IC and Pain down there!

[Cat1961]

Hi everyone,
I need a little help. I have been getting treatments for the bladder and It did help however I am having most of the problems that you do with Pudendal nerve problems. Does anyone have some help with the IC treatment that helps the Pudendal nerve feel better but not help completely get rid of the pain. After I had the bladder streached I felt better for a short time and the burning legs and pain in the bottom has returned but the bladder is doing good. I have low back pain worse after I sit in a chair for about 20 min. It gets worse as the day goes by. Then the vaginal problems are there with burning pain and the bottom hurts to. Sometimes the pain will go all the way to my feet. I can't were tight pants anymore because it makes the pain worse. Thanks for any help. I would realy like to know what kind of doctor to see for this problem because when I tell my MD she doesn't know I told my ob she said it could be a lot of things and my bladder doctor did not know, they seem to be more confused than I am.
Cathy :help:

[Briza]

You might consider speaking to your gyn (or as many gyns as it takes to get help and treatment, because it IS available) about Pelvic Floor Dysfunction (PFD), Vulvar Vestibulitis(VV) and generalized Vulvodynia (V) as any one of these or ALL of these could be contributing to or causing your symptoms....they all often go hand in hand, and all often are sister conditions of IC, sound much like you are experiencing and seem to be more common than pudenal nerve problems, tho of course I can't dx you or rule pudenal nerve probs out as an issue, but the other conditions I mentioned far more common and much more easily treated than pudenal nerve issues.

[ICNDonna]

A neurologist should be able to tell you if you have a problem with a nerve.

Donna

[Cat1961]

Hi everyone,
I do have a neurologist appt. on the 21st of this month maybe he can give me some clues. I also e-mailed my MD she told me to contact my IC doctor or Gyn. I will call my Gyn tonight and find out what she thinks. Someone needs to figur this out. The bladder was much more painful than the nerve problem because I can do things to calm it down if I have to. When I wake up in the morning I don't seem to have much pain or when I am reclined on the couch. I have been complaining about the problem to my doctors just not much concern from them. I am taking codeine during the day and it helps alot during work hours because when I sit for mor than 10 or 15 min the burning and stuff starts. The pain gets worse and worse throughout the day. By 3 pm I am dancing in my chair trying to stop the pain. The problem is not new it has been progressing for at least 5 or 6 years. I wonder if the IC is causing it or if it is causing the IC? After I had bladder streach done I laid around most of the day and realy had very little pain in that nurve just the IC pain and that got better. Before the streach it was unbearable with both problems at the same time. I really think there is more to the story than just IC. However as much as I have been bugging the doctors I feel like they must think I like being uncomfortable or just looking for attention or drugs. I have cut back on the drugs for pain drasticly after the bladder got better. I realy hate to be a bother to them but don't know what else to do.:rolleyes:

Thanks
Cathy

[amaranthe]

They actually make a U-shaped cushion to sit on for PNE sufferers. It would also be helpful if you ended up being diagnosed with Vulvar Vestibulitis or Vuvladynia. If you find that to be helpful, then they also make a special chair for PNE sufferers, (also has a U-shaped bottom.) This shape is so helpful because if you have any of those conditions, the area would be painful if it came into contact (or felt pressure) from an external source, (like a normal chair.) But, with the U-shaped cushion or chair, that problem is elimnated. (Do you notice relief when you are home, laying in bed with your knees up and your back against the headboard? How about when you are laying down on your side?) If so, it would make sense, because in those positons, your body isnt coming into contact with anything else.)

You asked about options to help with the pain, so here's my suggestions: Lidocaine 2% jelly (applied to your vagina and vulvar area), Lidocaine 5% patches (one applied directly to your vagina, actually even pushing it into the vaginal lips and crevices.), also, applying a few Lidocaine 5% patches to your lower back to assist with episodic pain, ice packs applied vaginally. (If pain is also inside of the entrace to the vagina (as in Vulvar vestibulitis), then you can also take a condom, fill it with water and freeze it, then lube it up and very slowly and gently insert it into the vagina to dull the pain, numb the burning, stinging, extreme pain.

