Health Organization for Pudendal Education

Hi All,

I don't get on HOPE much anymore these days, but I wanted to write and give an update. A little over 3 months I had surgery for a left FAI/Labral Hip Tear. I had bilateral tears and impingement (minor), but I chose to do my left side first (which is my most debiliated side of PN/saral/low back pain). My hip pain overall is very minimal, but I wanted to try the sugery since others have had success with it relieving their pelvic floor pain. I knew it was a lesser invasive surgery than PN decompression and since I have tried and failed multiple conservative therapies and there was pathology found on my 3T MRIs, I felt it was worth a shot.

Sadly, at 3 months post-op I haven't felt any overall relief from the surgery. I am still healing and know that I could eventually get some relief of overall pain, but currently I am still dealing with worsening muscle dysfunction from the surgery (especially in my psoas, rectus abdominus, and quadratus lumborum). These muscles are like bricks and I struggle with a lot of tightness in my thoracic area (likely compensating for my pelvic instability/weakness).

I have always felt my pain was biomechanical in nature, but it seems to be much more complicated than just labral hip tear/impingement. My muscle dysfunction is out of this world and it seems I am dealing with a complicated case of multiple issues including, labral hip tear (still on Right), SIJD (due to ligament laxity), central sensitization, and PN(E ?) due to the ligament laxity of the ST ligament - that developed scar tissue after being sprained by a PT 3 years ago who did an SIJ manipulation.

I've seen some of the best doctors/therapists in the North America and it is frustrating to still be debiliated and in so much pain at a young age, but I continue to press on and know that even if I do not find relief this side of heaven I have a lot to live for and be thankful for. I am currently still trying to do PT for my hip (though it is almost impossibe due to my muscle compensation/atrophy and pelvic floor pain). I try to go to a warm water pool several times a week, get regular massages, do myofascial release (both self and with a therapist), and I am researching dietary changes for pain.

If you want to read more about my surgery/recovery check out my blog (referenced in my signature below).

Dear Faith,
I do follow your blog, and I want you to know I am praying for you.
You have left no stone unturned in trying to "feel better", looking for quality of life etc.
I was so hoping the hip surgery would have produced some, any, relief for you.

A huge HUG to you,
Debbie

Thanks so much for the update. I was so sorry to hear that so far you have no improvement. Big hug sent to you and prayers that with time you will notice some improvement.

So sorry that this hasn't done the 'trick' for you faith, but if you didn't quite know about how your muscles respond, you do now I guess. That sounds so weird , is the muscle work you are doing helping at all? loosening up with myofascial release a little? Do you think this is a wind up (CS) type of pain or due to the SIJD problem?
I suppose it will be too hard to differentiate at the moment. I suppose if the therapy works and the muscles stay more relaxed (fingers crossed) you may be able to put it down to CS and if things improve slightly with treatments but then revert back to spasm or tightness it would be feasible to blame a musculoskeletal problem like SIJD?? just speculating really. If only things were so separate and less complex and intergrated. . . .. it could well be a bit of both, couldn't it? UGH!.
Sorry, don't want to make your head spin, you have been through enough and have researched everything so well before taking any action. I just wish this had worked better for you.
Take care,
Helen.

Faith, I feel very sad for you and am sorry to hear the hip surgery didn't work. I'm sure your parents had a good reason for naming you "Faith" and I hope and pray that throughout your journey your faith will remain strong and that you will keep fighting for the treatments you need for pain relief. I truly believe that you will find something that helps -- it just hasn't happened yet but you still have options.

Hugs,

Violet

I'm sorry to hear that you are not feeling better Faith. You know that I have been rooting for you! I am 3 weeks out from surgery and my muscles have also seized up some, but my PT says that is normal and will relax in time as I heal and go to PT. How often are you able to make it to PT? I know that you have to travel awhile to get there. I just ask because maybe you shouldn't consider the surgery a failure yet if you aren't able to have consistent PT right now. Dr. Kelly, for example, has his hip patients start PT the day after surgery and do PT twice a week for up to four months. (It seems like a full-time job, lol) I spend about four hours a week at PT plus the time spent in my continuous passive motion machine (CPM) and doing exercises at home. Even if it is impossible for you to see a PT at that level right now, maybe you could ask for more exercises at home? I'm just brainstorming, and I know that you have already done a ton of stuff, so I hope this is helpful and not insulting. The warm water pool sounds great, I haven't been able to find one, but I really would like to try it. Anyway, I'm sending prayers your way and I know that some day your pain will improve one way or another.

Hugs,
Jackie

Hi Helen,

I personally think I am dealing with both musculoskeletal pain (due to biomechanical issues/muscles imbalances/weakness) and CNS wind-up. The longer this has gone on the more complicated my muscle imbalances/weakness have become. I do have symptoms of CNS wind-up, but I also have pain that cannot be explained from that alone. My muscles are so tight that I LOVE deep tissue massage, which is not typical of someone with central sensitization. Myofasical release helps very temporaily and not enough to greatly improve my quality of life as of yet.

Hi Jackie,

Yeah, Its been difficult for me because I cannot find good PT where I live. I travel to see my hip PT/pelvic floor PT once a month for 2-3 days and then I see a myofascial release OT twice a week locally. My hip PT has given me exercises to do and I keep in touch with her regularly, but I am not able to progress my with exercises due to my pelvic floor pain. Any glute sets/strengthening greatly increases my pelvic floor burning. My muscle imbalances are so bad that my brain uses all the wrong muscles as well so I end up using my back when I should be using my glutes/core and continuing to conract a hypertonic muscle only perpetuates the pain cycle. So....it's a tricky situation. I am trying to do pool therapy, short walks, and massage/myofascial release in hopes of calming down the tight/overworked muscles and if I ever can get them under better control then I hope to increase my strengthening ability. Unforutantely my hypermobility/ligament laxity makes this extremely difficult.

Faith,
I feel your pain and frustration. I had a hip repair with Dr. Coleman at HSS back in Jan 2011. I did 3 months of PT for my hip 2x a week, it was very grueling and tearing but my hip pain did lessen post PT and surgery. I continued to have pelvic pain. About a year after I finished PT on my hip the pain came back...much worse. I had an MRI a few months ago which showed labral tears in both hips. We did cortisone injections to make sure it is the labrum and it showed it was the labrum. Dr. Coleman is still puzzled why my right hip (which is the hip I has surgery on) is causing so much pain. Fri I went for a CT scan, hopefully that will show something. My left hip has labral tears we opted not to do surgery last year but it's gotten worse so I may decide to do it, but I'm not sure....
My pelvic pain has not gotten better, it's only gotten worse so not really sure what's going on.

Wishing you luck
Shana

It sounds like you are doing everything that you can possibly do Faith, I know it is frustrating. I actually had to have an emergency appendectomy last Wednesday, so now I am recovering from two surgeries! It is holding back my PT for a week or so, but other than that I am grateful to be okay. So, I can sympathize with your frustration over multiple issues at once. It gets very complicated. Right now on top of it all I am dealing with a nasty yeast infection from the IV antibiotics at the hospital. I hate yeast infections because my PN pain started as vulva itching, so it is traumatic. I'm praying for you and for all of us to get better.

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

Faith, I can't remember if you ever tried a sacroiliac belt? Just reading about your hypermobility, I thought it may help keep things better aligned? If you could use one it may help calm many of the pelvic knock on/wind up problems down too. Worth a try if you haven't already done so.
I have a similar problem in that any glute max work/tightening just 'pings pain' straight to my piriformis and sets all things off to a higher level.
Have you tried mindfulness or other cognitive therapies at all to help central sensitisation at all?

Take care,
Helen