Health Organization for Pudendal Education

I saw that autoimmune disease is listed as a potential cause for pudendal neuralgia, but does anyone know what specific autoimmune disease? I had a positive ANA on my bloodwork and am waiting to see a Rheumatologist. I also have a lot of burning in my feet and sometimes my legs. Is this normal with PN? The burning in my feet worsened after a S1 nerve root injection (1 1/2 months ago) and the aching/burning in my legs just recently started. Does anyone have PN and also have Fibromyalgia? Or think that the Fibro was brought on by the PN?

Hi Faith,
I'm glad you brought this subject up. I'm a patient of Dr. Conways, and during my first meeting with him, he brought up the possibilty of an autoimmune disease causing the PN.
He had me see a Rheumatologist and ordered bloodwork. In his letter to my PCP he wrote: "I am recommending the patient follow up with your office or possibly with a rhuematologist for a complete workup for any rheumatologic abnormalities, as well as for Lyme Disease. It has been my experience in many cases such as Karyn's that some underlying autoimmune process will be identified as a co-factor in her condition. I have also had several patients who were diagnosed with Lyme Disease who presented with pain issues". I saw the Rhuematologist and had the ANA done, which came back negative. I've lost count of the amount of tests I've had done for Lyme Disease. It seems every new doctor I saw ordered this blood test, even though they had a record of me previously having it done. I was also (incorrectly) diagnosed with Fibro by a former PCP and the Rhuematologist confirmed that mis-diagnosis. I wish I could explain the connection to autoimmune disease and PN, but I can't. I don't know what it is. And I don't know what Dr. Conway's experience is with that being a co-factor. Have you been accurately diagnosed with Fibro? I hope the burning you're experiencing subsides soon! I've never had burning in my feet but am so sorry you have this extra-added pain.
Warm regards,
Karyn

Many people including myself have those kind of symptoms due to misalignment, which is something we discussed in another thread, but the posoitive ANA is a big red flag. I got those tests and they were negative, my issue being entirely biomechanical - I think very few of us who have been screened this way have actually come out positive. I also don't know what autoimmune disorders are associated with PN, but with a positive ANA, a consult with Rheumatology should be a priority.

There are many autoimmune diseases associated with PNE. I recall there was a long list posted on the pudendal info site. I have had high positive ANA tests over the past 2 years and have been diagnosed with an autoimmune disease. My rheumatologist does not know if the two are related since I have many other contributing factors, but she said it is highly possible. I am looking into starting a new medication for the autoimmune disease but it will of course just add to the side effects of the long list of drugs I am already taking and is not in any way assured to help with the PNE.

Elizabeth

Hi Elizabeth,
Would you mind sharing what autoimmune symptoms you have? Have you also been diagnosed with Fibro? I'm sorry about you having to take more meds. While they won't help with the PN, do you know if they'll be effective for the autoimmune disorder?
Warm regards,
Karyn

Faith, it depends on the autoimmune illness. In MS the immune system attacks the myelin sheath surrounding the nerves. In lupus the immune system attacks various tissues, including the nervous system. But hopefully you don't have either of these problems. I think you mentioned low thyroid in another post so possibly that's what's causing the positive ANA results?

J Rheumatol. 1991 Oct;18(10):1529-31.
Autoantibody tests in autoimmune thyroid disease: a case-control study.

Petri M, Karlson EW, Cooper DS, Ladenson PW.

Department of Medicine, Johns Hopkins Hospital, Baltimore, MD.


Both positive antinuclear antibody (ANA) and anti-DNA antibodies have been reported in patients with autoimmune thyroid disease. We sought to determine the frequency of ANA and other autoantibodies in autoimmune thyroid disease versus control subjects. We measured ANA by 2 methods (mouse liver, HEp-2), anti-dsDNA, anti-Ro, anti-La, anti-Sm, anti-RNP, and anticardiolipin in 26 patients with Hashimoto's thyroiditis, 26 patients with Graves' disease, and 26 control patients. Positive ANA by either method were more common in patients with Graves' disease than in controls (p = 0.002 and 0.05). Although common (46.2%), ANA by HEp-2 method was not found significantly more often in patients with Hashimoto's thyroiditis than in controls. Evidence for systemic autoimmune diseases was not found: patients with autoimmune thyroid did not have autoantibodies other than ANA and did not differ from controls in rheumatologic symptoms. Positive ANA using the widely accepted HEp-2 method were commonly found in both Graves' disease and Hashimoto's thyroiditis. No evidence of subclinical systemic autoimmune disease was found, either by specific autoantibody tests or by increased frequency of rheumatologic symptoms or signs.

PMID: 1765977 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/1765977

I've also had positive autoimmune antibodies with thyroid disease but I think it's unrelated to the PN issues. I guess there could be a connection in that my immune system is just messed up because I've also had fibro-type symptoms for over 20 years. I know that Dr. Antolak sees a lot of PN patients with fibro and believes there is a connection but I don't know that anyone has nailed down exactly what the connection is.

Thanks for your post, Violet.

Violet M wrote:Faith, it depends on the autoimmune illness. In MS the immune system attacks the myelin sheath surrounding the nerves. In lupus the immune system attacks various tissues, including the nervous system. But hopefully you don't have either of these problems.

I'm wondering if this is the connection to PN that the docs are referring to? Please let us know how it goes after your Rheumatologist appointment, Faith.
Warm regards,
Karyn

I also came up with a positive ANA, although tests for lupus came back negative. Nothing really tied to it thus far.
Testing for Lyme disease came up negative with Igenex (one of the most accurate testing labs for lyme) but they still get false negatives a lot. One doctor I spoke with said 90% of her uncured pelvic pain patients get cured with Lyme treatment, even if their test comes back negative... which she said about 30% do. I am still undecided on whether to try this approach or wait... as PNE treatments seem to make more sense.

Pianogal, did she say what type of lyme treatment? I thought the typical treatment was antibiotics -- at least in the acute stage. I don't see that curing most of the people that I see on this forum.

http://www.cdc.gov/ncidod/dvbid/lyme/ld ... atment.htm
"The National Institutes of Health (NIH) has funded several studies on the treatment of Lyme disease. These studies have shown that most patients can be cured with a few weeks of antibiotics taken by mouth. Antibiotics commonly used for oral treatment include doxycycline, amoxicillin, or cefuroxime axetil. Patients with certain neurological or cardiac forms of illness may require intravenous treatment with drugs such as ceftriaxone or penicillin."

Violet,
She recommends long term antibiotic treatment. (and from what I've read online, not from talking with her, it seems you know the treatment is working if it makes your symptoms worsen in stages and then improve, the "herx" effect... like you have a week of hell and then all pain goes down a level. That shows that the disease is being killed.)

Her name is Dr. Deborah Metzger and her website is http://www.harmonywomenshealth.com
She's written a book on pelvic pain a while back. She helped me figure out that I'm gluten intolerant.
I'm not sure how extensive her knowledge of pudendal pain is, but she has worked with tons of pelvic pain patients through the years... like 30 years. She tends to test everything fyi to come to diagnosis so it can get very expensive...

She did a phone consult with me, and I had no idea she charges by time periods... it was like 500 bucks for an hour... so warning to all who call, talk fast, and follow up with email. She's been great with email follow ups and a super trooper with no charges... I just got dinged in the first talk.

She seems to sincerely care, although has quite a doctor personality. But her views and ideas are very new to me, and I'm open to anything new that has worked.... at least curious.

It was strange that she said 90/95% of her uncured pelvic patients are cured w/lyme treatment. Lyme is a sneaky disease that can mask itself as almost anything, so I am open to Lyme masking as pelvic pain.