Health Organization for Pudendal Education

This is so much like what I went through in the years while I continued to get worse while doing pain management techniques, physical therapy and other mumbo jumbo.

When I finally DID HAVE THE SURGERY, my nerve was STUCK to the sacrospinous ligament and nothing could have freed it other than cutting away that part of the ligament and the scar tissue which was binding it to the ligament.

No amount of relaxation therapy, physical therapy, acupuncture (or IC treatments, which I also have been through) could release the nerve -- just as it also could not set a broken arm or substitute for open heart surgery.

I used to be an advocate for alternative methods instead of surgery. Now I believe once you have been through the diagnostic testing by a PNE specialist such as nerve blocks or botox and you have given PT a fair trial (with a good PN therapist) --- all that is left is surgery. By the time I finally scheduled the surgery I was bedridden, losing function in my left leg, hobbling, unable to work, unable to sit at all, unable to drive, etc.

I also strongly advise researching the different types of surgery and the different surgeons before-hand. This is probably the MOST IMPORTANT DECISION of your life, so you want to make sure it is an informed one.

Hi there well I'll add opinion on this ,as I am getting my scar tissue broken up and it is working ,it is painful and i can only have it done once a week and i take supplements to help the treatment , NOW the therapist is on the Olympic team so he has good hand feeling of whats going on under the skin . I also went through so many physiotherapists it was a joke and a lot massage therapists . it took 4 years before i found a good therapist .As i said you need a professional who gets athletes back on track . May be someone who works on bike riders ? ,or works on professional sportspeople ,now they are not all perfect ,so all I'll say there is a lot of trial and error of therapists ,as each one had promised they could help me .So what i'm saying that there are therapists out there ,but are hard to find ,and it takes a lot of research .I would start with the massage therapists on the Olympic team ,on a professional sports team ,or a one who does bike riders etc and sieve out the one who is best for you .So google away and ask that's what i did ,and do a lot of research of anatomy so you are in the loop of what they are doing and working on ,There will be a lot spin/BS that therapists give .They all think they are good and they all want your money .

Hi Aussie-M!
Very interesting! I'm curious as to what type or the location of scar tissue that you're having broken up? Is the scar tissue being broken up actually encasing the nerve?
I can't even imagine how painful this must be. How many treatments are required?
Thanks very much for your post. It's always nice to get different perspectives and experiences!
Warm regards,
Karyn

I'm so curious as to how in the world these physiotherapists could break up the scar tissue? I mean look at LottaNerves case--- how else could a stuck nerve be freed from a ligament or when attached somewhere without surgery? Does this type of "scar breaking-up" (sorry couldn't think of a better way to call it) be done without actually a potential of damaging or even breaking the nerve in half??? Just curious... Honestly I'm clueless as to this kind of therapy.

Yes, I have to agree with you, AM. I'm intrigued! I don't understand how breaking up scar tissue that is encasing a nerve which is already compressed, couldn't cause further nerve injury?

Well i will try to explain to the best of my ability , well he follows the lines of the ligaments and muscles and works the insertions when he is breaking up the fibrous tissue and there is a bit of cross sectional massage to help break up the fibrous tissue and ends with following the lines again , as i said it is pain full but as different parts are worked on you notice the difference when they are worked on again they are not as sore , I have had my hamies worked on ,my adductors worked on ,the sacrotuberous ligament and ischial tuberosity ,the pubic ligament inguinal ligament ,just to name some of the areas. It felt that my pelvis had torsion occurring ,which there was , the object is to break up the fibrous tissue ,then even out the ligaments and mussels on both sides ,so both sides become balanced .
The physios were telling me to walk and build up my time but after about 20 min or so i would end up limping it felt like my pelvis was out of balance ,i kept on telling all the physios this but i was given a number of reasons ,eg that's as good as you will get .So this year i had tracked down a couple of massage therapists who were on the Olympic team , the first therapist tested my SIJ ,standing, sitting and laying down ,he said there was so much torsion in my sacrum ,no wonder there was so much pain occurring , so he called in the chiro he was surprised as well ,so they sent me for x-rays ,my coccyx was out by about 6mm ,when i had my MRI's and CT's done they did not include the coccyx and i had about 3 sets done by different doctors ,apparently if they don't ask for it they don't look at it or it's not included . That's why i say make shore the the coccyx is included in a MRI [ one good reason is that the sacrotuberous ligament can share part of the insertion with the coccyx thus pulling it tighter and compressing the pudendal nerve ] ,also your physio should be testing the SIJ standing ,sitting and laying down ,every physio i went to , didn't test , if they did they only did a standing test only .Now that I was diagnosed with some problems i was on the right path to start fixing my pelvis ,i found this therapist and the chiro was a bit expensive ,so i went to another clinic with another massage therapist who is also on the Olympic team who is doing all the work on me breaking up the fibrous tissue at a more affordable price .
How long will will take well as long as i'm getting progress i am happy ,he has to undo the damage done by walking with my pelvis in torsion ,and get to the original problem as well . I will say there are NO elbows used in the treatment .He said you should be able to feel where the problems are .
Both therapists said they go through so many physio's on the Olympic team ,because they don't learn how to feel the injury
Also i do some passive streatching between treatments and take supplements ,a lot are to help recover quicker and there is one enzyme I'm trying to help break up scar tissue called serrapeptase, the passive streatching helps the healing ligaments and muscles set right .