Also, for vaginal pain, dresses or skirts will be more comfortable than pants. However, if you wear pantyhose, you have just lost this benefit. So, if bare legs are a no-no in your field, try thigh-high stockings instead. You can also try taking a diaper, wet the crotch area with plain water (preferably bottled), then freezing it. When ready to use, simply cut out the crotch part and tape it to the inside of your undies with double sided tape. (If you use a Lidocaiine 5% patch down below, you will also need to tape it to your undies.)

For the low back pain accompanying this, you can also try Thermacare heat strips to see if that will help. If your work will let you, you might also try bringing your heating pad to work to use on your back at your desk. (They also make portable heating pads now that can plug into the ciggarette lighter in your car!!!:woohoo:)

Though most ICers are sensitive to NSAIDs, if you are one of the lucky ones like me that they dont bother, try taking a couple of those each day, (preferably in the morning, before the pain starts.) You might also consider taking a Tylenol to boost the action of your pain meds. (But be careful mixing Tylenol and r/x pain meds, since the r/x meds usually already contain Acetaminphen, and it can be VERY DANGEROUS to get too much of it! So, ask your Dr. and/or Pharmacist the max amount you can safely take while on your current meds.

One more thing worth consideriing is trying the ammino acid
DL-Phenylalanine. It is an over the counter supplement that can usually be purchased at Health Food/Vitamin stores. It a form of the essential ammino acid Phenylalanine. By produciing and activating morphine-like hormones called Endorphins, it intensifies and prolongs the bodies natural response to pain.

Certain enzymes in the body continually destroy endorphins, but DLPA effectively inhibits those enzymes, allowing the painkilling endorphins to work. People with chronic pain have lower levels of endorphin activity in their blood and cerebralspinal fluid. Since DLPA can restore normal endorphin levels, it can thereby assist the body in reducing pain naturally--without the use of drugs!

The effect of DLPA often equals or exceeds that of morphine. It also has a strong antidepressant action and pain relief becomes MORE EFFECTIVE over time without any tolerance! All of the info about DLPA came from "Earl Mindell's Vitamin Bible for the 21st Century".

As with any other med, vitamin, drug, or supplement, you should always consult your Dr. (and/or Pharmacist) and get their permission before trying anything new. Only your own Dr. can and should make recommendations for you personally to try.

DLPA looks quite promising and I plan to try it myself, (after getting my Drs approval.) I will post my experiance on it after I try it. But, just wanted to throw that out there for you to ask your Dr. abuot when you ask about other things.

I hope you will find something that I have written that will help you. I know it is hard to be in such pain, and must be especially hard to feel like that wihile working! Hope you feel better soon!

Kind regards,
Amarante

[ICNDonna]

There's a cushion in the ICN Shop that is designed to keep pressure away from the perineal area. I have two --- one for the car and one for inside.

Donna

[Cat1961]

Hi everyone,

I am so greatful for the info Amarante. I looked up Vulvar Vestibaulitis and Vuvladynia and they just don't fit with the pain I am having.
The pain seems to be deep in the vagina, anus and low back. I recently had a test where they put a wond into the vagina to do a ultra sound looking around to see if they could find something. It feels like a burning aching around the outer sides and deep into vagina and anus. Sex is possible but the pain after is unreal. When they put the wond into the vagina I could feel a bad pain deep inside that radiates to other places. It is so hard to figur out I think the heating pad really helps with all of the pain areas. I think I will try the condom ice pack to see if it will help. I am going to the health food store as soon as I talk to the Nerolagist on the 21st to see if it will be ok to take the DLPA. I am so greatful for all of your help. I am going tomorrow to bye a cushion. I read that the Nerolagist can do a test to see if it is the Pudendal Nurve or not. So because I had a stroke I will have to ask him what end do you want to start with first? And yes when I wake up in the morning the pain is much better and after I sit for awhile or stand for a long time like an hour or more the pain gets worse. I hope you all have a nice weekend and thanks for your help.
Cathy :smile tee

