Male - Pelvic Nerve Pain-PNE ?

[bowhunt]

Good morning to everyone out there! This is my first visit and an official "newbie". Since I'm here, you know whats up. Pelvic nerve pain. Looking for any advice! What I've read so far is this site is mostly women, are there many guys out there or I'm I the "unique" one and only? A little about my self. I'm a 60 year old male, use to exercise, hunting and Harleys. Diagnosed with prostate cancer (Gleason 9), had Robotic surgery to remove prostate on June 1, 2015. I've documented my entire process so I can help "the next unlucky guy". Anyway, I first notice my pelvic pain on June 27th, since then in this order is what I've done/go through. Checked by 2 Urologist, had Cystoscopy,Colonoscopy, tried Duloxetine (dry out mouth noise etc - bad stuff on me), – Physical Therapy, 3 sessions -Pudendal Nerve(Acupuncture/Acupressure) damage control with Dr Elizabeth Jones, 1st Perineal Nerve Block Oct 28 didn't work., tried Gabapentin (didnt like that stuff), Dec 8 – 2nd Nerve Block- Dr Thorson, Mpls - didn't work, Dec 29 – 3rd block attempt, Gangloin Impar Block – Dr Thorson, Mpls “didn’t work”, Jan 1-8 – 5 or 6 visits to Chiropractor, Jan 14, 2016 – 4th block attempt = Superior Hypo Gastric Plexus Block –Dr Thorson - didn't work. First day taking Lyrica, which seems to take some of the edge off, & final, Jan 18 – Appt with Dr Michael Van Bibber, Urologist. Could help me. Should also say, I'm totally ok when I lay down or walk. Sitting is my "enemy"!
If any of you have any suggestions, I can't tell you how much I'd appreciate them. To this day I've had my "pelvic pain" called so many things and really don't know if any of them are correct. Pelvic Nerve pain, PNE, ??? Its just horrible.
HELPPPPPPPPPPP! Looking to go to a specialist some place, and place! PS: I've been turned down by Mayo Clinic for consideration!?!?! I'm still shocked about that.

[janetm2]

Welcome to the forum, bowhunt,
You are not the only male but I will say there are many more women vocalizing here. Sorry you are having sitting pain, have tried many things and the Mayo clinuc is not helping! I have to go to work and not sure yet what to advise at this point. Please surf around the forum and check the FAQs off the homepage.
Janet

[Andy_Pablo]

Hi bowhunt.

A fellow male sufferer here. I am 38 & have had the condition for over two & a half years. Had surgery seven months ago & had improvement in some areas, but not in others. I would be happy to answer any questions you have.


Regards,

Andy

[bowhunt]

Hey Andy:
Thanks for offering you story.
What is/was your recovery time?
What % did you reached at 3months, 6 months, etc?
Would you do it again?
Did it effect your plumbing (meaning erections)?
What was your official name of the surgery you had?

Thanks,
Bowhunt

PS: I see your from England, my dad was from Southampton, and in the RAF in WWII

[Andy_Pablo]

Hi bowhunt.

Not a problem. If we can help others then it might help to make some sense of this nightmare.

My recovery period is anything up to two years. If its not fixed within that time frame then the nerve damage is most likely permanent. It can recover any time within two years however they gave me worst case scenario. I feel that is more a case of being a realist & I thank them for that.

After three months I was worse than pre surgery, could barely walk ten yards & was taking daily opiates. By six months I was able to hoover & I stopped taking opiates. In the past month I have regressed & had to go back on opiates. I am unsure if this is due to overdoing things or just a case the nerve is trying to settle. I was warned that symptoms would fluctuate throughout so only time will tell.

I would 100% have surgery again. While I am far from fixed I have improved so far. Before surgery the thought of doing housework was nothing more than a dream. I am now able to do basic housework. I am still unable to return to employment which is frustrating as I have two jobs lined up, but that is hopefully the next step once this recent pain flare settles. I will say though, surgery doesn't always help & you have to exhaust every avenue of treatment before committing to surgery.

Surgery affected my 'plumbing' in a positive way. I had more erection issues pre surgery than I do post surgery. It is still painful after ejaculation for a few days, but I am functional in that way. It fluctuates a little & I am reluctant to persevere at the moment though. The biggest issue I have had from my genital area since my injury has been temperature. Pre surgery from mid day onwards, my penis & testicles would go ice cold. Post surgery that has improved dramatically & is normal probably an 80/20 split. It fluctuates all throughout the afternoon & evening, but is more normal than not. My doctors described this as "autonomic dysfunction".

I think my surgery was officially called Bi-Lateral Transgluteal (TG) Nerve Decompression Surgery.

If you have any other questions then don't hesitate to ask.

Myself & many millions of others owe people like your father a great debt.


