Health Organization for Pudendal Education

What a great update, Beverley! I'm so so happy for you! My surgery was about a week after yours, but my PN recovery is going a bit more slowly. I too am working very very hard -- a full-time job --- to get better, with the same kind of modalities as you. The good news is that my vulvodynia (which only arose after surgery) is well under control. I started taking 10 mg. Elavil and I stopped swimming in chlorinated water. Swimming has always been my big escape from pain. But it was not such a difficult decision because I CAN WALK AGAIN, so I now power-walk 35 minutes a day. And I am back in the gym lifting light weights.

My pelvic PT is very pleased with the progress of my pelvic floor muscles since the surgery. They are getting softer and more supple every week. She works on my pelvic floor muscles very aggressively every Monday and I usually don't fully recover until about Thursday. But by Friday I can usually sit comfortably and can finally go on trips to the country with my husband on the weekends, something I haven't been able to do for two years.

Meditation and visualization ("yes I can have painless intercourse, yes I can sit!") are also helpful in rewiring my brain from pain to no pain.

So we seem to be following the same path to full recovery and yes, it does feel wonderful!

Hugs to everyone. Please get your hips checked!

Wonderful posts you two hip chicks
It is great to know that between us we are gathering constructively from many different pelvic medical modalities. I suppose that because the PN/pelvic nerve problem is not addressed under a single speciality it has fallen to us to explore other routes to success.
Thank goodness for your successes so far. Another primary reason for PN it seems.
Take care,
Helen

I am so glad to hear of the success' of both Lernica and Beverly! You both bring hope to those of us in the beginning phases of pursuing surgery. I am still extremely concerned about the surgery in the sense of damage incurred by the perineal post. As i have stated before, the majority of my pain is just forward of the sits bone. Any pressure to this area, i.e. SITTING, causes pain at the left sided base of the vagina, back towards sits bone, extreme pain .

If this post that is placed during surgery is pressing on this area, I am concerned of potential worsening of PN symptoms since this area IS my main pain area.

To add more confusion, saw my pain dr. yesterday; she has heard nothing of the hip relationship to PN. She feels I should hold off on hip surgery until we do a few more diagnostics, i.e. a block to the PFCN, or a PN block. I would consider doing a block to the PFCN, but not to the PN as even she stated, a PN block does not come without risks.

I see Dr. Struan Coleman on Oct 24th to discuss the hip injection response and whether we will move forward with surgery. I had my head set on the surgery and the pain doc has me doubting myself (uugggggg!!!!)

Pregmom,

Just because your pain doctor isn't aware of the connection between pelvic pain and hip pathology doesn't mean it doesn't exist. I am constantly having to educate my doctors about the relationship. You yourself know that there is a well established connection in the literature (all the articles are posted on the Hip Chicks Unite website, Pelvic Pain Hipsters Group page). You have been diagnosed with hip pathology and so I doubt that diagnostic injections will bring you any more answers about the source of your pain.

Please don't be too concerned about the perineal post. The (scarce) literature on the relationship between the post and pudendal neuropathy indicates that the neuropathy (mainly numbness) is merely transient in nature and subsides in 2 - 6 weeks. Indeed, that is the experience that Beverley and I had.

In my view, the post puts no more pressure on the perineum that a bike seat would and so the question is: am I willing to go on a 40 minute bike ride in order to eliminate a lifetime of chronic pelvic pain? In my view, the benefits of arthroscopic hip surgery far outweigh the risks of worsening your PN pain.

One final note: Please remember when you meet with your hip surgeon to focus on your hip symptoms and pain, not the pudendal. He or she will balk at the surgery if s/he thinks it's only to fix your pelvic pain. That is not to say you shouldn't express your concern about the post. I asked both my surgeon and the anaesthetist to make sure the post was super well padded during surgery because of my history of PN, but I never told them that the reason I wanted the surgery was to fix my PN.

Hi Lernica

I really don't want to have any nerve blocks at all. After having my appt with the pain dr. last week, I ended up calling them back and asking to have the doctor call me. I am faxing the articles over, and hopefully she will review them before she calls me. All of my PN pain is left sided.

