Pudendal nerve irritation

[musiclover]

Hello everyone. I am so glad to find this part of the website. My PT believes I may have pudendal nerve issues, but I don't know too much about that or how to treat it.

My symptoms are urinary frequency (about 20 or more times a day) and abdominal discomfort, some spasming of pelvic floor.

I had a cystoscopy a couple of weeks ago and my bladder looked normal with no inflammation present. I don't seem to respond to the IC diet, cystoprotek, Prelief, Aloe pills.. None of those things help me.

My symptoms of frequency worsen when I am standing. The feeling that I need to urinate is slightly better when I'm laying down, and sometimes sitting down. My symptoms worsen when I strain to have a bowel movement, or even bare down even the slightest bit. I take a fiber supplement daily to help with that and Milk of Magnesia when I really need help.

This all began after I first started having pelvic pain almost a year ago. Then it became IBS-like symptoms with constipation and bloating and pain after eating. After starting two hot baths a day and stretching, most of the IBS symptoms went away except that sometimes I have trouble with the constipation.

The feeling that I need to urinate began maybe in November or December of 2008. Now I have the sensation almost 24/7/365. It is very annoying.

I am doing PT for PFD. I tried Nortriptyline and I think it helped for a few days, but then it made my PFD worse, so I stopped taking it.

Does anybody have any advice?

Thank you. :hi:

[Kara29]

My suggestion is to read this information http://www.ic-network.com/forum/showthread.php?t=56647

And to find a Doctor in your area that is willing to treat PN/PNE and has an open mind about trying several sorts of treatments with you. Sometimes we have to go far away to find a specialist but that would be a way to get diagnosed properly before going down the road blindly. There should be a list of North American Doctor as well as International Doctors on that site.

If you need further support we are all here for you! :welcome::hi:

Well Wishes,

Kara

[ICsmiles]

Hi musiclover,
I too have walked this path.
You are in the right place... Kara can provide LOTS of information, as well as others on this site and on the PNE sites.
Basically, this condition, whether it be IC, pudendal neuralgia (PN), pudendal nerve entrapment (PNE), IBS etc. -- SUCKS -- and is difficult for everyone.
I can say, after 14 years with pelvic pain, diagnosed with IC and more recently, with pudendal neuralgia --- that I do not really know what is going on with me "down there." Every time I think I have figured it out and go to a new doctor and go through the latest treatment - most recently physical therapy and botox - it doesn't work and I end up back where I was -- in PAIN.

I am now researching PNE surgery. It will take a long time before I do anything though - It is so important to research fully before jumping into surgery. I'll be spending a lot of time on the PNE forums:
www.pudendalhope.com
www.tipna.com

Best wishes to you. You are fortunate there are so many resources now. The ICN has been a lifesaver for me. :angel:
ICsmiles

[CharlotteY]

IC Smiles,

My GYN originally told me that my pelvic pain was due to uterine fibroids for which I underwent a hysterectomy. I was cut open across the entire lower pelvic area and spend 4 days recovering in the hospital. Imagine my sadness when I found I still had the pelvic pain after enduring such an invasive operation.

I was then told my pain was from kidney stones. The urologist then "snaked" up my urethra all the way to my kidneys (while asleep) and failed to find any kidney stones. The pain after that procedure was the worst pain of my life. After recovering from this procedure I found I STILL had the original pelvic pain.

I was then (mis) diagnosed with IC and underwent bladder distentions and then many weeks of bladder instillations. I had a second opinion from a second urologist who agreed with the IC diagnosis even though my symptoms sounded rather unusual to him.

All the while I kept telling doctors that I only had pain when I sat down and that if I avoided sitting I felt much, much better. Finally, a third urologist (a female) agreed that my symptoms really didn't sound like IC. She suggested I visit a PN specialist even though it is very rare to be diagnosed with PN.

This is now I arrived at my diagnosis of PN. I recently underwent surgery to remove my ovary since my PN pain was worsened by chronic complex ovarian cysts. I do feel better after this surgery, but I still cannot sit down and type or write at a desk, even with a cushion. I use my laptop laying down in my bed.

[Kara29]

:welcome::welcome::welcome::welcome:To the Pudenal Board! :hi:

Let me know how I can help you.

Did you have the operation for PNE or are you just getting started on the road to rule it out over another diagnosis?

