Please help!

[trishj46]

I have pn and spinal cord for nine years. Nothing has helped. My doctor said there is no more she can helpwith pain. Right now I have suchn pressure in rectal area I feel like vI am being strangled---If I walkm it throws me off balance and fall. THe pressure is pulling on my lower back----I have neurogenic bowelm& bladder but never felt this to this degree I lay on butt with ice for 9 years. Right now I feel so tight andvstrangling from rectal and lower back. I have heat on lower back. Has anyone ever had this?? The pn nerve is rectally. I have been and done everything over 9 years. On percocet, my doctorv said theyb are useless for nerve pain----that ibuprophen can be just as effective--- I have beenn eating ibuprophen---nothing. Last night I thought Inwas going to die----wish I had! Its not so much pain right now----its such pressure---what if it does not stop? Will never go to ER----Becomingb terrified! Excuse my spelling. Thanks!

[kalecolbe12]

So you have tried pelvic pt and nerve meds like gabapentin also?

[trishj46 in reply to kalecolbe12]

Yes, thanks

[Carlettejaque]

My daughter has Lupus which causes a great deal of pan. She also has a collapsed disc in her spine which is also very painful. She discovered that taking Lions Mane Mushroom powder takes away most of her pain. It comes as a powder you can add to food but she puts it into capsules. You can get it set it on line it's not an illegal substance it's a medicinal supplement. My daughter gives it to her old and ailing dog who was on deaths door but after taking it recovered almost miraculously. You might like to try it.

[kalecolbe12 in reply to Carlettejaque]

How did you find out about lion's mane mushroom powder and where do you get it?

[Carlettejaque in reply to kalecolbe12]

My son in law discovered it. He's a nurse.

You can get it on line from places like Amazon.

[Skye22]

My physio does Internal /external trigger point therapy which helps with spams and pelvic tightness, I have levator-ani syndrome.

In conjunction my consultant gives me botox injections into the pubirectalis muscles. Both treatments really help my symptoms and chronic pain.

[trishj46 in reply to Skye22]

Ihave never had----but wil check it out----hard to get anywhere with

spinal injury. thanks very much!

[kalecolbe12 in reply to Skye22]

I know I've spoken to you before but I was just wondering if you can remind me of how often you get the botox and how long does it last?

[Skye22 in reply to kalecolbe12]

I get botox roughly every 3mths. Initially there is a slight increase in discomfort but it settles after a couple of weeks.

I was due my injections just before covid self isolation but unfortunately it has been postponed. I have noticed a big increase in my pain and spasms which affects my bladder and Bowel, I now realise just how effective the botox was. So feeling a bit in limbo at the moment,

As with any new treatment you can have doubts but for me botox and physio have helped me manage and cope with symptoms.

Heres hoping we all get back to normal living soon. Stay safe keep well.

[susieqblue]

Have you tried a cream compounded? Mine has valium, gabapentin, ketamine, estrogen, lidocaine. Its a vaginal cream but Im sure you can use it in your rectum. Im so sorry you feel so bad. I am having endo surgery, pn injection, and hysterectomy if needed tomorrow. Please message me if you have any questions. Prayers, xoxo

[trishj46 in reply to susieqblue]

I am going to show thisv to my doctor-----I have some of this in suppository, but had bad reaction to ketamine suppository----maybe could tolerate in cream. thanks so very much@ Yes I also have had endo, pn injection, and partial hysterectomy. I will be praying for you!

You have your own problems, but extended yourself to me----HUGS!!!

[susieqblue in reply to trishj46]

They can mix up any kind of meds in this cream and it works. Let me know how it goes, I will be home recovering tomorrow and a few weeks.

[susieqblue in reply to susieqblue]

I have right side groin pain and right buttocks and nerve pain up and down my right leg really bad. He thinks its entrapped and will be looking during surgery. I am on my 3rd of 6 injections and they are helping me!

[trishj46 in reply to susieqblue]

I have same kind of nerve pain from PN----I will not get surgery.

I have had enough. Your cream suggestions sound hopeful!

My pn is so complicated with spinal cord injury--but I got the pn from the spinal cord surgery! Good Luckto you!

[susieqblue in reply to trishj46]

I hope it helps!! PN is very freaking painful and hard to treat! esp with spinal cord issues. Praying for you! xoxo

[trishj46 in reply to susieqblue]

sending prayers back! Thanks & Hugs!

