Vulvodynia

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Vulvodynia

Postby greeneyes » Sun Sep 23, 2012 1:02 am

I have a question I'm hoping someone can answer. I have had vaginal and peritoneal pain and numbness, and pelvic pain for the last six years. I switched from Blue Cross to Kaiser in March. Kaiser has a pelvic pain center, where I recently went for an evaluation. A physician there diagnosed me with vulvodynia and myofascial pain syndrome. I am seeing a pelvic floor physical therapist at Kaiser. One of my symptoms is a sensation of having to pee when my bladder is empty or only partially full. I don't have any other bladder symptoms. The doctor told me this is a symptom of Painful Bladder Syndrome (IC) and advised me to stop drinking coffee (which I love). I think the urinary problem could be a symptom of vulvodynia rather than PBS. As Violet noted in a posting on this forum, the pudental nerve innervates the bladder sphincter. Part of vulvodynia (as I understand it) is a heightened sensitivity of the nerves in the pelvis, including the pudental nerve. Couldn't an irritated pudental nerve create a sensation of having to pee? Thanks.

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Re: Vulvodynia

Postby helenlegs 11 » Sun Sep 23, 2012 8:53 am

Hi Greeneyes and welcome to the forum :)
Vulvodynia is more of an umbrella diagnosis for symptoms like yours so I suppose both are correct, it's just PN could be WHY you have painful bladder syndrome etc.
I am very glad you found us here, hopefully you will be able to get more targeted treatment if the pudendal nerve is the problem, and it does sound suspiciously likely. Not that any treatment would be so much different, as pelvic floor physiotherapy would always be a good place to start. I wonder if the do think the pudendal nerve could be involved but are just putting that vulvodynia diagnosis down in the first instance??
I have never had the urinary frequency symptom you describe, it must be so wearing! but I don't think it will matter too much what you drink, although others will chip in on that one.
As to your other symptoms I would say that numbness (perineum?) is almost always a nerve issue, is yours constant? (mine is) and is it more noticeable (and the pain) on one side or do both sides seem to be the same?
If you want to do a bit more reading, as you already must have been through quite a bit on the forum ;) the home pages will give you good info. Maybe if you print the symptoms page off and take it into the people at Kaiser to see what their reaction is. Otherwise just ask them if they think that your problem could be associated with the pudendal nerve, and take it from there.
How has the pelvic floor physio been working out for you, any good or any good feedback from the PT?
Do you have an idea how the problem started in the beginning? Some people have a defining moment for instance mine was a fall although for many it just seems to develop :roll:
It will be interesting to see if anyone else here has had treatment at kaiser and get some added info for you.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Vulvodynia

Postby Violet M » Mon Sep 24, 2012 3:35 am

greeneyes wrote: Couldn't an irritated pudental nerve create a sensation of having to pee? Thanks.


From my own experience, yes it did. Before PNE surgery I used to have to get up 6 times during the night.

Vulvodynia literally means vulvar pain. A diagnosis of vulvodynia doesn't tell you anything about what is causing the pain. One of the causes of vulvodynia can be pudendal nerve irritation or entrapment.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Vulvodynia

Postby greeneyes » Tue Sep 25, 2012 12:21 am

Thank-you Helen and Violet.

My pelvic pain came on gradually. It is mostly on the right side. I realize now that my pelvic pain problems have been going on for years. When I was in my 20s and 30s I had bouts of vaginal burning that no one could explain. (I am now 58.) I have had chronic low back pain for over 15 years. I also have irritable bowel syndrome. The pelvic pain doc at Kaiser said that IBS and back pain often accompany pelvic pain. Both she and the have PT told me that my "nerves" are overly sensitized. They haven't said which nerves are involved but it seem logical that the pudental nerve is irritated. I am currently using an ointment at bedtime that contains lidocaine and estrogen. This is supposed to calm the nerves. I have tried many of the meds used for nerve pain (Neurontin, Lyrica, tricyclic antidepressants etc.) and couldn't stand the side effects. This is my fourth round of PT. It has helped somewhat in the past but pelvic muscles have always gotten tight again. The doc said that she might try Botox if the PT doesn't do the trick this time.


