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Kara29
03-03-2008, 11:47 AM
:welcome: All PNE/PN patients and their family members and friends. The Good News about PNE/PN is that there are Doctors out there who recognize it and have taken large steps to treating it and getting the word out. It's all about finding a Doctor who understands and has knowledge about how to help you get moving in the treatment process.


Pudnedal Nerve Entrapment or Pudnedal Neuralgia can be a related condition to IC or it can exist all on it's own. It's categorized at the moment as being a Chronic Pelvic Pain Condition.


What is PNE/PN?

"Pudendal Neuralgia is a painful neuropathic condition that is caused by inflammation of the pudendal nerve. Triggers for the sensitivity include trauma secondary to childbirth, surgery, cycling, squatting exercises, bio-mechanical abnormalities (e.g., sacro-iliac joint dysfunction, pelvic floor dysfunction), chronic constipation, repetitive vaginal infections and direct falls on the tailbone. Pudendal neuralgia is known in some circles as ‘cyclist’s syndrome’, ‘pudendal canal syndrome’ or ‘Alcock’s syndrome.’

Primary symptoms of Pudendal Neuralgia include:

· Pelvic pain with sitting that may be less intense in the morning and increase throughout the day. Symptoms may decrease when standing or lying down. The pain can be perineal, rectal or in the clitoral / penile area; it can be unilateral or bilateral.

· Sexual dysfunction. In women, dysfunction manifests as pain or decreased sensation in the genitals, perineum or rectum. Pain may occur with or without touch. It may be difficult or impossible for the woman to achieve orgasm. In men, dysfunction presents as pain during erection, difficulty sustaining an erection or painful ejaculation.

· Difficulty with urination / defecation. Patients may experience urinary hesitancy, urgency and/or frequency. Post-void discomfort is not uncommon. Patients may feel that they have to ‘strain’ to have a bowel movement and the movement may be painful and/or result in pelvic pain after. Constipation is also common among patients with pudendal neuralgia. In severe cases, complete or partial urinary and/or fecal incontinence may result."

How is PNE or PN Treated?

"Medical - Analgesic medications, even those containing narcotics may have limited efficacy for neuropathic pain. Pain modulators such as tricyclic antidepressants and neuroleptics (i.e. Neurontin, Zonegran, etc.) have varied efficacy. Nerve infiltration with a combination of local anesthetic (Lidocaine or Marcaine) combined with steroid (Triamcinolone or Solu-Medrol) or combined with Heparin can be used. Multiple injections (usually 3-5) may be required. Timing intervals vary but 3-6 week interval between infiltration seems reasonable. Success rates also vary widely where between 15-60% are cured or improved with this approach alone.

Lifestyle Modifications – Avoiding activities which worsen the condition is crucial (cycling, sitting, etc.). Sitting pads, especially those designed with cutouts to transmit pressure away from the perineum, can be very helpful.

Physical Therapy - Musculoskeletal dysfunctions can cause pudendal neuralgia as well as other painful pelvic syndromes. Physical therapy is an effective method of minimizing or eliminating the concurrent pain generators that occur when the pudendal nerve is irritated (i.e., pelvic floor hypertonicity and myofascial trigger points, extrapelvic hypertonicity and trigger points, adverse neural tension, sacro-iliac joint dysfunctions, connective tissue restrictions, and faulty neuromuscular recruitment patterns). It is important to acknowledge this interaction between musculoskeletal and neural dysfunction as it is unusual that one exists without the other.

Physical therapists require special training to treat pudendal neuralgia. The therapist should have a strong manual therapy bias and an extensive working knowledge of pudendal neuralgia. The program should emphasize restoring normal length to the pelvic floor (through internal myofascial release) and pelvic floor relaxation techniques. Typically, the shortened pelvic floor/pudendal neuralgia will become symptomatically exacerbated with Kegel exercises and these should be avoided until otherwise instructed by a professional. The program should also include connective tissue mobilization, neural mobilization and a home exercise program.