[susieqblue in reply to trishj46]

I will post when I can. I am hoping between the endo surgery and hysterectomy I will get some relief and another injection being done. Those do help!! Hugs back and praying for your pain relief!! xoxo

[Konagirl60 in reply to susieqblue]

Where will you have surgery? I had successful surgery in Minnesota.

[susieqblue in reply to Konagirl60]

In Chattanooga Tn, Erlanger hospital. My obgyn is wonderful and knows the pn nerve well.

[Konagirl60 in reply to susieqblue]

Good luck. I only know of two experts in the US,

[kalecolbe12 in reply to susieqblue]

What kind of injections are you getting?

[susieqblue in reply to kalecolbe12]

Pudendal nerve.Nerve blocks. Thats what they call them and they are working better. I am feeling better, I just had endo surgery and hysterectomy

[Konagirl60 in reply to trishj46]

Compounded vagina suppositories containing 10mg Valium ( to calm spasms ) and 1% Lidocaine saved my life for 11 years.

You can also get Compounded rectal suppositories.

[susieqblue]

I am on oxycodone also and it works compared to hydrocodone. There are also long lasting pain meds your dr should try on you!

[trishj46 in reply to susieqblue]

Yes, I am on oxycodone----my doctor has tried many long acting pain meds but really does not feel opiods work after a certain point. I was on oxycontin long acting with oxycodone for break through when in rehab

for broken foot & hip, but was stopped when I came home. My insurance company and CDC would not allow it. It makes me so angry! I am in US

and thats the way it is! Thanks again----many prayers!

[Rxmom]

I had an fissure & hemmeroids. The CR surg fixed them in 2017 plus he did a LIS surg (cut into rectal lateral internal sphincter to decr pressure - but small cut so I didn’t get bowel incontinence). Might be worth investigation

My thoughts are with all - my Feb Abbott Neurostim placement has decreased pain intensity by about 40%, however I expect additional relief once I can get reprogrammed. The pattern is still there & pain still limits me but def improvement.

Peace

[trishj46 in reply to Rxmom]

I had something similar done with large fissure and surgery---went well.but no real relief with pn after. Thanks!

[Konagirl60]

I think you have true pudendal nerve entrapment. Is it on both sides or just one?

If the rear portion of your pudendal nerve and/ or part of your inferior rectal nerve is stuck between ‘juxtaposed’ overused sacrosphinous and Sacrotuberous ligaments these nerves can adhere to them and the surrounding fascia causing a true nerve compression injury.

I had this and only decompression surgery helped. It was done 3.5 years too late so I still have pain but 75% less then before. The intense burning pain was gone post op.

Your doctor is uneducated. Ibuprofen will do nothing for severe neuralgia. You need Hydrocodone/Fentanyl duragesic patch and Nortriptyline. Have you tried these yet?

[trishj46 in reply to Konagirl60]

It was not my doctor it was a link from cdc who is trying to get people off opiods----saying ibuprophen just as effective after opiods no longer works---the help is the same! I know I am entrapped, but too late. After spinal cord injury and pn, and age! I have been on all the drugs you mentioned, and oxycodone and tramadol now. oxycodone is better then hydrocodone. Thanks for you input! Appreciate it. Am going to try some different compounded meds, which I had in the best, many I am sensitive! Hugs!

[Konagirl60 in reply to trishj46]

I think a vaginal Compounded suppository is the way to go.... with no ketamine! Good luck. Let us know his you make out.

One last question? Did you have a tubal ligation with Hulka or Filshie clip? I did and both migrated. The one that ended up on my rectum caused my PNE. Get an X-ray. Doctors cover up mistakes.

[trishj46 in reply to Konagirl60]

No I did not have a tubal ligation with Hulka or Filshie clip. Yes I am going to be trying some vaginal or rectal compounded meds.

Thanks very much for your help! Keeping everyone in my prayers

and say one for me! I cannot tolerate ketamine. Hugs!

[AuntieH]

I am praying for you to get relief! 💗

[trishj46 in reply to AuntieH]

Thanks very much! Hugs!

[willemine]

Compassion i know your pain i had seizures like that i can t sit in my tailbone because of pn its devestating pain exhousting and you get desparate i got oxycodin from a painspecialist doctor. And i get ptns treatment for my bladder this also calms it down. I only funcionate for 3 till 4 hours a day the other hours i lay down. I hope sincire that your pn spinal cord calms down its so diffecult and hard to integrate this pain in your life and to cope i hope the pain will drop and you can cope !

[trishj46 in reply to willemine]

Thank you---I hope you get some relief!

God Bless! Hugs!