From IC to PNE - a new blog for pelvic pain sufferers

[ICsmiles]

There is a new blog for pelvic pain sufferers. It addresses issues for those of us with both IC and PNE. You will relate - whether you have one condition or both of them.

Check it out!
http://scaseyquilts.wordpress.com/

[VCNJ84]

There is a new blog for pelvic pain sufferers. It addresses issues for those of us with both IC and PNE. You will relate - whether you have one condition or both of them.

Check it out!
[url]http://scaseyquilts.wordpress.com/]

Cool blog. I like your bluntness. I try to be that way as well in my blog.

I don't have an entrapment, but during pelvic floor therapy my therapist recently told me my pudendal nerve is inflamed. It sucks, I get shooting painds b/c of it.

Do u see a separate doctor to treat this nerve?? Or does your IC/V doctor treat it? Thanks.

[ICsmiles]

Hi VCNJ84,
Thanks for sending me the link to your blog! :dance: I think your writing is helping a lot of people who are going through very similar experiences. There are so many variables to chronic pelvic pain, and so many types of doctors involved, from uros to generalists, and they will all tell you different diagnoses, depending on their training, their experience - and bias.

I was diagnosed (in this order) with vulvodynia, urethral syndrome, IC, and finally, after 15 years of pain, pudendal neuralgia, which was verified as pudendal nerve entrapment. My doctors now believe that my original problem could have been nerve entrapment, specifically of the perineal branch of the pudendal nerve, which innervates the urethra and base of the bladder. The damaged nerve firing with pain signals for so many years may have been the CAUSE of my IC!
When you wrote about having a "sharp" pain that none of your doctors could diagnose -- the hair stood up on the back of my neck! Does it feel like a knife, or shard(s) of glass anywhere in your vulva? That's what it felt like for me. None of the bladder treatments in the world could touch it. I was told it was "referred pain" - bah!

To be diagnosed with any kind of pudendal nerve (or other nerve) problem in your pelvis, you would need to see a pudendal nerve specialist/surgeon. There are very few of these specialists in the entire U.S, and it often involves traveling to see them. You can read about them, and pudendal neuralgia, or pudendal nerve entrapment, at www.pudendalhope.org or www.tipna.org. Read about symptoms and see if it matches your "sharp" pain. I went for years having to push my sharp pain into the background of my consciousness and take pain pills to keep working and living my life. Now I wonder if I had been correctly diagnosed at the beginning, if it would have turned out differently. I am now at the surgery stage, and have received new hope from Dr. A Lee Dellon, a world-renown pelvic nerve surgeon. He just released a new chapter on pelvic pain, which you can find for free at www.dellon.com. Just click on his book, "Pain Solutions," and you will see all the chapters, ready to read or download. Chapter 12 is on pelvic pain.

There are also other posts on my blog about pudendal neuralgia - I am trying to write for those of us who have both IC and PN or PNE.
http://nervy.posterous.com

[ICsmiles]

Hi IC friends and PNE friends,

Just wanted to apologize for my lapse in blogging. My last entry was about having surgery on Halloween -- but I ended up NOT having the surgery because my pre-op nerve blocks failed -- which meant the surgery probably would not have helped, and so we cancelled.

It has taken me some time to come to terms with my situation and find my path again. I was SO hopeful that surgery would "fix" my damaged pelvic nerves and my body would heal (including my bladder) But it was not to be, possibly because so many years have gone by - 16 years - while my pain grew worse and worse. Now I am learning how pain itself can become a disease, and take over communications between the central nervous system and the brain. Even if the original cause of the pain is corrected, the "pain grooves" can be worn so deep that they are there to stay.

That's what I have been trying to wrap my brain around -- and to accept. Maybe I can't be "fixed." Maybe the next stage is more about treating the pain. My surgeon, Dr. A Lee Dellon, suggested that I try neuromodulation of my sacral nerves. I asked him if he meant the "Interstim" which we all know is NOT for pain, my main problem. He was not familiar with it, so I knew i would have to do my own homework -- I found out that there are stimulators OTHER than the Interstim that can be used off-label for pelvic pain. (Read Amanda's story at http://www.pudendalhope.org/node/67 ).

I also found Dr. Joshua Prager, one of the world's foremost authorities on chronic pain syndromes and treatments. And I have an appointment with him THIS Monday, Dec. 19. It wasn't as easy as calling and making an appointment -- I had to get a referral from my surgeon, along with some medical history and records for him to review. But I got in.

Dr. Prager is director of the Center for Rehabilitation of Pain Syndromes (CRPS) at UCLA and also established California Pain Medicine Centers - at http://www.californiapainmedicinecenter.com/profile. I have found many articles and videos of Dr. Prager, especially his work with CRPS, Complex Regional Pain Syndromes. He is president of the North American Neuromodulation Society, and has participated in numerous studies related to spinal cord stimulation. So that may be one of my options. Another option is a pain pump, implanted at the site of the pain, so that only a small amount of pain medication has to be used, compared to the amounts we have to take orally.

One possible option that I am very interested in, and curious about, is the use of ketamine for severe chronic pain. I just found out from one of my friends with pudendal nerve entrapment and bladder pain that she has been officially diagnosed with CRPS and will be undergoing ketamine transfusions. Without going into the pharmacology of ketamine, I will just describe in layman's terms what it does: it can "reset" the brain and central nervous system back to a normal state -- so that the pain is no longer there when the patient wakes up! Sounds like a miracle, doesn't it? Well, there are many variables and a wide range of protocols -- from a one-time trial infusion for a few hours to being put into a "ketamine coma" for 5 days for the most severe cases. (The comas are only done in Mexico and Germany at this time because of the risks involved.)

