cause of non-entrapment pn

[April]

Hi all:

I guess I'm confused about the cause of non-entrapment PN. According to the description in the FAQs (second question), inflammation is the cause of non-entrapment pn. This is also what my pn doctor said. But, if it is simply inflammation, why does it take so long to heal when a patient discontinues the activities that created the inflammation? Is it just that nerves take longer to heal? I'm also wondering why powerful anti-inflammatories (e.g., ketorolac) aren't typically prescribed?

Many thanks,
April

[Dusty_in_Hope]

Like April, I'd be interested to knowing about the inflammatory aspect - why indeed does it seem that anti-inflammatories are not usually prescribed in cases of non-entrapment pn when it is a possible cause?

April: I haven't had much luck with herbal and other alternative/complementary medicines and treatments for any of my other numerous ailments (and it's only early days with my pn-like pain) but I guess if you have any trouble getting anti-inflammatories prescribed to you (and there's a possible chance that anti-inflammatories might help with non-entrapment pn) there are things like turmeric that are supposed to be anti-inflammatory and also the possibility of following a so called 'anti-inflammatory diet'....What I did have some success with about 10 years ago was following a diet that was low in oxalic acid (which is found in beetroot, rhubarb, peppers etc) as at that time I had vulva pain (not as severe though as I have at present) and eventually worked out that my almost vegan diet (which also included a lot of phytoestrogens such as soya) had been causing, or was at least a good part of, the problem....Certainly, my pain and discomfort improved a hell of a lot when I changed my diet accordingly. I've recently been following a weight-reduction diet plan, for more than a year now, which has seen my diet increase in veggies which contain oxalate - but I still avoid soya - so I live in hope that reducing the oxalates in my diet again might help with my pn-like pain (although this time my vulva pain feels more severe and somewhat different, e.g. I don't recall my pain being triggered with sitting, although I remember it did get worse with sitting.)

Apologies if the above is of no interest to you - but I thought I'd mention my experience, just in case.

In addition to wondering about inflammation, I have also been wondering what can be done - if anything - when a pudendal nerve has been stretched, to include whether that too could ever eventually improve by itself pain-wise. (In my case I think a worsening prolapse, a rectocele, may have stretched the nerve and I wonder whether a stretched nerve usually involves entrapment anyway - which might only be correctable with surgery.)

Thanks in advance for any replies.

Dusty

[stephanies]

I have had both steroids and other prescription anti-inflammatory medications over the years (Etodolac is one I remember) and none have helped with PN pain.

Sincerely,
Stephanies

[Dusty_in_Hope]

Very interesting to know of your experience with steroids and anti-inflammatories - thanks Stephanies.

I believe steroids can be bad for tissues anyway - leastways they can cause thinning skin, muscle weakness and muscle pain with long-term use (am referring to steroids taken orally here, such as prednisone; I don't have much knowledge about steroid injections, except that I had one in my coccyx region for coccydynia (caused by doing PT exercises for my fibromyalgia) over 18 years ago and it did absolutely nothing to help with that).

Best wishes
Dusty

[April]

Dusty,

Many thanks for the alternative medicine ideas. I hadn’t thought about adjusting my diet, but it does sound like it’s worth a try. I will have to read up a bit on this.

I haven’t asked to be prescribed anti-inflammatories for my pn, but it does seem like a logical option. But, as you note, long-term use of steroids can be harmful. Even long-term use of ibuprofen can be harmful. When I mentioned to Dr. Shobeiri that I had been taking a lot of ibuprofen, he warned me that my heavy use of it could damage my kidneys. So, I am not taking that anymore. I am not sure it was helping that much anyway. But, I was prescribed an oral steroid (along with two different antibiotics) a few months ago by my obgyn, and I do think that helped a bit temporarily (at first, I thought it was the antibiotics that helped, but after all my tests came back negative, I realized it was the steroid that helped). But that is not a long-term solution. Right now I suspect that reducing my movement may be the most effective way to try to reduce the inflammation. I definitely do not exercise, but I also avoid unnecessary walking—at least for now.

Stephanies,

That is interesting. I do wonder, then, if non-entrapment pn is caused solely by inflammation. Or, if it is, perhaps our leg movements and sitting make it difficult for our bodies to reduce the inflammation. I plan to ask Dr. Shobeiri more about this next time I see him.

Many thanks,
April

[Violet M]

April, the antibiotics may have helped too because they do have anti-inflammatory properties.

Just brainstorming but maybe the inflammation doesn't go away when you quit an activity because whatever caused it in the first place hasn't been resolved, or there may be more than one thing contributing to it. Maybe the activity wasn't the only culprit. And, as we all know, nerves heal very slowly.

Violet

[Dusty_in_Hope]

April,

You might find these websites helpful re the low oxalate diet http://lowoxalateinfo.com/who-benefits- ... late-diet/ (perhaps see under point 1 before exploring the rest of the website) and http://thevpfoundation.org/index.htm

I too find that if I don't walk much the pn is less intense. However, if I don't walk my fibromyalgia is more likely to cause me stiffness and muscle spasms; I find everything's such a difficult balancing act - like a lot of things in life I guess. I'm avoiding sitting as much as possible though as for me that's bad for all of my medical conditions; I'm only truly comfortable pn-wise when I'm lying flat in bed on my memory foam mattress

If you decide to alter your diet, I do hope it will help.

Best wishes,

Dusty

[ezer]

Dusty,
Do you feel that your fibromyalgia is unrelated to your pelvic pain?

[Dusty_in_Hope]

Hi Ezer,

A bit of a coincidence: I was only just now reading some of your past postings (about the mind-body connection) and then I saw that you'd posted me a message.

Do you feel that your fibromyalgia is unrelated to your pelvic pain?

Confusing the issue is that I have a rectocele which has recently suddenly got bigger, so that's structural...But that said, yes, I expect that my fibromyalgia is involved; in fact I hope it's the culprit, rather than a trapped nerve.

In reading about the technique that you use, i.e. feeling negative emotions associated with upsetting things (rather than thinking about those upsetting things) so that a physical release can occur and you can lose the physical pain caused, I have a question: How does it work when you are stuck between a rock and hard place, i.e. when something keeps upsetting you and the alternatives would be equally as upsetting? - Any physical release wouldn't be long lasting and so there would be little opportunity for the pain to go away permanently.

Thanks,

Dusty

[April]

Violet: I had no idea that antibiotics had anti-inflammatory properties. So, those probably helped as well.

I have been wondering if there is something else going on that is maintaining the inflammation. In May, when my obgyn concluded my problems were related to my bad back, I requested a spine MRI (last one was 2 years ago). It included lumbar, sacrum, and coccyx, and (except for my bulges at L3-4, L4-5, and L5-S1), it came out fine. I also recently had an arthrogram of my left hip (minor pain and weakness that I had ignored but checked out when this problem emerged), and that also came out okay except for arthritis. I brought these to my Dr. Shobeiri appointment and also asked him if specialized MRIs would be useful, but he didn’t think so. But I am going to keep asking questions about the cause. I broke my ilium in a car accident 30 years ago, but Shobeiri also did not think that was relevant since the pain emerged so recently. In any event, thanks for your thoughts. I do think I’ve turned a corner in the past few days. My pain is much lower, and yesterday I did not ice at all. So the amitriptyline (and my total inactivity) seem to be working.

Dusty: Many thanks for the links. The vp website is wonderful. It’s so comforting to know we’re not alone. And I know exactly what you mean—lying flat is the best position for me as well. It sounds like you do have a very difficult balancing act to deal with.

April