Health Organization for Pudendal Education

Stephanies and Christine
How are we all supposed to get through this? The first few months/ years post op are soooooo difficult! I understand what Christine is going through. Some days I feel like I'm going to make it and then I want to drive my car off a cliff! When does this hell end? I think we just have to always have a plan. My plan is that if I am not pain free by one year post op then I will look into an interstim with Dr Peters in Detroit. I am also having Lidocaine infusions next month to help with my residual rectal muscle spasms. I can't just sit around and let the pain take control of my life. I am always researching and talking with other post op PNE veterans looking at ways to navigate my way through the pain. I keep busy and try to keep my mind busy too. Some days are very difficult for me as well and I don't want to wake up either....... But I am stuck with this dreadful condition so I better just accept it and move on. It sucks. I actually had my first day yesterday pain free. First day in 3 years! First day with no pain since my TG surgery in December. I hope I have more of those to come! Thank God...... I hope the same for you ladies. Then the pain returned today, but that's ok, it will get better. Time heals.
I am with you ladies. We are in this together! Don't feel alone.
Lara

Christine, I remember feeling like I was in a prison of pain for quite awhile after surgery. The SSRI antidepressant I took to relieve symptoms didn't really help depression at all. The only thing that eased depression for me was effective pain control. I'm not sure the best way for you to achieve that but as long as you still have options available there's hope for improvement. If I hadn't improved eventually after surgery, I would have done something like Lara is suggesting -- either neurostimulator or intrathecal pain pump -- or possibly another PN surgery if I felt like the first one hadn't addressed all areas of entrapment.

Lara, I'm happy to hear you are having some good days. That's how it was for me during recovery. Slowly I started to see more and more decent days so I think that is a good sign for you that hopefully the nerve is starting to heal.

Violet

Hi Violet
Thank you, yes I am actually starting to see some real improvements... Finally! I have had 1 full week of relatively very little pain. I turned a corner! I am starting to come down off my narcotics now. I know Dr Hibner said this would take a long time and he was not kidding. This recovery was torture for me, I did not think I was going to make it. I just hope the pain stays away. I am not going to change a thing that I am doing! I do not carry anything heavy... I know what flares me and I stay away from it. I avoid physio like the plague! I figured out that physio flares me.
I hope this lasts.....

Lara

Christine, do not allow any one to tell you to stay off of pudendal hope! This is your life line.
I also had Dr.Antalok for decompression of my pudendal nerve. Jan.2011. I still am unable to sit. I do at times just out of spite, but I ALWAYS pay for it.
There are people that Dr.Antalok helped. Maybe because it was caught early enough. My nerves were too severly damaged.Believe me, I know how horrible you are feeling. I have been there.
Keep us posted, please. There are times taking a moment at a time is not enough. Ellie

Lara, I hope it lasts for you too. You are smart to be careful.

Ellie, you are one of our veteran PN patients on the forum and you've been fighting this for a long time. I admire your spirit and that you always have a kind word for someone else. Wishing you better days ahead.

Violet

Thanks guys, i dont mean to sound so down everytime im on here but man talk about DEPRESSION!!!!!!! Well I was staying with family in Va but Medidaid takes months to get approved there and they said I may not get approved at all, and I've been in so much pain but I can't get a doctor to see me because im on out of state medicaid so i had to fly home last week and see all my doctors for refills, injections, shots you name it. One doc wants me to see a Neurologist as he thinks the pain in my L4/L5 is causing my right hip to hurt. I saw my pain management doc today & he wants another MRI done since the pain from my back is causing my hip pain and has been discussing with another doctor I've seen that depending on what the MRI shows i may need a morphine pain pump implanted in me to help with the pain as it keeps me in tears a lot. Jas anyone had one of those put in? If so can you see it or does it push out far from the body like a growth of some sort? I'm sorry but I have know idea about these things so if anyone can give me some advice please let me know esp. If it helped. He also is making my Topmax a higher dosage which will be good. Well i hope wveryone has a food sleep tonight, i know i need one;) Good night ladies

Ccannon, Lottanerve has a pain pump. You can search through the posts for her experience and/or PM her.

Thank you. I will also call the doctor and try to get more info on it. Im still less then a year since my PNE surgery and its painful everyday. I read so many stories of couples who cant have sex any more as it hurts to bad and is a horrible experence. This makes me feel like I will never date again. Has anyone had luck getting over this? I sure hope so as. I dont want to spend the rest of my life alone. Good night all.

Cc
Although I have not tried my gyne(he knows all about PN andPNE) said it was possible to have pain free sex post PNE surgery by seeing PN aware PT. I then talked to the PTs and they said they have successfully helped others but realize most of the work would be on me to do daily exercises. My primary care dr wants to work on my depression first since the gyne was the one who suggested this and I had not asked. I was wondering but had thought like you that it would be excruciating to even try but looks like I would have to do the work before having sex. Do not give up but you will need to find a good PN aware PT and probably wait until you are doing bettter.
Janet