I'm here for you and with whatever information I can give. Private Message me if you'd like.


Well Wishes,


Kara

[samik]

I was diagnosed with IC in Dec. 2007 after I took my son sledding and fell very hard on the ice. I have had a hydro, cysto, urodynamics, bladder instlls, and have tried a lot of meds. I am currently on Elmiron, amitriptyline, and urelle. I have also had a hysterectomy so I am on estrogen. I am currently in physical therapy. She strictly deals with these types on problems. My major complaint is urinay urgency. I used to pee every 4-5 hours and I nener felt pressure. My symptoms seem worse when I stand. My PT doesn't think I have IC, she feel it is nerve related. She does myofacial connective tissue repair. It seems to help but I just feel that I should see a doctor that can help access if I have some sort of nerve problem. I never have had any bladder problems before this! I feel like my life is ruined. I can't do hardly anything I used to do. Also, another question, Does anyone feel that they have to have a BM all the time. Even when I go I still feel like I need to go.

[musiclover]

samik, I'm so sorry you're going through all of that. I know how frustrating this all can be and overwhelming at times. I never had bladder problems until July of last year when this all started. At my worse I was peeing 50 or more times a day. Anyway, YES, I used to have that feeling that I always need to have a BM. I got over it with physical therapy. It was my pelvic floor muscles. They get rigid and hard and I think they kind of press on the rectum giving you that feeling. Once you stretch the pelvic muscles and relax them that feeling will go away over time. If it is the same as my problem, but it sounds like it. I do all the stretches from Heal Pelvic Pain everyday and I also do internal myofascial stretching and those two things made that feeling go away. Best of luck to you!

[duchesstiger]

To be honest, it doesn't sound like you have PNE. Feeling better when sitting down is definitely not a hallmark symptom of an entrapped nerve. Do you have vaginal, rectal or perineal pain (especially burning?)? Do you any other symptoms of nerve issues like prickingly, crawling on the skin or tingling? It could be that your PFD is causing some mild pudendal nerve irritation. I, personally, do not think that you should jump to see a PNE doctor especially given that you don't seem to have (from what you have described anyway) the symptoms of a true entrapment which is treated surgery after all conservative measures have failed (extensive physical therapy, visceral therapy, muscle relaxants, possible botox etc. etc). PNE surgery is incredibly invasive and is a last-ditch method of dealing with an entrapment (physical therapy will not relieve a *true* entrapment where the nerve is trapped at the ligament grip or in the alcocks canal).

[Kara29]

Please refer to the Doctors to do your diagnosis. We are just here for moral support. None of us are Doctors. We can only share our own experiences with others. If you need help finding a specialist in or around your area, just let me know and I can find one for you. I've been through the surgery just as an FYI.

You could have PNE with the BM issue. Here are some symptoms of Pudendal Nerve Entrapment written by the medical professionals that treat Pudendal Nerve Conditions. This comes from the pudendal.com site.

" Overview of symptoms

The main symptom of pudendal neuralgia (PN) and pudendal nerve entrapment (PNE) is pain in one or more of the areas innervated by the pudendal nerve or one of its branches. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia. In men this includes the penis and scrotum. But often pain is referred to nearby areas in the pelvis. The symptoms can start suddenly or develop slowly over time. Typically pain gets worse as the day progresses and is worse with sitting. The pain can be on one or both sides and in any of the areas innervated by the pudendal nerve, depending on which nerve fibers and which nerve branches are affected. The skin in these areas may be hypersensitive to touch or pressure (hyperesthesia or allodynia).

Possible symptoms include burning, numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body in the vagina or rectum, twisting or pinching, abnormal temperature sensations, constipation, pain and straining with bowel movements, straining or burning when urinating, painful intercourse, and sexual dysfunction – including uncomfortable arousal or the opposite problem, decreased sensation.

It is not uncommon for PN to be accompanied by musculoskeletal pain in other parts of the pelvis such as the sacroiliac joint, piriformis muscle, or coccyx. It is usually very difficult to distinguish between PN and pelvic floor dysfunction because they are frequently seen together. Some people refer to this condition as pelvic myoneuropathy which suggests both a neural and muscular component involving tense muscles in the pelvic floor.

