Health Organization for Pudendal Education

Hi everyone.
Having a very rough night tonight.
I have a pain pump but we haven't reached a helpful dose yet partly due to side effects; we're still working on it after over a year.. long story

Meanwhile, I have tried to become as active as possible both cause my family needs my help, and cause getting out and about helps so much emotionally.
Today I met with a new PT who seems wonderful and savvy and I am hopeful.

However to get there, I had to drive myself as hubby is away on business....It was only a short drive 15 min each way, but painful regardless.

I also have been driving occasionally for above reasons ...It feels great, but pain escalates later on . I try to take a break for a few days to give my body time to rebound.
My Docs feel the benefits pf getting out of the "isolation" etc of pelvic pain ( as others have described) ou weigh the risks.

However today I was still recovering from pain from my last drive.
but I couldn't give up this opportunity to see this savvy new PT.

Now my urinary urge is worse than Ive ever expereinces in ages.. and my anal pain is screaming.
i take Azo Standard for the urge but I suspect its maki ng things worse as I feel burning -and even more urge ...recently. Burning is not usually a symptom for me.
I think my body is tired of the AZO.

I am on my own this week with my 2 teen-agers and very scared. Another child is away at college.

Are there any pain killers that can help with urge this severe?
What about for my anal pain?
I will be seeing my pain pump nurse tomorrow, but she is not savvy in PN/IC etc
(very few medical folks are are here in NY NJ area). She will hopefully increase my pump dose...However it hasn't helped yet so I so Im not expecting a big change.
I do have several meds on hand but Have always been scared of side effects (as in can't pee well or constipation)
I take dilaudid suppository for pain but they have lost their effect
Any suggestions...Am desperate.
It seems like everything I try increases pain!
Pls help
Thx so much
Kathy

I am sorry I don't have any ideas, but please know that I understand what you are going through juggling kids/family, etc. and I hope for better days ahead for you.

Thanks so much Stephanie,
I really appreciate your kinds wishes. I wish the same for you and your family.

Kathy
Have you tried infusions? I'm not sure if you are able to with the pain pump? My pain doc has me booked for 3 infusions in one week- he said an aggressive dose of Lidocaine to help with my rectal pain. He said the Pudendal nerve is causing the muscle spasms. I go Into the hospital on Monday, Wednesday and Friday for a 3 hour intravenous lidocaine doses. He is certain this will kick the rectal pain in the butt! No pun intended. Nyt says this helps her as well.
Not sure if you have ever tried this therapy? This is my first time and I'm hoping it works......my pain is only the annoying rectal type like you describe. I'm 9 months post TG.

Lara

Hi Lara,
Thx so much for replying!
.this sounds interesting. The pain docs Ive seen do not seemversed on the latest stuff with helping PN pain. My newest pain doc,whom Ive been with since Spring seems to genuinely want to help but acts getting the dose right on my pain pump is a crap shoot.
He says things like..."if I knew something that would work, my job would be easy"

I m guessing, that when I ask about Lidocaine infusions there will be some excuse as to why he doesn't do it or why they can't put in hospital.

But I just spoke to my pain pump nurse about it and she says there's no prblm doing infusions with a pain pump, in so will ask my doc. She has patients who had this done. Maybe she knows of other docs.

She did point out that I have Bupivicaine -a numbing drug- in my pump ( but currently its very low tho) so , could explain why it doesn't work)
For this reason she wonders if Lidocaine would help. But we both agreed that IV meds goes right to the bloodstream, and could have a better result. My only concern is whether my pain could be considered spasms, its constant throbbing rather than spontaneous spasms of pain.

my PT in her first exam (just went internally a small amount ) she found the muscles to be so tight, so guess they are in spasm?
I think muscle and nerve are both involved. in addition to severe IC urge in bladder etc.

Can you tell me where you are located? ...or where NYT is getting the infusions?
I know she has seen docs in NYC, but now I think she is being treated in upstate NY.
If my NJ doctor can't do it, there is a doc in NYC with a reputation for being aggressive with pain meds Ive seen him and he knows me. He had done in office ketamine infusions for me once (with some lidocaine) in 2011, I later found out that he did not use the usual protocol that ketamine patients get, like anti- hallucinogenic meds and anti -nausea meds. So we couldn't go too far with it, due to the wrong protocol Im assuming, as something wasn't right.

