How the world changes for a PNer

[Lernica]

Since I have developed PN, I look at the world a little differently. For instance:

1. hard-seated chairs look like instruments of torture;
2. "dining out" means going out for coffee after scoping the place out for a comfy armchair;
3. "going to the movies" means lying on the floor at the back of a movie theatre;
4. "work" means spending the day on the internet researching PN;
5. "working out" means taking a taxi to the local pool to go for a twenty-minute swim;
6. I tell my kids that I take alot of "vitamins"
7. when my child draws a picture of his family doing things they love to do, he draws a picture of me lying on the couch with an electric heating pad on my butt (while everyone else in the picture is playing hockey/biking/basketball)

Lernica

[HerMajesty]

That's really interesting about the hard vs. squishy seat thing, because to me a squishy seat is an instrument of torture but I can sit on a hard one.

Another way life changes:

If some kid on the playground tells my kid, "your mama wears boxer shorts", instead of being insulted my kid will say "yeah, her coolest ones have Popeye on them".

[pianogal]

so true. I've had pne for 8 years now, and it's nice to hear someone else reflect my own sentiments. although, I want you to get better!

also, whenever I see the commercial where the old couple gets the gift of their own seats from some stadium, i cringe.... ouch how painful, like they were given torture implements!

[scaredgal]

PN for me:

Wanting to go to my favorite restaurant sand realizing "darn they have wooden chairs"
Taking a cushion to my fav Tex Mex restaurant (with wooden chairs) or sitting in the bar area with cushioned booths until I get so drunk off margaritas I can't feel anyway!
Standing at work all day with the excuse "I've got bad SI joints" (well, I do have that too!)
Switching to flat shoes most days so I can do the above (stand most of the day) Just a real PITA for this avid fashionista and former shoe addict
Just loving the additional pain at the end of the day from sore plantar fascia from standing all day in addition to the PN pain!
Dreading conferences, meetings, interviews, etc. - anytime and anywhere I'm forced to sit like a "normal" person and trying like hell to pay attention to what's going on and not to the pain.
Loving nighttime so I can sleep and all the pain goes blissfully away.
Hating mornings (I WAS a morning person and an avid morning runner) because with that first darn pee, all hell breaks loose.
Hating being the money maker of the family and the benefits provider and the cook and the cleaner and going on with life like all is normal, when it damn sure isn't.

[wendy7]

Hi guys,

I love your introspect on life with PN. It can definitely change your life. But, one thing that is important to remember, is that your son had drawn a picture of you there watching him play hockey. That is the important thing. Whether it be standing up or laying down, he remembers you being there. Now, that is the life of a great mom with PN!

Take care,
Wendy

[wendy7]

Hi Sunil,

Keep up your great perspective on things. Having a good outlook (which sometimes can be hard to do with PN), can be helpful.

Some docs do look at women and men differently. They sometimes can look at women with pelvic pain and they think "she must be neurotic" and with men, they take a closer look. Although, I think with men, they tend to treat them for things they don't have, like Prostatitis and such. Finding a good doc who knows about pelvic pain, and is smart enough to recommend that patient to a PN specialist, if they believe that patient has PN, that is what we need!

Take care,
Wendy

[scaredgal]

Hi Wendy,

I agree - and this may be totally an incorrect statement - but it seems that men seem to do better than women post surgically and also they don't have all the complicating factors we have such as the darn female equipment (ovaries, uterus) and the baggage that comes with that - endometriosis, pelvic congestion syndrome, pelvic varices, scarring from gynecological surgeries, issues from giving birth, menstruation, crazy hormones from menopause, pregnancy, etc. Not saying at all that men don't suffer with this, I know for sure they do, but as women it seems we just have so much else in our darn pelvic region to complicate matters.....

[scaredgal]

HI Sunil,

I'm so sorry if you were offended by what I said - and I hope you understand that I know that women and men do suffer equally with this - and I know that men have their own separate issues with this hell. So I hope no offense taken....

The pudendal nerve is complex in both women and men and unfortunately has not been researched enough for all the angst it causes the sufferers. Yes, we are all in this together - but I was just speaking from the point of view as a female that I do wish we did not have all the other stuff inside of us that makes us have babies which makes us even more miserable with this condition.

[scaredgal]

Hi Sunil,

I agree and I sometimes wonder if many times erectile dysfunction in men doesn't have it's origin in pudendal neuropathy. They have many commercials in the US too - and they always attribute it to medications/hypertension/diabetes, etc. - but I've never heard once that problems with male sexuality can be related to the PN. Similar for urinary incontinence/frequency - for both women and men. I saw a medication the other day advertised for this - again, always attributed to other causes - but could a large majority of these cases be PN? I do wish condition was more publicized - as it is, it's an enigma. In medical school, they always tell the doctors, "when you heart hoofbeats, think horsees, not zebras" - PN is a zebra -

My hope someday is that we and our condition are no longer "zebras" so we can get the help we need and move on with our lives.

[GraceUnderFire]

Bottom line: this sucks for all of us, male or female!

Re: movie theaters - I found one where the chairs have arms that raise. We go at non crowded times with my pillows and I lie with head in hubby's lap (Be prepared to get strange looks, lol)

Eating out: mostly I go to places where there is a bar or a high top table, that rules out most breakfast places though!

A new "sucks about PN" I found out about today . . . for those that don't know me, I was the breadwinner in our home & hubby has the great benefits (thank goodness!). Anyway, I lost my home and had to declare bankruptcy after a lifetime of perfect credit. Today I find out that State Farm is raising my car insurance because of my "poor credit." I called and it didn't matter that I had been paying for the auto/home/life/renters since I was 18 (32 years) from them on time EVERY time. Nor did it matter that I had never had a vehicle accident (please dear Lord, don't make me eat my words on this one!) or any claim at all or that I brought all of my children to them, my husband and all of his family. On the plus side - I don't have anything left for anyone to take, so I guess I will just get the bare minimum insurance now. AAAAHHHH!!!!


Thanks for letting me vent
Grace