What action can we take? (It's not only about adhesions)

From: AIRPLANE (jetstamp@yahoo.com)
Fri Sep 19 00:04:19 2008


I don't know if anyone has mentioned contacting their state and or federal representatives. I recently visited the IFFGD website (GI advocacy-type site) where they are encouraging people to write their representatives urging them to support the IBS Research and Treatment Act. Of course, IBS is the overused, abused 'preferred' vague diagnosis created by doctors to,IMO, deny fair, adequate investigation and subsequent medical treatment to patients, mostly women.

Adhesions,as well as some other issues, such as pelvic pain, pelvic floor prolapse, pelvic floor dysfunction, hernias in women, are not taken very seriously-if they're even acknowledged-by the bulk of the medical profession. Many of these other conditions co-exist with adhesions and I think they reinforce each other, probably due to undetected inflammation. I've read that it is not uncommon for endometriosis to go undetected even with testing, for example. You can have adhesions with no surgical history or only get adhesions after surgery or you can get additional/worse adhesions after surgery.

I visit a blog at http://www.pelvicpainmatters.com which is written by Bonnie Baumann who along with her physical therapist is writing a book on pelvic floor issues. It is an interesting blog- for one thing talks about attitides from doctors witnessed at a seminar that was given on pelvic floor issues. You can send her questions and comments. I asked about adhesions recently and you can read the answer there.

I do realize that men suffer from some of these issues as well, but I still feel that where women are concerned, the attitude from the medical profession is still in the dark ages. I will never forget the 'amused' look of many of the doctors' faces when I'd try to explain my issues and the on-the-job incident that triggered them back in 1984. They think I made that whole story up. It would becaome apparent within a minute or two that what I was saying was not going to be taken at face value. I don't have a college degree but I consider myself to be a reasonably intelligent person and always tried to plan carefully how I could accurately and concisely explain what happened and what my symptoms were but I always ended up being talked to like a whining child. If I didn't 'look' sick then I must be fine, I guess. Do men get treated this way as often as women?

If I mentioned words like adhesions, prolapse or hernia they would immediately give me the brush-off and want me out of their office ASAP. If I pressed the issue, they would become increasingly hostile and resistant to anything I had to say, or they would laugh. If they did anything at all, they'd give me the ol' convenient IBS spiel whether I had symptoms outside of the Rome criteria or not. Or they'd blame the uterus because I had fibroids which I strongly sensed were not the issue. I finally gave in to the hysterectomy but as suspected felt no better and maybe worse. More pressure than before too, probably bacause they took my cervix which I later learned is important for pelvic support but I did not know about that at the time.

And if you do get the IBS spiel for the umpteenth time, part of it is that "we don't know what causes it." And then they have the nerve to deny FMLA for appointments and flare-ups, which protects my job which pays not only my salary but theirs! Duh? They also refuse to provide adequate pain relief or referral to a pain clinic. Excuse me, but, if, as you said, you don't know what is causing my pain and discomfort, how do you know how bad it is or isn't? They know they've got you over a barrel here because the burden of proof is on you and of course there is no way to make them actually feel your pain or any other discomfort. If they give you anything at all, it's usually anti-depressants which are thought to relieve pain but so often the side effects outweigh any benefits, if any. You wonder if it's really a way to sedate you and keep you off of their backs because they don't want to have to deal with what they have decided is an emotionally unfit patient.

If you're not aware of it, the word 'hysterectomy' comes from the word 'hysteria'.Granted, that word was coined a long time ago but I believe that the old adage 'the more things change, the more they stay the same' applies here. When you visit a doctor, if you are calm- despite the pain and other issues you may be experiencing- the doctor may note that 'the patient appears to be in no acute distress'. On the other hand, if you are upset or emotional, then what you really need is psychological help or you are just being typically female 'hormonal' and it will pass. If you are angry, it's not because it is warranted but because you are mentally unstable.Don't know if any of you have read your medical records but I have! No matter what your demeanor, you just can't win if you're female. And unfortunately I get this from both women and men doctors, which is disappointing. And if you go to a new doctor for a '2nd opinion' they always want your previous medical records and you often find they have already made their minds up about you before you even meet them.

I repeat, I DO realize that men have some of these issues too, but I still think that because a lot of them affect a much larger number of women, that that is a big reason why the research has been slow in coming. I know that funding can be tight, but then if these issues haven't been taken seriously or are not even recognized by some in the medical profession, which as you can tell has been my experience, why go all-out or rush to find better diagnostic methods and treatments anyway? Makes sense to me!

Again, for what it's worth, if you haven't done so already I sugest contacting your federal and/or state representative. It is only an email away. However, my state's website said that if you wanted a better chance of having your letter read you should keep it brief which, as you can see here, is not easy to do if you want to get all of your points across!

It's not just about adhesions. It's about taking the patient's explanations at face value, respect, and fair, adequate investigation and offering whatever treatment is currently available, which insurance needs to start covering (like pain meds, trigger point injections) and the need to find answers to these devastating, seemingly invisible, life-altering conditions.


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