious.
If a mole is elevated, or raised from of the skin, it should be considered suspicious.
I was concerned about my mole, but I didn't know who to contact about it. I called my dermatologist and asked his assistant if he would look at a mole about an inch from my anus. She said, "Hmm, I'm going to have to call you back about that one." Fortunately, my dermatologist was willing to look at it. Now this man looks at my face, the thought of him a few inches away from my chocolate starfish was troubling.
At his office, I undressed from the waist down and he used a paper sheet with a hole in it to maintain my modesty. His nurse was in the room. I was lying on my back and he pulled my cheeks apart and poked around for what felt like an eternity. Finally he said, "Get dressed and I'll take to you in the office."
Great... He told me that I had an atypical mole that needed to be removed and biopsied. Unfortunately, he didn't feel comfortable removing it himself because of its proximity to my cornhole. He told me to try my gynocologist or a surgeon. My vulvodynia specialist happens to be both.
My dermatologist wished me luck and told me to tell him how it turned out. He said, "I have to tell you, this is the first time in 40 years I've ever seen something like that."
"Well I'm happy to be your first," I said.
"No you're not." We both had a good laugh.
That brings me to today. This evening, my vulvodynia doctor is going to shave the mole off my big brown eye.
I'm afraid to even ask what else could go wrong down there!
July 25, 2008
There is no woman alive who enjoys having her period, but for someone suffering from vulvodynia, it can be much worse. It's difficult to find sanitary products that don't cause irritation and pain; and you have to use something.
There are plenty of days when I go without panties. It's much more comfortable, but I don't have that option when Aunt Flow pays me a visit. Obviously, panties alone are not enough keep my pink from turning red. Gross, I know.
I used to use Always with Wings, and long before I knew the pain of vulvodynia, my skin would get so irritated. I would break out into rashes, but I thought that was the way it had to be.
I started using tampons young and I learned quickly that Tampax is the most uncomfortable female product on the market. If there isn't enough fluid to keep a Tampax tampon moist, it rubs against the inside of you like sand paper. The worst part is trying to take a dry tampon out. It's like intentionally giving yourself ropeburn.
OB's with applicator are the way to go, but their not available everywhere, and frankly, I want an applicator. I don't want to walk out of the stall in my office bathroom and look like I just left a crime scene!
As my vulvodynia got worse, my choices grew more and more limited. My skin would become inflamed I used a tampon for too long. But if I just used pads, the excessive moisture would cause me to develope a yeast infection.
What could be better than closing out your period with a raging yeast infection?
A few months back, when I was searching the web for information on vulvodynia, I stumbled across Glad Rags. At first, I thought the website was a joke. The name is a little vulgar, even for me. I decided to give the product a try and I've been pleased. Glad Rags are reusable cotton pads that allow your skin to breathe. They're a little bulky, but so much easier on my hatchet wound. On their website, they even have a testimonial section from women with vulvodynia.
Now, Glad Rags are my first choice. But, if I'm expelling a great deal of baby juice, I use a tampon. While the tampon is more painful, and there's a greater chance I'm going to cause a flare, I just find the whole experience so disgusting that I'd rather deal with some pain than feel like I've sprung a leak.
It's never pleasant to have your period, especially with vulvdoynia, but I've found a way to make it slightly less miserable.
July 21, 2008
July 17, 2008
July 15, 2008
July 14, 2008
July 1, 2008
June 13, 2008
June 11, 2008
June 5, 2008
June 3, 2008
May 23, 2008
May 15, 2008
May 8, 2008
I gathered up my nerve and asked my boss if he would allow the purchase of a height adjustable workstation. Although somewhat reluctant, he agreed because the price was reasonable.
May 7, 2008
April 28, 2008
April 23, 2008
April 16, 2008
April 11, 2008
Hopefully, the shock will wear off over time...
