Health Organization for Pudendal Education

Also I have have been to 3 different PT and one osteopath who felt my si joint was fine not out of place. A small leg length discrepancy and I have been wearing a lift for months now. Taking all these meds and lying flat because I have to work to keep a roof over my head and pay my bills is not a quality of life worth living. I don't live extravagantly believe me. Don't even have cable TV. Drive a junk car. But I do these things so I could do the other things in life life I love whic have been taken away from me....I feel god is punishing me.

Dear Patty...please believe me when I tell you that I understand all of your pain and lack of hope.I was just crying last night too and telling my husband that I worry that I will have to spend the rest of my life with this kind of terrible pain and discomfort.It seems that only sleep brings relief and even then it is sometimes hard to fall asleep.God is not punishing you Patty.If that were so there would be so many innocent people and children that would be punished as well.My young daughter has autism and is having a very difficult time seeing me confined to bed at times...staying in my pajamas ...she wonders how it all happened.I too used to be an active mom involved in everything and now it is an accomplishment to simply get through the day.I too have been going to a pt who keeps telling me that there is hope.I realized that I can either cling to that hope or be sad every day...I am choosing hope not just for myself but for my husband and children.Nerve pain,especially in the private areas cannot be explained to others ...there is no visible wound.People don't see that we are in discomfort 24/7.This contributes to our feelings of loneliness and isolation.But we have to hold onto our hope Patty.....go and see Dr.Conway....every bit of information will help on the path to wellness.You have nothing to lose by going ...Please feel free to email me personally Patty....maybe we can share ideas since we both have a very tight pelvic floor.I will keep you in my prayers.Blessings,Lise

Lise,

Thank you for your post. I too am a former active mom with a family that needs me. I am trying to keep hope through this terrible PN pain. It is hard to explain how much I miss my part-time job, seeing my friends, driving my child to school. Sometimes it is almost unbearable. I spent 2004-2008 with PN pain and then had almost 6 years living normally with minimal pain and have found myself back in terrible pain again 3 months ago. I am taking all the lessons I learned last time I went through this and hoping to make smart treatment choices this time. That begins with learning all I can through evaluations with medical professionals who know PN.

Take care and stay positive,
Stephanies

Hi Stephanies,Thanks so much for your kind post.It truly has been so very hard on my heart to see how my pn has affected my 2 daughters and my husband.My eldest daughter is now 21 and I would love to take her shopping ,go to a movie or the theatre with her but sitting in the cinema that long is not possible at present.She is at university now and my visits to the school have been minimal as it is 6 hours away by car.My younger daughter misses me watching her ride and help her at the barn as I used to..now I cannot lift her saddle.I have been homeschooling her for several years but sadly it is getting hard to keep up my duties.I miss romantic dinners out with my husband and taking long walks together.I too see my friends active and busy and miss their companionship.We live in the country and now that I cannot drive too far,loneliness has set in.
I am going to physio weekly hoping I will see some good results.I have weaned off of Lyrica as it made me unbalanced, in need of a cane and gain 40 pounds in the blink of an eye.I no longer need the cane but the pain persists . Norytryptiline helps with sleep and mood and a fentanyl patch keeps me able to function.I am terribly sorry that you were well for years only to have the pain return.....how devastating that must have been.I am trying in earnest to get all the help I can.I am waiting to see a specialist for nerve blocks and have to see a neurosurgeon in regards to a possible Tarlov cyst that appeared on an MRI.I would be so grateful to hear how you have navigated the stormy waters of peudendal neuralgia.The wisdom and insight would be most welcome either by email or a post.I will keep you in my prayers..Blessings,Lise

Patty, I've had other friends who did not want to try PNE surgery so they opted for more conservative treatments such as a pain pump or neurostimulator that were very successful. Maybe at least worth a try?

I understand the feeling of hopelessness -- I've been there. I remember before I had a diagnosis and felt like I had exhausted all of my options. What you are feeling is normal for people with pelvic pain and I don't blame you at all. I guess the only thing I can say is that I am really glad I held on until I found something that helped and I hope that you will be able to find a treatment that works for you. If there is any way I can help, please let me know.

Take care,

Violet

Well i am getting my 3t Potter MRI at MGH done on 3/25 and i couldn't get in for injections until 5/1.

I honestly hate this whole in between appointments, the anticipation and symptoms are killing me at this point

Joe,
I hope you get some useful info from the MRI. Patience has a whole new meaning with this condition! Hang on...
Janet

Hang in there Joe. Hold on to your wanting to know what's happening. I also recommend the mindfulness meditation for pain audio series by Jon Kabat Zinn. It has helped me a LOT.

Chris

Don't give up. I allot of us are right there with you..

If you need to call them once a week and ask if there has been any cancelations. Just be nice.

I deal with Dr. Conway's office in person. I go to pick up records and submit forms for them. That and I have access to the entire team, PT and pain clinic.

On top of PN he is still a practicing OBGYN, so he is still on call for the ER as well.

Dr. Conway is SWAMPED, he is doing 3-4 surgeries a week. I got a call today from the office asking if they could bump my appointment to schedule a second surgery on that day. The got me in a week earlier so I was happy.

Dr. Conway will call you at anytime nighttime, weekends, anytime.

When I talk to him, he says he is just so busy trying to keep up with the patients.

He is one of the best surgeons in the area, and he is also DaVinci certified for OBGYN procedures.

Don't give up... the first appointment is the foot in the door.

Foot in the door for what? What is he going to offer me that I have not already tried except surgery? I have at least 15 bottles of prescription meds vaginal suppositories narcotic (which I refuse to use) muscle relaxers that do not touch this pain. In reading from this board and other sites very few get better with surgery. I know there are some success stories here but I think they are few and far between.