@bkruppa I'm sorry to hear about there being so much pain. Yes, nerves can promote swelling. They can also affect vascular supply to areas, too. However, swelling can also be from poor venous or poor lymphatic return (and even that can be affected by nerves or for other reasons).

It is quite possible that your wife's pain is actually generated by the areas above the pain as "referred pain" (and tension) can travel far. One thing to consider is self massage with a Rollga roller (there is both a Pro and a soft Rollga model). These are curved foam rollers (rather than flat ones) and are a little easier to work with than rolling on massage balls in case you think some of the pain is from myofascial (muscular) tension compressing the nerve. These work well all over the body including legs, glutes, upper back, etc. They helped me get rid of tight IT bands and other areas of tightness I had in my legs and glutes. They are sold on Amazon and there are instructional videos on the web (youtube; you just don't roll on the lower back as that can trigger spasms). That way you can do self massage regularly rather than relying on massage therapists. You can vary how much pressure there is if you use these - so massage can be gentle or aggressive and you can also dwell on an area of tension to get rid of "trigger points". One thing too - the therapist I'm working with for the injury massage I get (described in my prior posts) mentioned his opinion after 28 years - if pain changes with time it probably is not structural (i.e. not bones and ligaments). For instance, my lower back pain comes and goes - but since I started doing TRX suspension core workouts and certain stretches I haven't had a back ache since Christmas. Which leads me to think my back pain is muscular. I'm still trying to get rid of some sitting pain - that causes tension near the tuberosities for me. Ultimately, a pinched nerve somewhere (somewhere in the lumbosacral region) is probably causing that. Also, stretching and whatever movement that is tolerated sometimes helps (walking, recumbent bike, ellipticals, etc., if able). Good luck. If massage helps, I would recommend the Rollga.

Go get a MRI with contrast to your pelvic area as you might have Arachnoititis cause by injections or surgery. Look up this disease and get help with doctor Forest Tennant on Google.

@bkruppa

I'm sorry to hear about your wife's pain. It is very common for Tarlov cysts symptoms to come & go and for the pain level to go up and down. Dr. Feigenbaum in Dallas, TX told me this. I also have the pudendal nerve pain like your wife. I've been having a bunch of nerve blocks done in the hips, sciatic, pudendal, the muscles that go across your back from hip to hip, etc. The other day I came across http://www.arachnoiditishope.com and am now questioning whether I should even have any more nerve blocks. Since Tarlov cysts and arachnoiditis go hand in hand (I didn't know that) it seems as though the nerve blocks will help momentarily but will most likely make the arachnoiditis worse. Since it's something you will have for the rest of your life and is a progressive disease I think I'm going to choose not to have any more nerve blocks. The site for arachnoiditis was extremely informative and helpful. I urge anyone with Tarlov cysts to do some reading on that site. My husband also found a couple Facebook groups: Tarlov Cyst Society and Arachnoiditis Society for Awareness and Prevention. Hopefully this helps you out. Hoping for a low level pain day for everyone! Take care!