March 17, 2008
March 11, 2008
February 21, 2008
February 7, 2008
As I struggled with the last flare, I decided to take action. I ordered a new cushion and a kneeling chair to help keep me off me hot spot.
The cushion is from the Interstitial Cystitis Network. I learned of this product from the forum. I’ve tried cushions before with no relief. But people on the forum gave very positive reviews, so I gave it a shot. I use it in the car and it’s helping. I'm thinking about purchasing a second one for my boyfriend's car. I would definitely recommend the cushion.
I haven’t put the cushion through the rigors of protecting my butt during a full day at day. I don’t know how much help it would be, because ultimately I need to find a way to sit differently.
My mother suggested a kneeling chair. I called my doctor’s office to see if he recommended them to his patients, but his receptionist said she had never heard of them. Then I checked the forum. Again, people provided a positive response to the chair.
Unlike the cushion, with is less than $27, these chairs can be expensive. I needed to be sure it was worth the cost. After some searching, I found a back store that carried one model of the kneeling chair.
It was a perfect day to test it, because my gash were on fire. I arranged myself in the chair (it’s a little awkward) and found that the pain level was that of standing. I had just been sitting in the car (pre-cushion) and I was very uncomfortable. The kneeling chair really doesn’t allow you to put as much weight on your sniz.
I decided after sitting or kneeling in the chair for less than 5 minutes, I decided to give it a try. I ordered one online because it was cheaper than buying it in the store.
The kneeling chair hasn’t made its way to my office yet, because I park far away and I didn’t want to roll it or carry it up the street. It’s very light, but I guess that shouldn’t be a surprise considering there isn’t much to it.
I'll let you know if it can pass the test of time.
I strongly believe that the last round of injections caused a nasty flare. In my attempt to avoid the word worst, persistent and hopeless are two good words that come to mind. I couldn’t sit for half an hour without searing pain. I got desperate and emotional.
Honestly, the greatest blessing this past week was getting really sick. I felt horrible. Sore throat, fever, headache, dizziness and complete exhaustion. I got permission to work from home on Wednesday. Like a good patient, I stayed in bed all day. Subsequently, I had no pain for an entire day. Good start.
On Thursday, I stood almost the entire day. Some pain. Less burning. I still felt sick as a dog! Friday, I wasn’t strong enough to stand. I did everything I needed to do for the day and got permission to leave early. I got right back in bed. Again, less pain.
Meanwhile, I was getting worse instead of better. I had a blinding headache for 8 days. I was so weak, I got winded walking from my car to the house and I had to rest for a long time after completing simple tasks. My mother forced me to go to an urgent care center. There I was told that I had sinusitis. A doctor gave me antibiotics and a note excusing me from work on Monday.
I am feeling so much better. Modern medicine is incredible. I started to make a major comeback in a day and a half once I began my course of antibiotics.
Thanks to my sinus infection, I was able to rest and stay off my pudendal nerve. It was enough time to quiet a raging flare. I feel very fortunate for the time I had to recover. I thought I wasn’t going to bounce back from that flare. I read that if not done precisely, a nerve block injection could cause irreparable damage to the nerve.
I thought I was ruined.
January 29, 2008
Her career spanned 75 years. Even in her hospice bed, she continued to work, giving treatment advice to nurses and their families. She truly touched everyone that she met. She was an incredible woman.
There are many pelvic pain sufferers out there who have benefited from physical therapy. I know I have; and I thought you might want to know who to thank, in part, for the treatment you have received.
January 25, 2008
After the second round of injections failed, I became very disheartened. I wanted more information and my boyfriend helped me find it. He’s a master of searching the internet. He found an extremely comprehensive forum for people with pudendal nerve damage.
They discuss everything! At first, I found this site encouraging. There’s so much I can learn from people who have posted. But the forum also gave me a glimpse into the lives and daily struggles of these people. It was grim.
