Health Organization for Pudendal Education

Just wanted to chime in and say that Dr. Harris is my doctor too and I go to 5 Point physical therapy. Small world, huh?

I'm glad you are seeing Dr. Harris, Shana, she is really expensive but provides amazing care and is genuinely interested in getting to the bottom of problems. (no pun intended) I had several PN nerve injections with her and she is the one who sent me for hip MRIs. She also sent me to pain management and got my central nervous system under control, God bless her.

I'm still doing hip PT and some pelvic floor PT, but I'm like 85% or so better than my worst point. Now I only have pain with sex, and even that is not bad enough to keep me from doing it! So, Shana and Griff, keep up the hope that you will find something (and someone) to help!

With hope,
Jackie

Griff, The only thing that I found to help my spasm was acupuncture. It took to the 5th session for relief but now the spasm is just about gone. Now that we figured out where to put the needles that it works its easy and actually very relaxing.

You should be able to find a hip PT anywhere in the country. I know Dr. Conway gives a very detailed protocol exactly what the pt needs to do and if its followed you should have a good recovery.

Jackie, I am very happy I saw Dr. Harris. I met my out of network deductible and maximum out of pocket so I'm covered 100% out of network which is a huge relief, especially with the cow se of all the providers I see. My PT has connections with Dr. Coady who pushed me into Dr. Harris so I didn't have to wait 3 months for an appointment and I'm happy about that. She's do understanding and really seems to care. She called me the next morning to tell me she slept on my case and she has some more ideas. She was very impressed with all my doctors I've seen. She said I saw all the right people so far so we know we don't have to go down that road again. We are waiting in the bloodwork she did and the results of my T3 MRI which I'm having done this Wed and then will figure out next step.

Shana

HI Jackie: great to hear you are doing so well. Can i call you -- i have a couple of questions and it takes so long to write them out. I sent you a PM but i dont know if i did it correctly. I left my telephone number. Thanks!!

This is my first time back on HOPE in months. I am 7 months post op FAI/labral repair and I am no better (pn wise) and still worse off from the hip scope. I'm also struggling with headaches (every day for the last almost 6 weeks) thought to be tension related due to postural compensation and poor alignment. The headaches are super frustrating because nothing helps much. As for my hip I have just really struggled to do hip rehab due to my PN. My quad and glute is extremely weak which is causing internal rotation of the femur and bad ITB tightness (which is causing greater trochanteric bursitis). I have super tight ITBs bilaterally interestingly. My right side also has a labral tear, but I don't think I will be fixing it any time soon as my left side is too week to bear the weight Postop. I still feel like SIJD/malalignment is a big problem for me and I do wonder about a possible connective tissue disorder like, ehlers Danlos syndrome. It's so frustrating because I just can't seem to get my pain under control for any length of time before something flares or a new symptom pops up. But I keep doing the best I can and use all the resources I have access to. Just wanted to update for those following this post. Griff, I hope this is the answer for you!

7 months post op myself and no real difference. Getting the other hip done in September. Seeing a PT I really like in MA. I've seen her 3 times and haven't had any great success yet but i've had this pain for 14 years so i know it will take time. She seems to know her stuff though so I have hope

HI Elmwood,
I'm sorry to hear things haven't improved much for you. Is your hip at least feeling a bit better?
Who are you seeing for PT?
Best wishes,
Karyn

I am posting an update. I have found the source of my PN flare, no surprise, but a very tight obturator. My PT worked rectally on it (which i hadnt really done before) and it is really painful so i am relieved to find the source of the pain. Both my physical therapists said that i shouldn't have doing the level of activity that i was doing so soon after my surgery and that they see my flare/relapse a lot in their hip patients -- they both commented that surgeons should be more conservative in what activity level they recommend after surgery . So, a word of warning to take it easy and don't listen to your surgeon if they say " you can do anything". My doctor thinks i may have injured my hip capsule and is recommending that i have an MRI - if it is injured i may have to have another surgery. Hopefully my hip is just inflamed. Anyway, i am relieved to find the source of my pain and be able to do something about it.

