My life

[Danya (imported)]

My Chicago doctor always tested for E at the end of a weekly injection cycle. My Minneapolis gynecologist tests halfway between injections, to get something approaching an average between high and low values, which makes a lot more more sense to me. I'm relieved to be seeing a new doctor.

[Danya (imported)]

Last Wednesday, my gynecologist injected the corticosteroid Kenalog into my vagina. This was to reduce inflammation around the pudendal nerve. Fortunately, she first injected a local anesthetic. The size of the corticosteroid syringe and needle was truly awesome. She had warned me not to look at it, but I did. I'm one of those people who doesn't mind watching drawn blood filling the vial. .

She predicted that the injection would provide substantial pain relief within a week. So far, it seems to have made a small difference but I remain hopeful that in another few days I will have better results. If not, I will call the doctor and emphasize that we need to do more to reduce this pain. For now, I'm still in fairly major pain by late in the day.

I'm still supposed to avoid sitting as much as possible.

When I must sit, I need to use some type of invalid cushion. I had been using the inflatable invalid ring I've kept since my April surgery. It was better than sitting directly on a chair but the pain still increased while using it. [Another recommendation, which I stick with as much as possible: dont sit at all! ]

My condition is called pudendal neuropathy. Support sites have confirmed what I noticed. Sitting on a toilet seat is not at all painful. With it, every part of my anatomy involving the pudendal nerve is suspended in air, hence no irritation to the nerve.

I figured if I have some type of toilet seat contraption to take in the car and on interviews, I can avoid pain and further nerve damage. I've tried several options. Yesterday, I came up with the best solution. I purchased an inexpensive toilet seat at Home Depot. After removing the lid, I used masking tape to secure it to a polyurethane foam cushion I had on hand. I had already widened the hole in this to better fit my rear end. Turns out my home made cushion works extremely well. Although it could use another inch or so of foam, it is quite comfortable. The only thing left to do is cover it with an opaque cloth so it looks less like a toilet seat. Perhaps I should leave it as is. It could make a good conversation piece.

I'm meeting with a recruiter at 1 PM today. The location is only ten minutes away and the meeting won't last more than 30 minutes. I expect I won't aggravate my pain much during this time. Especially since I will use my toilet seat tush pain relief device for the drive.

[butterflyjack (imported)]

Hey Danya...take it with you to the interview..hehehe...They'll certainly remember you...(sheesh, the lady was carrying a toilet seat)...smooches Jackie

[Danya (imported)]

My modified toilet seat didn't work too well in the car, butterflyjack. It was too hard, even when I sat on the foam side. I felt every bump in the road a lot. It might work better if I use a wedge to compensate for the backward slant typical of car seats.

I'm feeling extrtemely discouraged this evening. I called my gynecologist's office this morning and left a message. I told her office that I'm not doing that much better in the week since the corticosteroid injection. I asked what else we might do, including increasing the dose of the anti-seizure medication. A few minutes ago, the doctor's nurse called. She told me that the doctor thought the injection would have given me a large improvement by now. I was instructed to gradually increase the anti-seizure med over the next three weeks. I see her again in 19 days. She will do another injection then. Beyond that, there's nothing else she can do.

Right now, it seems to me that I may get no medical answer to my pain. That is very upsetting.

There are several steps I will take to attempt to improve my situation without medical treatments.

1. I have done a lot of research on this condition. There is a doctor who used to work at the Mayo Clinic and now has a practice nearby. He specializes in my problem. One of his online papers demonstrates that with self-treatment, a number of patients were able to significantly reduce their pain over a period of several months. I will follow his self-treatment guidelines with the hope I will see a similar improvement.

2. I also may try to see this doctor. Without insurance, this may not be an option.

3. Starting tomorrow, I will start to stand for an hour or two at a time as I use my laptop for my job hunt. Although standing is uncomfortable, too, I don't have as much pain when standing. I want to see if I can work up to standing for most of a typical work day.

4. I will continue

to avoid sitting as much as possible.

When I do sit, I will use some type of support that keeps my perineum and vulva elevated.

Other medical literature I've come across states that the injections can take several weeks to be effective. Perhaps this will be the case for me, too. I hope so.

This is a very difficult time for me.

I'm taking what action I can to make it better. I desperately want to get back to a more normal situation where I can drive to a job without much pain, sit in a movie theater, and so on. Today, I still don't see how I could hold down a job. That is the major problem.

[Danya (imported)]

I don't know if I will continue writing about my chronic pain issue here on EA. In some aspects, it's way off topic for this thread and board. In a few other ways (particulaly in relation to GRS), perhaps it is not. My main concern is that I do not want readers to think my life is dominated by pain. For now, that seems to be the case even to me. At the same time, I realize I cannot allow my pain to rule my life. I'm working on learning effective ways to cope and live as normally as possible, while hoping I find an answer for long-term relief or a substantial reduction in pain.