So -- I have no idea whether I am a candidate for any of these treatments or some other treatment. i only know that SOMETHING has to change, as i'm bedridden, can only stand for 15-20 minutes at a time, cannot sit or walk. It feels like I am losing myself, piece by piece, while I'm being swallowed by pain.

So as you can imagine, while I dread the pain of traveling and getting in a wheelchair, I'm very eager to meet Dr. Prager on Monday (day after tomorrow!) and finding out what he recommends.

I will update as soon as I know more!

Shannon aka ICsmiles

[kadi]

HI Shannon,
There has been some discussion here lately that ketamine can actually damage the bladder. Please get in contact with icnmgrjill. She knows about it.
I hope you find relief soon,

[ICsmiles]

Thank Kadi,
Yes, you are right. Ketamine, especially the stuff that is abused on the street, with names like Special K, has caused IC-like damage to the bladder. I've read that emergency rooms and hospitals have been reporting these findings and the problem has been growing.

I am discouraged that I may not get to try it because of that. But I know four people who have had medically-controlled infusions with amazing results. These are people who have pudendal neuralgia and bladder hypersensitivity (two who were previously diagnosed with IC but told later that they actually did not have IC.) I don't know how much that matters, when you have bladder pain, whether it is from IC or from nerve damage.

My greatest pain is where it feels like a knife is stuck into the tissue to the left of my vagina. I dream of something - anything - that could release me from that terrible pain even for a couple of hours. I have ice on it constantly just to keep the burning, stabbing sensation muted. :(

Wish me luck!

[Sweetpea85]

Hi,
I dont know if I have this I do know I have IC but I get nerve twitching everyday at least somewhere. But I recently have been having lots of pain on my right side I dont know what its called but its not the ovary because I know its higher but near the pelvic there are side bones to your leg with nerves. I have an overican cyst removal last march on that side. But ever since that surgery been dealing with all these health issues... But lately its been hurting alot and shoots a pain all the way to my knee cap. I try stretching to help the pain and it seems to help when I stretch but the pain started when i was perscribed estrace cream and i noticed the estorgen levels rising in my body and now have caused this pain. I stopped taking the cream but ive still been in pain. Sometimes it effect all the way down to the bottom of my foot.I know it has something to do with my nerves I just dont understand it. I know when I had my ovarian cyst removal the bottom of the middle of my foot was numb but just went back to normal over a few weeks. Just wondering if any of this has to do with PN

[ICsmiles]

Hi Michelle,
I am so sorry you are going through this! It just isn't fair, is it?

I wonder if your surgery could have compressed or pinched a nerve somewhere. That can happen.
You might want to check out www.pudendalhope.org and read some of the information on the site to see if you relate to it. There are also a lot of people on the forum who have experience with PN (pudendal neuralgia) and PNE (pudendal nerve entrapment).
The direct link to the forum is http://www.pudendalhope.info/forum/
You have to register to read Case Updates and Reviews, which is one of my favorite areas of the site. You get to see how people are doing after treatments or surgeries they have tried.

Let us know how you are doing. Having IC alone is hard enough, but having both IC and PN or PNE is double trouble. I hope your symptoms ease up soon. ;)

[ICsmiles]

This blog has been moved to
http://scaseyquilts.wordpress.com/


There is a new blog for pelvic pain sufferers. It addresses issues for those of us with both IC and PNE. You will relate - whether you have one condition or both of them.

Check it out!
http://nervy.posterous.com

[ICsmiles]

Hi VCNJ84,
Thanks for sending me the link to your blog! :dance: I think your writing is helping a lot of people who are going through very similar experiences. There are so many variables to chronic pelvic pain, and so many types of doctors involved, from uros to generalists, and they will all tell you different diagnoses, depending on their training, their experience - and bias.

I was diagnosed (in this order) with vulvodynia, urethral syndrome, IC, and finally, after 15 years of pain, pudendal neuralgia, which was verified as pudendal nerve entrapment. My doctors now believe that my original problem could have been nerve entrapment, specifically of the perineal branch of the pudendal nerve, which innervates the urethra and base of the bladder. The damaged nerve firing with pain signals for so many years may have been the CAUSE of my IC!
When you wrote about having a "sharp" pain that none of your doctors could diagnose -- the hair stood up on the back of my neck! Does it feel like a knife, or shard(s) of glass anywhere in your vulva? That's what it felt like for me. None of the bladder treatments in the world could touch it. I was told it was "referred pain" - bah!

To be diagnosed with any kind of pudendal nerve (or other nerve) problem in your pelvis, you would need to see a pudendal nerve specialist/surgeon. There are very few of these specialists in the entire U.S, and it often involves traveling to see them. You can read about them, and pudendal neuralgia, or pudendal nerve entrapment, at www.pudendalhope.org or www.tipna.org. Read about symptoms and see if it matches your "sharp" pain. I went for years having to push my sharp pain into the background of my consciousness and take pain pills to keep working and living my life. Now I wonder if I had been correctly diagnosed at the beginning, if it would have turned out differently. I am now at the surgery stage, and have received new hope from Dr. A Lee Dellon, a world-renown pelvic nerve surgeon. He just released a new chapter on pelvic pain, which you can find for free at www.dellon.com. Just click on his book, "Pain Solutions," and you will see all the chapters, ready to read or download. Chapter 12 is on pelvic pain.

There are also other posts on my blog about pudendal neuralgia - I am trying to write for those of us who have both IC and PN or PNE.
http://nervy.posterous.com

This blog has been moved to
http://scaseyquilts.wordpress.com/