Health Organization for Pudendal Education

Hello All,
I feel so angry that this has happened to me. I feel like acceptance is a daily struggle. I struggle with constant pain and constant exhaustion. I saw doctor after doctor after doctor. I feel like i have been jipped of my life and of my joy. If others are willing to share with me their stories, i will be very grateful. Why, Why, Why was i just sent from doctor to next doctor? Why did none take the time to try to figure out what was wrong with me? This way of thinking is of no help to my psychological state but i fall into this rutt often. How do you all deal with this? I know that there are a lot of us who went searching for years and were ignored or rejected by the medical world. It is really really hard to be a Buddhist about constant pain and all of its ramifications.

ataraschimmel wrote:Why, Why, Why was i just sent from doctor to next doctor? Why did none take the time to try to figure out what was wrong with me?

I think all of us have fallen into thinking this thought. We're used to going to the doctor for typical problems that they can solve. When instead we get fobbed off on the next one and the next one, it does feel like no one cares. We've never had to face that each doctor treats what he treats, and if it's not on his list, then we are out of luck. On one hand, you can use each doctor you've seen and test you've had to make your case that you've ruled something out. It took me 4 doctors until somebody said the words pudendal nerve, to give me a clue on what to look up. So in that sense, it WAS valuable to keep going to those appointments. I didn't really have the knowledge of anatomy on my own to say it was a nerve problem, or which nerve...and those two nuggets of information really made all the difference.

I think it really is shocking when you first understand that a doctor isn't going to drop what he's doing and start researching how to solve your problem. I'm not saying it couldn't happen, just that doctors don't generally go looking in new directions unless they have that interest on their own. Each of our PNE specialists is in it because they choose to be. None of us has ever been able to convince one of our doctors to take up PNE. I'd like to think some of my doctors who knew of my PNE diagnosis and treatment would remember it and use it to help someone like myself down the line...but realistically the chances are small. We have a sort of orphan problem as far as typical specialists are concerned. I didn't even know what peripheral nerves were before all this, or how to get them treated. The obvious answer would be a neuro doctor, but...most of them only work on the brain or spinal cord...not the peripheral nerves. Finding the right doctor really is like looking for a needle in a haystack.

It took me personally a while to get over the feeling of rejection from a referral or no action, but I did finally reach a place where I could say, this person has effectively said they're not going to help me, so waste no more time here and keep moving on. From that perspective, it is kind of a gift when they flat out say no instead of stringing you along with "see me again in 3 months or a year". At least, that is how I came to look at it.

I am also still angry as to why this happened to me, it is hard for me to reconcile to this fact, it is also hard for others to understand us, since it is a never ending chronic state, I feel I am a burden to others to carry on their life, although nobody outwardly admits it, I know it would be much better and easier if I was not there. I really do not know how long I am destined to suffer like this, I have also lost hope some surgery will cure this, I am sure any surgery is only going to make it worse.

Sam, while anger is a normal state during this chronic pain process please know you are an important part of the entire picture. You would be missed if you were not here. Sadly, most of us have been where you are at. Please do not do anything drastic. Find someone to talk to (we are here). Have you spoken with your dr about anti-depressent's? I was so totally against them in the beginning but they really did help me get a grip on my view, attitude and my life. I'm not currently on them anymore, so don't feel like they are a life sentence. Speak up!! Ask for the help you need. With PN(E) we've all found that WE need to make the suggestions and bring the research to our dr's unless your lucky enough to find a knowledgeable one or someone willing to do their research. My only beef with my dr's and PT is being strung along month after month after month. I really do wish they would be open enough, and lose the ego long enough, to just say "I don't know how to help you".

Please be careful and know you are a special part of this life. Please take care of yourself!!
Tracy

Thanks Tracy, I will not do anything drastic, was feeling down because it is such a painful state and it takes time to adjust to this state. Also since it is a neurological disorder leading to other complications and seeing the success rate of surgeries, I am still skeptical about if any sort of surgery will offer any relief to our problems, everything is so apprehensive I am still in the acceptance state and so I swing back and forth very often. I do try all sort of ways like books, medicines, machines, spiritual faith etc for my pain but also break down very often.

To some extent I think the anger has kept me going, or I may have just sunk into an abyss of depression. My anger is directed at the medical profession who have fallen rather short of the task of helping me with this condition. (English, so a master of understatement)
I have suffered from a strange viral arthritis and a ‘large prolapsed disc’ so have been in severe pain in the past. The difference here is that no one seemed to want or was able to help.
I have been to see 3 separate neurosurgeons before eventually being diagnosed and would have thought that the clue was in the word NEURO ! I could rant now BUT I know there will be light at the end, medical advancements, education and well. . . . . HOPE.
Take care all,
Helen

I also go through periods where I feel completely gypped of my life and get angry in general about why this happened to me. But I have learned through therapy that the anger and the frustration makes the pain worse and that acceptance and learning to see the joy in the things we still can do will ultimately lead to better emotional and physical health. It took me a long time to learn how to try to get over the anger and it is a consious effort daily, but I try to be as positive as I can. Another coping mechanism I have learned to help me stay positive is to try to not think too far out in the future since that ultimtately depressed me (the thoughts of living with this the rest of my life and what was going to happen to me). I now try to focus on the next 1-2 steps I need to take to try to control my pain (ie try a new med, make an appt with Dr Potter) and take my life in bite size pieces. This is not easy to do as i am a total type a personality and a planner to the hilt - but trying to not dwell on things and trying to be as positive as I can has lead to acceptance and less anger for me.


Thankfully we all have each other on this site to connect with and share medical knowledge and advances with. I thank god every day that I found this group and that I have been able to benefit from the efforts, courage, strength and experiences of all of you! I dont know where I would be otherwise. This has also lead to additional acceptance for me - knowing that I am not alone in my fight against this monster of a disease.

Merrie

merrie wrote:


Thankfully we all have each other on this site to connect with and share medical knowledge and advances with. I thank god every day that I found this group and that I have been able to benefit from the efforts, courage, strength and experiences of all of you! I dont know where I would be otherwise. This has also lead to additional acceptance for me - knowing that I am not alone in my fight against this monster of a disease.

Well said, Merrie!

I just wanted to thank everyone that has replied. I know that we are in different places at different times. I also know that it demands a lot of internal work to accept that this is what has happened to our life. Sam, I feel for you. I know the feeling of feeling like i am a burden on others. It is a painful and scary one. I am sure that you mean a tremendous amount to those around you. Sometimes we cannot see or feel others care for us because the pain seems to just take over everything. I started a blog and i wanted to invite you all to enjoy it. I am sure that it will hit a lot of familiar chords. I am so sorry that we suffer this way. I pray for us all that we gain more and more pain relief in the not too far future. It is possible.
My blog: pudendalneuralgia-atara.blogspot.com
I hope that people will continue to respond to my question regarding anger. It makes me feel less alone. Thank you.

I'm angry about this, nobody understands that my pain is so terrible and I can't take it anymore. Somebody please help me, my friends hardly even talk to me anymore. I don't understand any of this at all I want it to end now.