Health Organization for Pudendal Education

Hello All,

My PN has been extremely severe for the past 4 1/2 years. I have an even longer history with the condition dating back to 2004. I had two PN surgeries in 2006 and 2007, Botox injections, years and years of PT with both local therapists and out of town experts, plus cryo two years ago. I have seen PN specialists Drs. Bautrant, Filler, Goldstein, Jordan, Marvel, Hibner, Shobeiri, and Conway plus a few others I am likely leaving out. In the past six months I have learned that pudendal nerve pain, especially pain not from direct surgical insult to the nerve or childbirth, does not always come from along the course of the nerve distal to the spine. It can come from Tarlov Cysts (which, I believe many more of us have than we think — I did not know I had them until last fall after years of imaging. The only way I found out was directly asking the radiologist of my latest imaging and he sent me images with the cysts labeled, but did not amend the report), tethered spinal cord, bulging discs, etc. There are many spinal pathologies that should be ruled in or out for people with PN before treatments like entrapment surgery or cryo should be considered, in my opinion. If something is found on a sacral or lumbar MRI that is noteworthy, in my experience, it can be difficult to get doctors (even experts in their fields) to agree on what they see and a best course of action. Nerve root blocks and other procedures can help with diagnostics, however I believe spine surgery is a risk and not one I have decided to take at this time. The results for many procedures seem all over the board — some better, some worse, some with new conditions or complications as a result. I do wish I had been told about the possibility that the pain was coming from the spine years ago, so I could have made more informed decisions. I now know that I have several “tiny” Tarlov Cysts, one doctor says they are not causing my pain, one says maybe, try a nerve root block. First doctor said maybe tethered cord, but neurologically, my symptoms don’t match up with that. I am a bit of an enigma (a doctor recently used this word to describe my PN history) and I believe that the potential involvement of the spine as a cause of PN pain will become more and more well known as the months and years go on and more doctors are integrating looking at the spine into their patient work up. There are pelvic pain doctors and neurosurgeons working on this now.
Hopefully, more of us will find effective treatments as the different causes of this condition are more closely studied.

Stephanies,

Thank so much for this update. I'm so sorry that you are just now finding this out. How incredibly frustrating. Where on the spine are the cysts? Was it a neurologist, a pn doctor, or you who drew the connection to the cysts?

I have been following the discussion on fb about spinal surgeries for pn (e.g., one for a bulge at L4-L5), and I have been puzzled because I thought S2 was the highest the pudendal nerve went. The development is relevant to me, because I have a very bad back (2013 MRI described my stenosis at L4-L5 as "very severe" though a later MRI (when my symptoms had declined) described it as "mild"). (I think the bad back was caused by a high impact car accident decades ago). But, pudendal doctors always dismiss the relevance of this because the lowest bulge is at L5-S1. In addition, I just reviewed my pudendal-focused MRI and see that it reports that I have "tiny bilateral L5-S1 Tarlov cysts." Perhaps I will consult a neurologist. Do you know which doctors are starting understand these connections?

Thanks,
April

Hi April,

I had actually been reading about Tarlov Cysts last fall and had recently spoken to a woman with PGAD who asked me if I had Tarlov Cysts. After I said no, I decided that since I had previously corresponded by email with the radiologist who read my (at the time) most recent imaging, I would email him and ask. He emailed me back and included images of the cysts. I have several tiny ones, the largest is at S2 on my left side where 95% of my pain is. I think doctors are beginning to associate pain from sacral nerves with issues from the lumbar area as well. I have a slight bulge at L5/S1 also. I think most of us over 40 probably do. There are doctors who will block the areas of concern at the spine (like bathe the cyst with numbing medicine) and try to determine the source of your pain. I have consulted with a couple doctors on the east coast in person and some others via phone. If you want you can PM me about where you live and I can see if I have any knowledge of any doctors near you. I don’t know if Tarlov Cysts are playing a role in my pudendal nerve pain, but it is something to consider.

Stephanies

That is very helpful. Yes, I will pm you and give you my location. Thank you so much.

April

I found this old information written by Dr. Bautrant where he indicates that an intraspinal issue can make the PN over sensitive to compression distal to the spine. I don’t think he does the same kind of testing he is writing about here any longer, but I think his ideas are interesting.

http://www.perineology.com/files/e2b.htm

Thank you, Stephanies!!
April

Dr. Bautrant discusses this in the article he published in 2003. https://www.ncbi.nlm.nih.gov/pubmed/15067894
The English translation is at the following link: http://www.pudendalhope.info/sites/defa ... utrant.pdf
In the article he refers to patients with a radiculo-medullary etiology who were rejected for his research study.