Surgical - Three main surgical techniques are currently available (worldwide) for nerve decompression. The theory is similar to other nerve decompression procedures performed for nerve entrapments in other regions of the body (i.e. carpal tunnel release). The procedures differ in their approach to the area of entrapment and have never been compared head to head.

Post-Operative Physical Therapy - The above mentioned musculoskeletal dysfunctions can be responsible for pain that persists after a decompression procedure. It is recommended that external physical therapy begin one month post-operatively and that pelvic floor rehabilitation gets initiated at three months.

Sacro-iliac joint dysfunction commonly co-exists with pelvic pain. When the sacrotuberous ligament is severed during decompression, SIJD is a common post-operative complication. Patients typically will have persistent (or ‘new’) pain and pelvic dysfunction. This situation is correctable through proper stabilization techniques: through physical therapy in less involved circumstances and through proliferative therapy and physical therapy in more severe circumstances."

It's important to have a Doctor that is comfortable in dealing with these conditions. That is half the battle. Knowledge is the next tool to have when talking with your Doctors about PNE/PN.

For a Lisiting of North American Physicians you can go to this site: http://www.spuninfo.org/index_files/Page771.htm

This information is quoted from the The Society for Pudendal: http://www.spuninfo.org/index.htm

For more information feel free to PM me as I also suffer from Pudendal Nerve Entrapment.

Kara

I was thinking about symptoms.........many women are diagnosed with something called Vestibulitis along with PNE because the symptoms are similar are often overlap. Here is some info on it:



Patient Information: Vulvar - Vaginal Disease
Vestibulitis

What is vulvar vestibulitis?
Vestibulitis is a condition which causes redness and pain of the vestibule. Vestibulitis is an inflammation of this skin and the mucous secreting glands found in the skin. The mucous secreting glands are called the lesser vestibular glands. Vestibulitis may include all the area around the opening of the vagina but ismost commonly seen in the lower part.

Vulvar vestibulitis occurs in women of all ages. It can occur in women who are sexually active and also in women who have never been sexually active.

Many women with this problem have suffered physically and emotionally for months or years, have seen a number of physicians, and have tried many unsuccessful treatments in search of relief.

What are the signs and symptoms of Vulvar Vestibulitis?

* Severe pain with pressure (for example: biking, exercise, tight fitting clothes ).
* Vaginal entry such as tampon use or intercourse.
* Burning, stinging, irritation, or raw sensation within the vestibular area.
* Vestibular redness
* The urge to urinate frequently or suddenly
How is vulvar vestibulitis diagnosed (identified)?
Your doctor or health care provider will examine the vulva and vestibule to identify the common skin changes seen with vulvar vestibulitis. Pain is usually felt if the vestibule area is touched with a cotton tipped applicator. A sample of your vaginal discharge is collected and tested to rule out infection.


PM me if you want to talk further............


Kara

GriffsMommy
03-05-2008, 07:03 AM
Kara,
Thank you so much for all of the info. I am so happy this new section to the boards has been added. Some days my PN pain is what pushes me over the edge along with all the other pains. It is so nice to know there is now a section where we can all talk about PN problems and all support each other since it seems to me that it is a lot more rare than some of the other related conditions that IC patients may have.
I will def be checking out those websites so that's for providing them!

dminton
04-01-2008, 06:39 AM
Thank you, Kara, for this very informative post! I really appreciate it.

JenAZ07
04-01-2008, 08:00 AM
I just wanted to add that I see Michael Hibner from Phoenix, Arizona for pelvic pain and he is amazing. I spent 9+ months (3 surgeries and upteen procedures) going to dr after dr trying to figure out what was going on with my body and he diagnosed me with PFD in a matter of minutes. He is very caring and very gentle and is willing to spend lots of time with you to really figure out what is going on. His wife is a chronic pain patient, so he truly understands the troubles we face and is very compassionate.

