Pudendal/levator ani

[Susiebic]

I have suffered for ten years. I have had nerve entrapment surgery and tried many blocks, ablasion and PT. I have a medical background and researched CBD for pain. I now make my own suppositories, but you can purchase at a despensary if you have a medical marijuana card. I take a magnesium suppliment for constipation called mag 07. I am working with my doctor to find a solution to pelvic floor hypertonia, but she is not familiar with this problem. There are no side effects to CBD. I use a suppository every night. It has given me hope and a semblance of a normal life.

[D33P]

Hi Susi,what are your symptoms of Pudendal nerve ?

[Susiebic in reply to D33P]

Perineal pain, mostly left side, but can hurt from mid abdomen to mid thigh on both sides. Feels like a toothache in your pelvis.

[TovahS]

I have PNE too. I've been in chronic pain for over 4 years now. Considerng stem paste injections. Just learned of the Ainsworth Institute in NYC. They work with PNE. Anyone know about either the stem cell pate or Ainsworth Institute? Thanks. New here.

[anne77 in reply to TovahS]

I had the stem cell paste injections in Scottsdale, AZ and did not have any relief. That was over a year ago, so maybe they've refined it by now> Keep us posted

[STUBBORNGIRL7368 in reply to anne77]

Anne, can u plz tell me the namr of the doctor?

[anne77 in reply to STUBBORNGIRL7368]

I am sorry that I am just now seeing this message. I will private message you as I know this website does not allow naming specific doctors.

[Konagirl60]

Sorry to hear about your much too long suffering from this much too misunderstood and undertreated malady.

It sounds like your entrapment surgery did not help? Did it at all?

I had the surgery and it was a success. A secondary problem kept me from healing but finally that has been dealt with surgery.

I am praying I can heal although I am about to explore a ganglion Impar nerve block. Have you had one of those?

Glad Magnesium helps you. We use Cal-Mag as it is a synergistic complex and really calming.

When I had PNE, I was completely incontinent with stool. Tylenol #3 helped that a little but it did nothing for the nerve compression pain. Do you hav neuralgia? Where do you hurt the most?

What is hypertonic? Thanks.

[Susiebic in reply to Konagirl60]

My pelvic floor is hypertonic. If I keep my bowel clear that makes a big difference in pain level. My suppositories have made the most difference.

[rozamond]

Can u tell me more about the suppository I belong to med mariwana. Does it help u I am in excruciating pain regular mariwana does nothing for me except make me cough

[Pelviccrusader]

Have you found someone to relax your hypertonic pelvic floor? I know firsthand that pudendal nerve issues can be excruciating and difficult to treat; but the tight muscles of the pelvic floor are easily treated by a talented physical therapist.Within 4 to 6 sessions you should see tremendous relief if that is your problem. If you live anywhere near Maryland I can give you the name of someone that can fix you quickly

[Yacoub]

Happy for you that you have a little pain relief. We can get CBD here in Texas, but no exceptions for even a small amount of THC in it. Best of luck to you!

[Susiebic in reply to Yacoub]

Does Texas have medical marijuana?

[Yacoub]

Yes they do, but it is really only reserved for conditions such as epilepsy. Maybe someday when the government figures out how to tax ,like anything else, so they can get "their" cut. Probably at that point the price would skyrocket! Thanks for helping me think of a possible viable option. Of course there are ways to get it. But when your pain management Dr does an UA on you, you would be released from care. Just got my first shot, didn't document the type, did help a small amount. They said it was possible it may do nothing. Will get a second. Then Botox. At that point I'm out of options because I have done EVERYTHING else. Deep tissue massage has been helpful. Have to do once a week and is $125 not covered by Medicare. Blessed my ex is willing to pay for. Thanks again and prayers for all of us who suffer 🙏

[Konagirl60 in reply to Yacoub]

Botox is dangerous. Be careful. It may actually damage muscle in the long run. My surgeon said no way.

[Susiebic]

You are a male, correct? Can you talk to pain Dr? Suppositories even with THC are not addictive. The route does not give you a high. Are you sure your pudendal nerve is not trapped? I went to a gastro Dr and got that diagnosis of Levator Ani but my nerve was trapped. Did you have an impact injury? Are you a weight lifter or cyclist?