Some of the contributors have been living with nerve pain for many, many years. Some longer than I’ve alive. A lifetime of pain. Oh my God! That’s not how I want my life to be. One woman posted that after the pudendal nerve decompression surgery, that I so desperately wanted, she can now sit for 2 to 4 hours, 6 with breaks. That’s her best! I want this surgery to put an end to my pain, not slightly modify it. I had such foolish, high hopes. Now I’m terribly disillusioned.
As I reflected on my own pain, I realized that this is going to be with me for the rest of my life. I am going to be in chronic pain for the rest of my life.
I’ve tried, since my pain began, to lead a normal life. I’ve done everything I could to ignore my pain and maintain appearances. I want to be able to have sex whenever the moment arises, but I can’t. I’ve adjusted to taking a day or two off (sometimes weeks) for recovery. That’s ok with me. There are plenty of other things I can be doing that are almost just as fun. I refuse to let my vulvodynia interfere with my relationship.
It hurts me so much to admit that I am completely unable to prevent vulvodynia from interfering with my job. Like so many other people on that forum, I have to admit to myself that I can’t sit at my desk at work for 8 hours like everyone else.
When I wake up in the morning, I generally don’t have pain. In my sleep, I put no pressure on my pudendal nerve. Within an hour of getting to work, a persistent burning begins and some days I’m still feeling the same pain when I go to bed. I’ve tried cushions and doughnuts, but nothing has helped.
I realized this week that I just can’t sit like a normal person.
This might sound stupid, but to me, not being able to sit for extended periods of time at work means I have to constantly be thinking about my vulvodynia. I just want to ignore it, but I can’t. I have to accommodate it. Essentially, I feel like my vulvodynia is taking over my life.
I feel so defeated. I don’t want this life. I’m only 25. I can’t imagine a lifetime of pain. A lifetime of special accommodations. I don’t want to draw attention to myself. I don’t want people to look at me and think there’s something wrong. I just want to be like everyone else. But I can’t.
The question is, “Now what?” I have no idea. I have a desk job. Right now, I’ve got my computer and keyboard propped up on boxes of mailing envelopes and my mouse is on a hardback book. It’s totally ghetto. I’ve been standing for most of the day and I’m still in pain.
I don’t know how else I can accommodate this problem. I feel like I am back to square one. I need to sit down with my doctor and access my situation. I need a new game plan, but unfortunately I can’t see him until February 9th. Until then, I don’t know what I’m going to do with myself.
January 17, 2008
Part of my pain, I think, is due to just the ordeal of getting the injections. My doctor really has to get his fingers deep into my squish to find the best injection sites. As I’ve already discussed, my skin in that area is very sensitive and prone to irritation. I think I got a little roughed up in the process. No Pain, no Gain? I guess in this case it’s more like: More Pain, No Gain…
I honestly think I’m worse than I was before my appointment. With this problem you have to take chances, because you really don’t have a lot of options. I haven’t given up on this treatment. If anything I’m grateful for a chance to have more accurate injections. Hopefully, if they’re in the right place, I’ll see better results.
I also still have my surgery date for May, but my doctor said that he will only consider it if the pain is getting in the way of my daily life. I think I’m already there.
I had my second round of injections last night. It wasn’t nearly as painful this time. I’m hoping that’s a sign that the steroid is helping to reduce the nerve compression.
I was the last patient of the night and I think my doctor and his medical assistant were a little punchy. It helps to have a good laugh before a big shot.
While my doctor was prepping me, I asked the medical assistant if I could take a picture of the needle for my blog. I said, “I just want a picture of the needle. I don’t want a shot of it in me.” “No that’ll be on my blog!” my doctor chimed in.
I started to go numb pretty quickly this time, but I’m not nearly as numb as before. That’s probably a good thing because that first day two weeks ago I was having trouble containing my business. I really want to hold onto my record of 23 years without crapping myself. I consider it a personal best.
The next round of injections will be with a radiologist to ensure accuracy. Right now my doctor feels around inside me for the ligament that houses the pudendal nerve, with a scan he will be able to deliver the medication more precisely.
