When my brother first got this, he thought he had primarily a nerve-damage based injury. (It may very well be a nerve injury). But has since turned to stretching and relaxation for his greatest active relief.
My story and comments are all over this website.
My brother, who is a better writer, hung out on the pudendal neuropathy forums.
I recently found one of his posts that I think has the core of good advice that I followed, having seen it help him. Here's that post:
Note. I don't buy the pudendal surgery route of treatment. I just don't see the statitistics for its success. Pudendal injury might be a root cause, but surgery to move the nerve is not my advice. Neither me nor my brother took the surgery. We will be hanging out together at a river this weekend, largely pain free.What works/worked well for me
I am not a doctor, I am a sufferer. All comments in here are my personal opinion.
Anyway, I've had two bouts with this problem this last one having gone on approximately 2 years, and I'd like to share what works for me in coping with and reducing my pain. I've made a list of things that took a while to discover but helped me a great deal. My pain is largely gone again, with occasional pangs. I don't know if this list provides an answer for many, but hopefully it will at least help someone.
I've not had the surgery, and have not had a pudendal nerve block. (I had an unsucessful block of a nearby ischial nerve.) I can't comment on those options, so if you want to pursue them, use your own judgement. You may want to consider all of the following which I gathered up over the years as well.
1) Stop sitting for the time being. As long as how you are sitting hurts, its not a good idea.
2) Make a chair adapter. You can go to a medical supply store and buy a toilet seat raiser. Its a plastic thing designed for people who have trouble lifting themselves onto and off of a low toilet seat. You will likely want to reduce its height by cutting it with a saw of some kind. (A coping saw or hacksaw will do.) Cut the height so that your perineum is suspended off of the surface the adaptor is on. Remember to allow for puffy cushions that push up through the center of the adapter.
Also, consider putting padding on the top and using a dark colored pillow cushion so that you feel more comfortable with it in public.
For some reason, I found this more effective than just the foam pudendal cushions that are available on the market. However, a cushion on top of this type of seat was soft and pain relieving.
If you make one with the height cut low enough, you may fit under the steering wheel of a car. Don't do this if it makes driving awkward or you have too much pain to drive.
Don't use such a device for so long that your legs go numb. Use it in select bursts. Numbing out your legs will only make you more uncomfortable later.
3) Start stretching immediately. Any room you can create in your pelvis will help take pressure off of the nerve.
a) Lie on your back and put the soles of your feet together, with your legs on the floor. Pull your feet toward yourself. This stretches both the thighs and some of the iscial spine attached muscles and ligaments. Do this for 60 seconds at a time, several reps, 3 times a day.
b) Lie on your back and pull your knee toward you. Hold it there for 60 seconds. Do this individually with each leg. Repeat 10 times, 3 times per day.
c) Focus attention on your perineal floor muscle. Practice contracting it and releasing it. You do not have to contract hard, just enough to know you are doing it. Don't contract if it causes additional pain. With this one, I gaurantee you can release this muscle more than you are. If you have a chance to work with a Physical Therapist, they can use an electrical probe to help you see how much signal is being sent to the muscle. You can use the bio-feedback to learn to relax that muscle far more. Hint, this muscle has a fore and rear component, are you releasing both as much as possible?
4) A position that many have found helpful is to lie on the side with the knees bent. Seperation of the legs with a pillow is helpful if things are feeling swollen or sensative.
5) If you can, find a physical therapist who understands the anatomy of the pelvis. Ask your general practicioner to ask around for you. If you can, ask a urologist if they know any physical therapists. If you have to educate them around the theories of your particular condition, do it. If you can find somebody who already knows, all the better. Keep in mind that this condition is known under many names. If you can't find a therapist who works with pudendal neuropathy, try someone who has had success with Chronic Pelvic Pain Syndrome or even Chronic Prostatitis. In my opinon, they are probably all misdiagnoses of the same thing. Even if not, they at least are specialists in the pelvis, who will be able to help you relax and stretch muscles to create more room in your groin area.
