Health Organization for Pudendal Education

I don't think you have to go to Canada to get shockwave therapy, although according to my chiro that is sort of where it was developed and it is very popular there. I live in MI which is very close to Canada and that is where my chiro first learned about it. All I can say is, thank God my chiro is a woman and she actually cares. I would not want a male chiro treating me with the shockwave or laser where she does. If you look up some chiro's in your area, you may find some that offer shockwave treatment.

Yes, I might look into that - the only thing is - wouldn't you be hesitant to go to someone to work in this area that doesn't have the experience? I suppose if I had an existing relationship with a current doctor that did it (that I trusted), I might - but.....

Actually, some chiro's are familiar with PN. In fact, my chiro is the person that explained to me where the pudendal nerve was (and actually said the word pudendal not just "nerve") and told me that nerve pain can feel like a burning type of pain. Before that I had no idea WHY my crotch was burning!

Scaredgal,
Chronic pain makes you feel desperate and depressed. If you can cut into the pain, it will make you feel better in general. Some people use slow release morphine. You have to try everything and see what works for you. You have to be your own doctor with this problem which is a really exhausting job on top of your regular life. We all know how that is. Don't give up hope and try to stay positive. Don't let this thing beat you down. We are all in this together. Still getting my medical records together for Hibner so next year for my appt. is probably optimistic.
Best Wishes,
Don

Scaredgal, I can understand why you would not want to take any SSRI's or SNRI's. And I completely understand your desperation -- I used to belong to the psas support group and I contemplated ending it all because I could not see living that way the rest of my life. It was so bad I could not think clearly. Thankfully I decided to hang in there and now life is peachy.

So what do you think of this idea? It seems that before ending it all it would make sense to at least try all of your options first. At the time I was in the psas support group there were people who said that going off ssri's gave them psas but there were other women who fest their psas was the result of nerve damage and ssri's helped them. If psas is making you suicidal do you think it might be better to at least try the ssri to see if it helps than to end it all without ever knowing? Sure, it might not work but if you already have psas what is the likelihood that taking an ssri will make it worse? And I know it's tough to go off -- I took a year going off lexapro and even with that there were challenging moments but it certainly wasn't as bad as psas was! It could buy you some time while the docs figure out how to deal with a clitoral or rectal nerve entrapment. And there is this to consider -- the 3T MRI from Dr. Potter is not proven to be 100% accurate.

I'm not trying to twist your arm into doing anything -- just brainstorming/debating this in my head and hoping you will hang in there and please try all of your options.

Scaredgal,

I'm with the others -- grinning and bearing it isn't always the best option since depression and desperation can often make the pain feel worse. Here's an option you could try if you are hesitant about starting on SSRI's. Try taking a little benzodiazepene (like half a valium or clonazapam pill) one night and see how your pain is the next day. I predict that your pain level will go down considerably. This is because benzos have an anti-anxiety effect which mutes the pain signals going to the brain. Now, there are some SSRIs (like sertraline, trade name Zoloft) which have this same effect on pain. SSRIs are, however, the better medication to take in the longer term because they are not as addictive as benzos. (Benzos are not addictive if managed properly.)

I speak from experience and not as a medical professional (which I am not), so please take my "words of wisdom" with a grain of salt.

Scaredgal, we are all with you on this journey to wellness. You are not alone and we will never let you down. As you know, if you feel desperate, just post and one of us will respond very soon. You are incredibly lucky to have a supportive spouse and you owe it to him not to give up. You two will grow old together and one day you will be laughing and running on a sandy beach together and your pain will be a distant memory. This is the vision that sustains us all.

Love and hugs from Lernica

scaredgal,
I don't know what brought me to this page, but I'm glad I'm here, and there are recent posts. I am having struggling with the same despair as you are. I also am a Christian, so I won't consider suicide, because of fear of the afterlife. I almost laughed, in spite of my pain, because you said hell would be one continuous PNE day after another.

I had a 3 T MRI in Denver. The radiologist obtained Dr. Potter's procedure, so I know it was done right. The report said the pudendal nerve was normal. So how can I be in so much pain? Should I ask Dr. Potter to read the films? Insurance wouldn't conver it, so there would be a charge of around $300. There was someone who posted that she was having severe PN pain after a laminectomy. That is when mine started, and that was two years ago. I have read that fusing the spine to the sacrum can cause PN but how. I also have SI joint dysfunction, so I had the SI joint fused. Now I am worse. My vagina and perineum are on fire. Can someone please help me out there? Why did having my spine fused lead to this hell? I am now fused from T9-S1. I would like to have the hardware removed. But what if that doesn't help? I am so scared, I can't put it into words. It's almost like the fusion of the spine and SI joint have tightened things in the pelvis, and I can't do anything about it. I can't imagine living the rest of my life like this. I am on the sofa constantly, because of the pain when sitting or standing.

Violet, as a nurse, I should know what you are talking about when you say SSRI's and whatever that other abbreviation is, but I don't know what you are talking about. Thanks for any comments.

paulette wrote:I had a 3 T MRI in Denver. The radiologist obtained Dr. Potter's procedure, so I know it was done right. The report said the pudendal nerve was normal. So how can I be in so much pain? Should I ask Dr. Potter to read the films? Violet, as a nurse, I should know what you are talking about when you say SSRI's and whatever that other abbreviation is, but I don't know what you are talking about. Thanks for any comments.

I don't know for sure because I have never met Dr. Potter or had an MRI read by her, but I have read here on the forums that she uses a special kind of software that other radiologists don't have. So if she looked at your films with her software she may see something different. Someone said that she doesn't read outside films though so you'd have to check on sending it to her. $300 sounds like a lot of money, but if you've had the scan done and she would read it it you might feel better if she read it then you would known her opinion. I am sure though that even she can't see everyone's "entrapement" with her software. Some people will never know until they just try surgery probably. I don't know your symptoms, but I think any pelvic surgery can lead to PN due to the risk of scar tissue along the area of the pudendal nerve.

An SSRI is a drug class (selective serotonin reuptake inhibitor) so drugs like Lexapro and Prozac for example. And SNRI stands for serotonin norepinephreine reuptake inhibitor such as Cymbalta and Effexor.

I am so sorry you have this horrible suffering Paulette. We are here for you. And more importantly God is in control and He loves you.

Thank you for the encouragement, Faith. It was so discouraging to hear that Dr. Potter has her own software. Does that necessarily mean that a regular 3 T MRI can't pick up on nerve entrapment? I am having the CD and report sent to Dr. Shobeiri. I will also call Dr. Potter's office tomorrow. I just don't know how I could tolerate a trip to New York. I have read a lot about everyone's symtoms, but it seems like I have more debilitating symptoms than most. I can't even bend over to pick up a magazine off a chair without feeling a painful pulling sensation. I can't walk without a walker anymore, and I spend most of my time on the sofa. Then there's the fact that I had the Si fused and the symptoms are worse. Maybe Dr. Shobeiri will have some advice. Do you have any? Thanks so much, paulette

I have another question. If the the pudendal nerve pain is due to being stretched by the SI joint, will the 3 T MRI pick it up???