[Cat1961]

Hi everyone,
I just went to the Neurologist today. I was sent to him because of a mild stroke I had. I asked him about the pain I was having and he discribed the condition a lot differant than what I have read. And just told me to go to the GYN or back to the Urolagist. I feel like a yo yo. At what point do you need to say I can't do this anymore? After leaving the Dr office I feel like just giving up. I know I can't do that so where do I go from here? I am going to call the GYN and start there again or maybe I should start with psychiatry first because they will be sending me there if they can't find something. I went for 2 years in pain because no one figured out I was having ovarian cycsts until someone realy took an interest in my situation I was sent to the crazy doctor. I have a lot of respect for those people that can do that job but they can't fix me eather. I think I am feeling a little bit grumpy, sorry just need to tell someone out there in the world that I need help and feel let down. I just want you all to know that because of your help my days are much brighter than they were and every little bit counts.
Cathy:bow:

[amaranthe]

Sorry your appt with the Neuro was so disappointing! I know how frustrating it can be to be bounced back and forth from Dr. to Dr.!

However, after reading your posts, I personally am inclined to believe that it is Pudental neuralgia or Pudental nerve entrapment. I know very little about these, but there is a forum on the ICN with lots of great infor about them, including symptoms, Drs who are knowledgable, etc. Please read about them and see what you think. If you think so too, talk to your Gyn or Uro about it and see what they suggest.

Also, if you havent done so already, you need to get your pelvic floor muscles evaluated. Lots of ICers and PN/PNE sufferers also have pelvic floor dysfunction. (Not sure what the percentage is on that, but it is VERY HIGH!) If you are d/xed with this by your URO or Gyno, they can refer you to a physcial therapist who treats it. Lots of patients get a great deal of relief from this. (Though, like with everything else, it doesnt work for everyone.)

Again, sorry you had a bad day and such a disappointing visit. But, every bad visit we have takes us one step closer to a Dr. that WILL be able to d/x our conditions and know how to treat them.

Kind regards,
Amaranthe

[Kara29]

Cathy,

The advise that everyone has given to you is awesome. I have some information to add that may overlap with what these other wonderful women have told you.

There are several medications after finding out that you have PN or PNE that your Doctors can prescribe that can be effective for both conditions. Take this list to your Doctors and ask what they think. Or you could get a final diagnosis for PN/PNE via a Pudendal Nerve Specialist and then go from there with it...............

Up until a few years ago, PNE was only diagnosed and treated in France, now we have a few specialists in the US that diagnose and may also treat it. The best thing to do is to contact one of these doctors via phone or email and ask how to proceed to get an appointment set up.

I guess I'll give you the list of Pudendal Nerve Specialist first, and yes, if you really suspect this is the issue you may have to travel far for a true diagnosis to be made :

North American Physicians



Dr. Stanley Antolak is located in Minnesota and is a urologist formerly with the Mayo Clinic that has spent many years treating patients with pelvic pain. He performs pudendal nerve motor latency tests, guided nerve blocks, warmth detection threshold test (WDT) and administers the self care program.

The Center for Urologic and Pelvic Pain

MAPS Pain Clinics
7400 France Ave South, Suite 100
Edina, MN 55435
763-537-6000
Website: www.centerforurologicandpelvicpain.com

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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

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Dr. Aaron Filler is a neurosurgeon that offers a pudendal neuralgia diagnosis as well as surgical treatment in Santa Monica, California. If you are interested in making an appointment, you can contact Dr. Filler directly through this appointment request form on his website.

Institute for Nerve Medicine
Center for Advanced Spinal Neurosurgery
2716 Ocean Park Boulevard, Suite 3082
Santa Monica, CA 90405
Phone: 310-314-6410
Toll Free: 866-41-NERVES
Fax: 310-314-2414


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Dr. Allan Gordon, a neurologist with offices in Toronto, Ontario, performs guided nerve blocks to treat PN / PNE.

