Health Organization for Pudendal Education

I have seen Dr. Sampson at UCSF, he ordered a MRI of my left hip which showed a cyst near my femoral nerve... but showed no labral tear/or fai impingment.. Dr. Sampson wants to drain the
cyst, but not sure, if I want to, because I actually have been from PN on left, where the cyst is, next to the tailbone....I also have SI Joint dysfunction....and a twisted sacrum....so all the cyst
may be due to all else that is going down further near the PN, not sure...just wondering if your cyst was near your femoral nerve and what type of symptoms you had....thanks for all your insight
into this illness...feeling as if are own advocates..Thanks Antonia

velmartd--my first MRI was read as being a cyst in the hip socket, and was considered an incidental finding. Are they sure it is a cyst?

I was about to start a non profit for other reasons, but I am a bit more interested in this now. I just did 3 weeks of PT at a place where collegiate and professional athletes were diagnosed within a week or so and sent for surgery (usually for the muscles only), and everyone else was a woman who had gone 2-10 years (except me, I was under a year) for a DX and had to advocate themselves into getting help. I realize a site for pudendal nerve issues isn't necessarily the place to post this, but I don't think this can go without being a bit more publicized. It breaks my heart that so many women are told to live with it, go to a psychiatrist (?!? I heard that from a few women there), go get pelvic floor therapy, etc. if there's even a chance that this is hip pathology or hip + muscle tears. No one should be ignored into disability. I didn't even know what a labral tear WAS until I demanded my 4th MRI and was DXed.

I'll try to get off my soapbox now, but I've been writing so many reporters about this it's ridiculous, and they're actually interested! Keep advocating. Please. Do all you can. For yourself and for others. I just have PT ahead for now, I'll get strong again, but I'm ready to try and get as much publicity as possible for this. And just think, Lady Gaga has been through it, and she seems fairly interested in activism. OK, off the soapbox and onto the horror that is the 20 minutes on the stationary bike....lol.

(edit--the stationary bike is part of my PT protocol....I realize now that that is not something everyone here can do, and apologize if it seemed insensitive. I also am now a bit worried that I'll end up with more pelvic issues due to this one form of cardio I'm currently allowed/recommended....any thoughts? And again, sincere apologies if that was an "off" thing to post here.)

I don't think it is a strange thing to post here at all. It took me about a year and a half to get diagnosed with my labral tear after having itchy/painful PN symptoms. I think more research needs to be done between the hip/PN and SIJD/PN connections so that we can better figure out who hip surgery and SIJ treatments is best for and to increase awareness. A non-profit to increase funding for research would be great. As many have written, it is not straightforward, but it works for some. And when it does work, it feels like a miracle!

As far as the bike, just do what feels comfortable for you. If the bike flares your PN, stop. Sometimes I do the bike, but if my sit bones hurt, then I don't. I do the elliptical instead.

Thanks, Jax. You were a year and a half? Some of this is based on the length of time I've seen people here suffer, some from where I had surgery. I called the admin. of my 1st pelvic floor PT today, because I am starting small (and she is really nice--the admin, not the PT, ugh), and just informed her of the extent of my injuries, the struggle to get this dxed in town and how horrible it was to be told by that pelvic floor PT that my major problem was this obsession with finding a diagnosis. I'm not kidding, she kept saying, "It's like the layers of an onion....you must be patient", "don't talk about how it normally feels, you have to accept how it is NOW" and "stop trying to find a diagnosis! None of my patients ever find a diagnosis!" not to mention, when I couldn't urinate (sorry about the TMI) ,"none of my patients can urinate!". Ugh. But she really kept hammering me about the trying to find a DX part of it, despite this starting with two distinct injuries.

The admin. was GREAT. She knows what labral tears are, they have several pelvic floor PTs, and when I told her the extent of the muscle damage she said she was going to call a meeting and discuss this to further educate. She really got it, this idea that there are people suffering pelvic pain who are just being told to do palliative things (not that some of them aren't helpful) when in cases where there are distinct injuries (or underlying pathologies) that can be repaired that is just a waste of time. Well, honestly, telling me I couldn't do a proper kegel because the muscles would spasm when they were barely still attached to the bone, where was that ultimately going to get me, and where would it get anyone else?

Anyway, that's what I'm doing, if anyone wants to do the same, I'm calling every single admin. for every office I was seen in that the doctors ignored me or thought I was crazy in (they kept asking me why I thought my abs weren't working because I could sit up), and not being angry at all, but just informing them of what my particular injuries were, and asking them to help me educate all staff as to the symptoms of labral tears, other hip pathologies, athletic pubalgia, and what little I know about PN. And reporters. Anyone I can think of who can spread the word. Lady Gaga. Anyone.

Jax--how did you like Dr. Kelley? Was he as good as I hear?

Antonia: you go girl! I had a very well know PT -- Stacey Futterman -- who was on the study that showed pelvic pain can be associated with hip pathology - tell me to just relax and not to be so angry/. this was when my symptoms came back six months after hip surgery. she also kept insisting that all the pain was coming from one location and it wasn't. she was totally condescending and completely wrong in her diagnosis. anyway. I wish I had the time to go back to all the people who thought I was crazy or got it wrong. but maybe someday I will. Im so glad you got a diagnosis.!! I too have had to keep pushing to find out what is wrong and I am 99% positive I know whats wrong -- I have ilioinguinal neuralgia and in retrospect have had it the whole time. Now that my hip is fixed, and I have done a lot of pelvic floor pt I can narrow it down. the next step is trying to cure it!

