Getting very frustrated at family!

[BG0013]

Hey everybody.. Lately I've been growing very very mad at my family, its growing way past frustration. I am 22, I started getting symptoms at 20. I go to PT once a week, do my stretches, and try my best to do relaxation (my PT taught me different ways). My mother keeps insisting to keep going to the doctor, to keep getting test after test.. I just had an MRI, which of course turned up nothing.. Next, is a cat scan. I'm ready to explode, as this just makes things more stressful, seeing doctor after doctor for no reason. Tomorrow is my cat scan, and is the last test I'm going for.. Its a shame when you have family that can't just accept that it is what it is..

[DavidinLA]

I hear you loud and clear. Trying to Explain this to family members adds to the frustration of this condition. I have family members who always are insiting that I see my HMO doctor when I have already visited chronic prostatitis / chronic pelvic pain syndrome specialists. I try to tell them that the HMO doctor will not be able to do anything, but they just do not get it.

I guess a big part of the problem is the lack of awareness of this problem. People would be under the impression that medication or surgery would correct the problem.

[GP2]

Without sounding too sexist I have found that women particularly (at least in English society) scoff at alternative therapies and still rely on the traditional health services and regular doctors to treat medical woes. If you think about how many conditions (IBS, migraine, crohn's disease, pelvic pain, fibromyalgia, chronic pain) that traditional medicine has failed to find cures for or even any effective treatments no wonder alternative treatment is on the rise. To put it bluntly - your family & friends are ignorant of this condition so don't waste your emotional energy trying to explain it to them. If you need their support find a way of telling them in a way they might understand i.e. I have chronicly tight muscles that cause me a lot of pain & I need long term treatment to fix it.

I find that it is easier dealing with chronic prostatitis / chronic pelvic pain syndrome on my own - I'm single with a supportive yet very naive / "head in sand" type family. I prefer people treating me like they always did & not worrying about my health because that only would increase my unhappiness. Hence hardly anyone knows. This may not be the approach for everyone but my thoughts are the less I empower chronic prostatitis / chronic pelvic pain syndrome the better - people worrying about me doesn't empower me!

This way you have to be brave & drop the self pity but I'm becoming one tough f**ker these days dealing with chronic prostatitis / chronic pelvic pain syndrome & taking a different view on life & problems all together so thats the plus side!

[scoobysnacks]

My wife knows, and is very very supportive. We are in a bit of a financial jam right now with three mortgages. The real estate market here in the states is not a sellers market at the moment. Anyways, she is still okay with us going in December to the Stanford clinic if I think that is what will help me. Though I'm a practical person and a 5k trip may not be the best right now for the family. But, Ill get there.

My parents know, but when I got this I was 25 and about to leave the home for good and graduate law school. They know I quit lifting, my favorite past time, and I told them its because of a strain in my pelvic muscles, and I never really go into any further.

My wife bares the brunt of my emotions. Its good to have someone. I hear you though.

I would direct your mother to this site, and have her read the first page describing pelvic myoneuropathy. If they really want to help you, they should put that money into sending you to Stanford.

With this condition I've found two things, besides that is sucks royally. Uh hem! Anyways, its that you have to play doctor (educate yourself) and you have to help others understand.

I mean, I had never ever in my life heard of something like this happening to anyone, doesn't run in my family etc.

Good Luck!

[scotsman]

I gave my parents 'A headache in the pelvis' to read and that helped a lot with their understanding.

Richard.

[SickofCP]

My mother is understanding....my father is not in my opinion.

I have found that the way some family reacts can be hurtful emotionally to a chronic prostatitis / chronic pelvic pain syndrome sufferer. Try to make sure that this does not raise your anxiety.

[Richie]

Ditto on the family issues. My father and I had not spoken for 4 years before he passed last year. These issues are definitely part of the core of my problem.

I still get flareups when I think about calling my mother.

Best to get these issues behind you if possible. Sometimes that means facing them first.

[Clay]

I guess one advantage of being older is that you don't have parents to drive you nuts anymore . Is that a good thing or bad thing?

I'll never forget my wife trying to explain to her parents about my post traumatic stress syndrome. That term hadn't even been invented yet. My FIL listened and then said he just couldn't understand why I couldn't get ahold of emotions and get on with life - sometimes you just have to pull yourself up by your bootstraps. So much for support.

It did, I suppose, help me strengthen my resolve to be independent of my family. I've looked for my support outside that network and among friends who have empathy instead.

[LightningTree]

My parents and brothers are extremely supportive. As my parents had twins who have both had this, they understand that this isn't some weird personal choice to suffer (as some rejectionists will assume when forced to think about it.) Yet we all maintain a positive attitude about it and that has helped me tremendously.

A lot of other people we know just don't get it. My mother in law repeatedly wants to know why I just don't get better (as if I am not 99% better already.) Since I have generally improved over the years, when I get a brief flare-up, or things don't improve for a while, she seems surprised. The worst thing that every happened to her was carpal tunnel syndrome, and she had surgery to correct that. She doesn't understand the full range of human suffering. (Nor do any of us, but we know a little more than some.)

Many cannot fathom something for which 2 years is generally required to improve significantly. Think about it, bones heal from a fracture in a month or two, and the pain can go away in less than 6 months. So why would this take so long.

I try to explain to them that it is like crooked teeth, that they don't just uncrooken themselves, but to no avail, most of the time.

Eventually you will reach a stage where you come to terms with the animal condition of ignorance, and how ignorance of certain forms of suffering is both a blessing and a curse in Western society. It will stop making you angry, and you will start to think about where you are lucky, and what you can do to help ease suffering that others have that we do not, to which you will have a better understanding now than before.

[Sleeper Service]

So true, LT. I've had this for eight months now and although it has been getting better (particularly in the last couple of months) it's difficult to make people understand that this can take long months or even years to get better.

Fortunately my wife is an angel and very understanding and my parents are good too. My step father even admitted that he has urinary difficulties (he has to pee three or four times to completely void). I've tried to get him to check himself out for BPH but he thinks it's nerve damage from a spine op he had a few years ago.