t.e.n.s. and vulvadynia

[SillyPixie]

Has anyone used the t.e.n.s. unit with success for vulvadynia? My vulvadynia is worse than my IC and causes me to be in pain 24/7. My PT had me try the t.e.n.s. for about an hour on Monday, and I was virtually pain free all day. I would like to know if anyone has had good luck (or bad luck) with this and also what levels they used. Thanks!

[navemj]

I was recently using a tens unit for my back and decided to try it for the vulva pain. Where do you place it? I put it on my lower tummy. It helps with the pelvic pain but not the vulva pain.
Maryann

[SillyPixie]

I've tried it twice at the physical therapist's. We tried it once with all 4 stickies on my lower back, and one with two on my lower back and two on my inner thighs. The time with all 4 on my back seemed to help more.

[wheezie66]

I have access to one however, because I have an implanted defibrillator - that option is not practical.
I have suffered since 1989 with pain over my pubic area and clitoris - made
much worse by sitting. I was bullied into a hysterectomy in 1989. The only thing that helped me in the past was a combination of Tegretol and Prozac, which leads me to believe that my problem is PNE and not VV or IC. I had to stop the Tegretol when I had a seizure. At present, my PCP and I are in a standoff. He has referred me to a Specialist in VV whos assistant has insisted that I be tested for IC - a test that I refuse to take because I have none of the symptoms.I have used the Estrace cream which has had no effect - other than mild lubrication and at an $80.00 co-pay I may be better off using olive oil or Vitamin E.
I am simply venting my frustration at not being listened to. Thanks!

[SillyPixie]

You are welcome to vent whenever. I understand. are you in the position to switch doctors? Do not get the test for IC if you don't have symptoms. A cystoscopy is invasive and painful. It's so funny, because when I was originally being diagnosed for IC, my urologist wouldn't give me the test because he thought I was too young (17) to have IC and he said "You don't want to have that anyways." It took three months to talk him into it, and sure enough, I have IC. I switched urologists immediately. I am a firm believer in having doctors that stand behind you. Where do you live? Is there a list of good doctors you can get from your local IC group? Do you have an HMO or? And what is PCP?

[SillyPixie]

I am now using the tens unit every day and it is really helping me. I have been using it on my lower back for about 45 minutes a day and my upper back for longer, up to eight hours. My pain levels have lessened to almost non existant except during urination and intercourse - a huge improvement for me! The only thing is, I have noticed that when I use the tens every day, my back starts to hurt, more than usual. My fiancee thinks it may be because I am "working" the muscles every day with no rest. I haven't used the tens in a few days the way I have been, and my back is better but my IC/Vulvadynia is worse. Grr.

[wheezie66]

Pixie - I appreciate your response. PCP = Primary Care Physician. My HMO
limits me to who I can see so I have to stay within the Network. I have none of the symptoms of IC and the test was ordered because I casually mentioned that at one time it was suggested as a possible cause of my pain.
This was in the early 90's and was a case of "I doubt that you have IC but you might want to try Elmiron" From that casual mention I was scheduled for the Potassium Chloride test which I understand is quite painful and 11 follow up infusions. My only question is - do I return to the OB/GYN to pursue
treatment for Vulvodynia which I do have or do I attempt to get referred to
a Neurologist to possibly get diagnosed with PNE?? Thank you for allowing me
to post my feelings and questions. My family wants me to "do something"
but other than go back to my Primary Care Physician - what can I do?

[SillyPixie]

Wheezie,
Hi there! Sorry, I asked the wrong question. I meant to ask what is "PNE"? Something to do with the pdendal nerve? (No idea how to spell that one!) I definitely recommend you pursuing both treatment for vuvladynia and the other one. Have you tried physical therapy? I'm doing it now for vulvadynia (worse for me than my IC) and I think it helps. It's rough that you have an HMO and are limited. Do you know if there are any good uro-gynocologists, physical therapits or neurologists in your network? What are your basic symptoms and do you find relief ever?

Hugs,
Laurel

[wheezie66]

Laurel thanks again for responding. The pain I have occurs when I'm sitting.
Standing used to relieve it but even that doesn't help that much anymore.
The only thing I can come up with through Internet Searching is Pudendal
Nerve Entrapment in which the main symptom is pain on sitting. When I saw the OB/GYN - I had typed up a pain history and in Bold listed the only thing that had helped me be painfree in the past was Tegtretol and Prozac but that was totally ignored and the physicians assistant glommed onto my mention of IC and scheduled me for the Potassium test. (An offshoot of the visit
was that she discovered a bladder infection along with a vaginal infection -
ordered two antibiotics - which unfortunately put me in the Hospital for four days with a C-Difficile infection) Said bladder infection had caused no symptoms and came as a surprise to me. I strongly feel that my problem
is related more to a nerve situation than IC or Vulvodynia, but I feel that I'm being basically patted on the head and told "We Know better" so I am utterly frustrated!

[SillyPixie]

It can be soooo frusterating when medical professionals don't listen to you. What area are you in? Can you get a list of good doctors from someone, maybe on this site?

[wheezie66]

I saw my Primary Care Doctor today and he basically blew off the PNE suggestion and told me to go back to my OB/GYN. For pain - he suggested two Alleve twice a day! Ican't quite see that working since 1500mg of Vicodin doesn't touch it. :headbang:

[SrMaggie]

Oh my Wheezie, you are really suffering. I am so sorry. I can see why you are frustrated. I would check the IC Network for some docs. I found one, even though he is 2 1/2 hours away. He has really listened. It's so important that they listen - not just with their ears, but their heart so that they can understand your pain. I'm praying for you.
Maggie

[pottywoman]

When I use the tens on my back it makes the bladder pain worse. Anyone else have that? It feels like it is shooting the bladder. I can only wear mine on top of the bladder. Doesn't seem to help the VV any either.

[Casi]

HELP! Im in great pain what is a t.e.n.s. unit?????

[navemj]

Casi,
You can get a t.e.n.s unit from your doctor or physical therapist. It has electrodes that stick to the skin to help with muscle spasms. I would highly recommend it!