Beverley, ^5!! I know I posted this in an out of the way spot, but did you see Dr. Drew's comments (or hear) on women with pelvic pain? (http://www.pudendalhope.info/forum/view ... =11&t=5896) ARGH!!! I don't wish pelvic pain on anyone, but the reaction to having it is going to be a strong range of emotions, and why people think that is a chicken or egg idea in any form is absurd to me. Of course I'm upset. I loved my pelvis. It was a good pelvis. Hopefully it will be again.

I'm sorry you have neuralgia. Hopefully it'll calm down. I had a nerve injury in my face, and it took a while, but it DID finally stop firing (unfortunately they nicked the area around it in surgery and cause a sore that has it firing again). Nerve pain is just not something that can be even imagined by people who haven't had it. I've got a bit left in the pelvis, but hopefully (fingers crossed!) it'll calm down with the tissues healing. Who knows? So you recognize the neuralgia as longstanding? But it did go away for a time after surgery? How odd! Is that due to the general numbness the surgery can cause? I'm glad you're still working to resolve it all! By chance, have they tried you on tegretol? A month of that stopped that nerve from firing in my case finally. It just destroyed my stomach and memory a bit....lol...

One funny side note: called the uro-gyno for a follow-up today (my incisions ARE in his area, after all...) and whereas before they'd rush me in same day, today they said it'd be 2 weeks out for an appt. Because "someone ELSE did YOUR surgery". Boy, is that guy stuck on his "it's all pelvic floor dysfunction" thing! The second a link was found to my hip and the torn muscles, I stopped fitting the profile. But I'm not cured, everything still hurts!!! And I'm occasionally still having the bad PF spasms like before surgery (and those aren't muscles that were repaired). But I can't even get a script for pelvic floor pt out of him now. So much for the cofounder of the IPPS. I might revise this statement once I see him again, but honestly, 2 weeks and I've had surgery? Hmfff.

Dr Drew is an idiot. Anyway, My ilioinguinal neuralgia was probably caused by lumbar compression of the nerve, which may have also been made worse by my destabilized hip (due to labral tear/FAI). But my main pain was in the front of my hip and I thought it was from the FAI and labral tear but it was from the ilioinguinal nerve. Finally, after 3 years I'm figuring this all out. If you do start a non profit I think it should focus on orthopedic issues and pelvic pain. I think a lot of pelvic pain is caused by this and doctors and even PTs are so narrowly focused in their specialty or area that they miss it. My pelvic floor PTs were missing a lot of my ortho issues because it was out of their area of expertise. I have a lot more to say about this -- but will post more later.

Beverley - I sooooo agree - orthopedics and pelvic pain - oh yeah!
My next stop is to see a DO, I want him to eval my spine etc. I understand Dr. Gerig in Denver encourages patients to see a DO and a pelvic floor PT, that sounds like a good combo.
I've never had any surgery, so my pain issues have to be from misalignment. Perhaps the DO can do an adjustment to get my pelvis in place??? Or at least double check my SI joints.
The last pelvic floor therapist was an OT, and she doesn't deal with SI Joint adjustments etc. I stand so much more now, so I know I'm stressing my back differently now.

Debbie

Beverley, please do post later! I think we're all in the same trap. Gynos don't mess with hips or spine, there really ARE no muscle docs, PTs know the most about muscles (aside from a few specialized surgeons) but have no ability to order images, etc. It's a vicious cycle. My current PTs agree, and it's due to one of them that I planted myself at that final hospital and basically demanded a DX. She knew enough to know there was either damage or something missed neurologically, but even the doc who gave me the script to see HER wasn't going to do any imaging.

It was, "You have severe SIJ Dysfunction, piriformis syndrome, pubic symphysis joint dysfunction, pelvic floor dysfunction, which is also generalized pelvic pain and chronic myofascial pain" localized suddenly to the very spots I injured quite suddenly. I went half crazy from having to listen to that much BS being funneled into my ears. I'm perfectly aware that all of those conditions exist, but they don't suddenly spring into action after injuries with no injuries being able to be found, they just weren't looking closely enough, literally, it was there on the first scan and the radiologist just missed every last bit of it. And so did the 2nd one. And by then I was SO freaked out and centrally centralized that all doctors wanted to discuss was my anxiety....lol...funny how that disappeared after surgery. I'll start a non-profit, but first I have to figure out how to pay back all these doctors (or fight them off) who misdiagnosed me + the ones who fixed me. Whew. At least I'm getting local PT offices educated for now and a few doctors admins.

Minor setback and major change. Got the transverse abs kicked back on, now they don't want to shut off but are weak. Walked a bit too much and flared the hip. Back to one crutch, which makes the pelvic floor muscles kick back in. I have GOT to get my core muscles back in shape so the stupid pelvic floor will return to normal! Commencing PT core exercises in 3....2.....1....

Debbie, someone else on this thread mentioned to me the muscle spasms causing pelvic misalignment that disappeared after surgery, do you have any issues with that? Mine got so bad at one point that my pelvis was 1 inch higher on one side and tilted the opposite direction from the other side. Leg dragging on the ground, literally. Have they checked that it's the bones vs. muscles? How is yours off? Also, I had more success with a PT who used muscle energy techniques (just more gentle and stayed better), if you've not tried that. Well, she did the best she could. It still kept tipping back, but that turned out to be because my rectus were sort of torn off...lol.

Hi Julia,
I just happened to read your post and we sound so similar that I had to reply. I also had a regular MRI done on both my hips and the results were normal. My GP wasn't convinced with the results and consulted with a colleague in Edmonton who said that a High Resolution MRI would show a hip labral tear. It turned out I had labral tears in both my hips with an impingement on the left and 2 labral cysts on the right. Although the High Resolution MRI did show the labral tears the orthopedic surgeon said I should have had an MRI with contrast. I see that your post was from March and I'm hoping you already had the MRI you need.