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Re: Vulvodynia

Postby helenlegs 11 » Tue Sep 25, 2012 1:15 am

I had botox into my right (worst) side piriformis muscle and it did work a treat but mainly for the constantly tight, and sometimes tighter (evil thing!) p muscle.
I couldn't say that the nerve pain was massively much better, maybe a bit, but the muscle pain definitely was. The piriformis muscle is (almost definitely) where I am entrapped.
I possibly expected the huge chunks of numbness to be gone. Especially the bits that get more painfully numb ( I know! how can that happen??) with 'activity'
Have to laugh when 'activity' actually means sitting still too.
I would hope that because PT has given you some relief, the botox may well give good results. I have to say that for me physio (PT) didn't work. The only thing that gave any good pain relief was botox. The theory being that with me, scar tissue developed after a fall and subsequent haematoma which manifested itself as an egg sized lump ( more of a quail's than an hen's)in my p muscle. Didn't have a clue then that there was a piriformis back then of course.
Hopefully this will be the difference. It has been noted by a number of doctors who do know their stuff, that a 'traumatic' onset is more likely to be entrapment and PNE, while PN sufferers can find that conservative treatments work well.
I guess the other thing to try would be a pudendal nerve block, although if they already know that the tight pelvic floor muscles are the cause. . . . .??
Other things that might be worth a try,
cognitive behavioural therapies and mindfulness. . . . . really can help.
Hynotherapy http://www.pelvicpainrehab.com/blog/201 ... lvic-pain/
I really like the pelvicrehab site; even though I'm pretty sure my pelvic floor is not a problem. They just talk such sense.

I have heard people talk about muscle relaxant vaginal suppositories. I have probably put that all wrong as I have not used anything like this, but thought it may be worth mentioning. Hopefully someone else will tell it more correctly or you could research it if thought appropriate.
I did see this but you possibly have tried already;

Relaxing the muscles in the pelvic floor area overall is important, and warm baths or hot tubs twice a day can be helpful. In addition, low doses of muscle relaxants such as Valium (diazepam - 2 mg three times a day) may be helpful. from http://www.montereybayurology.com/uroco ... nction.htm
They also suggest yoga and a good posture, who knows?? standing up straight can't ever be a bad thing.
Just don't do kegals!
and take care, :)
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Vulvodynia

Postby janetm2 » Tue Sep 25, 2012 11:20 pm

I had botox for pelvic muscle spasms which helped but did not get rid of all the pain so it turned out I had PNE and had the nerve decompression surgery. Again helped but pain still lingering and spiking at times but I can sit again ( a 20 minute timeframe works best but I can sit up to an hour with some squirming around!). The longer meetiings do get interesting at work but I am sure no one wants to ask. Fortunately most people know I had surgery and I am mostly working with a smaller group.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: Vulvodynia

Postby greeneyes » Thu Sep 27, 2012 12:54 am

Thanks for the feedback on the Botox. I'll give it a try if the doctor offers it. I don't think I have an entrapment because I don't have increased pelvic pain with sitting. Sitting does bother my lower back but that's a separate problem. Mostly I have vaginal pain on the right side and pain in my clitoris, as well as hypersensitivity. I had a spinal cord stimulator implanted in 2010 but it doesn't do much for the pelvic pain. I'm on a low dose of methadone and use ice at night. The pelvic pain doc is optimistic that I can get rid of this problem but after 6 years of this I am skeptical. I will be happy if I get some improvement. I am grateful for this site and everyone that uses it. Thanks!
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Re: Vulvodynia

Postby Violet M » Thu Sep 27, 2012 5:19 am

greeneyes wrote: I have had chronic low back pain for over 15 years.


Have you been checked for sacro-iliac joint dysfunction? pelvic misalignment?


Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Vulvodynia

Postby greeneyes » Fri Sep 28, 2012 1:11 am

The first pain doc I saw back in 2000 told me I had SIJD. However, I did not have any of the usual symptoms and the PT's he sent me to thought my SI joint was fine. The primary painful spot on my lower back is at the SI joint but I also have bulging disks. The pain guy I saw at Kaiser thought the back problem was likely my SI joint. He didn't recommend any specific treatment. I declined PT as I have already had numerous courses of PT on my back and none of it had any effect. I'm not sure what constitutes pelvic misalignment. I have scoliosis in both my thoracic and lumbar spine but the curvature is mild. I've wondered if that could be part of my problem but nobody has suggested that.
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Re: Vulvodynia

Postby Violet M » Sun Sep 30, 2012 4:41 am

Did your pain doc try any SI joint blocks?

One of the symptoms I had with pelvic misalignment was one leg being shorter than the other and the PNE pain was much worse on one side than the other. I've also had mild scoliosis for years but I don't think it has anything to do with PNE because I haven't always had pain with it.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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