The Wasser Pain Management Centre
Mount Sinai Hospital
600 University Avenue, Rm. 1160
Toronto, Ontario, CANADA MSG 1X5
Phone: 416-586-5997
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Dr. Michael Hibner is a surgical gynecologist St. Joseph's Medical Center, Phoenix, Arizona. He is also an Assistant Professor of Clinical Obstetrics / Gynecology at the University of Arizona, College of Medicine.

Arizona Center for Chronic Pelvic Pain

St. Joseph's Medical Center
800 W. Thomas, Suite 800
Pheonix, AZ 85013
Phone: 602-406-6017
Fax: 602-406-4011


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Dr. Sheldon Jordan is a California based neurologist that performs guided nerve blocks and performs the pudendal nerve motor latency test.

2811 Wilshire Boulevard, #800
Santa Monica, CA 90403
Phone: 310-829-5968, ext. 244

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Dr. Stephen Irving Mann, based in California, performs the pudendal nerve motor latency test.

2801 K Street
Suite 410
Sacramento, CA 95816
Phone: 916-733-5024

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Dr. Eduardo Quesada is an anesthesiologist in Manchester, New Hampsire. Dr. Quesada manages medication, performs CT guided nerve blocks, and does localized injections. Dr. Quesada has partnered with Dr. Conway (an ob / gyn) 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.

Pain Management Center

The Elliot Hospital
One Elliot Way
Manchester, NH 03103
Phone: 603-663-6730

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Dr. David Redmond is a physiatrist that performs pudendal nerve motor latency tests in South Carolina.

1910 Blanding Street
Columbia, SC 29201
Phone: 803-256-4107
E-mail: mdredmond@prodigy.net



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Dr. Ken Renney is the diagnostic physician and coordinator for patients wanting to have treatment in Houston, Texas. Other members of the Houston Team include Dr. Charles Popeney (Neurologist), Dr. James Murphy (Radiologist), and Dr. Lee V. Ansell (Neurosurgeon).

Houston Orthopaedics Sports Medicine Associates, P.A.

2500 Fondren Road
Suite 209
Houston, TX 77063
Phone: 281-565-8800
Fax: 281-565-8808


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Dr. Jerome Weiss is a urologist in San Francisco, California that is a leader in conservative treatments for pudendal neuralgia. He performs nerve blocks, physical therapy, trigger point injections and heparin injections.

The Pacific Center for Pelvic Pain and Dysfunction

1199 Bush Street
Suite 650
San Francisco, CA 94109
Phone: 415-441-5800
Fax: 415-441-4946



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Dr. Richard Marvel is an Obstetrician/Gynecologist. He is currently able to provide diagnosis and treatment for pudendal neuralgia. He is able to provide pudendal nerve blocks and also has been trained in the Transgluteal Approach to surgery. He also is currently offering Botox injections as well.

6569 North Charles Street
Physicians Pavilion West Suite 705
Towson, MD 21204
Phone: 443-632-0200

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There is a Dr. Fred Howard who diagnosis PN and is able to provide pudendal nerve blocks. His information is:

Dr. Fred Howard, Jr., M.D., M.S.
Professor of Obstetrics & Gynecology.
Telephone: (585) 275-4004
585-241-3210
http://www.urmc.rochester.edu/obgyn

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Dr. Octavio Calvillo, is a Board Certified Anesthesiologist, with an added qualification in pain management, in Texas. He is currently performing the pudendal nerve blocks. He is also able to provide medication management, for neuropathic pain.
Dr. Octavio Calvillo, MD, PhD
Interventional Pain Management
6560 Fannin, #1612
Houston, TX 77030
713-979-3190 office
713-979-0132 fax
Website: www.paindiagnostics.org
Email: painmodulation@yahoo.com

Medications that may help PN/PNE and can also be used with treating IC are:

Medication can be extremely helpful for treating Pudendal neuralgia.. Medication from several different drug classes are used to treat neuropathic pain, including topical agents, tricyclic antidepressants, SSRI's, anticonvulsants, and nonopioid analgesics. The common underlying mechanism of action is reduction of neuronal hyperexcitability, either peripherally or centrally. In a sense, the nerve impulses are blunted.. Clinical trials give some guidance on agent selection, but they do not predict which agent will relieve an individuals pain. There may be some trial and error in trying different medications. What may work for one person, may not work for another. There may be different medications tried, before finding the right combination that works optimally in treating the pain.