Some tests can be used to help diagnose PN/PNE, as described in the diagnosis section. However a large part of diagnosis relies on systematic study of the symptoms. This page is aimed at helping patients and doctors determine the strong possibility of PN/PNE from study of symptoms alone. History is also a factor in the diagnosis so it is important to consider possible causes as well as symptoms.

It can be frightening for the newcomer to read all of these symptoms and can lead to self rationalization that his/her condition cannot be such because it is not so bad at the moment. Remember that most people do not have all the classic symptoms and for most of them the problem started with a small amount of discomfort. Nerves can react in a variety of ways before complaining. So pain may not be the first symptom.

Without treatment, over time there may be a progressive worsening of symptoms starting with a small amount of perineal discomfort that develops into a chronic and constant state of pain that does not decrease even when standing or lying down.
Possible Causes of PN

Pudendal neuralgia can be caused by inflammation of the nerve or by mechanical damage/trauma to the nerve. Sometimes the pain develops slowly and is almost imperceptible at first, sometimes preceded by paresthesia in the area innervated by the pudendal nerve. Paresthesia is a “pins and needles” sensation or a feeling of prickling, numbness, and tingling.

Many people however recall one event in particular as the beginning of their symptoms. Some recall the feeling of a lightning electrical shock after a bad move. Some people report their symptoms started after direct shock like a fall on the buttock or a car accident. Pelvic surgery such as a hysterectomy triggers pudendal neuralgia in some cases even though the nerve was not touched directly. Sometimes there is direct trauma to the nerve during pelvic surgery either from retractors or misplaced sutures. One theory is that the nerve can undergo a stretch injury if the body is in a certain position for a long period of time during surgery. Sometimes women develop pudendal nerve pain immediately following childbirth and while often this eventually subsides, for some women the pain does not go away. Women with severe endometriosis may develop scarring or inflammation if the endometriosis settles on the nerve.

Prolonged sitting at work and frequent long drives are a common cause of compression to the nerve. Sports involving repetitive hip flexion like heavy weight lifting may cause enlarged or strained ligaments or enlarged muscles that impinge on the nerve. Some young athletes have been shown to have an elongated ischial spine, a bone that protrudes into the pelvis near the pudendal nerve. Cycling is a leading favorable risk factor for the development of the condition. In the sports medicine community it is sometimes called “cyclist syndrome”.

One hypothesis suggests that people who have PN were predisposed to have it and something occurred that triggered it. Other people who are predisposed may never develop the condition if they never engage in an activity or experience an incident that triggers it. For instance, someone who is predisposed to PN may take up weightlifting and consequently develop PN while another person who is predisposed but does not weight lift will not develop PN.

Tight muscles, tendons, or enlarged ligaments can lead to constant friction on the nerve or if the pelvis is out of alignment there may be undue pressure on the nerve. For some, the pudendal nerve can follow an irregular path or they may naturally have a tight space between the ligaments at the ischial spine or in the alcock’s canal. Some doctors have seen PN run in families, with several members in successive generations developing PN. Some people tend to form excessive scar tissue and this may lead to entrapment of the nerve. Certain autoimmune or inflammatory illnesses have been linked to pudendal neuralgia.

However, sometimes the cause remains unknown.

Other Possible Symptoms

-The chief symptom is pain in the area innervated by the pudendal nerves such that sitting becomes intolerable.

-The pain may be lessened when sitting on a toilet seat or a doughnut pillow as this lessons the pressure on the pudendal nerve. Most people simply have to avoid sitting because it is impossible to find a cushion that relieves pain in all areas.

-The pain is often not immediate but delayed and continuous and stays long after one has discontinued the activity that caused the pain (stop sitting, cycling, sex...).

-Often the pain is lower in the morning upon awakening and increases throughout the day.

- There may be extreme pain or tenderness along the course of the nerve when the nerve is pressed on via the vagina or rectum.

- Pain in perineum.

- Pain after orgasm.

- Loss of sensation with difficulty achieving orgasm.

- Strange feeling of uncomfortable arousal without sexual desire.

- Intolerance to tight pants or elastic bands around the legs.

- Friction and feeling of inflammation along the course of the nerve when walking for too long or running.

- Constant pain even with standing or lying down.

- Problem with urinary retention after urination. Need to push to empty bladder. Harder to detect the feeling of urine when passing through the urethra.

- Urethral burning with or after urination

- Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.

