Health Organization for Pudendal Education

I have done a couple things to help with communicating with the Doctors.

Everyone feels pain different... everyone has a different interpretation of the pain scale and most people are wimps... we are NOT wimps the pain you deal with would incapacitate anyone that has not lived with our condition.

But the medical staff need to understand what you are feeling AND how often.

This is what I have done and I completely changed the conversation with a doctor.

Make your own pain scale list it from 1 to 10 and list YOUR symptoms that you get. For example for me:

1 through 5 make a list of symptoms that affect you,

Say 1 you can feel the pain but ignore it.
2 you know to stop doing things like washing dishes.
if at 3 you cant sit say so. Also 3 is where you are supposed to reach for pain meds.
At 4 the pain area increases and you must rest, lay down ect.
If at 5 you cant work due to pain, no amount if rest will correct this. The only thing to do is rest the remainder of the day.
6 is an impact to the groin/testicles and the feeling of a forigen object in my groin that I feel should no be there.
7 is feeling like I was kicked in the testicles along with the nasua and total incapacitiation for 1 -2 hours.
8 is felling like there is immediate trauma or something that I should seek medical help.
9 is showing signs of shock, very rapid pulse, pale skin and unable to stand, is serious enough to go to the ER,
10 is KO I would need immediate medical assistance.

now ask THEM to rate the scale, and watch what numbers they assign. Now use THEIR numbers.

This makes a big difference when talking to doctors.

If this does not, you may want to find another doctor.

This is very interesting and you are so right about how different we see it. I do hope this can help others. I have been very lucky and even I have different views of my own pain. I put meds at 6 or 7 and then the shooting pains I had at 8 or 9 and boss saw it that one day and said it looked like a 10+. Thanks for posting this idea, I may still need this in the future with other doctors.
Janet

Hi Blight,
I truly do understand the need to communicate how you're feeling with treating providers and am very happy you found a way to do so effectively. I'm even more happy for you that you have someone who is willing to listen to you throughout your description of symptoms and pain generators.

I always had an issue with the "Medical Pain Scales". It doesn't appear appropriate for chronic pain, especially when you have multiple symptoms and pain locations.
And pain really IS highly subjective. My 8 may be your 3, and vice versa. It really bothers me that most doctors actually try to match up YOUR face, with the face on the charts.
On numerous occasions, I've expressed an eight out of ten pain to various medical professionals, only to have them tell me NO because the appearance of my face doesn't reflect their chart. Then one of two things will happen: They'll write down my reported eight with disdain and disbelief or record a number they feel is more appropriate.

A BETTER PAIN SCALE:
http://hyperboleandahalf.blogspot.com/2 ... bably.html

Kind regards,
Karyn

Blightcp, I really like your idea. Like most, I hate the pain scale. I always tell people I would rather use the kids chart with the faces. One time I had a nurse ask me before my infusion what my number was, she said it looked like a 10. I said, no it was not a 10, if it was a 10 I wouldn't be talking, my BP would be elevated, and I would be moaning. She said, you look pretty awful today, I would hate to see a 10. I am going to give some thought to how your pain scale and come up with one for me to show the doctors. It is really a good idea.

Karyn,

I just read your post and cant stop laughing. When you find the doctor that actually believes that it is an 7 - 8 on a daily basis it helps a lot.

I have recently found a secret weapon, you women will have to adapt this to your anatomy, but you may still get the effect with a male doctor.

Dr. Ross has a lot of young fellows that this worked very well with:

pain level 1, ouch did I do something yesterday? it is sore today. Better take some Motrin.

Pain level 2, I should not have tried to do splits yesterday. I need a good massage to work out these kinks.

Pain level 3, your groin hurts it feels like a full on groin pull that will not go away. Better take the day off and lie low and take some more Motrin.

pain level 4, you just walked into something and your testicle got grazed, at this point you cant do anything without extreme effort. I am taking whatever pain meds I have, and calling the doctor.

pain level 5, let me grab your testicle and squeeze it and not let go. The only thing I can think about right now is getting whatever is doing this out of me. I can't work or even watch tv, clothing is painful.

pain level 6, I feel like I need to rip this testicle, or something behind, it off. Something is in there, and I think I just saw Ellen Ripley with a flamethrower.

pain level 7, full on kick in the nuts, you are going to the emergency room. Fetal position crying mommy.

pain level 8, full on kick in the nuts, starting to show signs of shock. It's cold and I'm sweating.

