Recovery

I went into work on Wednesday and my boss sent me home early because I looked like a zombie.

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.

Post-Surgery Was Ugly

I was ok when I woke up in recovery, but within a few minutes of getting to my mom's house I started to feel horribly nauseated. I choked down some cream of rice and lay still. As the day wore on a developed a migraine. I toke oxycodon for the pain, but it didn't seem to help much.

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.

6:30 a.m. Reporting for Surgery

I'm pretty nervous about tomorrow. I know it's minor, but the pain has the potential to be major. I don't know how well I'm going to sleep tonight, thinking about my early morning.

Hopefully, I'm worried for nothing. I'll know when the anesthesia wears off.

One Week Until Surgery

I had my pre-op last week. My doctor reviewed my responsibilities before surgery and reassured me that the procedure was very simple. I asked him if he could show me on the screen where he was going to cut. Although this was out of the ordinary for him, he happily obliged.

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.

Scheduled for Surgery

I had another really unpleasant clitoral pain flare over the weekend. I discovered material lodged in a fold of skin that I could not remove. I tried warm water in a syringe, I tried my bare hands, I even tried a toothpick. You want to talk about painful! ! ! Oh my God, if I ever questioned whether or not I had pudendal neuralgia, I can't now. The difference in sensation between my inner thigh and my mound of Venus is unbelievable.

Finally, the next day, after repeated soakings and washings, I was able to dislodge the material. I feel better now, but this second incident has proved to me that I need surgical intervention to open up that fold of skin.

In the meantime, I'll continue to use the steroid ointment to open the fold myself, but I'm not optimistic. I'm scheduled for a Lysis of Labial Adhesion on Monday February 9.

All I Want for Christmas Is a Brand New V

There always seems to be something going wrong in my netherlands. Here's the latest.

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.

Busting My Ass In School and Causing a Nerve Flare

I am literally busting my ass in school. I work full-time and this semester I'm taking two classes. I normally only take one. Given the circumstances, I have to sit in a classroom for 4 hours a night, 3 days a week. Only 2 days in and I'm starting to feel the pain. Vulvodynia and academia don't mix.

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.

Wholy Moley: It's Pre-Cancer

My vulvodynia specialist called me last Friday and told me that he got the results of the biopsy and the mole was pre-cancer. If left untreated, it had the potential to become malignant. I'm surprised, and so is he.

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

Vulvodynia Pain Management: Putting Off the Pudendal Nerve Surgery

I've been grappling with whether or not to go through with my surgery for the last month.  I was scheduled to go under the knife in August, so I had to decide quickly.  

I had been in a terrible flare for nearly 2 months, and surgery seemed like my only hope.  But the flare finally subsided 2 weeks ago.  Since then, I've lost that sense of urgency.  I began really thinking about what surgery would entail and the possible outcomes:  

-I could get better after the surgery

-I could stay the same

-I could get worse

The question was: am I ready to put myself through such and ordeal for those results?  Worse than that, there's nothing after surgery.  It's truly the last resort.  I'm not ready to explore my last resort.  As bad as things can be, I'm terrified that they could become worse.  You can't undo surgery. 

Right now, I have a lot of options.  I can increase medication, change medication, increase compound use, change compounds, and most importantly, I can change my routine to truly accommodate my physical needs.  

I've fought long and hard to have the kneeling chair and the height adjustable work station, but I don't always use them.  Some days I'm tired and I just want to slouch in a normal chair and limp my way through a work day.  By the time I leave work, the consequences of that decision are evident and often the flare I've created lasts for days.  

Obviously, I'm not doing enough personally to avoid pain.  I need to do more.  I'm now treating my lady parts like fine china.  No more sitting in normal chairs at work.  I stand most of the day and when I get tired or I really have to concentrate on computer work, I'll use the kneeling chair.  I've been able to avoid a long-lasting.  I'm still in pain for portions of the day, but, thank God, it's passing.  

At home, I recline as often as possible.  I'm very conscious of how I arrange myself on any piece of furniture.  I also have to be careful sitting down and getting up.  

The other night I was in a hurry to get in the car and my butt hit that seat too hard at just the right angle.  Pain started immediately and there was nothing I could do to reduce it.  On the ride home, I was worried I had started something terrible.  But I reclined for the rest of the night and by the next morning my pain level was back to zero.  

I'm learning to really listen to my body.  As soon as I start to feel uncomfortable, I know that something has to change.  I've been relying on my doctor and medication to make me better, but I haven't done enough personally to make myself better.  

When I come to the point where I can no longer avoid the pain, I will know that it is time for surgery.  But while it is in my hands, I'm going to do everything in my power to manage my own pain.   

Faced with a Decision

Christmas came and went and as soon as I returned to my desk at work, my pain came screeching back. Now 8 weeks into this seemingly endless flare, I made another appointment with my doctor. I was becoming extremely agitated and uncomfortable. I was losing my ability to cope.

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.