Health Organization for Pudendal Education

Hi Lily.

I just thought I'd add my two cents worth here. I have vulvadynia that causes right-side vaginal burning. I've had two guided nerve blocks and a ganglion impar block. None of the blocks had any effect. None of them triggered a flare. I was neither better nor worse after any of the blocks. Maybe this will calm some of your fears.

Hi GreenEyes

Thanks. That does calm my fears but also brings up more fears in that, how will we ever get better. So far the coccyx block (not sure he called it ganglion impar and they won't send me a report for some reason) is only causing bad pain in my lower left leg on the inside side. PT said that was normal and it should go away.

Do you have any ideas about what causes your one-sided burning?? It's driving me insane. I did some piriformis stretches over the past few days and now the burning has kicked up. Why? And why can't anyone figure it out?

Hi Janet

Potter's office was a bust - they basically said labral tear pics might be on the scans they took but they don't know and I'd have to take it to someone who can read it and let them look. No offer of looking it over again themselves with an eye toward labrel (can't spell it) Seems like craziness to go to a doc and say 'oh here, look at what is probably 100's of pics' but I guess I'll have to get around to it if I'm going to see this thing through. Thinking it may be easier to just get a left hip MRI.

Good thing you got in right away with your PT. Better not to wait on it. How about ice or heat? I find ice is very helpful to me when I feel in the mood to be bothered with it. Pain pills are good too (though they bother my heart so I can't do much with them) I often wonder how much our walking and standing is affected. I know I have a lazy left leg (surprise) and often semi-trip. I'm in my 40's so I wonder when I'm a bit older how that will play out (if I'll have spills and falls). Fell better darling! Let us know how you're doing.

Lily

Oh my Lily,
100 pictures and they won't look. If you go with a new MRI make sure you get the right thing - I cannot remember if you need it with contrast - probably written in the labral tear thread somewhere. I thought I had hip pains but turns out it was the top of the pelvic rim,LOL, obviously I have no idea about anatomy. Thanks for the ice and heat reminder. I used ice on the nerve but should heat my SI joint low back pain and see if that helps. Got all my chores done so I can relax until work on Monday. Fortunately laundry (just my two medium loads as hubby does his own) was the only physical chore.
Janet

How are you feeling Janet?

Hi Lily,
Thanks for asking. It was a long week and can now try to relax. I am a bit flared around the core with the misalignment and extra stress. I was helping others with writing their yearly accomplishments at work to add the positive impact of their work and then I was going to leave and the new timesheet would not work. I had to stay an extra 1/2 hour to redo it from scratch. Small issues in comparison the pain we all have with this condition but it wore me out, also didn't sleep well last night and broke atooth the other day(that was patched yesterday). So looking forward to having tomorrow off and PT. Maybe I will feel better by Saturday. How are you doing with your struggles and pain? We also should be turning away from the humidity for the weekend.
Janet
p.s saw you left leg scar mosquito bite issue and that it odd. Of course I could scar due to scratching bites til they bleed but trying to avoid it. I got two bites on Sunday indoors on my left hand and arm and still trying to get them to heal up.

It's so funny talking to the people on here. It's like hearing myself. Things wearing me out, teeth breaking off... It's a bit bizarre how much we have in common in strange ways.

Hope you're feeling better today. I'm in wicked pain tonight. Did some exercises that flared things. It's insane. One tiny movement of my stomach muscles and lightening bolt. I'm despairing tonight because I let myself do the exercises knowing they would make me worse which I rarely do. I know what to avoid but the PT figured I need core strength and I definitely do so I tried to do a few gentle movements and BAM!! Why can't anyone figure this out??

I really don't know why the left leg scars. I make sure not to even touch scratches and they still scar now. It's disturbing. I mean they don't scar up on the skin, the skin turns purple. So you can't feel it, only see it. I'm fair-skinned but this is crazy LOL but isn't all of this?

Ah well...

Lilky,
So sorry to hear the core exrcises are giving you extreme pain! This condition certainly is the most frustrating, never know what will help or hurt. I was doing some stretches that sometimes helped but seemed to hurt and PT just said to stop them. Of course for me I need to up the core exercises to fix the alignment. So far they are okay. Today I start cooking again and catch up. I did get another PT appointment next week with my original therapist -looking forward to that. I hope your pain is subsiding and they can find something to help not hurt.
Janet

Hi Janet

Realized I just dropped off the face of the earth there for a while so wanted to pop in and say hi and see how you and everyone is doing. I'm the same. No major changes. Contemplating my next step.

Lily

Hi Lily,
Nice to hear from you. I am doing ok and PT is helping me and I have appointments for the full 8 weeks I needed. They get filled up quickly. Not looking forward to my long day tomorrow at work and then 2 hour dental crown preparation. I have some fun coming up for the weekend, boat ride & lunch with co-workers Friday (as long as not windy or rainy) and lunch with a good friend on Saturday celebrating her recent birthday. I am hoping the boat ride will be not more rocky than riding in the car.
Janet