And he is not all about the money. In fact, I have heard that he donates his time and performs surgeries for free for some patients who cannot afford them. He actually does a surgery that nobody else in town does……where he snips the nerves running to certain female organs (in my case he offered to snip the nerve which relays pain from the uterus, but I think this is the surgery he offers primarily to PNE patients) in an effort to eliminate pain for incurable conditions. His office is a little unorthodox and seems a little dingy at first, but his staff is really nice and knowledgeable. I would definitely recommend a patient seeing him if they are able. He specializes in many causes of pelvic pain, including endo, IC, PFD and PNE. It is hard to get in with him, so don’t expect an immediate appt, but he is well worth the wait.

Kara29
04-02-2008, 05:50 AM
:smile tee:smile tee

I see Dr. Fred Howard in Rochester NY for Chronic Pelvic Pain. He's been one of the best Doctor's I've seen besides the Doc who did my Urethrectomy and Indiana Pouch. I consult with Dr. Mark Conway in NH for PNE. He's another amazing Doctor!!! Slowly I will get t here. I have an appt on Friday but I am a bit nervous about it because I think another surgery is coming.......I have not gotten pregnant yet and that is a bad sign :(:(


Kara

suffering
04-15-2008, 04:58 PM
Hi! I'm fairly new here...just a few posts, but lots of reading! :)

Anyway, I am approximately 15 weeks postpartum and have suspected I have some nerve damage as a result of the birth. I do have a lot of symptoms of PNE, and was surprised to see that it can cause pelvic pain AFTER a bm, which is a weird symptom I've been having.

But I do have a question (and I apologize for TMI!!). If any of you experience pain after bowel movements, do you have any perineal (sp?) burning afterwards? I find it especially difficult to sit down after a bm due to this burning. It's not anal burning - it's actual perineal and vaginal - like I just applied Icy Hot or something. Is this common with PNE?

Thanks!

dminton
04-15-2008, 06:30 PM
I had this same thing happen, only once, but it really got my attention. Very unpleasant. It happened since my generalized vulvodynia really got underway since my pelvic surgery two years ago. Has not happened again. I have no idea if this is PNE or not. I am seeing a specialist in Portland Oregon next month and will be asking about it, you can be sure of that! Perhaps it is somehow related to the levator ani muscle, which can cause proctalgia fugax? Did you have an especially difficult vaginal birth by any chance?

suffering
04-15-2008, 06:56 PM
Thank you for your reply. The birth was my third and was actually better than my other two births. However, the baby was breech. Besides her position, the biggest difference with this birth was that it was my first with an epidural. I really regret the epidural for many reasons, but I got it because we thought she was going to be a c-section. (Things went so well, they let me go ahead and deliver her vaginally.)

I've broken my tailbone twice and had pubic symphasis issues during the pregnancy (the tailbone issues were in the past) - I think I read these things can predispose you to PNE. I feel like the epidural really messed me up because you don't get that controlled pushing where you work with your body and know when to push and when to give it a break as things stretch on their own. Plus I was pushing on my back and in stirrups...so I think I set myself up for injury. I do still have a LOT of the pubic symphysis pain leftover from the pregnancy...I'm guessing because I'm nursing and the hormones are still there.

I've been noticing problems since about one week postpartum when I got a bladder infection that wouldn't seem to go away. A CT scan was done that showed bladder wall thickening. This is what led me here originally.

Then I started to notice the burning sensations "down there." I also get a lot of pelvic/lower abdominal pain after bowel movements (one of my doctors suspects endometriosis...which I had suspected for years - I just didn't think it would present itself this quickly postpartum since pregnancy usually sends it into remission.) I do have PCOS, but all of these symptoms are new.

I didn't know about PNE until recently, but a lot of the symptoms sound similar to some of my issues. Levator ani syndrome sounds similar to my issues as well, although I don't know if it can cause the burning in the perineum/genital area (??)

I'd be curious to know what your doctor says about the experience. It drives me nuts!

Thank you for the input!

