Health Organization for Pudendal Education

Once again, facing another surgery and terrified.....I have PNE surgery with Dr. Hibner in August 2011, slipped and fell on right hip Jan 2012, got confirmation of bilateral labral tears and FAI June 2012, and finally had right hip surgery with Dr. Shane Nho in May 2013. 2 years of PT -- not even pelvic PT, just rehab from surgery -- and I felt much better. I still needed to take narcotic pain medication and muscle relaxers but I considered it a success after the amount of pain I was in -- although I was nowhere near the person I used to be. I had no PNE flare from hip surgery and did feel a bit better in that area though most of my symptoms remained. Hip surgery was more about my muscular pain anyway as everything between my mid back and knees hurt. A few years go by and I fall several times (thanks winters in Minnesota)....

The past year I've had increasing symptoms to the point that I'm going down to Mayo in 2 weeks for more MRIs and hip injections. I'm terrified that I may have retorn my right hip but mostly that it's time to do my left. I was originally scheduled twice for left hip surgery, but I canceled b/c I was feeling so much better. I just don't know how to make this decision -- continue to live like I am not being able to sit, stand, walk, etc for more than a few minutes at a time OR have surgery and possibly make my PN worse. Cognitively I know that damage to the PN is a very rare side effect of labral tear repair surgery, but I'm so scared of making it worse. I think I could handle the sitting pain getting worse, but I know that I cannot handle the PGAD returning to the way it was before PNE surgery. I'm particularly scared about the PGAD because I've had injections into my left hip in the past that tremendously flared up the PGAD. No one could tell me why -- it makes no sense to me since the needle or fluid doesn't get anywhere near the nerve.

It just feels like an impossible decision. Found out years after PNE surgery that I'm extremely hypermobile in all my joints. PT said PNE surgery was not a surgery she would've recommended for someone like me. The combo of the surgery and falling made my pelvis so unstable that I literally walk like a drunk person. I cannot walk in a straight or near-straight line b/c I'm so unstable. It causes such horrible back, hip and knee pain. I got back some stability after hip surgery so I would hope left hip surgery would improve things further. But the risks....I don't know how I'm going to make this decision.

Has anyone's PNE or PGAD gotten worse from hip surgery?

I understand your fear about PGAD returning. I had to decide whether to get some pelvic floor repairs and I decided to just live with it the way it is because I did not want to risk PGAD returning. To me, it was the worst symptom I had. I guess one question you could ask yourself is whether there are any positions that are comfortable right now. When you had PGAD were there any positions that were comfortable or was it something you had 24/7? Are there other treatment options you could pursue besides hip surgery? -- like PT or prolotherapy for the hypermobility. I found prolotherapy to be helpful.

Violet

Thanks for your reply, Violet. Only someone who's had PGAD understands how difficult this is and how big a risk surgery is. I called and got an appt for a prolotherapy consult. Maybe I can get the ortho pain to settle. I'm actually hoping that my right hip has retorn. At least that way I know I can safely have surgery on the right without making the PNE worse.

My clitoral symptoms were 24/7 and really made me suicidal. I'm still hyper sensitive but can tolerate most activity without having those sensations. I avoid undies and tight clothing but can have sex, etc without flares. Constipation and PMS can flare it but it goes away eventually. The back pain is so bad though that I have substantial trouble being on my feet for any time at all. Most of the suffering from PGAD was emotional if that makes sense while the ortho pain is very functionally limiting. A very hard decision.

Yes, it is a hard decision and I hope what you decide will work out well for you.

I'm not sure if your insurance will cover prolotherapy. My physiatrist used a tiny bit of steroid in the SI joint prolotherapy injections so that it would be covered by insurance. Ligaments generally do not heal easily so the theory behind prolotherapy is that it sets up an inflammation in the ligament and stimulates it to heal. So you really don't want a steroid along with it because the steroid reduces inflammation. But if using a small amount of steroid helps you get insurance to pay for it, there can still be some benefit. Because of the increased inflammation you may have a flare up in pain near the site of injection for a few days afterward. Also, I would not get a large number of prolotherapy injections because I have heard that too many can cause scar tissue to form. The SI joint is an easy target if the physician uses fluoroscopy guidance, so there isn't much risk that I am aware of. I think I had a total of about 4 injections and I felt like they helped stabilize the pelvis.

I have had severe thoracic spine pain but I started wearing a weight vest (from a sporting goods store) and slowly worked up to wearing it 2 hours a day starting with hardly any weight and working up to where now I use 8 pounds. It has significantly improved my core strength so that now I have much less back pain. I don't like wearing it because it can be uncomfortable during those 2 hours but the benefit has been substantial. I used to not be able to stand for more than about 5 minutes without back pain but now I often don't even think about back pain most of the day. I usually wear the vest when I am working in the kitchen in the evening. Maybe it's something you could ask your ortho doc about, and whether it would be safe for you to use it to try to improve your low back pain.

Yes there is a huge emotional component to PGAD -- like being tortured 24/7. It helps to know it is not all in your head though, and that there is a physical or musculoskeletal cause.

Violet

Violet

Hi shljk,

Did you find out more information about your hips? Are you going to get surgery?

I'm still weighing the FAI surgical option myself.

Thanks,

Buttercup

I've made the decision to go forward with left hip surgery. I hope it goes as smoothly as the right. I wasn't able to get the pain to decrease until I had a cortisone shot into the left hip. Because I had a positive reaction, I decided to try surgery. To be clear, I'm having surgery because of my orthopedic pain not my pelvic pain. I just hope the PNE pain doesn't get worse.