We are the best looking sick people I've ever seen

[kat]

I'm not sure if I'm the only one who has noticed it, but I would like to point it out so we can all be proud of it.
We are some of the BEST LOOKING people!
We are active, cycling, weightlifting and always on the go. We have all cared for our bodies more than the average person, in my opinion.
Not one person I have talked to said - I was just laying around in life and then developed PN.
If you put us all in a room we could be models.

I admit that at times I feel I'm being punished for being over active and I've heard others say - I did this to my self - or - I was asking for it.
I take my pain pills and play with my nieces and nephew and I know you all play with your kids knowing that tomorrow you will be paying for it.
It is odd to me that we were all being healthy and then developed a condition for being - overly active.

Just wanted to tell you all how beautiful you are inside and out. I know you get tired of people saying (You look good) since we feel like screaming, but from someone who truly understands...

You are beautiful.

Loves

Kathy

[HerMajesty]

LOL I aquired my pelvic pain syndrome in 1985 from injuries that occurred on a rather intense backpacking trip. It was exacerbated in 2004 by a childbirth injury.
So I suppose you are correct, if we all just lay around all day, and popped birth control pills, nothing bad would have ever happened to us.
Personally I prefer the backpacking, and the babies, and the pain. ESPECIALLY the babies - they are the most common cause of female pelvic pain syndrome and DEFINITELY worth it!

[HerMajesty]

Sunil you said you got this at age 17 - DID you play a sport before then? Your issues seem to stem from SIJ injury and I had wondered if it was a sports injury.
Yes, this is a fallen world and life is full of troubles here. I am glad this world is not all there is, and that there is God to lean on.

[HerMajesty]

Sunil,
I can't speak for everybody but I was horribly abused by Docs as well.. When I was 14 and got interstitial cystitis with such severe pain every day, the Urologist my parents kept bringing me to did not believe me. Since he did not have "evidence" he would not even give me an excuse from gym class. Everything he did to me was horribly painful but he said it "shouldn't hurt" because it wouldn't hurt a normal person. He wanted me to see a psychiatrist but I knew it was not in my head and refused. He kept asking me if I was sure I was not having sex (!!??) When he finally diagnosed me via cysto / hydro 2 years later he excused himself by saying I should not have had IC as it is an "old lady disease". Then I was so relieved that I was diagnosed thinking now I will get good treatment, but instead the torture got worse. Fortunately IC is easier to self care than PNE and I got out of that butchery by helping myself and not seeing another Doc for 20 years.
Then when the PN started, it was the same nightmare with the Docs all over again, except Thank God now there is internet. I had to self diagnose online and twist some idiot neurologist's arm to get a referral to a pelvic floor PT I found online - then finally the nightmare was over as she got me in with all the right people.
I did a paper on IC in college, reviewing the literature. In 1900 it was called "neurotic bladder", and in the 1950's I found a published case study of a woman who kept complaining of IC pain after "treatment" so she was given a transorbital lobotomy. This was so well thought of that it was published! So you are not alone. Pelvic pain patients have been abused for centuries probably BECAUSE it is a majority female disease, and also involves "private parts".
I am sorry for you Sunil, that you were injured so young and yes it sounds like sports injury. This is the evil that people do to each other, not just in medicine but in many ways throughout history, including as you know racism. All we can do is not be part of the problem and love our neighbor as ourselves, try to spread that love like a virus! The past just has to be accepted. I do pray that you lean on God for this.

[HerMajesty]

I am sorry you have what I would consider a misunderstanding about the nature of the God of the Bible howevere this is hardly a forum for religious debate so I will stick to just being sorry.
I must admit I have no similar misapprehensions about the God of the Vedas as I have no familiarity whatsoever.
We do love ourselves even if we think we do not, this applies even to you Sunil - when we are hungry we feed ourselves, when we are thirsty we drink, when we are in pain we try desperately to get help and relief for ourselves. If we all loved our neighbor with even that much love this world would be a very different place.

[kat]

Sunil - I hear you about the abuse from children, docs and the church.
I think you have a good understanding of what being a fighter is and I know you have more rounds left in you. I'm sending happiness your way.
I'm 5 foot, weigh 98 pounds and was flat chested. I was ridiculed from all angles. Being flat meant hate from men and women and being pretty meant hate from women. Because of pain I never was into sports because flair ups caused me to quit.

Docs felt like they were raping me when they shoved their instruments and hands inside of me. I was too young to understand that they were abusing me.
After many abusive procedures and surgeries the docs decided it was in my head and they started giving me meds I refused to take because I knew my pain was real.
The church told me many times that I was welcome but that I could not receive communion due to some of the medical procedures that I had. I can't reproduce so I had my fallopian tubes removed and that pissed the church off big time.

I have gone back to the beginning and I believe in one God that is in all. Nature, air and everything. I try to believe that all people are good deep down, but I still wish PN pain on all the docs that abused me. I know that is wrong, but I'm just not over it yet.

Surgery was like my birthday. I am starting from scratch. I'm far from healed from all the abuse the docs did to me, but I have a great man, a supportive family (even thought they really have no idea what PN is all about and a very intelligent and gentle PT. I am finding my way to the life I was supposed to have the first time around and I pray that you will as well.

Life is truly unbearable at times and you seem to be handling yourself very well considering what you are going through.

Bless you for not giving up the fight.

Kathy

[chloe]

Kat,

Your post made me smile! It brings back memories of when I was first being diagnosed. An arrogant urog/gyno said to me "Well you certainly don't look sick." Little did he know I was hanging on by a thread. I asked my husband what I had to do to be taken seriously...not take a shower for a week and come crawling into the doctors office moaning? I always kept myself together - it was the only thing I had control over when PNE struck.

I got PNE as a result of overexercising/weightlifting for 15+ years. I am 3 years post op now and doing very well, thank God.

Take Care,

Chloe

[helenlegs 11]

Well I just fell over, but I still want to be in the "We are the best looking sick people I've ever seen" club.

Thanks for the fun post Kat, made me smile. . . . . and they ARE laughter lines !
Helen