I guess my concerns are is the hip pathology truly related to my PN symptoms?:

I had left lateral hip pain (trochanter area?) 12 years ago about 6 mos after the birth of my first child. Lateral left hip was very painful after sitting, driving, etc...I saw a chiro for this and the pain improved.
I started with just vulvuar pain in Jan2010 but developed true full blown PN in Sept2011 which consists of 'pain', no burning. I don't recall alot of hip pain associated with the PN pain unless I just didn't notice because the PN pain is so LOUD! Although I do recall that I had a short bout of left sided hip pain after internal PT in the fall of 2011.
Currently, I get hip achiness, sometimes but not always I get that 'catchy' feeling after walking a distance, with sitting (on a cushion) I will sometimes get pain at the adductor, like a twisting, indian burn sensation which I am not sure is coming from the hip or if it is my PN pain acting up and moving forward along the saddle.
After the diagnostic hip and psoas injection, approx 1.5 weeks post, I felt I noticed a little shift in the PN pain i.e. that pain inside a forward of the sits bone, i don't know it seems less 'reactive' if that makes sense. I seemed to be able to do more without flaring. This lasted about a week and a half and then I had a flare. Probably did too much. I don't know if the 'shift' was due to the injections? or if I just had a good week and a half! Currently, I am somewhat functional in that I can work i.e. standing all day, I can drive short distances with cushion, I CANNOT SIT. My biggest fear is that the surgery will worsen my PN pain. I know there was one person on here whom stated she got worse 'Bridget'. Do we know of any others won here whose PN pain has permanently worsened after hip surgery? and if yes, i would like to know there hx and symptoms before their surgery.

Diane

Diane,

No I don't know anyone whose PN has gotten worse after arthroscopic hip surgery. Each of us has to be comfortable with our treatment decisions but I would encourage you not to let fear be your guide, especially if it is based on dated and second-hand information about a single individual. (Can you track Bridget down? Maybe she's better now?) Sometimes we PNers have to take a leap of faith in our treatment decisions (sometimes new, sometimes unproven) because if we do nothing, we won't get better! And the longer we wait, the harder it is to make a full recovery.

I continue to make improvements every day, now 3 months (left hip) and 6 months (right hip) after surgery, e.g. painfree intercourse, longer sitting tolerance, power-walking up to 45 minutes daily, and driving myself to pelvic PT appointments across town. They may seem like baby steps to some, but at least they are baby steps in the right direction and they are huge for me!

Your hip symptoms are typical of hip pathology -- namely the hip "aches", sore groin, "catching" sensation when you walk -- while being atypical of PN. We were both blessed with a unique opportunity to resolve our PN, namely by fixing our hips through minimally invasive arthroscopic surgery (usually close to home) instead of undergoing risky open neurosurgery (often across the country or overseas) to decompress our pudendal nerves. I for one am very happy that I decided to to so. Now I see a bright pain-free future ahead of me.

Wishing you all the best as you go forward.

Hi Lernica

Fear is definately something I am all too familiar with and often it does take over. Staying stuck and living in pain and the associated fear and depression is not where I want to stay. I have 2 beautiful girls, one just became a 'teen' and another just 18mos whom I have to keep trying to get better for. There is so much more I want to do with my life....with them. Just writing this makes me cry as thinking of them, I want to be so much more . What did my kids do to deserve this? I don't understand. Sorry to get off topic but I am have a 'crying' day today.
I will bring my fears and concerns to NYC next week when I meet with Dr. Coleman, and hopefully make a decision. Doing nothing isn't going to get me anywhere.
Thank you so much for being a support for me. You are always there when I need you ......AND I am so happy for you that you are making progress. I totally get what you are saying about baby steps and you should be so PROUD of yourself. So happy you are on your way to 'pain free'!

xo Diane

Diane,

Just remember in your appointment with Dr. Coleman next week that your message is: "My hip's killing me!". Tell him that the hip injection helped. Any improvement in pain, whether small or temporary, is considered to be diagnostic of hip pathology. Do not spend too much time on the PN issue as it might scare your surgeon away. Play your cards fairly close to your vest so you are in the driver's seat and can make the decision that is best for you. You don't want to close the door to hip surgery because you have persuaded your doctor that it will only make you worse.

My rule of thumb is to speak to the specialist in his or her language. With my OS and hip physiotherapist I talk about hip pain. With my pain doctor and my pelvic PT, on the other hand, I talk about pelvic pain. I rarely cross this conversation/language divide, because I have found that if I do, it only serves to confuse and (sometimes) alarm them.

Please let us know how it goes and what you end up deciding! And please don't hesitate to contact me at any time along your journey.