GriffsMommy
04-15-2008, 08:30 PM
I know that I have pudendal nerve neropathy and it seems after months of pudendal nerve blocks with no increase in the relief they give me my pelvic pain specialist is leaning towards me having PNE.
I just had a total hysterectomy April 3rd and about a month prior to the surgery he told me after I was healed from this surgery that my next surgery could quite possibly be the pudendal nerve decompression surgery.
I thought my heart jumped out of my chest. I had asked him about it not long after starting the blocks but I guess he was more optimistic back then and was hoping the nerve blocks would give me more relief than they did.
The biggest complaint I have with the PNE other than of course pelvic pain is how painful it is to sit. When I'm on my laptop like I am now, I am sitting in an oversized chair and sit on my hip to avoid sitting on my butt directly which causes my pudendals too much pain. I can't stand for long because of the pelvic pain it causes and I can't sit straight on my butt long on anything that is not extemely cushy or it just kills my pudendals and then I have to lay down.
I do not believe that I have experienced the pain that you are describing after a bowel movement. It seems like all the problems that we have are problems that dr's know so little about. PNE could be like IC in that each patient has slightly different symptoms or that a patient has some of the symptoms that falls under the category and another patient has another set of symptoms. The whole thing is just so darn frustrating.

I hope you figure out what is going on and can get some relief soon. Glad you found our little family here, there really is a ton of support.

Pumpkinsmom
04-30-2008, 08:49 PM
just curious, how is this diagnosed? How is it distinguished from IC, Vulvodynia, or PFD?

Kara29
05-01-2008, 02:43 PM
PNE is a Diagnosis of Exclusion which is why it took 10 years for them to find mine through and EMG and several nerve blocks. I have the upper portion of the PN Trapped.

Yes I have pain after a BM and I also get wicked urgency like symptoms.

The best way to get diagnosed is to see one of the PNE Specialists: For a Lisiting of North American Physicians you can go to this site: http://www.spuninfo.org/index_files/Page771.htm

Kara

dminton
05-01-2008, 07:48 PM
I was describing my vulvodynia nerve pain to a neurologist today for the first time, and he asked me if I ever had worse pain with a BM. Unfortunately, I didn't get to find out why he asked. And I have had that pain a couple of times. It shot all the way from my rectum to the pubic bone area up front. Does anyone know the connection?

Kara29
05-06-2008, 06:34 AM
Many patients do have pain with and after bowel movements with PNE/PN. That can also be a Pelvic Floor Issue as well.

When you get to a specialist make sure you ask them if pelvic floor therapy would benefit this issue or is it simply part of PNE.

Kara

marsi4
05-10-2008, 06:09 AM
Jen, How did he diagnose you with PFD in just a few minutes? I'm curious. Do people with PFD have incontinence. I'm surprized to see how many people are actually being diagnosed with PFD. What are the symptoms of PFD. I think some doctors may be confusing ic symptoms and pelvic pain with PFD.
I have ic symptoms and pelvic pain for over 30 years and have never been told I have PFD. It is truly confusing and frustrating in trfying to figure out what you have since IC, PFD, PNE, chronic pelvic pain seem to be interconnected or co-existant.

Marsi4

dminton
05-10-2008, 12:47 PM
Marsi,

I share your confusion. I have had problems for 30 years. No one has ever told me I have PFD, and I've been examined by a prominent IC uro, a gyno, and two physical therapists. Yet, my bladder pain persists and now I have nerve pain in other areas of my vulva as well. I am very discouraged and worn out.

jamie_visiting
07-15-2008, 08:47 AM
PFD is hard to diagnose. Sometimes they can check with electrical impulses if there is hypertonicity (read: too much tension) of the pelvic floor, but it's not very reliable. Some doctors believe virtually all IC is a result of PFD. Send me a PM with your email address if you want me to email you the name of a book that explains this stuff (I would just mention it here or in a PM, but I am not sure if the board censorship kicks in when one mentions it like it does for some other things).

Kara29
07-21-2008, 10:49 AM
The reason why PNE/PN is so hard to diagnose is that it's symptoms are so similar to IC and it's sister conditions. In addition to eliminating other diagnoses, it is important to determine if the pudendal neuralgia is caused by a true entrapment or other compression / tension dysfunctions. In almost all cases, pelvic floor dysfunction accompanies pudendal neuralgia. Electrodiagnostic studies will help the practitioner determine if the symptoms are caused by a true nerve entrapment or by muscular problems and neural irritation.

