Health Organization for Pudendal Education

I am trying to decide what to do. I don't have an "official" PN diagnosis, but I know I have a lot of musculoskeletal issues (SIJD, tight hamstrings, calf muscles, and even plantar fasciitis symptoms). I don't understand if these issues are causing my PN symptoms or if I have PNE which is causing these symptoms? I know I had SIJD (diagnosed by my PT) before I had sitting pain. I have a lot of sacral pain, pain at the ischial tuberosity/obterator internus area particularly on the left (which is the same side my SIJ is always out of alignment) as well as where the ischial connects to the hamstring. I haven't had really good PT, like by a PT who does connective tissue mobilization or is very "PN aware". I know some people on this forum haven't had good results with PT and don't think it will really "cure" anyone with PN, but I feel like I need to give it a try because surgery doesn't seem to help that many people either.

So here's my thinking... if I don't want PN blocks or surgery right now and I am going to have to travel (fly) to see a PN specialist then maybe I should just fly to a really good PT like Stephanie Pendergast? It's a ton of money, but so is flying to see a PN doc and if I do that I'm still going to have to fly to see a really good PT.

I know no one can tell me what to do, but I would appreciate people's advice. I have read a ton on here, but I can't seem to find people who have a lot of musculoskeletal issues having PNE surgery so I don't want to pursue that route only to have surgery and still have pain because I still have musculoskeletal problems.

Faith wrote:
So here's my thinking... if I don't want PN blocks or surgery right now and I am going to have to travel (fly) to see a PN specialist then maybe I should just fly to a really good PT like Stephanie Pendergast? It's a ton of money, but so is flying to see a PN doc and if I do that I'm still going to have to fly to see a really good PT.

Unfortunately when you have this condition there is no easy decision. There is no treatment which offers conclusive evidence that it is the right one to go for. As I am sure you will have noticed for me personally PT did not work.

You could possibly have a scan. The 3T with Dr Hollis Potter or the MRN with Dr Filler. It will give you a far better idea if you have a nerve entrapment. If your insurance will cover it Dr Potter will be the cheaper option. (edit : I have edited my post as I want to add that since I had an MRN I have learnt there is no real evidence for it. The only studies that are out for it are coming from Dr Filler. Dr Filler is the CEO for the company that holds the patent so there is a conflict of interest there. Every Dr I have seen does not hold the MRN in high regard and it is apparently not helpful for a diagnosis. I have to say I am now skeptical of both the 3T and the MRN although I have not had the 3T scan. I think the best thing to do is try PT for 6 months and then if it does not work move on to other treatments)

If you do have an entrapment then you know PT will not work.

Thanks for your input Charlie. That's kind of what I have been thinking to get a scan. Is NY the only place to get a 3T MRI done? I have to fly all over the country to get all these separate things done. Maybe one day pts will be able to get all the possible treatments in one place.

Faith wrote:My advice would be to have a scan done. The 3T with Dr Hollis Potter or the MRN with Dr Filler. It will give you a far better idea if you have a nerve entrapment. If your insurance will cover it Dr Potter will be the cheaper option.

If you do have an entrapment then you know PT will not work.

I agree with CHARLIE. Don't know what happened here! I understand your concern about the nerve blocks. If there's anyway possible to go to NY, this may save you a lot of extra travelling and ineffective treatments.
Warm regards,
Karyn

If you have pelvic joint dysfunction only, soft tissue PT (trigger point work, excercise etc) will not work - it might help your symptoms but it won't fix you.
The non-invasive way to fix pelvic joint dysfunction is to have your pelvis manipulated properly by a PT Manual Therapist.
If you are considering bypassing this and seeking PN surgery, I actually don't know that the scan is worthwhile...you might want to jump straight into surgery. Reason being, you might not have a scar tissue entrapment and yet the surgery might still help you by dissecting the nerve out of WHATEVER is compressing it, even bone. I know Violet M had improvement with surgery although her PN was due to an unstable pelvis...not sure if any scar tissue entrapment was found...Violet??? if you see this help me out here??? PNEsuffer on the old board was another who had success with surgery although her pelvis was known to be misaligned and she never had it corrected. Again with her case, I don't know whether any scarring was found.
A surgery is to the best of my knowledge designed to free up the entire length of the nerve from whatever is compressing it. The exception would be Dr. Filler's surgeries, as he does not decompress the entire length of the nerve but does "spot surgeries" where the MRN images a problem.
The scan would only be useful if you are determined to seek non-invasive joint manipulation UNLESS scarring is found...OK now I am even confusing myself.
Personal opinion: Having the joint issue resolved 1st, then seeing if there is any pain left, is the way to go.
Reason: If you focus only on relieving the pudendal symptoms and not on fixing the SIJD, you are prone to other non-pudendal chronic conditions from the comtinuing SIJD. I got interstitial cystitis from SIJD long before PN...IBS is another possible result as are musculoskeletal pain syndromes.