NYT has been to him as well. He may be worth checking into. Not sure if he'll do it tho, as I asked about getting ketamine infusions in hosps a few ago and he had some excuse as to why he couldn't put me in hospital...So much BS and red tape Ive run into in trying to get some relief.
At this point I will do anything!
When I read "Lotta Nerves" description (on a recent thread) of where she was before the pain pump helped her, it almost described me at this moment
I am more functional, than she was then, but the pain is so high, that I'm in a fog, and i don't want to wake up each day as I know what I will face. Im s mom with kids to take care of and hubby is at work each day.don't know what to do!
My hubby is loyal but in denial about how bad things are. His advice is I need "anti- anxiety meds to relax"
I come from a family of worriers so he sees this as a pain source. I know being fearful worsens things but does not cause it..It sure does not cause one's anus to be screaming with pain.

Thx again Lara so for your suggestion. I wish you well with ur recovery
I pray to get some one who will do this for me!
If anyone else has thoughts pls respond as well. Thanks so much.

Kathy
I am in Toronto Canada.... So if my pain doc can do it here, then I'm sure your doctor can surely find a hospital to do it! We are in the stone ages compared to the USA. That's why I have to keep going back to Hibner.

Good luck!

Hi Lara,
Thx for your quick response. Does my pain sound like yours ,-----constant butt throbbing?

About putting me in hospital to get infusions..I wonder if thats where I may run into a hassle? I have asked to be put into hospital for pain, for years, and docs have said ...we'd do i,t but insurance wont pay for someone to be put in for pain relief, in the US,
But this maybe be different as its a specific procedure.. I can also check with my pump nurse.. For ex: if my pain was cancer pain, they would put me in, but Im not sure if they will pay for a procedure to address a chronic pain condition? I pray they will.
Since NYT is in the US in nearby NY State ( I hope) then that encorages me
Can anyone weigh in on this?
Thx so much, Lara Marie.

Hi Kathy
The infusions here are done in hospital in the ICU area but are an outpatient procedure. My doc says it takes about 3-4 hours per infusion a day. I need 3 days of infusions in 1 week. I will be monitored very closely on a heart monitor. Potential side effects may be seizures or coma but he said these are rare. He is convinced this lidocaine will stop the rectal pain enough that I will be tapering my opioids on my last infusion day! God I hope this works. I spoke in great detail with Nyt about these infusions and she does get good pain relief. Maybe she will comment on this forum??? So Kathy, you have nothing to lose! I am booked Oct 6,8 and 10, so I will let you know.
My pain sounds like yours..... The annoying rectal irritating pain. Enough to drive you nuts!

Lara

Hi Kathy,

I am writing from Australia. I have had PN since 2008 and like everyone here have been through the usual rounds of doctor after doctor; have been bedridden for three years now, on massive doses of Oxy and Gabapentin, Endep at night. My "main" problem, even though I have many is my shocking burning in the perineum. Even on this rotten doseage of Oxy which my original GP gave me, this burning is just indescribable. I have no quality of life and have lost everything, including friends. However, I have "found" the right man after searching since 2010 (I saw our Prof Vancaillie in Sydney twice and had Botox, after which he told me to go and find the best Pain team I could). I live in Tasmania, away from all the mainland doctors so it has been a nightmare.
I, like you, have terrible urgency and that's how it all started.
I'm sorry that I can't help you, but I have been looking for someone with a Pump to ask one question: do you have to self catheterise? I guess it depends on what you have in your pump. Do you have a local anaesthetic?
I am having a pump put in at the end of the month and one of the ingredients is definitely Buvicaine or something like it.
Please, please if you could possibly tell me if you do have this and how you manage?? I am really scared about doing this, BUT I will do anything of course to be rid of this burning..sorry I can't write more as I type on my leg and am in shocking pain as I write this.

I hope someone can help you. Wishing you all the best!!

Jeanette

Hi, I have gone through your pain and and life altering experiences. I was fortunate enough to have a daughter that is a Pharm D (advanced degree in pharmacology) and did pain research at NIH (National Institute for Health, for cancer. Cancer patients have extreme pain. She worked with my doctor to get me on Duragesic ( Fentanyl patch) which is 10 times as strong than morphine. I started at 25 mg, wearing it for 3 days between changes, and ended up on 100mg for 2 days. In addition, I also take morphine for spikes in pain. There are also fentanyl suckers for extreme pain spikes. Tell your pain specialist and also tell him about Dantrolene , which is the best muscle relaxer by far. You'll need to have your liver enyzmes tested when on it, because it can inflame the liver. I take milkthistle to prevent liver changes.
You need to get your pain below a 5 on a 1-10 scale to have a life. I assume your on psychiatric meds, because the pain will cause brain chemisty changes.

I believe that this will be a good start, but it also sounds that you need help with inflammation. Icing helps but will cause the muscles to tighten. Curcumen is an anti inflammatory supplement. Also, research PEMF, I am going to start it. An Ultrasound unit can help tight muscles and can be purchased on Amazon for $100.