Topical Agents: Topical agents offer the advantage of local relief without systemic toxicity. Capsaicin cream, which contains an extract of chili peppers, is sometimes used to treat neuropathic pain. It may act on unmyelinated primary afferent nerves by depleting substance P, a peptide thought to be involved in pain transmission. Depletion requires repeated and consistent use of capsaicin. The most common side effect is a burning sensation that decreases with consistent use.. Lidocaine is also used topically, it comes in two forms, one is a cream form and the other is a patch form. Some people have seen relief with this. There are also compounding agents that your doctor can prescribe. Some people with pudendal neuralgia have used Belladona & Opium suppositories, valium suppositories and a multitude of other compounding agents that may help topically, like a Neurontin cream. Your doctor may be able to help you find the right topical agent that helps provide the maximum relief.


Antidepressants: Both tricyclic antidepressants and serotonin reuptake inhibitors are used to treat pudendal neuralgia. Tricyclic antidepressants (TCAs) are often used.. Numerous clinical trials demonstrate the safety and efficacy of TCAs.. Amitriptyline was the first tricyclic used to treat neuropathy, and it is still widely prescribed. Amitriptyline also has a high incidence of anticholinergic side effects. This can lead to delirium in elderly persons and should be avoided in that population. Desipramine and nortriptyline, which have the least anticholinergic activity of the TCAs, are equally efficacious substitutes. The pain-relieving properties of TCAs occur independently of their effect on mood.

Anticonvulsants: Anticonvulsants are considered second-line therapy for most neuropathies. Carbamazepine (Tegretol), phenytoin (Dilantin), gabapentin (Neurontin), lamotrigine (Lamictal) and Lyrica are all used to treat neuropathic pain. The ones most widely utilized for pudendal neuralgia are Lyrica and Neurontin.

Lyrica - Lyrica is now being used to treat Pudendal Neuralgia. It is FDA approved to treat neuropathic pain. There are some studies showing that the combination of Lyrica and Cymbalta have given some pudendal neuralgia sufferers greater relief than utilizing any one of them alone.


Carbamazepine: Carbamazepine is considered first-line therapy for trigeminal neuralgia. Clinical trials suggest its efficacy for treating diabetic neuropathy, but results are mixed for postherpetic neuralgia.
The most common side effects of carbamazepine are dizziness, giddiness and dyspepsia. These symptoms are dose-related, and can be minimized by starting with low doses. Carbamazepine carries a black box warning for blood dyscrasias, including agranulocytosis and aplastic anemia. Both of these side effects are idiosyncratic.


Gabapentin: Until recently, evidence for treating neuropathies with gabapentin was based on anecdotal information or case studies. However, objective evidence from randomized, double-blind trials is available. Gabapentin is more effective than placebo at reducing diabetic neuropathy and postherpetic neuralgia-associated pain. The most common side effects associated with gabapentin are asthenia, headache, dizziness and somnolence. Ironically, gabapentin has been reported to induce polyneuropathy.


Lamotrigine: Lamotrigine shows promise for decreasing pain associated with trigeminal neuralgia. However, it was no better than placebo when used to treat other types of neuropathic pain. The side effect of most concern is skin rash, including Steven-Johnson's syndrome. To avoid this, therapy should be initiated with low doses and titrated slowly to a therapeutic dose.


Analgesics: Opioid treatment of neuropathic pain has been controversial over the past 10-15 years. Opioids were thought to be ineffective for treating neuropathic pain, but evidence is mounting for the use of opioids in patients who have failed other modalities. In addition, novel analgesics such as tramadol may offer new options in treating neuropathies.


NSAIDs: Neuropathic pain relief from NSAIDs has varied widely with the type of neuropathy and agent used. In particular, with pudendal neuralgia, if their is an inflammation of the nerve, utilizing medications like Ibuprofen may be of help.


