Vulva pain

[lindao76021]

I'm new to the IC world. Although I knew I had it for years, I've just been diagnosed. I'm on elmiron with a lot of days that I have nausea.
My pain is not in the bladder but in the vulva area. Some days it hurts to move, to sit, to stand, to walk, etc. It feels swollen and bruised. I take a half of a hydrocodone to get me through the day. I do all the patient care in a busy chiro office and need to be moving and HAPPY all day. I get home and I'm exhausted and crabby to my family. I can deal with the urgency and frequency, but not this pain. Some days I sail through - no pain, some days I just want to scream. Not to mention the thought of sex with my husband sends me through the roof! Has anyone had any luck with natural remedies? I can't take Ditropan/Detrol or any of those. After a week on them, my vision blurs and I can't see real well. I'm also worried about weight gain. I recently lost 40 pounds through diet and exercise. When I work out now, the pain is worse later that day and the next. Please tell me there is hope!

[jen74]

Hi there,
It sounds like you may have vulva vestibulitis/ or another name for it coule be vulvodynia. I also get the vulva pain at times and it is painful. Sitting usually makes the pain worse. Has your doctor offered you anything to put on the vulva such as a lidocaine cream or gel? My dermatologist gave me this stuff with lidocaine HCI 3% with hydrocortisone acetate 0.5% cream. It is used for severe pain with hemmroids, but can be used on the vulva area also. She said it would help with the pain. Right now I am not having to much pain there, I am having more pain with the bladder. But if I get the vulva burning and pain back, I will try this stuff. Your doctor should be able to give you something to help with that pain. I hope you get some relief soon.
Jen

[Berkshire Road]

It really does sound like vulvodynia, but I have plain old IC and sometimes the pain refers into the vulva also. It really sounds like you could use stronger painkillers. But there is a forum just for vulvodynia patients on this site, and maybe you should check it out for tips.

[lindao76021]

vulva pain

Where is the thread on vulvodynia? I can't seem to find it!

[navemj]

vulvo

Hello,
First I would like to say that I am so sorry you are in so much pain. The vulva pain is MUCH worse than the IC pain could ever be. I had laparoscopy two years ago and developed vulvodynia. God has healed me of the worst pain. I do have flare ups from time to time. It was a long journey, but I will tell you what helped me. Everyone is different, but this is what helped me. First I figured out that alot of medications bother my vulvodynia. Some pain meds bothered me, soaps, detergents, and being constipated. I started on bladder installations, zelnorm, and applied olive oil around the labia and urethra after urnination. This was very soothing. I was diagnosed with pelvic floor dysfunction and started seeing a physcial therapist for this. This helped. I use Tide free detergent and never dry my underwear. I hang them up. Sounds crazy I know, but it helped me. But the best thing I ever did was go on Yasmin Birth Control continous. I have endometriosis. Not having a period helped. As soon as I have a period all my pain seems to come back. I think my vulvodynia was due to hormones. Don't give up. Just keep looking for a doctor who is knowledgeable of vulvodynia so he can tell you if this is what you have. I hope you get to feeling better soon.

[Lucy B]

re comfort for the pain

I've found that genestra isogen forte cream has been very soothing...basically its a bioidentical estriol...I also aply tea tree oil undiluted meaning pure directly on the labia and urethra area...I also soak in hot water in a dish size tub so with several drops of 35% food grade hydogen peroxide which is known to kill several pathogens. During the day I'm taking sublingually 5 drops of colloidial silver every hour or two and it is helping significantly...
hope this helps...l'll be curious to know
Lucy B

[riag]

It sounds like vulvodynia. I would see a dr to make sure. My doctor told me I had the worst case of vulvodynia he had ever seen. my pelvic spasms were so bad , i couldnt stand up straight. I couldnt wear pants, or underwear. I was incredibly red and swollen. I was in this pain for almost 8 weeks until i was misdiagnosed with ic. I went to see dr. moldwin, because i heard he was the best in ic and he told me i did not have ic, but i had pfd and vulvodynia. he instructed me to take 2 oatmeal baths a day for 15-20 minutes (this helped a lot). Use only dye free/fragrance free soap on my clothes. I was given valium 2mg 3x day for the pelvic spasms. He then sent me to see a gyn spec. (Dr Baker) who gave me 10mg nortriptyline a day for the vulvodynia, as well as, lidocaine ointment 3x day and clodesate prop. (ihope i spelled this right) ointment 2x a week.

I am feeling great!! As per Dr. moldwins advice I started physical therapy 3 weeks ago for the pfd. I'm feeling a little achy in the pelvis, but was told that was normal in the beginning. AFter i'm in physical therapy for a while, im going to be weaned off the valium.

Good luck to you. hope this info helps, but definitely go see a doctor for an accurate diagnosis.

[sami4]

Great advice

You got some really great advice from these ladies. I would add that I also have a tendency to severe vulvar flares, and what the vulvar specialist I see gave me that helped the most was Elavil. Elavil seems to stop nerve pain and it really helped. The other thing was have your Gyno check you for yeast (that can really cause a terrible VV flare), and see if your vaginal estrogen levels are OK? My VV specialist also told me to apply estrogen cream around the vulva daily.
Best wishes, hope you get well soon.
Sammi

[Lucy B]

plugging away

Hi Riag
I just wondering what pfd is? I'll give the oatmeal baths a try...how many spoonfuls or cups do you put in? are the ointments over the counter?
thanks
Lucy B

[riag]

to lucy

pfd stands for pelvic floor dysfunction. Dr. Moldwin feels the spasms from the pfd caused my vulvodynia.

The oatmeal baths are sold as packets. The dr recommended Aveeno colloidal natural oatmeal bath treatments. I thinkthere are 8 packets in a box. EAch box is about $7. You add one packet to each warm bath. It really helped with the pain, burning and swelling until the meds and ointments kicked in. YOu can buy it at any drugstore or supermarket.

The ointments are both by prescription only.

I hope this helps you out.

[riag]

HI riag here again,
to sami4

Just a quick note, my gyn/vv spec. gave me nortiptyline because he said it works just as well as elavil, only it has a lot less side effects.

Just thought I'd let you know.