HerMajesty,

I am just so confused because I've had my SI joint manipulated by two different PT's who do manual therapy/pelvic PT and also a physiatrist who treats pelvic pain. The manipulations may put be back in alignment for a while,but after time I am back out of alignment. Even when I am in alignment it still hurts to sit. So I'm guess this isn't my only problem? I don't know. I'm a nurse and I research all the time, but I still can't undestand this stuff!

Hi Faith,
Have you considered the possibility that your musculoskeletal issues may be secondary to your nerve pain?

Faith wrote:but I know I have a lot of musculoskeletal issues (SIJD, tight hamstrings, calf muscles, and even plantar fasciitis symptoms).

Can you recall what you felt FIRST? For me, there is no doubt what so ever that I had nerve pain first. The severe case of myofacial pain syndrome came on as a result of the unspeakable nerve pain. I believe the two are interchangeable, but only one is the root cause.
Also, I think I noticed in your signature (which I can't see while replying!) that you've been diagnosed with vulvodynia? Are you comfortable with that?
Warm regards,
Karyn

Faith wrote:HerMajesty,

I am just so confused because I've had my SI joint manipulated by two different PT's who do manual therapy/pelvic PT and also a physiatrist who treats pelvic pain. The manipulations may put be back in alignment for a while,but after time I am back out of alignment. Even when I am in alignment it still hurts to sit. So I'm guess this isn't my only problem? I don't know. I'm a nurse and I research all the time, but I still can't undestand this stuff!

There are a lot of poor manipulation techniques out there to be frank. You are not really "in alignment" if it only holds for awhile. I was in the same situation. I was told I was "out of alignment", corrected back "into alignment", and would fall right out again. So then I was told I was "hypermobile" and needed pelvic exercises to make my muscles hold my joints in place. What I had was a core pattern of HYPOmobility (stuck joints) nobody was finding, which caused the more obvious hypermobilities. How were you assessed? If the practitioner only looks at your posture and gait and feels your bony landmarks to see if they are in place or out of place, they will usually miss any core hypomobility. Hypomobility can only be found by Manual Therapy Spring Testing, and often only in a pose of full flexion (yoga child's pose) or full extension (lying on belly leaning up on elbows). If your pelvis had been assessed in standing, sitting, and lying in a neutral position, by checking for placement of bony landmarks and postural abnormalities, only your hypermobilities have been located and treated. There are even issues with many spring testing techniques...proof is in the result. If it keeps "falling out", unless you have a connective tissue disorder or a diagnosed ligament injury, it is not being properly tested and treated in the 1st place.

Karyn wrote:Hi Faith,
Have you considered the possibility that your musculoskeletal issues may be secondary to your nerve pain?
Can you recall what you felt FIRST? Also, I think I noticed in your signature (which I can't see while replying!) that you've been diagnosed with vulvodynia? Are you comfortable with that?

Good point Karyn. I did have vulovodynia during pregnancy (and it was not vestibulitis, but vulvar swelling and burning), but it got SO much better postpartum. I continued to have burning after intercourse when trying to resume postpartum intercourse. So I went to a pelvic floor Pt. My PT did manipulations for SIJD ( that I apparently had, but wasn't causing me any trouble at the time). Then I started having severe sacral burning and difficulty sitting. Since it has progressed to myofascial pain all over my body (including Headaches at times). Now I have pain around the ishcial tuberosity area and can't sit at all hardly. I kind of wonder if the Vulvodynia during pregnancy wasn't just the beginning of my PN symptoms and then the PT manipulations just "set it off" to a new level? But if so why did I have 6 months postpartum with virtually no "PN" pain? It's a mystery to be for sure!

Hi Faith,
I'm not a doctor but it sure does sound like your pregnancy set off the PN symptoms. At what point during the pregnancy did you start to have genital pain? It doesn't sound like PT was very helpful to you and may have exasperated your condition.

Faith wrote: kind of wonder if the Vulvodynia during pregnancy wasn't just the beginning of my PN symptoms and then the PT manipulations just "set it off" to a new level? But if so why did I have 6 months postpartum with virtually no "PN" pain?

But did you really have no PN pain for 6 months?

Faith wrote:I continued to have burning after intercourse when trying to resume postpartum intercourse.

I think you're doing an excellent job of putting the pieces of this puzzle together, Faith! You're probably tired of hearing it, but that 3T MRI in NYC would possibly solve any mystery that remains to be solved.
Warm regards,
Karyn