Tramadol: Interest in tramadol for treating neuropathic pain stems from its inhibition of norepinephrine reuptake and release of serotonin, similar to the tricyclic antidepressants. Its active metabolite, (+) M1, also binds to the mu-opioid receptor. Only a few small clinical studies have examined tramadol's efficacy on neuropathic pain. In one study of 34 patients with polyneuropathy of varying etiologies, tramadol was superior to placebo at reducing both ongoing and touch-evoked pain The most common side effects of tramadol are somnolence, constipation, and headache. Tramadol should be avoided in patients with a history of seizures or substance abuse. In addition, there is a risk for serotonin syndrome if given with other serotonergic agents, such as SSRIs, MAO inhibitors, and triptans.


Opioids: A small body of evidence suggests that opioids may relieve neuropathic pain in a select population of patients. Opioid analgesia appears to be dose-dependent and related to serum levels when used to treat neuropathic pain. Intravenous fentanyl is more effective than placebo at reducing neuropathic pain, regardless of etiology. Controlled-release oxycodone may decrease pain and allodynia associated with postherpetic neuralgia when given at doses of 20-60 mg/day. Morphine has also been used to treat nerve injuries. In general, neuropathic pain relief with opioids remains controversial. Neuropathic pain may be less responsive to opioids than other types of pain, and often requires the addition of one of the previously discussed agents to provide relief. As a pudendal pain sufferer myself, I have to say that opiods have definitely helped me with my issues with pain. It helps to keep the "edge off" of the pain, but does not totally take away the pain. If you feel that your pain is not being managed well with non opiod medications, then speaking to your doctor about medication management with opiods would be the next step in managing the pain.


Other Agents: Baclofen is used as a first-line agent to treat trigeminal neuralgia, with or without anticonvulsants. Baclofen blocks both presynaptic and postsynaptic GABA B receptors, which are concentrated in the spinal cord on the primary afferent neurons. This decreases the response of nerves to electrical stimulation and other pain stimuli. It may also inhibit the release of substance P. The most common side effect is drowsiness, which is partially avoidable by starting with a low dose and titrating slowly.

They also use the following in treating PN/PNE:

Physical Therapy

Botox

Pudendal Nerve Blocks

Pudendal Nerve Decompression Surgery

Neuromodulation

Intrathecal Pain Pump

I see Dr. Mark Conway. If you have any more questions about Pudendal Nerve Entrapment or other pelvic disorders, he is a good one to see because he is an OBGYN that is well versed in PNE and other chronic pelvic pain disorders. He diagnosed me with PNE and Vestibulitis in March of 2007. I am having PNE Decomp in two weeks because I failed all of the medications.

Sometimes it's about finding the right sort of Doctor who can treat multiple conditions. I also see Dr. Fred Howard who is a chronic pelvic pain specialist. He actually wrote the first book in the 70's on chronic pelvic pain. Pelvic Pain includes your abdomen all the way down to the anus and everything in between.

You can PM me if you wish.

For more information on PN/PNE you can also visit this website: http://www.pudendalhelp.com/home.html

I hope we can help support you as you find out what is going on....:welcome: Cathy, please don't give up. We all understand how frustrated and disappointed you are with your appointments yielding no helpful insight into what could be going on. I've been doing this for 10 years. Take a few days of down time to rest and recoup and then get yourself back up, dust yourself off, and contact some of these doctors to get on the way to finding out what is happening. There is a section of this website that deals with the Emotional Aspects of Dealing with PN and Chronic Pain in general and how to explain what is happening to family and friends. I encourage you to go to this link and read and you will find that you are not alone here: http://www.pudendalhelp.com/Emotional_Aspects.html

Believe me when I say, you are not alone in your situation. We are all here for you if you need support and encouragement. You've found the right place.

Kara29

[amaranthe]

WOW, Kara! That was some awesome information! Dont know if it helped the OP or not, but, it definately was helpful to me! Thanks again for doing that! (I know it had to take a while just typing all that up, let alone the years spent gathering that info!) We sure do appreciate it!

