Health Organization for Pudendal Education

I developed either PN or PNE from a botched hydrodistension of my bladder last July. I am in excruciating pain. Unfortunately, I have a neuro who only sees people every 8 weeks. When she "diagnosed" me she told me I just had an injured nerve in my spine/pelvis, which would heal itself in 6 months. I now know that's not true. It is impossible to ask her questions without an apt. and the next appt is the one already scheduled for me, the day before Thanksgiving. I have SO MANY questions about this whole PN situation, I wondered if someone could answer some questions:

1. My pain goes in cycles through the day. Early morning is fine and the pain builds up through the afternoon so that evening and night are horrible. I have to sleep on the floor. Is this common?
2. Boborygmus: This is the technical term for what I call gurgling guts. When I eat something, all of a sudden my guts just go wild and I end up with a lot of gas. Is this associated with PN or another condition.
3. Unfortunately, I have a sick cat and have had to lift sofas, crawl under beds, etc. too many times in the last few weeks. My neuro just handed me a prescription and said nothing about what to do or not to do. Is there a list of prohibited activities? I have already discovered the seating problem. Lying down on the floor and pressing my sacroiliac against the floor helps, as does the leg crunch. What else is good and to be avoided?
4. Before I actually feel the excruciating pain, I feel the following: tingling lips, gummy eyes, heart hammering... does anyone else experience this?

Finally, I live in the DC area. I cannot wait 8 weeks between appointments to see the neuro. She is also very stingy with the Lyrica for some reason, treats it like it's demerol. Her office contacts me by text messaging if I have a question. Usually the answer is either contact your primary care MD or go to the emergency room, neither of which is helprul. Can anyone recommend a neuro in the DC area who is familiar with PN and PNE who can baby sit me?

Thanks in advance, yours in pain,

Bathsheba

It's really common for the pain to be worse as the day goes on, especially with sitting. If you find an activity makes your pain worse, that is probably something you should try to limit. Each person is different, though.

Dr. Marvel and Dr. Dellon are both in Baltimore. Maybe you could learn more about each of them, and choose one of them to see instead.

I'm really sorry for your painful experience.

I know that Calluna was in exactly the same situation (love the name change ) Bathsheba, rather exotic. She gave up waiting to see if her nerve would heal after 18 months (I think) I know hers was due to 'insult' from a surgical procedure, she woke up with the pain and is now recovering from a recent decompression. Fingers crossed.
1) is a common problem Dr Hibner mentions this in his paper http://www.pudendalhope.org/sites/defau ... Hibner.pdf
saying that the problem is worsened by sitting and is progressive throughout the day.
2) I don't think it has anything to do with the PN condition, maybe it could be linked with a medication you have OR if this symptom developed soon after you noticed your PN pain it could be because you are worried about the pain escalation which has affected your digestive system (I know I just eat more Ggrrr!) The emotional factors of PN should not be ignored.
3) Avoid 'proper' sitting, and lifting heavy anything, never mind beds. Trying to keep active is a problem many people walk and swim (no frog kicks) To be honest it's tricky to say what can work universally (possibly nothing) but a lot of a little rather than too much of one thing (I know climbing stairs doesn't work well for me)
4) Can't help with this one, sorry.
Take a look at the home pages to see if there are any PN aware doctors in your area http://www.pudendalhope.org/node/58. Good Celeste got there first, as I don't even know where DC is (English) Many neuro's haven't a clue as they concentrate on the central nervous system where as you probably need someone who can address problems with the peripheral nervous system.
Take care
Helen

Bathsheba, there are also some good PT's in the DC area who might be able to shed some light on your case.

You can check out the list of PT's here: http://pudendalhope.org/node/63

@ Celeste:

Thanks for the reference to Dr. Marvel. I am submitting the paper work to see him. Hopefully, he will get me on the right track ..... unlike where I am now.

I see that pain worsening in evening and night is a common symptom. My first neuro appt. was almost a month ago. She handed me a prescription and that was it, so I am literally clueless. Someone referred me to this website, otherwise I would know nothing about what's going on in my body.

I looked at the Lyrica website and they say that "gas and bloating" ARE side effects of Lyrica. I guess I just have an unusually severe reaction.... What's going on in my intestines is super gas. As long as I know it's not related to the underlying condition, I can live with it.

Thanks everyone for your responses.

You will love Dr.Marvel. I just saw him for the second time and he is really trying to help.I just had my first ct guided nerve block at the University of Maryland medical center. They are also wonderful. I feel better, but sitting at a job 8 hrs a day is sooo difficult. Good luck!

Terri