5) See a pain clinician. A pinched or damaged nerve can take quite a long time to heal after the pressure is relieved. If you are doing the stretches and find that they help, you may be able to relieve the pressure from the nerve in that fashion. However, it still may take a year to let the nerve calm down and heal. I would encourage you to be honest and open with a pain clinician, Don't shy away from pain medication because you are afraid of addiction. Always use just the minimum you need and never step up the dose without consulting your pain clinician and you will be safe. Rush Limbaugh didn't take pain meds for back pain and get addicted. He took them to loose weight and that requires ever higher doses to suppress the apetite. If you work with a reputable pain clinician, you won't have any trouble walking off of the meds.
6) Neurontin and Trileptal work for some. They helped me somewhat during the initial phases of my flare ups. (I've had two. I may have more, but I know what to do and what not to do this time.) For others they don't offer as much relief. Bottom line, if they help use them.
7) If you have muscle cramps and twitches in the perineal area, consider Baclophen. It does help reduce there frequency and tightness.
8) If you have urethral sensitivity, decrease the amount of acidic and spicy food/drink you inbibe. Also be careful with alcohol intake (especially with the other medications you might be on, you probably shouldn't drink anyway). Any fluid passing through your urethra is passing through areas served by the pudendal nerve branches and those nerves are expecting signs of infection. They will treat any stimulus as a cause to scream bloody murder.
9) Relax. I know, easier said than done. The feedback cycle of pain involves the amygdala, which will continue to interpret the signals from the impinged nerves using worst case mode (chemically) until you reduce your amount of stress and lower your cortisol levels. Know this, when a nerve signals pain, the same chemical that it uses to signal the pain pathways causes an immune response that makes tissue swell. Also, stress causes the release of the same substance, which causes the tissue to swell, and the pain pathways to fire more easily. Furthermore, the stress caused by this causes the amygdylla in your brain to go into sensory overdrive, in preparation for a fight or flight scenario. You must work on breaking the cycle if swelling is to be reduced.
Question: Both my brother and I have high, but non-lupus ANA counts and patterns. Do you? Just curious.
10) If you are prescribed an anti-depressant, take it damnit!. The stress you are under would break anybody, and you need to be able to relax. If you get serotonin deprived, your brain won't be able to clear out the fright or flight state and you will stay there: anxious as hell, depressed, and having an overblown immune response to pain. Don't confuse the potential for depression with genuine sadness about your pain. Sadness is normal. Depression is the anti-coping state of your brain not being able to emotionally reset. Don't worry even if they gave you the anti-depressents because they think it is in your head. The anti-depressents help in the long term no-matter what they think. Take it damnit!
11) If you start to feel better, you may be able to sit on the edge of a chair, or with one butt-cheek on the chair. Turn a chair sideways and use the back rest to lean on while you hip-sit. Vary your position. You may also get no pain from sitting with your legs crossed at the knee. If you are a man and anybody gives you a hard time for sitting that way, tell them off and do it anyway.
Also, consider sitting for short periods indian-style, so long as it does not cause pain. For me, this often provided some pain relief as well.
12) Some people get relief from electrical stimulation of the area. If you have insurance, and it covers TENS (mine didn't), then consider a tens unit. Talk to a doctor of Physical Therapist about how to use it and follow their instructions.
13) I've never experienced the surgical treatments or had a direct pudendal nerve block. As such, I cannot comment on them. I did have a block of a
nearby nerve, which did not help.
Anyway, I have very little pain these days, and it comes primarily as pangs which come and go. Based on this, and from talking with a physical therapist who has also suffered in the past and treated many other people, I think that there is hope for reduction of your pain.
If any of you have questions, I can only answer about my and my brothers experiences. You can send me a private message or respond to this post and I will check this box a few times a week. If none of this works for you, please don't give up. You have my support and I (and my twin brother, and some of the Physical Therapists I worked with) know you are not faking it. Don't feel guilty, its not your fault. You aren't letting anyone down as long as you do the best you can, when you can. If people don't understand how hard it is, be happy for them, and don't take it personally.
