What are your symptoms?

[cc123]

I have been having issues with rectal pressure, achy vagina, mild cramps, and tender clitoris for a few months. Been in and out of doctors and noone can tell me what is wrong with me. I asked the pain specialist I saw about PNE and he said he couldn't rule it out for sure but that he didn't think that is what I had. I told him that according to the symptoms listed on websites it sounded pretty close.

Could anyone here please list exactly how they feel with it? Is it constant or does the pain/discomfort come and go? Does it hurt immediately when you sit down every time? Or can you sit sometimes and not others? What is the pain like? Pressure, tingling, sharp knife like and where? Is your area down there numb to the touch or can you feel sensations or does it hurt to be touched?

Thank you so much. I am becoming very desperate for an answer as to what is wrong with me so that I can do something about it or at least except it and go on...Not knowing is driving me crazy.:help:

[cc123]

Has anyone here been diagnosed with this? I'd really appreciate your feedback. I am desperately trying to self diagnose so that maybe I could point the docs in the right direction.

Trying to keep my chin up (but it is getting harder and harder every day),
cc

[Kara29]

I have been diagnosed with this by a great PNE Doc, Dr. Mark Conway, in New Hampshire. If you can tell me your general location, I can try to locate a PNE Doctor that can hopefully rule it out or diagnose you. Most Doctors have no idea what this is. That is why I want to hook you up with a specialist.

My symptoms are not traditional and my case is complicated but I may as well share. I have the still need to pee feeling any time those organs get used, like a bowel movement, intercourse, or orgasm. My primary symptom is severe Urgency to pee but I have nothing left of the urinary system down there. Everything has been taken out.

I was diagnosed with PNE 2 years ago by Dr. Conway here on the East Coast.

I can give you a list of traditional symptoms of PNE, but remember we are all very different and it even happens to Men.

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

Your best bet is to find a Specialist in PNE and Chronic Pelvic Pain Disorders. I will be happy to assist you with the PNE Specialist. If you don't want to post any private info here you can Private Message me and we can talk that way.

I want you to know that you are not alone with your symptoms. Many of us on the ICN share some or all of these symptoms. It's not wise to self diagnose yourself, which is why I want to help you find a PNE/Chronic Pelvic Pain Specialist.............

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


Well Wishes and Warm Hugs,

Kara

I was thinking, many women are diagnosed with something called Vestibulitis as well as PNE, sometimes the symptoms are similar and often overlap with PNE symptoms.



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.


I've had a Vestibulectomy and I am having the PNE Decompression Operation sometime in the spring and summer................Please PM me if you want to talk further.

[happymom]

Kara,

Your story is inspiring and I have been motivated by your perseverance. I would love advice on finding a PNE/ pelvic pain specialist in the Dallas/ Ft. Worth area. I am pretty sure that I have PNE or prudential neuralgia. My symptoms began three years ago with pelvic pain upon laying down (I sleep on my stomach and my hips are not always level). During that time, I had a stressful teaching position at an inner city school in Dallas and could often not use the bathroom for several hours at a time Then, I stated having severe clitoral pain once a month. My condition worsened and I saw several doctors. After two years, I was referred to a uro/gynecologist who performed the potassium sensitivity test along with a cystoscopy. My IC went from moderate to severe after this procedure. I then had six bladder instillations and became worse after each treatment. Later, I realized that I probably had a Lidocane allergy. I currently take hydromorphone for IC pain and am unable to work.
Then I had physical therapy my urologist’s office. The therapy involved having a medical assistant insert a probe into the vagina that emitted an electrical pulse. After the third treatment, I had chronic, knife like clitoral pain. I have noticed that the pain is worse upon sitting and as the day progresses. This year, I had physical therapy from a pt who specializes in the pelvic floor. She leveled my hips and performed intervaginal massage. I noticed improvement with my pelvic floor disfunction but my nerve pain did not improve. This week, my hips became unlevel again and I have noticed a huge increase in the clitoral pain.
I didn’t have a problem with urinary frequency until after the six bladder instillations. It was later cured by having six Post Tibial Nerve Stimulation treatments. Usually I have IC flares at night and am more manageable during the day. I think that you are an IC/ PNE expert and would great appreciate any advice you have. Thanks.

[lostindiapers]

I was diagnosed with Pudendal Neuralgia back in April of this year after suffer with the unknown for 7 years. My symptoms are:

Pain while sitting
Difficulty urinating
Burning urination
leaking urine
Painful bowel movements
Pain during and after sex

I have a flair up almost every day and when I do, nothing will ease it up. I pretty much lay down and ride it out. The medication I am currently on are:

Hydrocodone/APAP 10/325mg 4 times a day
Hyomax-SL .250mg 3 times a day

I was on other medication but they didn't work so my neurologist told me to stop taking them. I will be seeing him again on the 16th so I know my medicines will change. This condition, in my opinion, is HELL!!! I am in so much pain every single day.....I don't know what to do!

[Kara29]

This is the only listing I know of in Texas. Most of us have to travel wide and far for our PNE experts since there are not many in the US.

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


I hope this is near you and if not, I hope it's not too far.

Hugs,

Kara

[JennaS]

Do you know of any specialists in Southern California?

[Kara29]

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

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



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



Dr. David Redmond is a physiatrist that performs pudendal nerve motor latency tests in South Carolina. We have heard that he is also performing guided nerve blocks but have not yet confirmed this information.

1910 Blanding Street

Columbia, SC 29201

Phone: 803-256-4107

E-mail: mdredmond@prodigy.net

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

E-mail: Jerome.Weiss.MD@spuninfo.org



You are lucky to live in CA as they offer the most support for PN/PNE and Pelvic Pain diagnosis and teatment!:smile tee:smile tee

Kara

[JennaS]

WOW!! Those are great referrals!! Thank you so much!! I guess I am pretty lucky to be in SoCal.

But we do have those earthquakes......lol

[lostindiapers]

Do you know of any specialists in or around Tampa, Florida?