New..my story. seeking advice...thoughts. Thank you!

[sman787]

Hi everyone! New here. My story. Stress fracture, sacral ala mid-August this year (2013) Not diagnosed until Sept. Occured on vacation alone and used towels to support butt in car as I drove for hours and days after break. May have caused some compression doing that...unclear. Rested some after mri Sept 1st showed break...and finally limited lifting and bending. Returned to work (teaching) early Oct. standing brought on progressively prominent "poking" lump feeling in left rectum, which increased over time. Ignored it as it grew. Started to bend again at waist as I grew stronger around the bone. My comment to doctor. "My break is better, but now I'm in more pain". Early Nov., started to have superficial allodynia/hyperalgesia on left labia while sitting at choir (hard seats..3.5 hours) that persisted after rehearsal. Began to guard against sitting. Regardless, started to have more discomfort sitting and worry about upcoming sitting situations and types of chairs. Appointed to three major new committees. Nov. 20th sat in new evening meeting for three hours. Tried to fidget...but could feel more symptoms in "front". Next day, all bending forward brought on "tractioning/pinching" feeling of excruciating pain in urethra/vaginal area..wall. Symptoms increased rapidly since then. Now rectal lump sensation always there but still mostly ignorable. Urethra/vaginal pain very intense 9-10, disabling and posturally crippling. Can not sit (at all) and can not drive. Tried to sit through Thanksgiving dinner and was in sheer agony and leaned sideways. Can not get inflamed "crotch" to settle down...or allow sitting, driving or any bending. Live alone and now in just a few short weeks can not work, drive, take care of house etc. or socialize. Have been reading about PNE or PN for weeks on this site after self diagnosing this. Horrified and distressed that no solution exists. No physicians here understand it or do surgery, and will send me I guess to "Pain Management" for drugs and blocks. I have many questions. Does pelvic pt help? Do drugs like neurontin, Lyrica, Cymbalta help, and most important....can I do something *myself* (short on traveling on my back I guess to Arizona, anew Hampshire or France for surgery that I've yet to read helps) to "fix" my "entrapment" (which seems impossible to diagnose) or my neuralgia/neuropathy? And should I hurry to one of these centers? Being straight here as this is the place to do it : I do not feel interested in living my life in crippling pain *and* as a social shut-in with the loss of sitting and driving. I am in late 50's, single, no children and have had a "good run" so to speak, and losing all I enjoy to do (movies, restaurants, ballet, choir, public service committee) so that I can stay home alone..alone..alone 24/7 at home unable to bend and having to eat/cry/etc. standing..or depending on others seems contradictory to my persona. I can see if this stays like this, I will have to surrender all that...and I do not think the other..being alone all the time will be a good replacement. So.....I ask you wise folks. Can I regain my life via surgery, pain pump, pt, drugs or something????? Or is what I have it?? And will sitting always be impossible..and I just need to adapt to this new life which has already cost me all my social circumstances (like the fact I now can not have Xmas dinner with my 91 year old mother and family). Also, if I did travel to an "expert" for surgery etc., how did you do that (I can not sit at all)...as I see my actions now, I am beginning the long process of decluttering my stuff/life and finishing lose ends with the idea of ending my life rather than live as an alone shut-in. is there something I'm missing that can regain me my freedom and independence? or will the constant pursuit of a "solution" simply irritate an already damaged nerve..and pread the pain further. Thank you all!!!! I am in Oregon and seem to be the only person here with this....there are no doctors focused on this here.....and would love to make new friends with fellow PN sufferers.
Sam

[janetm2]

Welcome Sam,
Awfully sorry to hear about your plight. It does not have to be the end as there are options to try and even surgery can help to regain some if not all the things you have lost. Not sure if there is a PN aware PT near you ( there is a list off the homepage and also read the FAQs for a plan to diagnose and treat PN and PNE.). PNE generally requires surgery. I think some people have gone with stimulators or pain pumps to gain again most or all of there life back. PT cannot solve PNE but can help with muscle issues and provide info towards diagnosis they actually dtermined my nerve was trapped between the two main ligaments and sent me to the PN doctor for the official diagnosis (included history of constipation, tons of sitting and the hard chair sitting that began the constant pain). I am 2.5 years post op and able to go out to dinner, work 6-7.5 hrs a day using a custom Roho cushion and cook do laundry but with chronic foot pain I do not clean house (this was the case before PNE). As for drugs they can really help to at least get you through the diagnosing - again info in the FAQs for you to work woth or doctor or pain management. Good luck.
Janet

[nyt]

So sorry to hear pain has started for you. I would like to suggest the cause of your problem may very well be from you back and not an entrapment of the pudendal nerve. Fracture of the sacrum or at L5 has the same symptoms/similar symptoms as PN/PNE. I have a dear friend that had what is called cauda equina which is a medical emergency, and is totally numb in her perineum from it. Luckily she didn't end up incontinent. You might want to take a look at that.

Getting a referral to a neurologist and pain clinic would be a good place to start as they can figure out the origin of the problem. All the drugs you mentioned is a good place to start with medications. Also, finding a pelvic floor PT can help figure out what you have.

You might want to try a cushion with a cutout in the center to see if that helps the sitting.

Keep us posted.

