To Help Others...

I haven't been to these forums for awhile and wanted to help other women out there. So often you see all the desperate and sad messages on forums but not the ones involving successes! I used to suffer from debilitating vulvodynia pain. This has been much reduced in the past few years. Here is what I did to help myself.

1) Create your own seat cushion! Make sure to 'cut out' the middle. This will help since no longer have to sit in a chair and irritate your vagina/rectum.

2) Mentally learn to stop fighting the pain and let it go. I know it sounds ridiculous but the power of the mind is amazing! Try to meditate and tell yourself that this pain does you no good. I sat down and told myself, "You do not need this pain. It's time to let it go." I had a lot of 'talks' with myself.. I realized when I met my husband I no longer needed it. Throughout the course of our relationship, I slowly got better. Sex went from being something that caused pain to something that EASED pain. I needed to 'exercise' those muscles and get them in shape. Having a very gentle and understanding partner is important. If you are not with someone you feel comfortable with, this will not work. My hubby assured me that even if we never had sex - he'd love me all the same.

3) Make SURE to check if you have pudendal nerve irritation or pudendal entrapment. I believe nerve pain is where most vulvodynia comes from. What helped me is getting injections done with Dr. Antolak at Mayo Clinic. He is still in Edina, MN. I don't recommend jumping into these right away because I did suffer a loss of 'feeling' in my vagina overall from four different shots. I am sure it can cause other issues - this needs to be heavily researched before making a decision.

4) Make sure you do not have pelvic floor dysfunction. If you have bladder and bowel problems - look into this!! You could be straining too hard on the toilet (in the wrong way) and causing further damage.

5) Biofeedback did not work for me but I was given the wrong kind. They gave me the kind that 'strengthens' versus the kind that 'relaxes.' It's very important that you get a physical therapist that specializes in pelvic floor dysfunction and will tailor the treatments to your individual needs.

6) Tried lidocaine and it sure does help here and there. You can also make your own 'suppositories' with coconut oil and lidocaine and pop those suckers into the freezer. Personally I did not like not being able to 'feel' my vagina at all.

7) Look into Endometriosis for your issue. It could be that it is causing spasm in your pelvic floor or is 'on top' of a nerve.

Let me know if anyone has questions! good luck to everyone! You'll find your own way and be pain free soon.

I have endo but my v has been cured completely and it was way different.pain blah

Alana3 wrote:I have endo but my v has been cured completely and it was way different.pain blah

Yeah, it's kinda far reaching to suspect it might be endo but that can also send the pelvic floor into spasm, I think. Glad your v is cured!

Yeah it can but typically completely unrelated and the pain with endo is horrendous. My v was all nerves so once I had the surgery it felt a lot better let's hope my lap makes the endo feel better too :/

thank you so much for your post, I have pure nerve pain as well and suspect a whole bunch of them involved. my pain started in the ilioinguinal in the mons pubis and just spread everywhereeeee I know other girls who were helped, one even cured from the pudendal nerve blocks....
all the best !

Alana3 wrote:Yeah it can but typically completely unrelated and the pain with endo is horrendous. My v was all nerves so once I had the surgery it felt a lot better let's hope my lap makes the endo feel better too :/

What kind of surgery did you have? I am glad it helped you! The endo doesn't really give me any pain, which is weird. The lap should make you feel better BUT you have to be sure you do it with an endometriosis specialist to ensure they'll remove 'all' of the disease. They 'excise' the disease out which ensures it will not come back. Most OB/GYN's just laser it out (and usually don't catch most of it) so it can typically make it worse.

You might have known that - just thought I'd throw in my two cents!

mary jane wrote:thank you so much for your post, I have pure nerve pain as well and suspect a whole bunch of them involved. my pain started in the ilioinguinal in the mons pubis and just spread everywhereeeee :)I know other girls who were helped, one even cured from the pudendal nerve blocks....
all the best !

Yeah it sounds like yours might well be helped by a pudendal nerve block! It sadly didn't 'cure' me, getting over the rest of it just took a lot of thought and self-reflection. I think more than anything, just had to learn to let it go... (that's not easy for me, I'm a control freak!)

@ johnson whatever you do, DO NOT HAVE THE PN SURGERY !
you could try pulsed radio frequence ablation...not the RFA one, the pulsed is less invasive and harsh

PN surgery is way too experimental and it can make you worse! I personally do not believe in PN entrapment unless you get born with it or get it from a bad surgery however pudendal neuralgia can happen a lot!