Pain level 9, I am incoherent and unable to function at all. Jesus either help me, or come get me I'll take either one right now.

pain level 10, I am loosing consciousness. I can't communicate.

That got my doctors attention especially if its a guy.

7 years ago,before I was diagnosed,I told my gp my pain level was at a 9,he said,you wouldn't be able to walk across the room if it was at a 9. He was the same Dr.that said in a report that I was not writhing in pain. Couple of years later at some idiotic pain clinic I was asked what my pain level was after a sciatic steroid injection. I was sweating and about passed out from it. I said my pain is severe. He actually got angry with me and said,can't be, the needles were just removed. So,I said,"ok ,Ill tell you you what you want to hear. " 0. I walked away. I just simply want to have this pain decreased enough so I can continue to have some sort of "normal " life. Just to be able to sit ,just please God,,allow me to be able to sit for at least an hour.

It really annoys me how people who have never really felt real serious pain, think they have more pain than you.

I had one coworker complain about a toothache that he refused to get taken care of. Now we all had good dental insurance, he just did not want to go as he told me. He had the nerve to tell me I did not understand how much it hurt him. Now, he works in my group and I have worked with him for 10 years, but he was being a jerk. So I told him: Lets trade, I'll take your toothache, and you can get kicked in the nuts every time you try to sit down. He stopped complaining and went to the dentist the next day.

But people working with pain have to understand there are two types of people with severe pain, chronic and acute. Acute as in the story above are in agony for minor things. Chronic pain sufferes can withstand much more pain than a normal person before dropping to their knees. We are still in pain, it is just that able to mentally force our way through it by conditioning and force of will.

I had a friend who had epilepsy, she knew when she was going to have seizure and would try to leave the room. It had happened enough, in church that I saw what was going on. I helped her to a chair, and just held her hand, she was in pain but made it clear that she did not want an ambulance and not to call for one. After 10 min the seizure had passed and she was covered in sweat and exhausted and in pain.

I doubt I could ever really understand what that feels like, but the key is compassion for what someone is going through, something beyond your understanding, that people need to understand and have.

We all tend to try to relate to others, but in these cases of actual severe pain, compassion is much better than trying to fit someone's pain in a box. We don't need our pain categorized, we know what kind of pain we are in and what we need. We need help and understanding, but narcissism is the enemy of compassion. Doctors are unfortunately all too susceptible to this misconception, and when they do, it has the worst effect on the patients in the most pain.

Well said!

Dear Blightcp,

I agree with Janet. Very well said, indeed. Thanks so very much for your thoughtful post.

Kind regards,
Karyn

blightcp wrote:Karyn,

I just read your post and cant stop laughing. When you find the doctor that actually believes that it is an 7 - 8 on a daily basis it helps a lot.

I have recently found a secret weapon, you women will have to adapt this to your anatomy, but you may still get the effect with a male doctor.

Dr. Ross has a lot of young fellows that this worked very well with:

pain level 1, ouch did I do something yesterday? it is sore today. Better take some Motrin.

Pain level 2, I should not have tried to do splits yesterday. I need a good massage to work out these kinks.

Pain level 3, your groin hurts it feels like a full on groin pull that will not go away. Better take the day off and lie low and take some more Motrin.

pain level 4, you just walked into something and your testicle got grazed, at this point you cant do anything without extreme effort. I am taking whatever pain meds I have, and calling the doctor.

pain level 5, let me grab your testicle and squeeze it and not let go. The only thing I can think about right now is getting whatever is doing this out of me. I can't work or even watch tv, clothing is painful.

pain level 6, I feel like I need to rip this testicle, or something behind, it off. Something is in there, and I think I just saw Ellen Ripley with a flamethrower.

pain level 7, full on kick in the nuts, you are going to the emergency room. Fetal position crying mommy.

pain level 8, full on kick in the nuts, starting to show signs of shock. It's cold and I'm sweating.

Pain level 9, I am incoherent and unable to function at all. Jesus either help me, or come get me I'll take either one right now.

pain level 10, I am loosing consciousness. I can't communicate.

That got my doctors attention especially if its a guy.

I showed my husband your post so he can relate to my pain - i am around 5/6 most of the time on your description level.

Not sure if other ladies on here would agree but i feel much along the lines of having been kicked in the vulva.