- Urinary frequency.

- Pain after bowel movement. Sometimes sufferers also report pain prior to and during the bowel movement.

- Painful muscles spasms of the pelvic floor after bowel movement.

- Constipation.

- Sexual problems. Men complain of a diminution of sensations. Pain after ejaculation is common. For women pain during and after intercourse is often reported.

-Scrotum/Testicular pain is possible. The testicle itself is innervated by another nerve however the difference in pain from scrotum/testicle can be hard to detect.

- Buttock sciatica and everything that goes with it: numbness, coldness, sizzling sensation in legs, feet, or buttock. This is more often due to a reaction of the surrounding muscles to the pain in the pelvic region. It could also be from "cross talk" of the nerves.

-Low back pain resulting from radiation of the pain.

- The symptoms can be unilateral or bilateral. If the entrapment is only on one side, the pain can also be reflected to the other side.

- Some people develop conditions such as complex regional pain syndrome and even post-traumatic stress disorder after prolonged or severe pain."

Sorry to throw so much info your way but I wanted you to get the facts correct and the bowel thing rang a bell and red flag for me.

I've been through it all. It's best to call one of the Specialists near you and ask them what they think and want to do.


Well Wishes and we're here for you for more support.

Kara

[MichaelaZ]

Hi Kara.

I have been reading some of your post for a while and I finally decided to contact you because I feel like I'm on the end of my rope.

I was diagnosed with PNE after about 5 months not knowing what was going on. I had some pelvic pain and pain in general in my mid-section but my biggest problem was and still is frequency. I constantly feel like my bladder is full even tho i just emptied it. I get very depressed and exhausted about this condition and feel like I cant deal with it any longer (i'ts been about 8 months now. I realize many people live with this condition much longer that me).

I just had a first set of nerve block done about a week ago. They didn't do anything for me and I'm losing my hope. I have two more sets if injections scheduled in next two months but I always think in the back of my mind what am I gonna do if they don't work?

I'm hesitating to have a surgery because its very invasive and doesn't necessarily have to help. I'm also worried because I would like to get pregnant soon (I've been putting it away because of my condition) so I don't want to have any surgery done that could go wrong in that area.

Also my doctor told me that if I get better I might never be able to go to the gym or do any sports again. Even pregnancy could cause a huge set back (that is IF I got better).

I haven't tried PT yet. I went once and I felt very irritated after that. Maybe its normal. My doctor doesn't believe in PT and is pushing for the injections, possibly surgery.

Could you give me any advice or information on what could possibly help me? Do you have any experience with the nerve blockers, PT or surgery?

I'd be very thankful for any information.

Michaela

[earthlady]

I'm not sure if this is used with pudendal nerve problems but have you looked into post tibial nerve stimulation- PTNS. My uro has recommended this for a later time if frequency is still an issue with me. He said he has had much success with it and it's a non invasive procedure. Jill has posted information on this on this website.

[endogirl2]

Hi Kara!

I hope you are still a member of the board, I tried to message you but it said you weren't taking PM's.
I'm hoping maybe you can review my situation and advise.