[Cat1961]

Hi Everyone,:hi:
Thank you so much for the info Kara, I have been trying to catch up with somethings at work so I printed it out so I could read it later. One of the doctors is located neer me. I also was able to contact my GYN and she is working on it now and wants to review my case to see if she can figure out anything. I have had a lot of differant tests over the last few years that she has not had a chance to review. I am hoping she will find something. She also said she is going to find out what kind of test would be the best way to figure this out. I figure if she can't get it figured out then I will call the doctor in my area. I will just have to figure out a way. I am going to reread the info one more time because by the time I got to it I was really tired. I work full time and after work I do a lot of paperwork for my other self employment job. Also the things around the house my husband is retired he has MS. So as you know when I am sick it really makes it hard. Thank you all for your help and I will let you know how it goes with the GYN. TAke care.
Cathy :pray:

[Kara29]

We'll be waiting for you when you find out.

Well Wishes,

Kara:angel:

[VCNJ84]

The type of doctor that finally found the cause of my vaginal pain was a vular pain and chronic vaginitis specialist. It was a 2 month wait, and had to go into the city...but in the end was well worth it, because no GYN had a clue!!

Good luck with getting to the right place...don't give up!

[Melanie R]

CAt, i have had this condition for 7 years. I have all of the same symptoms that you have. Finally, I had the PNE Neurologist Specialists do extensive testing to test for PNE... I had a very abnormal reading come back for the right pudendal nerve. I didn't even tell the doc that it was just the right side. I was testing his integrity by not telling him it was just the right. I trust this team of doctors. They have done nerve blocks on the nerve but apparently less than 10% of patients have improvement with nerve blocks. I am schedules for surgery in Houston, TX with Dr. Ansell on June 8th. My boss thinks it's funny that I'm excited about having surgery! I said, "you don't even want to know what I've been through for the past 7 years"....surgery is light at the end of the tunnel!

I would consult with the experts on PNE only...other doctors just arent knowledgeable about this condition...even regular Neurologists that do not specialize in PNE...it's insane! I would only get tested by the specialists that Kara provided in a previous post. You will have to send them an MRI and CT scan done at a Diagnostic Lab in your area so they can rule out any possible other problems that could be causing your symptoms...(like cancer...sounds harsh but that is what they told me they were ruling out with those X-Rays)... I wish you the best of luck!!! The sooner you get this diagnosed the better you have a chance of having a successful recovery...They told me to hyper-avoid sitting until my surgery so I didn't cause permanent damage because the entrapment has been there for so long that the pain has been memorized by the nerve, muscle, the nerve can get thicker from inflammation and scar tissue could form causing irreversible damage.
I know this is scary, but I am only being totally blunt so that the chances
of you getting better are great!!!

Good luck!!! If you go on the website www. hosma.com, you will find an abundance of info. on PNE!

Take Care chica! :pray:

[ICsmiles]

Cathy, Hi, my story sounds like yours too ... and it has taken so many years to try to figure out what is going on. I still don't know really, but I sure have seen a LOT of doctors!

Kara has been very helpful to me and others with her experience with bladder surgery and now going through PNE surgery. She is so generous with her time to help other IC / PNE patients.

ANd MElanie! Thank you for posting about your surgery and your experience! I will be watching for news of your surgery and how you are doing!

I suffer from pudendal neuralgia and pelvic floor dysfunction along with IC. Everything you described has been my experience - only I have been through a lot of physical therapy in the last 2 years, including going to the Headache in the Pelvis clinic last year. I have also tried botox recently, but have not improved after 2 months. So I am going to talk to my doctor - and ask "what's next?" - I think physical therapy has been flaring me to tell the truth. I have even been doing the home treatment, basic on her instructions. I also do the meditation and relaxation therapy. But in all this time, instead of getting better I seem to flare worse.

For me it is coming down to surgery finally. I have had IC and pelvic pain for 14 years, and it has progressed to where i am homebound, on disability, and have a very limited life with daily pain.