I've taken serrapeptase too.
To confirm that PT can improve scar tissue, had a chat with my husband who's a PT this evening, and again, yes he said, that's definitely true that PT can work out scar tissues and make them less problematic.
Of course if a nerve is truly entrapped in ligaments or the like, no PT can cure that. I'm sure in some cases, the PT if pushing directly on the nerves could aggravate the nerve, and in some cases surgery will need to access the scarring, but surgery is dangerous because it runs the risk of creating scar tissue again.
My C-section scar tissue is healed up quite nicely however due to self PT after the operation for one year. I am a believer in PT as the first step... don't give up on it people. But if it's not working, then you have to look into other options like surgery.

Yeah I do agree with you pianogal , and i do agree that a PT can make the situation worse ,this occured to me in 2007 when a physiotherapist vigorously jamed his elbow into my lower buttocks near the ischial tuberosity ,he made my pudendal nerve symptoms increase and made the pain so bad ,that the pain in my genitals was so bad i was on a large dosage of morphine and gabapentin ,and other pain killers and antidepressants ,so i was on some heavy meds ,the pain was so bad that suicide was a option .That's how bad a bad treatment can leave you .As i said I went through a lot of PT's to get relief ,in 2009 I got some relief so that gave me hope ,and now in 2010 i have found some good PT's which has improved my condition heaps ,so there is hope if you find the right PT ,as i said learn as much as you can ,advice that a neurologist gave me when he diagnosed my condition , at that time i did not take him seriously and trusted Doctors and physiotherapists and other therapists , I learnt the hard way to have control on your treatment by asking what they intend to do ,and predicted outcome etc ; and not get lost in the technical terminology .Keep asking questions all the time , it's your body , so you need some control of the situation .

So pianogal what is your thought or experience with the serrapeptase ,i can't give a clear prognoses of it because of all the other supplements I'm taking and the treatment , I think it does help .

This is so much like what I went through in the years while I continued to get worse while doing pain management techniques, physical therapy and other mumbo jumbo

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I have had a similar experience to Lotta Nerve.

I see what your saying Aussie-M about finding the right physical therapy. I went to the Wise-Anderson clinic and the physical therapy there was appalling. They seemed to have an obsession with trigger points. They also seemed to think that they could train someone to perform physical therapy on themselves in a single week. I was even told by David Wise that the pudendal nerve could not become entrapped!

Aussie-M , which physical therapist are you seeing that can break up scar tissue?

Are they removing scar tissue from the pudendal nerve itself?

Hi Aussie-M... along with you, I too was taking a lot of other stuff with the serrapeptase so I am unsure if it helped or not. I only used one bottle too. There must be studies about it somewhere.

Also, Steroid Injections can melt away scar tissue. I spoke with my dad who is has been a Nurse Practitioner (more like a doctor though as he's done about 5,000 minor surgeries in his lifetime). Anyway, he said he uses Steroid Injections all the time to break up scar tissue. The key is getting the right amount of steroid for the right size scarring, and having CT guidance.