I am 35 and have endometriosis. I was on the birth control pill to suppress my endo for 8 years, went off in 2009 June to try to get pregnant. My periods were pretty tolorable. In August of last year 2010 I slipped down the last 4 stairs of our house. It wasn't a hard fall, literallly almost slid down the stairs on my right side, banged my right knuckles on the wall etc etc. Of course it was painful for afew days and I thought I recovered. Then...my period came and that was the start of my pain. I have afew issues. First, it feels like my entire rectal area is going to fall out when my period is going. Second, when I try to pee I have the WORST time ever. My stomach literallly does the wave and I have to push so hard like I'm going to bust a vein getting the urine to come out. I sob everysingle time - it's awful. I have been to afew doctors and all vaginal/rectal exams seem fine. I tried chiropractic and they told me that my L5 was out of whack because of my fall and I think they got it back into place, not sure, hated the guy so after going 15 times I thought he was taking me for a ride so I stopped going to him. From time to time thru the month I might have 1 day where passing urine is hard but it seems to be tied to also having a tight feeling in my tailbone and tightness/pain in my piriforumus muscle. My main issue though is on my period. Does this sound anything like what you went thru with PN? When things are really bad standing is horrible, I feel like I have a 10lb wt in my butt. Sitting is better for me. Putting an ice pack near my lower back helps. I will fluctuate from constipation to soft stools. Passing a stool during my period will sometimes make passing the urine easier. I am seeing a pelvic pain dr. but only just started with him. He examined me and said my pelvic floor seemed good and thought MAYBE my issues were from my fall down the stairs. He's sending me for pelvic physical therapy which I start on Monday April 18th. He also said I might need to see a uro/gyno but we're not there yet. He also gave me vaginal valium 5mg to use during my period hoping that it would relax my urethra. I had some issues this week and tried it but it didn't seem to do a darn thing. He said try 2 at a time which I did and still I don't think it made a difference. I don't THINK I have IC. I do not have urgency/frequency/burning. I don't get up in the night, I'd say I drink alot of water and I pee about a total of 7-8 times per day. I'm otherwise healthy. I have lost alot of weight over this because when I'm having the discomfort i seem to loose my appetite. I used to be 125 and over the last 6 mths it's slowly crept down to 114. I'm not trying to loose weight in any way and try to eat as much as I can when I feel good which is most of the time. Seems like I have fallen into a bad time and now just trying to figure things out. Do you think this sounds at all like PN? Like I said, I prefer to sit, sometimes if it's bad I can't stand and go my makeup/hair for work, sitting on the vanity bench makes me feel better. I think with PN sitting is worse?
Thanks for any info and you can PM me also if that works better. Thanks!

[Arizonian]

I have P.N. and I.C. and see Dr. Hibner in Phoenix. My advice is for you to see a specialist in P.N. in your area. There are only a handful in all of the U.S. Only 5 do surgery so try to see one of them, if you can, but that is not necessary to get diagnosed. Some physical therapists can diagnose you for PN, also, such as my former one, Loretta Robertson, in Phoenix.
You can have the new MRI done that detects if your Pudendal nerve is entrapped and that means that you surely have PN. Only 2 or 3 hospitals in the U.S. offer that new MRI. I just had it done.
Good luck.

[ICsmiles]

Endogirl: I'm sorry you are having so much pain.
It would be very unusual for your symptoms to be caused by PNE, because the one of the main symptoms is an inability to sit. Sitting is very painful, because it involves putting weight right on the damaged pudendal nerve or possibly other nerves. in fact, for most PNE patients sitting is impossible, and has to be avoided.
PNE also has no relationship with your monthly cycle, as it is strictly a nerve issue.
If you are having nerve problems, the only way to know for sure is to see a PNE specialist or neurosurgeon who specializes in Pudendal Neuralgia. I recently had surgery with Dr. A. Lee Dellon, who is the best PNE specialist I have ever seen. www.dellon.com

I hope this is helpful.

[endogirl2]

Thanks! I'm not convinced that it's PNE at all either. Sitting is fine, I can sit all day without issues. Seems no dr. can diagnose me and after seeing chiropractors, regular dr, gyno, pelvic pain dr. I'm annoyed and done with drs for awhile. I just went back on the birth control pill and w.o a period it will be much better. I think I have 2 issues. 1 is endo that might have grown a little and 2 is a muscle injury from a slip down the stairs in august last year.

The pelvic physical therapist said it's my sit bone on the right side that is sore and that is also connected to ischerial tuberosity hamstring muscles. All are tender. Maybe I have a very slow healing injury.

[ICsmiles]

Endogirl - It sounds like you have a handle on your situation. I sure hope your pain lessens soon.

And yep, I know what you mean about being frustrated with doctors. Sometimes it makes sense to look for a doctor who is a specialist in the area you are suffering in. I have changed doctors before and it has made all he difference in the world.

When I think of the doctors' side of it, I imagine it must be very difficult to see patients all day and have to diagnose and prescribe treatment within a 20 minute window of time. We are the ones who are with our bodies all the time, so we have to be our own best advocates.
I can have the same condition and see 3 different doctors and get 3 different diagnoses. I don't have the answer, other than paying attention to my own body -- and I also believe in research. As much as medical internet research has been belittled in the past, I have noticed that my doctors have become more open and interested in the information that I have brought to my appointments. Of course, I only bring in research from reputable, known sites and it has to have real bearing on my medical problem. I have had doctors ask to make copies to put in my chart. When that happens, you know you are being treated seriously!