Health Organization for Pudendal Education

abmia22 wrote:Its not so bad for you. How about living with PN as a 25 year old who will probably never get to have a family or a wife now because of the penile pain. At least you got to live your life somewhat. Not that im downplaying your case, but I just woke up one day and this pain appeared out of nowhere, what I would give to have a chance for a normal life again...

Hi Abmia22 - Who are you directing this statement to? I agree 25 years old is a very difficult age to be going through this, but please don't give up hope. Personally, I don't think there's ANY age that's better equipped to deal with this. Were you aware we have a small child suffering from this condition (please see "MOMS" posts - Journey of a Child)? There IS a chance to have a normal life again. It won't come easy, but it is possible.
Wishing the best for you,
Karyn

abmia22,
My pelvic pain syndrome started at age 14 and I have a husband and children, probably because I never said I "probably couldn't".
Several months ago my husband attending the wedding of a young man who was in the end stages of Muscular Dystrophy. He married a healthy young woman...there are women in this world, in fact many more than you would think, who will not turn their nose up at a man because he has health problems.
You are limited by your disablity inasmuch as you allow yourself to be defined by it. While I have to agree with Karyn in saying that there is a chance to have a normal life again, I also think it is possible to have a life that is never "normal" and is still excellent.

Lernica, Congrats!

HerMajesty wrote:You are limited by your disablity inasmuch as you allow yourself to be defined by it. While I have to agree with Karyn in saying that there is a chance to have a normal life again, I also think it is possible to have a life that is never "normal" and is still excellent.

Very well said, HM!

Give my congrats to your daughter, Lernica. Praying her success over these next difficult long years.

As M

abmia22 wrote:Its not so bad for you. How about living with PN as a 25 year old who will probably never get to have a family or a wife now because of the penile pain. At least you got to live your life somewhat. Not that im downplaying your case, but I just woke up one day and this pain appeared out of nowhere, what I would give to have a chance for a normal life again...

I think one can have an extraordinary life, even when one has a disability.

...says this 25 year old.

I refuse to be defined by my limitations.

Plus, medicine is constantly improving. I think there are answers yet to come!

Lernica wrote:My eldest got into medical school! She'll be starting at a very reputable Ontario school in the fall. I'm so proud and happy for her. She worked very very hard for it over the past four years in a difficult B. Sc. program.

So there's at least one more PN-aware doctor coming up in the ranks!

This is fantastic news!! Congrats to your daughter.

My husband graduates PA school this fall. So there's another PN-aware provider coming up

Thank you for your congrats, everyone (like I deserve it-- NOT!) I am so proud of my daughter and yet I am not looking forward to her moving away from home and my losing touch with her as she becomes immersed in her medical studies. She has lived at home all her 21 years and has been wonderful support and companionship for me, especially the last six months that I've been off work. From a very early age she has been a self-starter, a very low-maintenance kid -- especially when compared to the others (see the above ). I will really miss her independent and hard-working spirit and her enthusiasm to tackle everything that comes her way.

pomegranate wrote:

abmia22 wrote:Its not so bad for you. How about living with PN as a 25 year old who will probably never get to have a family or a wife now because of the penile pain. At least you got to live your life somewhat. Not that im downplaying your case, but I just woke up one day and this pain appeared out of nowhere, what I would give to have a chance for a normal life again...

I think one can have an extraordinary life, even when one has a disability.

...says this 25 year old.

I refuse to be defined by my limitations.

Plus, medicine is constantly improving. I think there are answers yet to come!

WORD.
And yes medicine in the area of pelvic pain is improving quickly. I compare the "care" I got when my pelvic pain started in the 1980's, to what is being done now: it's like night and day. I did a research paper in college on "care" of women with Interstitial cystitis and found a published case study from the 1950's where a woman did not respond to pelvic pain treatment and so she was given a transorbital lobotomy. That's "published peer review literature" for ya! After that, the care I got in the 1980's didn't seem so bad after all! But really, when you look at it over a timeline, there have been huge improvements in the field of pelvic pain and you young people will be cured by the time you're my age (turning 40 next month).