I have been in severe pain most of the day, after a period of weeks in which my pain has been declining. As is typical for folks with this condition, the pain is usually much less in the morning and increases as the day wears on. For the first time, it was already bad when I woke up this morning. An hour ago, I gave in an took oxycodone.

This increased pain level may be a result of sitting on my modified 'toilet seat tush cusion' for nearly an hour last night, even though I felt fairly comfortable. One thing I have learned is that women (men can have pudendal neuropathy, too) often experiment with many sitting aids before finding the right one.

Today, I stood while working on the computer for over 3 hours. While standing, my pain lessened but was still fairly intense.

To help me get through this time

, there are a number of things I

can do. One of these i keeping in touch with friends. I am doing a bit of this by writing here.

[plix (imported)]

Hello, Danya! I am very glad to have the opportunity to communicate with you again. I am definitely sorry to hear about the pain troubles you have been experiencing. I hope you are able to find a way to overcome this. Even though this pain is a significant burden in your life right now, I do realize that you are about much more than pain and look forward to reading more updates regarding all areas of your life!

[Danya (imported)]

Hello, Danya! I am very glad to have the opportunity to communicate with you again. I am definitely sorry to hear about the pain troubles you have been experiencing. I hope you are able to find a way to overcome this. Even though this pain is a significant burden in your life right now, I do realize that you are about much more than pain and look forward to reading more updates regarding all areas of your life!

Hi plix,

It's great to hear from you! I have taken charge of my pain, to the extent possible. So I'm being very proactive in doing whatever I can to reduce it as much as possible. Some of the steps I have taken include: (I know this is not very interesting , and I first thought of putting this in the Q & A format pioneered by our very own Graylayer, then realized it might be considered plagiarism )

1. Finding better fitting (less binding in the crotch) underwear. These must be all cotton. I found some women's 'boy pants' that are better than my usual panties, but they're still not good enough. Any material touching my 'sensitive' parts sets off unpleasant nerve impulses. I may yet switch to men's boxers! I'm not ecstatic at this thought, but if they help reduce my pain so be it.

2. I constructed a new seating device made out of pool noodles and duct tape. I got the idea from a support site. It doesn't look pretty, but it works fairly well. To think that until last week, I had never heard of pool noodles.

3. Today, I stood at the computer for 5 hours with little pain. Hooray!

4. After reviewing my earlier 'pain' posts, some emails and info on support sites, I concluded I am experiencing a pain 'flare.' I think this is good news! It was very painful driving from Chicago to Minneapolis, but that pain subsided after a few days. It returned after I drove around one day for 7 hours going to interviews. Now I know better. At least I think I've learned my lesson. Flares can be brought under control, although it can take many weeks.

So what else is occupying your time besides this incessant need to write about pain?? (Oops! sorry Graylayer )

I have resumed taking photos. This isn't something I enjoy much during Minnesota winters, but it is a bit of good news.

Last week, I applied for a job at a company I probably don't want to work for and I didn't think I was well qualified for the job. Now they want a phone interview! What's a girl to do??

I'm glad you are doing well, plix.

[JessicaH (imported)]

I am very sorry to hear that you have been experiencing so much pain. I hope you can find some sort of relief very soon. Have you tried Botox injections in the pudundal nerve yet? http://www.pudendal.info/

Wishing you a speedy recovery, Jessica

[Danya (imported)]

I am very sorry to hear that you have been experiencing so much pain. I hope you can find some sort of relief very soon. Have you tried Botox injections in the pudundal nerve yet? http://www.pudendal.info/

Wishing you a speedy recovery, Jessica

Thanks for writing, Jessica, and for your good wishes.

It's always good to hear from you.

My pain is not nearly as bad as it was several weeks ago, and I am being very cautious to avoid aggravating things.

I spent some time today trying to find success stories treating pudendal neuralgia (PN). Support sites I've visited are good, although they leave me wondering if anyone finds relief. So I was glad to find a doctor that says if this is treated early, chances are very good the condition won't become chronic and, potentailly, disabling. I first saw my gynecologist within days of having this current major pain flare in early December and roughly a month after my drive from Chicago. So I remain very hopeful that, with time and continuing medical and self treatment, I will be fine. I'm keeping in mind that an expert in treating PN states that self-treatment can be very effective over a period of months.

I've read mixed reviews for the Botox injections. But then it seems like all treatments get mixed reviews. Up to and including surgical correction. This is a difficult to treat problem, something that I try not dwell on. I need to be upbeat and not get discouraged. Stress can also contribute to worsening symptoms.

[butterflyjack (imported)]

Hi Danya...Your last few posts have been encouraging...Keep at it...smooches jackie