Melanie, I pray that your upcoming surgery is the answer to your pain, and please let us know how you are doing! I may be following in your footsteps! :smile tee
Sharon aka ICsmiles

[Cat1961]

Hi everyone,

My Gyn sent me to a therapist. I think it went well, I was happy with the visit and her knowlege. She put a tens on my but and back to show me how it works. She is sending me one in the mail. She also after looking at my lower back seeing that it was swelled up told me to increase my pain meds and ask the doctor to put me back on the norco so that the pain is more under control. She feels she could be a small part of what I will need to get well. Does anyone else have swelling in the lower back near or just above the tail bone area? Thanks to all of you I may have a chance to have a normal life again. We are going to start more work on the 9th of next month. The therapist believes it is the padindal nerve and possable other things in that area. Have a great weekend. Cathy:woohoo:

[Kara29]

They think I had the PNE for over 10 years. It was extensive and they don't think it will help my main symptom of urgency but it may help other aspects of my life a bit easier as I heal. I have days where I am happy and hopeful and the days that the urgency is high, I just cry. This is a tough road we are all on and emotions are natural and normal.

Today was a painful day but I had some fun and was able to put it to the corner of my mind in stead of the front. There were a lot of distractions that kept me busy not thinking about the urgency which has been my main complaint over a 10 year period with no resolution but pain meds and ice to dull the symptoms that may never leave me...................

Kara

[Cat1961]

Hi everyone,
Thank you for all your help. I just found the 2nd page of this thread. I learn something new everyday. I just talked to my PT on the phone and she said she was only going to do one or two visits with me because my doctors don't want to prolong the pain I am having, they just want me to see the pelvic pain Dr. So it sounds like PT is not the real answer, just like you are telling me. I can relate to the feeling of being stuck in the house because the pain meds keep me from driving unless I don't take them and then what is the point, you can't feel well to do anything. If my kids don't take me I don't go. I have a 9 min drive to and from work that I don't take anything and by the time I get home from work I am using ice and heat to help until the pain meds kick in. I get as much stuff around the house as possible done and take a hot bath breath a little and lay with my feet dangling from the couch to streach out the low back. I really miss my life. I can only keep going knowing that i will find a way to beat this problem. I am so greatful for all of you because you know what I am going through. No one else could understand this, not even my family:shake:. I am taking Codiene #3 and my husband want's me to take the Norco because he thinks I can get more done around the house when i am not in pain and that is true but I don't like taking them. Do any of you have problems with spouse not understanding? Thanks again for all your help, I am going to look at the Talking to your family about this problem sight. Cathy :hi:

[CharlotteY]

Hi Cat,

You asked if anyone had treatment for IC that actually helped their PN problems. I did. I had many weeks of bladder instillations for IC, which I never really had.

It was only later that I was diagnosed with PN and told that I never had IC, I was just misdiagnosed. It took me a while to understand why I received such relief from the Lidocaine/Elmiron/Bicarb/Sterile Water bladder instillations. It always took about 5 or 6 hours for me to receive any relief after a treatment. My theory was that it took this long for the Lidocaine to travel across the bladder lining and to get to the area of the pudendal nerve that was causing me pain.

I sometimes think that I may have stumbled across another treatment option for PN, if the catheter itself wasn't so dang uncomfortable.

I hope you are feeling better...

[Kara29]

If you all need anything let me know, or PM me.

Kara:smile tee

[Cat1961]

Thanks for your reply. I had the same thing happen, I didn't find the relief for hours or sometimes days later. I recieved a treatment just 2 days ago and I was given a larger cath to open things up because I was having a hard time getting urine out. I was unable to urinate for 3 hours after the treatment so that stuff was in there a longer than normal time. I have been feeling very tired and unwell, I don't know if others have had a bad reaction to the medication but this is the worst I have felt after having a treatment. I did notice in the past that I had milder case of this after treatment. Thanks for letting me know about your experience with treatment, it will help put the puzzle together. Cathy :hi: