Vulvadynia

[River]

If anyone is interested in Vulvadynia, I have some information.
I went to numerous doctors over the course of ten years. No one knew what was wrong with me.
I finally found a doctor who was studying this problem so I finally knew I had a real diagnosis of something.
He used the normal treatments of Vitamin C and it did not help.
The diet did not help.
A urologist told me to try this over the counter product, Prerelief, that changes the acidity of food. It did help a bit.
I finally found the cure on my own.
The culprit for me was oral contracepties. It took about three months after stopping them for me to have full relief. But if I start them again, it literally takes three days for the symptoms to return. It then takes weeks for the symptoms to go aweay again after stopping the pill.
Every once in a while I will feel some stinging or yucky discharge but it relsolves quickly.
I have been pain free for two years now after ten years of severe discomfort.
I really think it has something to do with Ph of the urine and vaginal flora. I had profuse sticky discharge. I used to douche with baking soda to dry up the drainage and that is the only way I could function. If the drainage was gone, I felt okay. It was like the discharge was eating my skin. My skin was raw and split.
Just thought thismight help someone else. What a waste to suffer so long and have so few doctors know what it is.

[jam]

It was interesting to see that there is only one post on vulvodynia. I have suffered with this for over four years. I am 61 years old. It came on suddenly with pain in the pelvic area, with the pain reaching a 9 on a 1-10 scale. I take neurontin 3600 mg. daily and cymbalta 60 mg daily. This only keeps the pain level to a 7 during the day and a 9 by late evening.

I have taken physical therapy to try to get my pelvic muscles to relax. This seemed to help some. I also tried a TENS unit and it did not help. The physical therapist stated that I had 40% more movement activity showing up than is normal on the computer instrument which measures pelvic activity.

I have been on numerous medications, had injections of marcaine into my pelvic area, and nothing seems to help much. I have the pain when I am sitting, and get relief when I am laying down or when I stand up. I
have hard spasms and pain in the pelvic area when I am seated. I also tingle all over my body - it feels like electricity is moving through my body. The pain and tingling are constant. The tingling and pain, when the pain level increases, is more on the right side of my pelvis than the left, the pain and tingling often extend from the groin down to my right knee.

I have no redness in the pelvic area and look normal there. I do have some trigger points there. I've been to my gynecologist and also been referred to another gynecologist/pelvic pain specialist/pharmacologist in a larger city and I am not much better than when the pain started over four years ago.

I was hoping to get in a research study at the gyno/pain specialist and did not qualify because not enough movement showed up on the computer measurements for me to qualify. The study was to try botox injections for the pain. Unfortunately, after I didn't qualify for the research I asked my insurance company to see if they would pay for the injections, and they denied it saying that it was "investigational".

I've also seen a neurologist and had MRI's of my spine and head. The neurologist said I seem to have a disorder of the central nervous system (because my tendon reflexes are all very overactive), but tests revealed nothing concrete. He could not give me an answer for this, so I don't know if the spasms and pain in the pelvis are related to to the tingling sensations that I feel over my entire body.

I am wondering if I could have vulvodynia and vulvar vestibulitis? Or could I have an entrapped pudendal nerve?

Does anyone have similar symptoms (pain when seated and the tingling
sensations)?

Any medications or treatment that have helped with pain?

[free spirit]

Jam,

From the sounds of it, I would most definitely research pudendal nerve entrapment. The information I was given when I was diagnosed with vulvodynia sounds just like it.

Hopefully the pt will help. Maybe ask about trying a neural block for the pudendal nerve. At least it won't make matters worse.

Good luck.

[Amy C.]

I was diagnosed with vestibulitis a couple of years ago. (nearly jumped off the table when my vulva was touched with a q-tip... very localized and not muscular pain--had already gone to a PT for the muscular pain, which reduced when I learned how to unclench) My OBGYN works with a large university and had just given a lecture on new treatments for this. She gave me an oral-anti fungal to take (I can't remember the name right now... not Lamasil though), and it COMPLETELY cleared the symptoms on a permanent level. Oh, and she gave me some prescription hydrocortisone cream as a topical treatment twice daily for a couple weeks to toughen up the skin. That seemed to work ok too.

The anti-fungal also cleared some other symptoms I'd been living with for 20+ years... migrating sore spots on my tongue, joint aches, and a foot rash. I ended up a a course of lamisil later to clear up toenail fungus, and the effects were very similar. I haven't had any of the yeast oriented symptoms in 3 years or so.

Regarding the tingling, you may want to check out an acupuncturist if you haven' t already. Could be some blocked energy on a meridian.

Good luck.

Amy

[Dr_Brody_DC]

I'd like to add to the notion that an alternative approach may work for a subset of sufferers that have not found relief elsewhere, especially if no superficial lesions or irritation are present.

Acupuncture is worth a trial. So is chiropractic, which focuses on releasing nerve entrapment/reducing nerve irritation, usually at the spinal level. My experience as a practitioner is that while it is hard to predict in advance who will benefit, those benefits are usually seen within the first few treatments. Extended treatment plans are not warranted, although if helpful initially, the patient and doctor usually figure out a schedule that provides maximal results with minimal intervention.

As the literature is scanty, I'd like to hear feedback from the forum -- has anyone tried Kegel exercises for vulvodinia? Have they helped, or possibly made the condition worse? You could make a theoretical case for either possibility, but I suspect that these exercises might be worth a try as well.

Dr. B

[free spirit]

Dr. Brody,

I have found relief using kegels. My pelvic floor muscle tension was sky high, around 15uV. I had been suffering from a chronic resistant yeast strain. Once the yeast was stopped, the pain didn't.

I do biofeedback to try and keep the level around 2uV, plus 60 kegels a 10 seconds on/ 10 seconds rest. This really did help relieve the tension. I am working my way up to doing the kegels 2x a day. I also am using lidocaine just on the affected area 1x day. It used to burn when I first started using it, but it doesn't anymore. I'm also using estrace 1x/day to help strength the vulvar tissue.

I started to feel relief within 6 weeks. I 'm hoping that after 6 months, my life will be returned to normal.

The pt that examined me looked for any skeletal or muscle abnormalities. All she found was the high pelvic floor muscle tension.

[jam]

Dr. Brody,

My physical therapist had me do kegals for a couple of months and it did bring the pelvic floor activity down, but the activity was initially all over the pelvic floor and the kegals made the activity become more localized in the pelvic area.

I had to quit the kegals because when the activity became more localized, the kegal exercises made the pain level go up.

[Dr_Brody_DC]

Thanks eveyone for the feedback. (I still think anyone who's only gotten partial to no relief should give realigning lower spine and pelvic joints a shot.) -- Dr. B.

[jam]

This posting is regarding a message I posted on Sept. 14, 2006. My message to Dr. Brody is that I took his advice and found a wonderful chiropractor on my own. I have made 16 visits to the office since Dec. 1. 2006. She has begun to stretch my appointments out to one visit every two weeks. The xrays made on my first visit showed I have a tilted pelvis on the right side, which she said perhaps was from a fall at some time in my life, and that it has worked into this pain and has affected my nerves in the pelvic area. I have held the adjustments well within the last four weeks.

My pain level (pain and feelings of constant spasms in the pelvic area) are about the same as when I started going in Dec. - only it has become more localized in the (pelvic lips) area,- both sides, rather than so spread out over the entire pelvic floor. Also the pain is deeper on the right side in this area than the left, and radiates down to my right knee. The pain has always been worse when I am seated. Sometimes at night, I have to get up from the chair and lie down in the floor because of the discomfort. As I mentioned in my posting in Sept. I have had this pain since Jan. 2002. I am on no medication for the pain at this time. The chiropractor wanted me to discontinue the 3600 mg. daily of neurontin - and the cymbalta (they didn't seem to be helping anyway).

She thinks that I have had this problem for so long that it is going to take the nerves in my pelvic area some time to calm down. I also still have the electricty/tingling sensations all over my body. I'm getting concerned that I am not getting better, yet. --- Any comments, Dr. Brody? Thanks.

[Dr_Brody_DC]

Dear Jam,

I agree with your chiropractor's assessment, provided that you are seeing some sort of progress over time. While I don't expect that you'd be able to feel improvement after each and every visit, an over-all evaluation (e.g., once a month or after every 5-10 visits) should demonstrate progress. If you hit a plateau, it's time to start cutting back on visits until you see your symptoms worsen. In other words, you want to get adjusted the minimal amount that it takes to still get the results you seek. Of course, you may find other benefits that accrue from more frequent treatment, but that's a different story.

Regarding the electrical sensations, has your serum vitamin B12, B6, and folic acid levels been tested? Vitamin B12 deficiency in particular can cause these type of symptoms. While deficiency usually causes a macrocytic anemia, you can't rely on a CBC (complete blood count) alone for diagnosis because the neurological symptoms can develop before the classic changes in the blood manifest. Also, taking folic acid supplements can mask B12 deficiency.

Finally, arthritis or necrosis of the acetabular joint should be ruled out. (X-rays usually) This often refers pain to the groin area rather than the pelvic floor in general, but I am not clear as to exactly where it hurts at this point, so I thought I'd throw that in as well. There is no reason to automatically assume that all your pain is from a single source.

These are other directions you might want to explore. --Dr. B