Health Organization for Pudendal Education

Antonia: vaginal valium is GREAT. i think it works better than anything else. there are no side effects. is your pain management doc familiar with pelvic pain -- if so they should be able to prescribe valium -- it is nothing like steroids. and, you may just be having general sensitization and need to do thing to calm your nervous system ( i know i have been there)!!

Hello everyone,

I haven't posted for over a year, since I started to feel better. I am now completely pain-free, I can have sex, I can lift weights, I can walk up to 1.5 hours, I can wear tight leggings (but will never go back to tight jeans), I can ride a bike. My PN days are now just a distant memory.

I credit my recovery (chronologically) to: First, Dr. Andrews' shockwave therapy. The treatment is like deep-tissue massage on steroids. Dr. A. used his shockwave tool to massage out all the lumps of hard muscles and trigger points that had developed in my pelvis after ten years of disability and pain. Second, bilateral arthroscopic hip surgeries to repair torn labrums and to remove bits of shredded cartilage that had broken off in my hip joints. (My arthroscopic surgeon, Dr. Ivan Wong, in Halifax, Nova Scotia, likened my right hip joint to a set of bicycle gears with sand thrown into it.) Third, a full year of weekly pelvic physiotherapy sessions involving internal massage of my tight pelvic floor muscles by Nelly Faghani in Richmond Hill, Ontario. Fourth, Lorraine Faendrich, a "Women’s Health Coach and Mentor specializing in the relief of Female Pelvic and Sexual Pain", for helping me understand the body/mind connection to chronic pelvic pain, and for teaching me tools to overcome it. Fifth, addressing my depression and anxiety with antidepressants and psychotherapy. And finally, this forum, for helping me find my way to full recovery. It was here where I learned about shockwave therapy, hip pathology, pelvic physiotherapy, and the mind/body connection to chronic pelvic pain.

(For further details on my journey, please read the early posts on this thread and on another thread entitled: "Lernica's going to Cornwall for shockwave therapy!")

Sending my love to all of you and my wishes for your own improvement in your pain. As a forum member once memorably posted, "May your future be free of pain and your genitals only a source of pleasure."

Lernica

Hey Lernica....it's great to hear you are doing so well! Thanks for posting an update. I still refer people back to your posts which have been an invaluable contribution to this forum.

All the best,

Violet

Great news! Thank you for sharing.

So great to hear Lernica! I know it was a long and tough road. Really happy for you.

Here's my update: I had labral tear surgery November 2014. I was found to have Psoas impingement, the psoas was too tight and stretched over the hip capsule, rubbing and causing the labrum to tear. All went well with the surgery and recovery, though my surgeon is clueless about pelvic floor dysfunction so I knew I would be on my own trying to address that area of things after the surgery. Since January I have been seeing a local PT for external and internal work twice per week. She seems very knowledgeable and has managed to correct my leg length discrepancy and pelvic tilt. I have had a few weeks of 2/10 pain which was wonderful, but right now I am in a huge flare. Lernica, did you find that you had flare ups while in PT? What helped you to get through it? I think it is my obturator internus, illiococcygeus and piriformis all on the left side that are in spasm. She works on them, but sometimes I feel like they need to be worked on more. I can relax my pelvic floor when lying down, but as soon as I stand up it tightens up again. She has identified that my core and glutes are not firing, causing the pelvic floor to take all the load, but it is tricky work trying to strengthen those areas and keep the pelvic floor relaxed at the same time. Feeling frustrated that I still can't do so many things (drive, sit, ,etc.) but determined to stick with it.

Hey Julia,

All your current symptoms sounds exactly the same as mine were. It took one year after the second hip surgery for the PN pain to subside. I had many many ups and downs, many flare-ups, many tears shed at the PTs, lots of frustration. Be patient and know that over time your body will heal. Who did your arthroscopic hip repair? What did the surgeon find in your hip joint?

Are you the Julia that I met on Hip Chicks Unite website?

Please feel free to PM me for more info or just to chat. Not too many folks from Toronto here! Is Dr. Gordon your PN doctor?

