Health Organization for Pudendal Education

Jax87 wrote:
Shana, I'm sorry to hear about the continuing trouble with your hip and pelvic pain. I also have seen Dr. Goldstein and Dr. Chapman. I didn't find either to be particularly helpful, so I moved on. It sounds like they didn't help you too much either. I didn't have the vestibulectomy though, and sometimes I wonder if I will need it in the future. Did Dr. Coleman find any impingement or dysplasia with your hip? I ask because it sounds like you re-tore your labrum, so maybe the original cause of your tear wasn't fixed. I'm not an expert, but I have heard of other people having that problem. I have faith that Dr. Coleman will at least get your hip problems figured out eventually, HSS seems to have so many experts and resources that you should get some answers. I wish there was a place like that that just specialized in just pelvic pain! Good luck and keep us posted.

Gentle hugs to you all,
Jackie

Jackie,
I blame all my pain on Dr. Goldstein if I could take it back I don't know that I would have undergone the surgery knowing that I would end up in all the pain I'm in today. My life has turned into a living nightamre!
Honestly I'm not sure exactly what Dr. Coleman found, it's been 2 1/2 years since my surgery and so much has happened since I don't remember. I had a CT Scan last Fri and it came out looking excellent, so Dr. Coleman said that what appeared to be a tear in the right hip is not, sometimes a repair can look like a tear when it's really not. The left hip though is torn, just not sure yet what I'm doing about it. So I'm back to Dr. Coleman on Mon, he said he's now going to look for other causes of my pain, he's not really sure what's causing it (Which is why I like him, he's not promising me anything, he's not saying he knows the problem and can fix it. Dr. Goldstein on the hand swore to me the vestibulectomy was the answer to all my problems, he swore up and down I'd be all better and now look at me) Anyways, Dr. Coleman wants to do other testing and look for other causes of my pain and see what he can do to fix it.
What's a bit strange is day to day my right hip causes me much more pain than my left hip. On examination my left hip hurts more than the right, don't know why that is and neither does Dr. Coleman

All the best,
Shana

As a followup to my last post. I saw Dr. Coleman today. Based on the diagnostic testing me had done over the past couple months and based on the location o my pain he thinks I'm having pain from scar tissue build-up and bone on bone hitting in the joint. He wants to go back in and check and fix it, he also wants to repair the other hip as well. Before he does surgery though he wants me to get a second opinion from his colleague Dr. Kelly to see if maybe he missed something.

Meanwhile I spoke to Dr. Conway who said that I may or may not have relief from my PN pain if I have hip surgery. So the question is do I take care of my hip pain first or my PN pain first? Should I travel out to NH, a 5 hr drive, before I have hip surgery or wait until I'm all healed from hip surgery and then move on to the next thing.

I'm so confused and stressed out!

Thanks,
Shana

Shana,
Thanks for your reply to my questions, it helps to hear about other people's experiences even if they unfortunately don't work out well. I have been replaying Dr. Goldstein's statement that I am a candidate for a vestibulectomy in my head, and while I know they help some people, it makes me feel less anxious/eager to proceed with that as an option in the future based on your outcome. I'm so sorry it caused you so many problems. For what it's worth, I left him when he told me the only meds for nerve pain were Neurontin and the tricyclic antidepressants....I'm now on Lyrica and Cymbalta and happier!

About your hip, the scar tissue diagnosis makes sense and is something that have also been worried about. My PT says I have some scar tissue but I guess it's still early enough in my recovery that he thinks ART will get rid of it. I will be anxious to see what Dr. Kelly tells you. I am seeing Dr. Kelly for my six week follow-up on Friday. Maybe I'm biased, but if I were you I would finish up the hip journey before you have PN surgery. It sounds like you may need hip surgery anyway, and it might be the solution to your PN problem. Whereas if you have PN surgery first, it may not be successful and you will be unable to do any hip PT or exercises while you are recovering which could further harm your hip. If you want to drive to NH to visit Dr. Conway for a consultation that might be helpful though to give you some idea of your options.

I totally understand your confusion, I am confused about my PN a lot too. I am starting pelvic floor PT again this week in addition to my ortho PT to work on my recovery. Part of me is skeptical because I've had mixed results with pelvic PT in the past, but I think I need to do it now that I've had surgery. Another part of me, the part that has PTSD from my worst PN days, doesn't want to go to pelvic floor PT because it reminds me of the bad times and the frustration. But, I'm going to give it my all because this route has been successful for some women and everything has indicated that I'm a good candidate for it. I'm able to sit now without ischial tuberosity pain, and there isn't any impingement pain with sitting since the surgery, but I don't have a full range of motion yet. Sex is still somewhat painful, but it used to literally be impossible, so I'm making progress. Very very slow progress.

Sorry to go off on a tangent, you ladies (and gentlemen) are the only ones who really understand. I believe we will get better.

Hugs to you all,
Jackie

For what it's worth Shana, I agree with Jackie when she says hip first, then PN.
You never know a hip fix may do both jobs, although don't set all of your hopes on that of course but it is possible as a few people here have found with labral hip tear fixes.

Glad you are making progress Jackie, albeit slow progress. Hope it continues. . . and speeds up

Take care all,


Helen

HI Faith: I am sorry your recovery has been rough. I also had FAI/labral repair surgery with Dr. Coleman and am 99% better (9 months post op). I remember the first few months were hard so hang in there. I spoke to two women who i connected to through a support group that had the same surgery and really didnt feel any improvement for 6-9 mmonths. So, hang in there!

I am having a bit of a flare from too much yoga, biking and sitting -- you would think i would know better. I have been doing internal PT, Vaginal Valium -- which really didnt help this time around but has helped in the past, and recently i did ART (with a chiropractor to the stars and professional atheletes in NYC) that my hip surgeon recommended and it helped alot. He worked on a bunch of external trigger points.

I also am using topical Elavil and it is really helping with fewer side effects than Elavil -- which i was really not liking. My Psoas is really tight and contracted -- i definately can feel the connection between an uphappy psoas and PN.

Frustrating to have the flare -- but lesson learned about what i can't do.

Hi Beverley,
I'm glad you are not in pain, I'm replying to your post on the Success stories board and here. I didn't see a chiropractor, I see Ben Gelfand at STAR physical therapy in Manhattan. He's certified in ART and it has been amazing for me. I can't thank him and Dr. Harris enough. So, definitely keep up with it, I think it takes a few sessions to really work. That's interesting about the topical Elavil, I'm still on Cymbalta and lyrica, and I'm too scared to switch! Maybe later this year.... The psoas is the worst! But I feel like I am making progress since my hip surgery that I wasn't before. Now I hardly think about how long I sit for, but obviously I should! Good luck and keep us posted.

In hip solidarity,
Jackie