"My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic." Jack Layton, August 2011.

Congratulations to you girlsfor finding a solution for your horrible situation. This thread has piqued my interest and renewded my enthusiasm for finding a cure for myself! Reading the various medical reports linked within here, cycling seems to be a strong link with hip dysfunction (I was a cyclist) and the following details were given in the reports of two MRI's I have had (12 months apart). The doctor totally dismissed them as being unrelated to my PN problem and did not investigate further:

"Focal relatively high signal within the base of both femoral necks raise the possibility of stress reactions in this region. There is no destruction of the cortex or involvement of the lesser tuberosity.
Mild leftadductor longus tendinosis.
Small 8mm cystic lesion in the inferior neck of the left humerus, the significance of this is uncertain. It is probably worthwhile performing a formal MRI to further evaluate this. Some subtle lateral head/neck offset is noted bilaterally but without any definite evidence on the current imaging to suggest underlying femoroacetabular dysplasia."

"The 8mm lesion inferior to the head/neck junction of the left femur persists. On the current study, there is suggestion of some focal enhancement. This raises the possibility of some focal synovial hypertrophy or even a tiny focus of early pigmented villonodular synovitis"

Anyone with a bit of knowledge of the various hip pathology problems able to convert the above into plain english and maybe give an indication that this train of diagnosis would be worth persuing and is related to the various hip pathologies referred to in this thread? Bearing in mind I am male...

It is interesting that it seems to be issues with my left femur/hip, and all my perineal pain is on the left side only. I also feel increasing pain on the inside of my left groin, and the hip itself, when standing for long periods. I also felt/feel the 'grabbing' or 'catching' feeling in my left groin when walking, but not in my hip joint itself. I also distinctly remember feeling clicks in that inside groin area near the tendon, every now and then when performing a stepping motion, that caused instant genital numbeness. I often wondered in the past if my sore left groin tendon (left adductor longus) and surrounding inflammation there was aggravating my pudendal nerve. But assumed the nerve was not located in that general area. Hopefully I do not come accross as trying to convince myself that this could be the answer, with tenuous links!
Thanks for your help.

Regards

Nathan

Nathan,

Have you taken your MRI images to an orthopaedic surgeon specializing in hip preservation (not replacement) surgery? He or she would be able to tell you what's going on. These specialists are few and far between; they're usually younger than regular orthopaedic surgeons and have been trained in the United States. It's a relatively new subspecialty of orthopedic surgery. The "master" of hip arthroscopy is a doctor in Vail, Colorado by the name of Marc Phillipon. Any doctor trained under him would have developed an expertise in the surgery. Perhaps you could do a Google search of orthopaedic surgeons in New Zealand or Australia, using "Phillipon" as one of your search words.

In my opinion, there is definitely some hip pathology in your left hip, and possibly both. It seems that you have stress fractures in both hips. (Are you sure you aren't a runner?)
You also have a cyst on your left femur (not "humerus", which is the shoulder) which could be suggestive of femoroacetabular impingement ("FAI"), a growth of bone spurs in the hip that can result in a lot of pain. You also have synovitis in your left hip, which is inflammation within the joint. This is usually due to hip pathology -- i.e. a bone spur rubbing the hip joint and causing it to inflame. Synvovitis is a very painful condition. It is generally relieved by a cortisone shot, and relief can last weeks. Doctors often use cortisone injections as diagnostic tools for evaluating hip pathology.

There is no mention of a labral tear. My MRIs didn't show a labral tear either, but when my OS opened my up, he found tears in both hips. The gold standard for detecting a labral hip tear is an arthogram with contrast, an MRI where they inject your hip with dye. You might want to talk to your doctor about having one as you wait for an appointment with a hip preservation specialist.

You could also join the great website called Hip Chicks Unite (yes men are also members) where you could obtain answers to your questions during your hip journey. There are other message boards out there too (e.g. Yahoo), but I don't use them.

I would encourage you to explore this route, as your bone spur could be causing damage to the cartilage within your hip joint.

Don't let non-hip doctors discourage you from pursuing this route. It took Faith several MRIs and wasted visits to non-hip doctors before she finally obtained a diagnosis of hip pathology from an orthopaedic preservation hip doctor. Her story is not unique.

Good luck! I hope to see you on the Hip Chicks website! There are other folks from New Zealand and Australia there.