I have to wait until next week to call and find out when I can get my next shots.
(I'll post that picture as soon as I can get a hold of my camera cable)
January 14, 2008
On December 28th, I saw my doctor again, the third time about the same flare. I was angry. I felt like I was getting much worse instead of better and I wanted to know why. My doctor explained that pain is dynamic, conditions can change and they can worsen. It seemed that my pain was getting worse and it seemed that sitting the culprit. Burning pain following sex was still a factor, but nothing compared to what sitting was doing to me.
My doctor said that I would likely be a candidate for a different surgery, the pudendal nerve surgery, where the ligament that surrounds the nerve and the nerve itself are severed. This surgery is much more serious than the vestibulectomy. There is a longer recovery time and involves much larger incisions. The pudendal nerve innervates the opening of the urethra and the anus, so incontinence is rare but can result from the procedure.
My doctor told me, “you have to decide which problem you think needs to be addressed, the pain with sitting or the pain with sex.” The answer was obvious to me: I have to sit for 8 hours a day for my job. I don’t need to have sex every day. In order to continue working I must have something done. I am not interested in going on disability. I have big dreams that I’m not putting aside because of vulvodynia.
That day I got my first in a series of three injections to better determine my candidacy for the pudendal nerve surgery. It was extremely painful. I had never had direct contact on the nerve before. Sweet Jesus it hurts! My doctor had to feel around inside me to find to right spot for the first injection. When he found it, I screamed. I couldn’t help it. I was shocked by the intensity of the pain. Oh my God! Those nerves have got to go!
The needle has to puncture through the wall of the vag and then through the ligament and into the nerve. That takes a lot of force and a pretty deep prick. I shouldn’t complain too much though. Before they learned to do the injection through the vaginal wall, doctors were making injections into the pudendal nerve through the back of your legs. Can you imagine how long that needle would need to be? Good God!
After the injections, I had to wait to see if my doctor had successfully hit the nerve on both sides. He did! And for 2 days afterward all my business was completely numb except for some burning pain in my ass. No joke. I couldn’t even feel myself pee. It was weird. But it was worth it. Those injections put an end to the worst flare of my life.
I’m getting my second round of injections tomorrow. The pain has come back with sitting at work, but generally it subsides when I get home. I’m anxious to hear what my doctor has to say about the way my body handled the treatment and I’m hoping he continues to believe that the pudendal nerve surgery will work for me.
But the compound only did so much. The most effective way to quiet a flare was still higher dose of Lyrica.
Two weeks before Thanksgiving, I did 4 stupid sit-ups on a hard floor. It became uncomfortable, so I stopped. This VERY careless action started a flare that I couldn’t get under control. 4 stupid sit-ups! That’s all!
Unlike my normal flares, I was in pain virtually all the time. My only break from pain was when I first woke up in the morning, but as soon as I got to work and sat for a little while the pain came right back. And yes, I was sitting on my doughnut!
Over the Thanksgiving holiday, the pain seemed to clear up. From Friday to Sunday of that week, I was pain-free. But only an hour and a half into Monday that same constant burning returned. It was then that I realized that sitting was causing my problem.
I made an appointment with my doctor to discuss my conclusion. He agreed that sitting for 8 hours a day was most likely contributing to my pain condition. He suggested I try a block to see if that could knock out the flare.
He had never suggested a block before and I wasn’t sure what that meant. For a block, the doctor goes through the vag wall and injects a steroid and a numbing medication into the pudendal nerve. At this point, 5 weeks into the worst flare I had ever had, I was willing to do anything.
In order to have the injection, I needed someone to drive me home. The numbing medication sometimes made people a little wobbly on their legs, which could be very dangerous when your legs are controlling the progress of a moving vehicle.
I didn’t have a driver, so I needed to reschedule and come back. Because I was going to be traveling in the coming days, I decided to wait it out and try the injections over the Christmas holiday.