Anyone here with the same PN symptoms as myself?

[DavidS2]

Hello,

It would seem to be the case that PN can cause a wide range of different symptoms. In many articles it clearly states the "foreign object" in the rectum/anus as being a common symptom although most sufferers posts regarding their PN condition do not seem to cite this particular symptom. For me I have this feeling ,as if there is a tennis ball up there which is causing either a horrendous numbness and extreme discomfort, or aching pain with throbbing lower back pain plus discomfort in my penis. I am due to see Dr Greenslade in Bristol on 25th july, I am praying to finally get a positive diagnosis for PN or PNE so that I can finally get treatment and hopfully relief from this utterly life robbing syndrome. Although I wouldn't wish this on my worst enemy it would be very helpful to me if I knew I was not the only man in the world with this curse.This has totally isolated me, nobody seems to understand and It's made me feel like a complete, and very lonely freak.

I would be so grateful if someone could reassure me a little that I'm not.

Thank you.

[DavidS2]

Thank you, I appreciate you responding.

[juliansmom]

I'm not a man but I know how it feels to have your life stolen by pain. It is lonely and scary and confusing and hopeless at times. I lost my job and my sex life. I can't sit for more than a minute and I'm afraid to eat. All the pleasures of life gone overnight and that's how its been for seven horrible months. But one thing I can tell you for sure is your not alone and you absolutely can not give up seeking treatment cause its out there. Lisa

[DavidS2]

Hello Lisa,

Thank you for your support and encouragement. I am sorry to hear you are suffering so intently like myself but i will take heart from your words.

[catfish]

Hi David, just thought i would give you a few words of encouragement. im not a man but i had the feeling of a foreign object - ball/tampon - inside. i started with pn 2 years ago & felt frustrated & alone. This forum & the pudendal hope forum were able to help me & i had decompression of my pudendal nerves last year in france. im making excellent progress although it is subtle & slow. i work, play & generally have my life back. ive got a long way to go but im taking things slowly. I'm 40 years old & the things i used to do (crazy exercise fanatic) i cant but i can walk for miles & sit . im thankful & appreciative of life & for my family that held me together when i was broken ! keep focused & dont lose hope. caty

[DavidS2 in reply to catfish]

Hi Caty, thank you very much for your message. It's encouraging to know that a diagnosis of PN and surgery is working for you and that you're getting better. I've heard improvement after surgery takes a significant amount of time. Would you mind me asking how much time has passed since your surgery and if improvement is continuing?. I haven't had a diagnosis yet, I'm seeing Dr Greenslade in Bristol on 25th July. I am sure my symptoms are PN as I've had every other conceivable test that have all been negative. I've been told there's nothing wrong with me inspite of the fact that the symptoms have literally robbed me of my life. I only found out about PN a month ago and I've been ill for 35 yrs!!!. Think I gave up even trying to find an answer after 25 yrs. I wish I'd heard of PN earlier.

David

[Severepain in reply to catfish]

Hi, I had decompression surgery in Arizona by Dr. Hibner, but unfortunately by the time I was diagnosed seven years went by and my nerve was wrapped so tightly it permanently damaged it and the PNE had caused rectocele and cystocele that no Dr. In Zcanafa would repair saying it was due to the PNE and they no nothing about this nerve disease. The Wasser Pain Clinic who diagnosed me in Canada, shut their doors dismantling the clinic, bringing in a Dr. for one year to take us off all pain meds and left us. Where did you go as my left side has it to and my prolapse needs repai4 been waiting since 2017 in excruciating pain with no help. The prolapse were done in 2017 by new Dr. that just arrived from Brazil, who said he would repair one at a time to see how I do, the hospital lost me for three hours, I awoke in 2nd recovery vomiting lime green and hallucinating but hearing a far off voice calling my name. My husband said I was in terrible shape and Dr. said I saw him saying 100% out of pain, don’t remember that, but found out later was frozen with lidocaine. My husband expressed to me, that a nurse came in twelve times saying Dr. wants you to leave the hospital, husband refused in my condition and it finally stopped at 8pm as they finally gave me something to stop the vomiting with next nurse. I woke up with oxygen as I had stopped breathing. Found out they used something I never had before, which was fentanyl. I asked for chief of anesthesiology and he went over everything that happened in OR stated surgeon from Brazil had untwisted a bowel, did rectal repair, untwisted and lifted bladder, burned off hunner ulcers inside bladder wall and completed hysterectomy as it was easier for him to operate. No Dr. I have spoken to since agreed to do all this at one time in 2 hrs and expect at follow up 2wks later to be 100% cured of it all. My Dr. When I to,d him how pre op to,d me to pack suitcase, list of pills pharmacist was to keep me overnight as sleep apnea, non of it happened. I also stopped breathing on table @nd double dosed the fentanyl.

At follow up when I told Dr. What happened in recovery and happy pain down 40%, he started to scream at myself and my Daughter telling me I was crazy. I had just to,d fellow that I was no longer raking 4 Percocet, 500 mg gabapentin, 2 diazepam suppository happy with results. Yet this man screamed at me then said I was crazy as he turned finger at his temple to express his meaning of crazy. When Daughter tried to speak he yelled at her refucing us both to tears as he expressed I should be 100% out of pain. My GP who has great deal of respect for me said he wrote a nasty letter to him and sent copy to my email

Dr. Lemos said I was a drug addict, avoiding work and mental, destroying my reputation as a Social Worker. Hospital to,d Dr, to remove letter from file when lodged a complaint and he refused, he still works there saying nasty thing to his patients as only Dr who knows what PN is. No help since. Did you go to Dr. Robert in Paris, if so what was the cost as diagnosed bilaterally, left side not done and my Dr. No longer with the hospital in AZ, who was fantastic, super nice man Dr. Michael Hibner in Phoenix, sorry so long, but in worse pain than ever and right side bothering me again with left, to,d this can happen from scar tissue

[paulyne]

I am sorry to hear of your suffering, I've had PNE for 4 and half years. It took me over 3 years to get someone to help me and I've now had a couple of ct guided nerve blocks at UCL and due to have physio. Having a doctor that understands you, as I have there at least gives me the feeling I'm not alone and someone is at least trying to help me. I hope your appointment goes well on the 25th July. You are not alone, this site is wonderful, you'll always find someone to help you through flare ups, give you advice on things out there and be supportive.

Good luck

[Severepain in reply to paulyne]

is the physio internal through vagina and rectum trying to relax sphincter etc. I did that for over a year, pain was so bad after, would sit in parking lot for hour before I could drive home. I had this, stretches, ultrasounds, but if your nerve is wrapped in scar tissue and varicose veins like mine, it would flare it up and decompression surgery to unwrap it as necessary, but it took from 2008 to 2014 to diagnose and then in 2017 finally done but by then permanent damage. I truly hope they caught yours early and this works for you. If not don’t delay, go to a Dr. Who has knowledge of surgery, only 8 in world when I did it, but none in Canada and only clinic attempting to research it they closed it down

All the best of luck, this might work for you, my prayers are with you