Vulvodynia help??

I have recently been diagnosed with vulvodynia and wondering if anyone can give me some advice about the condition and there experience with it?

10 Replies

  • Hi chloe. What have they said to you or offered for treatment.

    You definitely should be given physio with the women's health physio team.

    There's different medication.

    I use gel cushions for sitting, a standing desk for working, cold compresses, bamboo and cotton knickers and leggings as I can't wear anything heavy or lacy there without pain. Haven't worn jeans in years.

    I use various tens machine for pain relief.

    I get a lot of pain down my legs, Lower back and glutes so have various stretches to do to help. And I've looked at podiatry with how I walk.

    Where abouts do you live and who diagnosed you?

  • Hello I got a tens machine for my daughter do you have any tips, she says it helps and we have only had it a few days so are only on level 2 it's also a toning machine.

  • I have two on the go (I have worn out one already). I have the bigger one that I got through the hospital physio department which allows you to put on four patches and I have a more discreet one that you stick straight on to you which is perfect when out and about. Search on amazon for Healthcare World Mini Tens Machine Wireless & 2 Extra Pads or Wireless Mini TENS Machine by Natures Gate - Completely Wire-Free and Portable TENS Pain Relief

    Your daughter just needs to play around with the settings and find what feels right/works. It does change depending on your pain so I don't always look at the level but rather feel the pulses and decide if I want more or less depending on pain. Does that make sense? I tend to go for higher settings but that's just me. And in my wireless one I notice more the pulses changing depending on which level I am on.

  • thanks so much 😁

  • Hi Chloe2602 :)) when you were diagnosed with this, did the physician offer any kind of help with medication? I was also diagnosed with vulvodynia and Pelvic Floor Dysfunction... which was misdiagnosed for 2-1/2years! I've had the burning for about 6 months and couldn't take it anymore. I found my new doctor on the Interstitial Cystitis Website (after seeing 3 urologists) and 5 visits to the emergency room. The doctor gave me medicine for both and I am feeling so much better with no more burning or pain. I was also told to go for physical therapy for the pelvic floor. I don't know if I can mention here the medicine I am taking but for the pelvic floor but it's a low dose antihistamine and the pelvic floor is a antidepressant. I can't tell you how it has changed my life all in one day with the medicine!

  • Think ok to mention meds but not names of Doctors etc

  • I added a response below. Maybe this will help you too. Xo

  • Thanx, I've tried Amytriptiline in the past but it knocks me out too much the next day. I don't have burning in that area but could be a very useful tip for the future for the other drug you mention

  • Would you mind sharing the names of the meds that helped you?

  • I'm sorry for not seeing your post. The medicine he put me on was: Amitriptyline 10mg tab 1 at bedtime (this was prescribed for depression in the last) & Hydroxyzine HCL 10 mg tab 1 at bedtime (this is a low dose antihistamine for the burning) These 2 combined have really helped me tremendously. Although this is a very low dose I may have to eventually graduate to a higher dose, I don't do well with medicine that makes me tired so he started me out slowly. I am able to go to work without heavy pressure or burning through the day. I'm so glad to have found him, the other doctors were diagnosing me with interstitial cystitis and that's not what it was. I have yet to go to physical therapy which he strongly recommends at least for a few visits. He gave me a therapist that takes my insurance for pelvic floor dysfunction. I hope this helps you. My heart goes out to anyone who has to go through this... it took over my life and now I have some freedom from constant pain. I would also like to mention, he did an internal exam (the urologist) and told me it was NOT my bladder.

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