Regards,

Andy

[bowhunt]

Thanks Andy:

If its not to much trouble can you list "all your steps-procedures" you did prior to surgery? Trying to figure ... when are all the steps considered done! Let me clarify ... after my prostate surgery, another surgery is for sure at the bottom of my list! I can honestly I've done absolutely everything everyone has suggested that can be done "that I know of with the medical world that is available in my area". Now I'm willing to go where ever I need to go for the next step. I'm looking for a check list of things "required" before I reach that last step which would be surgery. With that being said, I'm still healing from prostate surgery, "BUT" I've also read, the "sooner you attack PN" (if thats what I have) the best chances of recovery.
Thank you for sharing your experiences
Bowhunt

[Andy_Pablo]

Hi Bowhunt.

I understand all of your concerns. I think it depends entirely on the individual as to when the steps are considered exhausted. Surgery for me was the only realistic step forwards as I was pretty much bedridden & still suffering with intense pain. But we generally stop looking when we find our keys & that is no different to people in our situation. Some have found satisfaction in gaining 50% improvement & that is enough for them. Some have become worse after treatment. Others wish for euphoric recovery. I personally would not poke my nose to the sky at 50% improvement, but obviously hope for complete recovery. I would advise anyone to research but understand that what works for one might not work for another.

As for my journey, I visited several GP's who prescribed a plethora of antibiotics, anti-inflammatories, anti-depressants & pain medications. Some helped, some made things worse. Once these were proven to be ineffective I was sent to a Urologist who advised me I was suffering from prostisitus. I asked for a second opinion, was given my PNE diagnosis & given three Nerve Blocks. These are pretty much only really diagnosis tools & as such gave relief for approx 48 hours each & then returned to 'normal'. I was then advised I needed surgery. This was completed approx two years after I had suffered the injury & they advised me they found & released a trapped nerve. I was also checked for bowl & testicular cancer, prolapsed bowel, back nerve issues, & a few other minor things that have all blurred into insignificance over the course of the past few years. Based on location & finance, the only other realistic treatment option for me other than surgery would have been physical therapy with a lady in Southampton, however, it was not really an option due to finance & like yourself, I had concerns regarding the 'speed of attack' of the issue as from my research I know that my age, length of time between injury, diagnosis & surgery gave me the best chance of a good recovery so that I may resume what was once a good career & life. I live in hope & I genuinely wish everyone suffering from this nightmare has both hope, recovery & good quality of life in the future. Your good self included in those well wishes.

Again, don't hesitate to ask any further questions or to probe my answers if they have not answered your questions satisfactorily.


Regards,

Andy

[bowhunt]

Andy:
Prior to surgery where you ever prescribed Lyrica? If so, how many MG pills? And how many times per day? Did it help much? Take a guess what the % of "help" Lyrica provided?

When you first determined you had PN pain? Did you just wake up that way or did a prior surgery start the pain?
Thanks, Bowhunt

[Andy_Pablo]

Hi Bowhunt.

I was prescribed Lyrica before & after surgery. At first I didn't think they helped at all. Then I experimented & stopped taking them. I sharply realised that they helped a great deal. I would estimate by about 50% as they dull every pain symptom. I take three 300mg per day.

My pain started after long distance cycling & heavy lifting. It actually started with complete numbness of my penis & testicles. It then slowly progressed to burning, sharp pains & dull aching all at once from my waist to my knees. The irony of my injury being caused by my attempt to be fit is certainly not lost on me. I cannot help but laugh at that.


Regards,

Andy.

[rick]

Hello,

Lyrica was extremely helpful for me when my pain levels were very high. Lyrica seemed to start helping at 900 mg a day. I increased to 1200, then 1500 for a few months then reduced to 1200 mg and stayed at that level for 4 or 5 years.

I also took 180 mg of Cymbalta each morning and the two of them were very effective in reducing the pain. At present I am on 120 mg of Cymbalta and 1200 mg of Neurontin and my pain levels are down to a 1 or 2.

I think the combination of high levels of Lyrica/Neurontin can be very effective. I have read that for high levels of neuropathic pain Neurontin really becomes effective at about 4500 mg a day. I know that when I switched to Lyrica I was taking 5400 mg of Neurontin.

If you are not taking Cymbalta consider adding it to you drug regimen. When I was taking 1200 mg of Lyrica I was also on 180 mg of Cymbalta.

According to a number of pain specialists I corresponded with over the past 10 years these levels, especially the 1200 mg of Lyrica were unheard of, especially 1200 to 1500 mg of Lyrica. I can only thank the MD's that I worked with. They would look at the results of my research and take the results seriously.

Consider adding Cymbalta and argue for levels that impact your pain. It was when I increased my Lyrica to 900 mg and Cymbalta to 120 mg that I started to feel a significant reduction in my pain.

Good luck,

Rick