[Roger]

Hi Sam,

I'm no expert (especially not on the other side of the pond), but I think you need to see a Neurologist and a pain management clinic.

Try not to research too much as there are many things that could be causing your pain. But it needs managing and researching asap.

Take care,

Roger

[mjdoh]

Hi Sam, Sorry you find yourself here. My heart goes out to you for how devastated and alone you feel. (Hugs). we've all been there. Yes there are things that you can do to help and it is treatable. The fact that your symptoms started after you sacrum break and healing suggests that they might be able to ascertain more precisely where your nerve irritation/impingment is happening. So that's hopeful. How did you manage to get a stress fracture there? Are you a runner? or do you have osteoporosis? Probably wasn't a great idea to sit and drive right after your break - but you know that now! Have you had a repeat X-ray or MRI? I would start there and also get some pain relief!!! Cymbalta worked best for me to put out the fire with the least side effects of all the meds I've been on. Get your doctor to get you started on something for neuropathic pain is a must if you haven't already. It will give you a break and help you think more clearly and also allow you to travel for treatment when your pain not flaring as wildly as it is now. I am in Ireland so cannot advise you on who would be good to see for treatment, but there are good recommendations on this site. In the meantime ICE-put some rice in a ziplok bag in the freezer. Or some people use balloons/condoms filled with part water, part rubbing alcohol. Also some people find relief putting various compounded meds or Emla (lignocaine), or vagisil cream on vulval skin. Personally I could not tolerate anything there while I was flaring but some people have found relief with that. Pelvic physiotherapy? I'm not sure what the best time to have PT is. I'm on the fence on that one since it seemed to help me initially then made me flare very badly and started a cascade of new more widespread symptoms. Get yourself some 2" or so foam for some sitting relief! Soft cushions are useless. Foam is more supportive that anything else. Don't give up singing! And go to your mother's for Christmas. Don't ALLOW the pain to stop you enjoying your life. Every minute of every day is precious (and you don't know how long more you will have your mother with you). Enjoy the time you have with your family. Go out with your friends when you can- arrange for walks or bowling or something where you can stand rather than coffees or movies. Ice and rest up before choir nights and take your foam cushion with you. I do, and I also stand. They know I have a 'back problem' and cant sit on hard chairs. No biggie. I hope you get some relief and help soon. keep your hopes up. you have 'friends' here.
Jos

[rea]

Hi Sam,
I'm sorry for your pain. I too was a teacher with enough sick days to go to Houston where they concurred with my self diagnosis and did my paperwork for early retirement. It was approved. I sent in articles about PN with my application, When I look back at all I went through, I don't see how I made it. With meds and basically living in the house, I do have lower levels of PN pain.
PLEASE be careful if you sit..avoid leaning to one side..It can cause more hip pelvis problems. If possible, I would make an appointment with one of the specialists asap. It took me 4 1/2 months for my appointment with Hibner. Of course, other things need to be ruled out that may cause pn like symptoms. Also, starting on medicine to help with the pain helped me. Gabapentin was a life saver for me.
Best wishes,
Rea

[Violet M]

Hi Sam,

Welcome. Would love to consider you as one of my friends.

After reading your post I was just thinking back to when I was having some similar feelings as you -- thinking I would never have any quality of life again. But I am back to sitting, exercising, and living a very normal life with no pain meds. So the answer is, yes, there is a very good chance that your situation can improve. Not saying it will be easy -- and you may have to travel to a specialist like most of us have. When you travel, you take extra pain medication or you try to travel at times when there might be vacant seats on the plane so that you can lie down.

Jami posted that OSHU is the place to go in Oregon. http://www.pudendalhope.info/forum/view ... 500#p18500

Most of us try to get an evaluation by a good physical therapist. You could try a pelvic floor PT who is trained in treating people with pudendal neuralgia or you could check with Jerry Hesch who is in our list of PT's to find out if he knows a good manual therapist in your area. If you can't find someone locally, if you decide to go see a PN specialist you can probably schedule an evaluation with a good PT in the same city as the PN specialist.

Not sure what type of MRI you had but you may get additional valuable info if you can get a 3T MRI of the pelvic area using Dr. Hollis Potter's protocol. My physician had me get an MRI of the lumbosacral plexus and lumbosacral areas as well. It can be very tricky determining whether your symptoms are stemming from sacral area pathology or peripheral pudendal nerve pathology. I wonder if a radiologist at OHSU would be willing to use Dr. Potter's protocol.

Keep your courage up and keep fighting because eventually you will find the treatments that work for you. It may take some trial and error -- and some time -- but most likely things will get better as you figure out what works for you.

Take care,

Violet

[sman787]

Thank you everyone!!

I am so lost in all of this..and not getting much help from the folks about me medically...but I am willing.

Will have lots of questions as this evolved.

For right now I know that any sitting and any bending causes immediate pain in crotch to ramp up to a 10..and then I do not want to live...so I need to really guard against these activites..if I can....living alone and with lots of stuff and animals..this is a challenge.

Thank you..thank you..thank you!!

[LottaNerve]

Hi Sam,
I responded to your private message but can see that you haven't "picked it up"
Do you know how to get to your private messages?
One of us would be happy to help you if that is the case!