Primary symptoms of Pudendal Neuralgia include:

· Pelvic pain with sitting that may be less intense in the morning and increase throughout the day. Symptoms may decrease when standing or lying down. The pain can be perineal, rectal or in the clitoral / penile area; it can be unilateral or bilateral.

· Sexual dysfunction. In women, dysfunction manifests as pain or decreased sensation in the genitals, perineum or rectum. Pain may occur with or without touch. It may be difficult or impossible for the woman to achieve orgasm. In men, dysfunction presents as pain during erection, difficulty sustaining an erection or painful ejaculation.

· Difficulty with urination / defecation. Patients may experience urinary hesitancy, urgency and/or frequency. Post-void discomfort is not uncommon. Patients may feel that they have to ‘strain’ to have a bowel movement and the movement may be painful and/or result in pelvic pain after. Constipation is also common among patients with pudendal neuralgia. In severe cases, complete or partial urinary and/or fecal incontinence may result.

· Sensation of a foreign object being within the body. Some patients will feel as though there is a foreign object sitting inside the vagina or the rectum.

It is important to note PN is largely a “rule out” condition. In other words, because its symptoms can be indicative of another problem, extensive testing is required to ensure that your symptoms are not related to another condition. Common conditions that should be evaluated include coccygodynia, piriformis syndrome, interstitial cystitis, chronic or non-bacterial prostatitis, prostatodynia, vulvodynia, vestibulitis, chronic pelvic pain syndrome, proctalgia, anorectal neuralgia, pelvic contracture syndrome/pelvic congestion, proctalgia fugax or levator ani syndrome.

In addition to eliminating other diagnoses, it is important to determine if the pudendal neuralgia is caused by a true entrapment or other compression / tension dysfunctions. In almost all cases, pelvic floor dysfunction accompanies pudendal neuralgia. Electrodiagnostic studies will help the practitioner determine if the symptoms are caused by a true nerve entrapment or by muscular problems and neural irritation. It is crucial to a successful treatment outcome to acknowledge both dysfunctions and treat accordingly. In the event of a true entrapment, surgical decompression followed by post-operative physical therapy will be necessary to restore patient health. In cases of pudendal neuralgia, pudendal nerve blocks and physical therapy can alleviate the symptoms and resolve the original problem.

A diagram was created and copyrighted by Dr. Jacques Beco in 1998 which clearly illustrates the pathway of the pudendal nerve. In this diagram, we have overlayed the most likely sites of a nerve entrapment. This original diagram is available on www.pudendal.com.

NOTE: This information was authored and approved by the physicians on our Board of Directors, but it is not a substitute for a visit with your physician.

The EMG is done in the Doctor's office. They hook up a bunch of electrodes to your pelvic area and clitoris and rectal area. If you have more questions regarding this procedure pm me. Or contact one the the specialists that are on the North American Physicians Listing Site. http://www.spuninfo.org/index_files/Page771.htm

The best Doctor in my own opinion is Dr. Mark Conway. He's good at emailing but better over the phone: Dr. Mark Conway is and ob / gyn that is the head of the obstetrics and gynecology department at St. Joseph’s Hospital in Nashua, New Hampshire. Dr. Conway has made multiple trips to Aix in Provence to learn the TIR surgical technique from Dr. Eric Bautrant and to learn Dr. Eric deBisschop’s technique for EMG study of the pudendal nerve (pre-operatively and intra-operatively). Dr. Conway has partnered with Dr. Quesada (an anesthesiologist) and Lynne Assad (a physical therapist) to create the first comprehensive pudendal neuralgia treatment center in the country, offering conservative therapies, medication management, EMG studies, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.

OB / GYN Associates of Southern New Hampshire
30 Daniel Webster Highway, #30
Merrimack, NH 03054
Phone: 603-883-3365
E-mail: Mark.Conway.MD@spuninfo.org

He's great at answering all quetions no matter how controversial or in depth they are. There is no such thing as an embarrasing question with thim.

Tell him Kara Reese sent you! You don't have to go see him to get great information from him.

