Health Organization for Pudendal Education

Having had PN since January, 2011, my physical activity has been greatly affected. Since I could not sit comfortably, I could not go to concerts, ball games, etc. I could not go fishing, hiking (uphill was brutal), skiing, or just about anything unaffected people do. In reality, I spent a lot of time lying down, or perhaps kneeling. These were the only two positions comfortable for me.

I thought my family understood my condition but i was wrong. In quite surprising fashion, my family has told me how angry and frustrated they have been with me over the past 3 years. To a person, my family (wife and children), all have expressed anger towards me for failing to be involved in their lives sufficiently. While I admit that I have had to curtail my activities severely, I still did not miss concerts (I stood), graduations, etc. I was there even though it hurt.

Now, it hurts me that they believe I have let them down these past three years, that I have not been the husband or father they needed. Their understanding and compassion for my PN condition is completely non-existent. To me, it is like faulting the blind man for not being able to see, or the deaf man for not being able to hear. I did my best to continue on working and supporting the family, but apparently, for them, that is not enough. It is very disheartening that they do not consider the nature of the PN disability being the cause of my problem.

I'd be interested in hearing if others that have this condition have run into the same lack of understanding and compassion.

kone

Hi Kone,

That is incredibly sad that your family has no understanding of your pain. I'm really sorry to hear they are not being very supportive. I haven't experienced what you are going through with your family but I know a lot of people over the years who have, including some very close PNE friends who have lost their marriage partners and relationship with their kids as a result of PNE. It's really sad, to be honest.

I agree with you that it's a medical condition (worse than being blind in my opinion) but some people just don't have any patience with people who are in pain. I don't know if you ever saw the article I wrote titled "Taking the Shame Out of Pudendal Neuralgia." I know some people who have shared that with their families and say it helped them to become more understanding of the PN patient but then there are other people who are just can't grasp how truly awful this condition is. It's bad enough to go through the pain but then to have people blame you for it is even worse.

It's true that families do suffer a lot. Often I kept my pain to myself or posted on the forum rather talk to my family because there are times you get the sense that they just can't deal with it anymore. I'm not sure what the answer is. I wonder if some family counseling would be helpful.

Violet

It seems even family members do not understand the impact that PN can have on a person's life. Perhaps I did not communicate to them adequately the limitations of my condition. Even so, their complete lack of understanding is remarkable and discouraging. kone

Kone,
My heart goes out to you. I too have had better luck with my family like Violet. I have seen you work so hard at getting better through the shockwave treatments and only wish your family understood that an improvement is a miracle and they should applaud your efforts. I wish you the best for the future and that some how the will see the light and cherish what you can and I am sure give the your best efforts as a husband and father. Take Care
Janet

I don't believe my family (my parents) understand my problems well. They know I am unwell and I know they care very much but they don't really understand how hard life has been for me over the past twenty five years or so. It is very difficult to understand chronic illness without being a part of it, so I don't blame them. Once I printed for them all the information about my condition, but they did not even read it, they were too scared to read it. So I could never make them understand what I have to go through on a daily basis and so there are occasional misunderstandings at home and petty quarrels.

My younger sister is the one being in this world that understands me well - she supported me all through my troubled life since childhood. I don't know what I would have done in life without her. But she has not been living with us since her marriage in 1998 and presently lives in a far off town, at that time I was not doing badly healthwise, but when my problems returned with a vengeance in 2004, I missed my sister very much.

Srinmav,
I understand some of your loss with your sister not being nearby. Even though I am doing better it is still a struggle and I was not sure how I would get by after my brother passed in 2012. He always seemed to know how I felt and protected me and made me as comfortable as possible. Then after his second stroke he became my chronic pain buddy and truly understood and even looked to me to try and figure how to deal with it. I miss him dearly but know I still have support from the others. With the increasing stress at work this year will be a challenge and do wish he was here to help. I hope you can connect with your sister now and then, although my brother was not nearby I cherished all the times were able to be together. Take care
Janet

Hi Kone and Srinmav,
Sadly, the day-to-day realities of severe chronic pain -- including the invisible, obscure pudendal nerve pain that many on this forum endure -- are inadequately communicated and little understood. For this reason, since 2010, I have been working on a PhD that aims to bring visibility to and raise common understanding of chronic pain. I have now gained the PhD., and my dissertation, How Does it Hurt?, which is written within the framework of a personal narrative, will be published for a general readership in the second half of this year. It is my hope that it will lessen the isolation of sufferers and inform those who live with them.

Hi Konedog.
I took my husband with me to a therapist that specializes in chronic pain. I was fortunate that my husband wanted to go. The therapy really helped him understand what my life was like with chronic pain. I had kept many of my feelings to myself as I didn't want to burden him. That just made things worse. My husband will never really know what chronic pain is like unless he experiences it himself. However, I think he has a much better understanding of it than he did before.

Thanks for everyone's input. My family does not understand chronic conditions. They are all healthy and have no concept of what it means to deal with chronic illness. When I try to explain to them my situation, they simply do not understand. Someday, when they have to experience the same or similar, then they will understand. In the meantime, I have gained tremendous insight into other people's struggles with infirmity and illness.

kone

Kone,

I gave some family members articles by Dr. Hibner and other doctors that explain PN/PNE. My husband and my mom both thanked me and told me it gave them a better understanding of the complex problems we deal with. Also, I am not sure I would have completely understood chronic pain before my own experiences with this condition. Best to you,
Stephanie S