Oh no Beverley! I'm so sorry to hear that you may have hurt your hip. Hopefully it is just inflamed. May I ask what you were doing that may have caused the damage? Running? I want to be as careful as possible. I'm glad that you have figured out what may have been causing your pain. I also had some rectal adjustments about a year and a half ago and they did help me, even though they are awkward! Although it's not like vaginal PT isn't awkward to begin with... Whatever helps, right? Good luck and keep us posted!

Hi folks,

Finally, one year after my bilateral hip surgeries, I can report that my pelvic pain is 95% better. I apologize that I have been MIA for the last few months. Inexplicably after starting to physically improve I started to develop serious depression and anxiety symptoms which have put me out of action. My journey has been so long!! First I lost my ability to walk, to have sex, to sit, and then I lost my mind! But fortunately I feel I have now turned the corner and my head is finally clearing enough to post an update. But I don't think I'll be lingering on the board much, for self-preservation purposes.

For those who have had or are contemplating hip surgery, please keep in mind that it took me a year to feel the effects on my pelvic pain. But during the last two months I have made huge strides: I can now sit for as long as I like; I can go to restaurants; I can go to movies; I can have intercourse (for 10 - 15 minutes, but who's counting ), I can spread my legs during sex, I can sit cross-legged; I can swim in chlorinated pools and I can luxuriate in scorching hot chlorinated hot tubs. Most importantly, I CAN WALK!!!! I can hike! I can lift light weights! I am back in the gym!!! I no longer have any dreaded OI pain. But I don't think I will risk trying to run again. After a lifetime of running I stopped at age 43 when my pelvic pain/hip pain started.

If I am stressed, I can feel my pelvic floor tightening, my buttocks too, and my vulvodynia will flare. So I have to be mindful about relaxing the pelvic floor (with deep breathing and meditation) and removing any stress factors from my life. Also sometimes my hip joints feel "creaky", but maybe that's normal at my age (54)? But the dreaded PN pain is completely gone.

For my recovery, I credit: Dr. Kirk Andrews, chiropractor in Cornwall, Ontario who did shockwave therapy over several sessions to loosen my seriously tight pelvic muscles; Dr. Alan Gordon, my pain doctor at Mount Sinai hospital in Toronto; Dr. Ivan Wong, arthroscopic hip surgeon in Halifax, Nova Scotia who performed bilateral hip scopes to repair labral hip tears and to remove pieces of eroded cartilage from my hip joints; Nelly Faghani, my pelvic physiotherapist in Richmond Hill, Ontario; and Lorraine Faehndrich, a "women’s health coach and mentor specializing in the relief of female pelvic and sexual pain", based in Ithaca, N.Y. In a six-week program conducted via teleconferencing, entitled "Healing Pelvic Pain," Lorraine helped me recognize the mind-body connection to my pelvic pain post-surgery and suggested ways of overcoming it.

I also tried all the medications mentioned in this forum at various times during my journey (neurontin; amitriptyline; Cymbalta; oxycodone), which were of no benefit until I got my hips fixed. Then while I was being treated for depression/anxiety I was prescribed an antidepressant, mirtazapine, and my remaining pelvic pain symptoms gradually disappeared while on this drug. Honestly I can say that this was the most helpful of all the medications that I took for my pelvic pain.

Friends, please be patient. You will find a cure. Linda, I hope your hip surgery went well and that it will be the answer to your pain journey.

Love to all of you.

I am so happy to read your post Lernica. I have been concerned about you and I am so relieved to hear this wonderful news. My surgery went well and I got to see pictures of the damage done from the impingement. It tore the labrum and partially tore my psoas. Dr Coleman repaired the labrum, released the psoas, and shaved down the bone. He said everything else about my hip looked great (no sign of arthritis).
So I guess my year of rehab has just begun!