Kara

Arizonian
07-21-2008, 12:28 PM
I have both Pudendal Neuralgia (1 year) and I.C. (6 years) plus a host of other ailments but I want to focus on the PNE here. The PN has made my IC so much worse this past year in terms of frequency, urgency and the vaginal pain is unbelievable.
I see Dr. Michael Hibner at St. Joseph's Hospital in Phoenix as he is one of 3 doctors in the U.S. who perform the P.N. Entrapment Release surgery. For the past year, I have been trying to avoid have the PNER surgery by having nerve blocks, epidurals, drugs and now, cold laser treatments. Nothing has worked yet and I can't live with this pain much longer. I may have to have the surgery this fall.
I would like to ask any of you who has had this surgery in the U.S. or abroad, how did it work for you? You can PM me and I am interested in the surgeon's ability, the post-recovery period, one's limitations and pain levels.
Thank you so much!

Kara29
07-27-2008, 03:39 PM
I will be having it done eventually, most likely within the next year. If you want to see a host of people with this condition and have had the PNE Decomp you can try going to this website: http://www.tipna.org/faq/IntroductoryFAQ.htm

http://www.tipna.org/forum/index.php?sid=ef42584961aaa27ce22b7028ac67b86f

There are many people on there that have already had the surgery, with your own Doctor.

Well Wishes ahead!

Kara

elitynski
07-27-2008, 06:29 PM
I can't believe what you all have been through - when I read the types of things you've been dealing with my heart hurts and I just don't understand why.

Kara - since you are in the PNE world now I had a question - I only really have urinary symptoms - and it's still a matter of getting to the bottom of what's going on in my body but I was curious....other than urinary symptoms which seem to apply to a lot of things....I don't really have any of hallmark symptoms of Pudendal issues in terms of pain. Should I simply stop sticking my nose in the PNE world as I would be barking up the wrong tree.

Part of the problem with me is that I'm so desperate for answers I'm looking everywhere.

Kara29
07-31-2008, 09:37 AM
What I'm doing with the PNE world is putting it on the back burner becuase I still want children someday..........and I'm only 32

I can have that surgery any time, it only takes and hour.

If you feel strongly that you have PNE please stay in touch and look up the Doctors and Specialists I've mentioned in the mean time.

We are here for you no matter what you have!! :smile tee

Warm Hugs,

Kara

smsaz620
03-03-2009, 09:06 PM
I am new here and am having surgery with dr hibner on thursday 3/5/09
i have IC and pelvic floor

what surgery did you have?
how long was the recovery?

i am having A transfundal venography w/ laproscopic obliteration of congested veins, have you heard of this?
i cannot find anyone on here that has....

He did not mention 4 months ago when I first saw him anything about the IC surgery others on here have, the hydrodistention, I am wondering why I am not getting that if i have IC?

I have been going to his office once a week for 3 months for bladder instillations via a catheter, but i never see him only the M.A.

thank you for any help you can give















I just wanted to add that I see Michael Hibner from Phoenix, Arizona for pelvic pain and he is amazing. I spent 9+ months (3 surgeries and upteen procedures) going to dr after dr trying to figure out what was going on with my body and he diagnosed me with PFD in a matter of minutes. He is very caring and very gentle and is willing to spend lots of time with you to really figure out what is going on. His wife is a chronic pain patient, so he truly understands the troubles we face and is very compassionate.

And he is not all about the money. In fact, I have heard that he donates his time and performs surgeries for free for some patients who cannot afford them. He actually does a surgery that nobody else in town does……where he snips the nerves running to certain female organs (in my case he offered to snip the nerve which relays pain from the uterus, but I think this is the surgery he offers primarily to PNE patients) in an effort to eliminate pain for incurable conditions. His office is a little unorthodox and seems a little dingy at first, but his staff is really nice and knowledgeable. I would definitely recommend a patient seeing him if they are able. He specializes in many causes of pelvic pain, including endo, IC, PFD and PNE. It is hard to get in with him, so don’t expect an immediate appt, but he is well worth the wait.