All the best,

Lernica

Hi Lernica,

You and I have chatted over email a few times, I saw Dr. Andrew also and you were so kind to prepare me for what to expect. Unfortunately, I did not have any improvement after seeing him for 2 separate week long sessions. However I did find the take home stretches to be helpful. If you look further back in this thread you can see where I began to wonder if I might have a labral tear. After a long struggle to get the right imaging done I got in with Dr. Murnaghan at womens college hospital. I didn't have any range of movement restrictions, not the typical FAI presentation, but on my images it looked like there might be a tear and a very small cam impingement. In surgery he found that I had a partial labral tear, anterior to the iliopsoas tendon. The psoas was rubbing against the labrum causing something like a hang nail that was getting caught. He trimmed it and released my psoas so that it would no longer be rubbing against the labrum. The cam was deemed not to be a factor when he moved my legs around in surgery. In January I started pelvic floor pt and it has been very slow progress, tonight I feel almost as bad as I did when this all began 6 years ago. One problem is that I am not properly medicated. I was seeing Dr. Gordon but at some point missed an appt. and now they tell me that I have to go through the referral process again. At 5 months into your pt after the 2nd hip surgery, were you still on meds? I am not sure what to ask my family doctor for as he is not pfd aware. I struggle back and forth from wanting to stop all meds and then being unable to function without them. I am currently on 25mg amitriptyline and .5mg clonazepam. I also think I need to examine the mind/body connection as you have done. I think that is a missing piece for me. So relieved to hear that you had ups and downs in PT because I was almost ready to give up this past weekend when the pain, anxiety and depression was taking over. Thanks for writing and for giving me hope.

Julia,

Please do consider taking Lorraine's course! It connected so many dots for me and helped me understand -- and overcome -- the body-mind connection in chronic pelvic pain. Also, who is prescribing your clonazepam? Your family doc? Have you considered seeing a psychiatrist instead? S/he could help wean you off it. The problem with benzodiazepenes is that they become less effective over time and can sometimes make anxiety symptoms worse if you're not getting enough. For your depression and anxiety, have you ever looked into doing Cognitive Behavioural Therapy with a trained psychologist? Again, I found these sessions extremely helpful and empowering (although expensive unless you have private insurance coverage). My Toronto CBT psychologist was Dr. Eilenna Denisoff from CBT Associates of Toronto on Richmond St. I can't recommend her highly enough.

Another avenue worth exploring (for both your pain and your depression/anxiety) is to take a mindfulness course. Do you know about mindfulness? It is a form of meditation. There is a specific mindfulness program for health offered by Dr. Lucinda Sykes in Toronto. She is an M.D. and so her course is fully paid by OHIP. I took it about ten years ago and I found it extremely helpful in helping me overcome depression.

To answer your question about how long after hip surgery I was still on mood drugs, the answer is ... I'm on them still!! (except the benzos) So please don't stress about it! The drugs are helpful for relieving some of the worst symptoms of depression and anxiety but, at least in my case, they were only part of my recovery.

Best of luck and please do not hesitate to contact me by PM or email if you have any other questions or would like to chat.

Love,
Lernica

Hello ladies

Don't know if anyone remembers me, but I've returned to add to this thread.
My PN type pain started in May 2012. I saw many specialists. I ended in up pelvic floor PT. Thru that, I discovered hip problems on top of pn-type problems.
I was Diagnosed with FAI and hip labral tear a few years ago. I have since returned to Chicago and given a second opinion from Orthopedist Dr. Shane Nho. I guess he's a major dude in Ortho. I got a cortisone injection which gave relief and confirmed tear.

I was relatively pain free for the past 2+years, with occasional bladder/urethral/pelvic pain. I could sit again for long periods, have sex, etc.

My hip gave out a few weeks ago and is a wreck.

I am scheduled for hip arthroscopic surgery for tear and FAI on July 8.

I'm in a terrible vaginal flare and have been for almost a month. It ALWAYS comes on in May...So i've not ruled out allergies, tho I don't suffer from them in my head or face..

I do not expect this hip surgery to "cure" my PN-type pain. I was never officially diagnosed with PN but have all the classic symptoms.

I am deathly afraid of this surgery making my pain worse, or constant with no remission, as I'd have over the last 2 years.
I know if the relief comes, it won't be instant. This thread has given me some reassurance, but I know everyone/case is different.

I will keep an update of my recovery. I am hoping it will be positive and that I can reassure someone else out here, that there is hope and that exploring an orthopedic problem may help.

Pizzarios, I wish you all the best with your upcoming surgery and hope that by this time next year (or sooner!) you will have some good news to report. Please take it easy after surgery and allow yourself to heal.

Best,

Violet