Health Organization for Pudendal Education

Hi.

Has anyone else here experienced the following:

Due to their lack of knowledge and subsequent egos, "physicians" accuse you of being a drug-seeker, accuse you of being an attention-seeker, tell you that you need psychotherapy, you're yelled at and/or virtually laughed at? Have they treated you badly because you just might have some knowledge about your own body? Have you been treated badly due to your own knowledge base, i.e., you've done a lot of research????

Am I crazy or is it just me???????

... In excruciating pain and sick for far too long (years), lost, confused, frustrated, angry, fed up, worn out, and wish I could just wake up dead.

I think pretty much all of us have been through at least some of that same treatment, it is a standard rite of passage. Welcome! check out my signature, you and have had similar syndromes for approximately the same amount of time.

I recommend the Tarlov Cyst Disease Foundation website which lists physicians who will not tell you to "go home". Any questions you have, use the "contact us" form, and put in your phone number. You will get a personal call from the Foundation President who has been known to stay on the line a couple of hours ensuring that you are informed and know how to get help.

Don't dismiss psychotherapy, please. It is very hard to deal with long term pain and psychologists can help us a lot. After the lifestyle changes, CBT has helped me more than anything - including all my meds.

Edited to add : Re-reading this morning, that came across as a bit abrupt - I'm really sorry about that, I didn't mean it that way at all. Psychotherapy has been the thing that pulled me out of the depths and made life start working again, when the meds just weren't doing it. It is next to impossible to have pain at the level we have to deal with, and still stay the same as we were before. Non-stop pain changes everything.......

Don't give up, please, please. We've all felt as you do now. It is so hard at the beginning when it feels as if you are all alone and there is nothing sure in your life but the pain. Once your pain is under control, you will feel differently, I promise.

I'm on my own journey to figure out my pain and pelvic situation, so I don't have much to offer except that my heart is pouring out to you and I will be thinking about you.

cari

Hi JAT,
No, you're not the only one who has been abused by the medical community. I have also been yelled at, treated with hositility, disrespect and deemed a head case. Prior to my diagnosis of PNE, I went to a former PCP seeking an MRI for my lower lumbar region. I was denied this imaging and was instead given orders for an MRI of the brain!!!! Shame on me - even though I was repeatedly treated poorly by multiple physicians, I was shocked every time at their behavior towards me. To this day, I'm in awe of physician egos and how they turn their hostility and scorn towards patients, based on THEIR ignorance. However, I must point out that not all physicians are like this. Needless to say, you can't count on the doctors you're currently seeing to point you in the right direction. I'm very grateful for the information I've gotten from HOPE and hope you will find this site as a valuable resource as well.

Calluna - I completely understood what you were trying to express by endorsing psychotherapy. I agree with you! Seeing a therapist doesn't mean you're "crazy" nor do I think it diminishes the painful situation we find ourselves in. I found it very helpful to vent to someone about how I was being treated by the medical community and it was comforting to have someone reassure me that indeed - it wasn't all in my head.
Warm regards,
Karyn

Yes Calluna I also identify, I went to counselling on my nice (locum) doctors advice and thought, well why not. I couldn't believe the amount of 'stuff' that came pouring out and it did help, although also pinpointed the fact that my problems were out of my own control. However the way I dealt with those problems mattered such a lot.
I have had the most awful consultations with many doctors like many here JAT. Not that I have been specifically confrontational. they just don't LISTEN. I felt like I was bashing my head against a massive brick wall. I agree that the ones with the biggest ego's are the worst.
Thank goodness there are more and more who are not stuck in their blinkered 'I know it all' confines, as if medical science has stopped evolving and there is nothing more to question or understand.
I would urge you to forget about them, water under a low bridge, but hopefully you've missed the flood and WILL get better treatment after help and advice here.
Take care

Calluna: I should have clarified my comment with respect to physicians informing me that I need psychotherapy. In reality, what they were doing was writing me off alone as a psych case. On the other hand I fully understand the benefits of psychiatric assistance; been there, done that. I did have a great psychiatrist who had helped me a great deal over a 10-year time frame. Initial surgeon, due to his inability to accept the fact that I "didn't turn out perfect" in his eyes caused me to then have post traumatic stress disorder and ultimately major clinical depression. If it weren't for her (psychiatrist), I wouldn't have done the many positive things that I needed to do; for one - call him on his despicable faults and therefore shouldn't be practicing medicine; at least not in the communicative department,i.e., one-on-one patient/doctor relationship. Don't get me wrong; he's an excellent surgeon (one of a handful in the country -if not the world), however unless one is under anesthesia, he truly has no business interacting with his patient's - narcisstic, egomaniacal individual. I heard countless (reliable) accounts of what he did to me and to many others. On the note of my now former psychiatrist; after 10 years she chose to go solo. Recently (2/2011?) I went to see her for the first time since her practice status change and immediately upon entering her office I new something had changed dramatically. She was not the same person that I had once known and ultimately during that visit turned me off. I tried to give her the benefit of the doubt, however, she, for whatever reason, suddenly was unable to step outside of the box which she had never done before, and quite honestly it felt as though she was merely a female version of above-mentioned "surgeon" whom she initially had helped me to "nail." Go figure. The latter hurt me immensely, I was (still am) in immense pain (and worsening), and what occurred at the office visit made the entire scenario much worse. I probably still have some depression due to nonstop pain and illness and at some point should seek support in the psych arena. Note: Fortunately after my decision to stop taking an antidepressant, mentally I feel better. Perhaps it was time to stop it anyway - I'll never know.

Calluna, I appreciate and respect your heartfelt comments. I apologize however, for not being clearer regarding my initial post.

calluna wrote:Don't dismiss psychotherapy, please. It is very hard to deal with long term pain and psychologists can help us a lot. After the lifestyle changes, CBT has helped me more than anything - including all my meds.

Edited to add : Re-reading this morning, that came across as a bit abrupt - I'm really sorry about that, I didn't mean it that way at all. Psychotherapy has been the thing that pulled me out of the depths and made life start working again, when the meds just weren't doing it. It is next to impossible to have pain at the level we have to deal with, and still stay the same as we were before. Non-stop pain changes everything.......

Don't give up, please, please. We've all felt as you do now. It is so hard at the beginning when it feels as if you are all alone and there is nothing sure in your life but the pain. Once your pain is under control, you will feel differently, I promise.

You don't need to apologise, JAT.

What a pity about the psychiatrist, though. They do suffer a lot from burnout, and maybe that has happened to her. It certainly sounds like that may be the case.