Following is the definition of radiculo-medullary https://medical-dictionary.thefreedicti ... omedullary

"affecting the nerve roots and spinal cord"

I was told by an orthopedic surgeon that some people can have horrible-looking MRI's who don't exhibit symptoms while other people with very normal MRI's can have severe symptoms, so sometimes it can be difficult to draw any rational conclusions from an MRI. I think you have to go by more than just the MRI. The diagnosis has to take into consideration where all of the areas of pain are as well as history and clinical exam. Here is an interesting article on the topic. https://www.aafp.org/afp/1999/0201/p575.html

Unfortunately this can all be very confusing for the patient as you have experienced, Stephanie. I'm sorry you have been through so much for so long. I wish someone could figure out a solution for you.

Violet

Thank you for the kind words, Violet.

So glad you brought this up stephanies.

I have been walking down this path for about a year now, after I found I had serious problems with my spine at a Dr's appointment which was meant for problems I was having with my hip. They did an x-ray and saw some bad stuff in my spine and told me to see a neurologist or ortho-surgeon.

I had spondylolisthesis at L2/L3 and multiple stenosis points in the lumbar region.
They don't seem to worry much about the stenosis, at least in my case. Perhaps mine were not bad.

I went to a spine physiatrist first. I informed him of my PN.
He was of the opinion that the spondy could be causing my PN. His thoughts were that the 'root' of the pudendal nerve is starting in the L2/L3 region, and it seemed reasonable to him that a 'pinching' in this region due to the spondy could cause referred pain in the testicle.
He did some steroid injections in that area but I had no improvement whatsoever - so I thought his theory was not valid.

Meanwhile, I was losing feeling and control of my legs, so I had to do something about this spondy.
Saw several ortho's and one neuro-surgeon. They were split evenly on whether the spondy could be causing my PN symptoms. At this point, I didn't really care. This spondy was making my life miserable so I needed to do the fusion at L2/L3.

I am about 2 1/2 months post fusion at L2/L3.
I was going to wait until I knew for sure whether it was making a difference with my PN (it's made a world of difference in my ability to walk), but your post is forcing me to come out now, even though I'm hesitant because I do not know for sure whether it is the fusion which is helping. I changed other things.

I have managed to cut my pain meds in half since the fusion. But I also need to say that I started taking rather large doses of tercumin.
I know for sure that it makes a difference because if I miss even for just one day, I definitely notice an increase in pain. I wish I knew about this spice earlier.
I don't know if the 50% decrease in pain is purely due to tercumin though. I wish I could say, but I just can't.
I tried doubling the tercumin amount but got diarrhea.

If I continue to get better, I will begin to think that the fusion is the reason.
From posts here post PN surgery, I'm expecting 1 to 2 years before I will know for sure.

One other thing I want to mention.
The pain clinic at Stanford hired a new doctor whose specialty is pelvic pain.
I found a seminar on youtube which she gave. She mentioned that the genitofemoral nerve can be damaged during an appendectomy and can cause pelvic pain issues. I had an appendectomy a long time ago and wondered if it could be causing my PN. When the pain is really bad it follows the path of the genitofemoral nerve.

https://www.healthline.com/human-body-m ... al-nerve#1

I have complained many times to my doctors of this pain 'right here' (it is on the genitofemoral path, and like I say, when the pain is really bad it seems to follow the path of this nerve to the 'T'). They always think I have a hernia. I've been checked so many times for a hernia that I don't even mention that particular pain anymore.

Unfortunately, I do not have a link. I'm confident it wouldn't take much to find it - something like 'pelvic pain' and Stanford might bring it up. Took my own advice and did a search which brought this up.

https://med.stanford.edu/pain/about-chr ... cpain.html

I'm quite sure this is the one (it sure looks like her). There's more in there than just this genitofemoral nerve... I think it's worth a view.
I am going back to the Stanford pain clinic in July. Unfortunately, they did not assign me this particular doctor. I'm hoping to be referred over to her after the initial appointment.

Anyway, just my 2 cents - have no idea whether it will pan out. Since the steroid injections didn't help, I'm doubtful.

I will post in 'success stories' if this fusion fixes my PN - probably won't be for a long time though!

Skip

Thank you for all this information, Skip. It's great to hear that the fusion was such a success, both for your back and, perhaps, for your pn. The connection between pn and the lumbar back is confusing. I talked with my pain doctor about this possibility last week, and he did not think there could be a connection. But, clearly some doctors are finding connections. Thank you for the tip on the tercumin. That sounds like a combination of turmeric and cumin, or is that the same thing as turmeric? My PT suggested turmeric (which has curcumin in it), so I bought some but I haven't used it that much. Does yours come in pill form, or do you put it on food? How much do you take a day?

April