Health Organization for Pudendal Education

Hi,

I just wanted to introduce myself. I am a 43yr old female with pelvic pain lasting twenty-some years. It started as vulvodynia which then progressed soon to dx of endometriosis and IC via cystoscopy and then oh som many laparascopies. Funny thing is the pain kept getting gradually worse trying to treat IC with everything known {elavil to self-administering DMSO at home} to the eventually full hysterectomy at age of 34. In the meantime, I had 2 kids, demanding jobs, and finally went on and off pain meds numerous times of numerous types.

I've been through the gamut. Still no relief.

I'm not sure how long this site has been around but I sure recall seeing TIPNA, etc long long ago and thinking "yeah this sounds like me", but yet I couldn't find any doctor that would either not laugh, roll eyes at, or otherwise label me as an internet-doctor-wanna-be.

Recently I've moved to the Baltimore area and am lucky to be going to Hopkins Pelvic Pain Clinic. I just had my first appointment and I nearly fell off the stirrups when the doctor brought up my pudendal nerve and how she wanted me on a trial lidocaine injection. Next month I'm due to have this done in the OR under anesthesia because of my level of pain I guess? is this normal? as well as take a peek at that IC. She also prescribed Vaginal Valium.

I am at the end of my rope. On top of the pelvic pain I just started have SEVERE pain across my sacrum and running up my spine to the lumbar region. This is totally new. I can't walk more than 5 min without this happening or stand sort of bent over. Sitting on a hard surface - well I just don't do it anymore - I lean against everything or maybe sit on a soft surface for 5 min. I can't work. I can't go anywhere. I need help.

So... any words of encouragement or thoughts would be helpful... and was their some point all the genital, anal, pelvic pain truly went up into the sacral and then lumbar areas of the back. Can people also not walk or if they do walk hunched over?

I'm getting MRIs done of my spine and hips tomorrow. Initially X-rays of my hips showed bone spurs at the age of 43. Sigh.

Thanks for reading and I look forward to getting to know this forum!!

P.S. I've had the opportunity to do a bit of Pelvic Floor Physical Therapy and found it to be one of the most helpful things so far. I hope to go see the PT over at the same Hopkins Pelvic Pain Clinic if I can get in soon.

Hi Waterfall,

I'm sorry you have been on this journey for so long without much relief. It sounds like maybe you are on the right path having the MRI to check what might be causing the back issues. Hopefully your PT is trained in treating lower back pain as well as pelvic pain. You might want to research sacro-iliac joint dysfunction to see if that might be something to have ruled out. It sounds like you have a lot going on but hopefully this doctor you are with as well as your physical therapist will be able to help you sort this out. You could also try a manual therapist who uses the Hesch method http://www.heschinstitute.com/ or someone who does the Barnes method. https://www.myofascialrelease.com/

My nerve blocks were done without anesthesia but I think some of the docs prefer to do it with. I've battled SI joint dysfunction/pain in the past as well as pelvic pain. I had several prolotherapy injections to strengthen the SI ligaments and I am better now. I also had PNE surgery to release the pudendal nerve which was the right thing in my case but definitely a last resort.

What are they recommending for the bone spurs?

Violet

Violet:

Thanks you very much for your reply and links.I think I am going to hold off on the PT until after this first block. Even walking now is just too much - burning pain across the small of my back.. and I definitely have SI Joint dysfunction on my list of things to check off.

I'm waiting for my first appointment with the team that would handle more spinal than pelvic pain (although doesn't that seem ridiculous considering all the nerves}. I'll be wanting to hear about a plan for bone spurs. I did get a MRI done of the pelvic area which showed some strange bright spots on my left inguinal node - incidentally where I also experience pain.

I'm hoping that my combined team can sort this out. I think my dr is doing the block in the OR because of the level of pain I'm in currently and also she is doing a bladder cystoscopy for my IC. Two for one.

Two days ago I wound up in the ED because I simply couldn't tolerate the pain on the meds I have at home. Ugh. Sometimes I guess you do what you have to.

Still 1 month to the operation. I wish it were tomorrow.

You sound pretty miserable. I'm sorry you have to wait so long. I don't blame you for holding off on PT. I couldn't tolerate it until almost a year after surgery.

Take care,

Violet