[Yacoub in reply to Susiebic]

No I am Rebecca a female. Wished I would have just used my real name to start with. Now I don't know how to change. No impact injury. They think it's stress related. As I could not have sex and my husband of 38yrs asked for a divorce. He was with me through 2 back surgeries, hip replacement, knee replacement, then a bacterial infection called Actinomycetes Israelii in my vagina for 12 months. I guess he could see no end in sight, couldn't travel, even ride in back seat of car to Dr appts. Apparently didn't think of in sickness an in health. 2 weeks after divorce was final, he went overseas and married his second cousin who he had known his whole life and I knew her since the 80's. Disgusting! Coward! This stress is when the Levator Ani started. He still supports me totally finically, does my shopping, takes me to Dr if I need him too. Very strange f'd up situation! Now after 3yrs I am taking care of myself, I have grown children and 3 grandchildren to think of. Sorry for the book!

[Susiebic in reply to Yacoub]

I use CBD supps rectally for Levator Ani and vaginally, just depends where the pain is.

[Konagirl60 in reply to Yacoub]

Shit....when PN and tight pelvic muscles likely do to chronic spasms ruin a marriage and break up a family....that is just awful!

Why all the surgeries? I feel so sad for you.

[Yacoub in reply to Konagirl60]

Degenerative Disc Disease. I'm usually a very strong woman, but he made me feel broken, betrayed..all those words. 3 yrs later still not "over" it. Don't know that I ever will be. He just went to Walmart for me, Sams, and brought food for the fridge to last me a while. As he is now in Sweden with her for a 12 day vacation. Next month going to Turkey and then to family in Jordan. Sorry soo off topic. Hard to realize I will never have another man in my life. I'm a young minded woman of 63. Bragging but no wrinkles (thanks dad). I'd rather have a dog!! Lol. Thanks for your compassion! It surely doesn't help with my stress level which causes me more pain. Determined to get rid of this pain! For me, my grown children and grandchildren!! That's where I will find my happiness!

[Susiebic in reply to Yacoub]

I can relate to the betrayal. I have been divorced as well. If you can, try a CBD suppository rectally for your levator ani. It does help with pain and relaxation. You will make it. Your family will help and grandchildren are the best.

[Yacoub in reply to Susiebic]

CBD is legal here without any percentage of THC. My homeopathic told me unfortunately the THC is the pain reliever. Do find some relief in sub-lingual CBD without it though. Thank you! Sorry you have also had the betrayal of divorce. Sick of the "God knows what he's doing" or whatever.. you know what they say. I do trust and believe in God. But I just pray, whatever lesson I'm supposed to learn from this, can you please show me soon?? And your so right, never knew you could love someone so much till my grandchildren. Have one here today that spent the night and is swimming now. Newest one will be 1yr in a few weeks, and my first girl! So much love around me! Thanks for your positive outlook.

[Susiebic in reply to Yacoub]

I do know there must be THC with CBD. The supposities work very well for levator ani.

[Yacoub in reply to Susiebic]

I wished I could get some. Unfortunately it is not legal in Texas.

Of course I could get, but then when pain management "pops" an UA on u they will dismiss u as a patient, then finding a new one would be impossible because the records that u tested positive for marijuana and that Dr wouldn't take u. Catch 22!! Thanks, maybe someday.

[Susiebic in reply to Yacoub]

A story I have heard too often.

[Konagirl60 in reply to Yacoub]

Great attitude. I’ve found that most but not all men, can’t handle a sickly or injured partner.

Enjoy your family and may you find relief somehow, somewhere. I feel for you deeply.

[Yacoub in reply to Konagirl60]

Thanks so much Konagirl60. And best wishes for you and your condition also. We all have to stick together!

[Hidden]

Hello, can someone explain more about nerve entrapment and if anyone has ever had surgery for this? I have pelvic pain but my pelvic floor muscles are fine. It is pain from the surgery, and it seems to be nerve related....

[Susiebic]

What surgery did you have?