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Dear all,
This past week, I had two appts. at the CFS clinic. The reason for my asking to be referred there was primarily to see i they could offer some therapy (physical or psychologcal) - I have had two very bad experiences with seeking out my own therapists so, now that I feel physically able to tentatively begin therapy, thought that a GP referral to the clinic might open up 'safe' avenues to experts. I am uttrely disillusioned (again) with the medical profession. Alarm bell should have started ringing when I realised that this Prof. is a psychiatrist - heading up the CFS clinic no less (so that tells you what his thoughts are about CSF/ME). He claimed to have just reviewed a paper on IC, so considered himself to be an expert on it (he has also reviewed many papers previously and has researched IC at his clinic - his claims). Despite having seen patients with IC at his clinic, he refsed to acknowledge that IC may have bodily presentations as well as the bladder , including chronic fatigue, he told me that all other diseases have uniform symptoms and IC is no exception (in other words, because frequency is not my main symptom, he intimated that it may not even be IC), he thinks IC is caused by trauma in childhood, and he categorically stated that all my other symptoms are in no way related to what's going on in the bladder. His diagnosis - depression (yawn) and lots and lots of lovely medication to alleviate it (and "it's such a apity that I won't take what he suggested because he has seen patients' lives turn around overnight on this particular drug". Of course he has). He may be right (not about the medication) - but I was utterly taken aback by his refusal to accept IC and its related symptoms as physical. I know that this is nothing new and we have all been there - but really? REALLY? in 2012, nearly 2013, we, as a society, still know NOTHING (apart from Matia) about this very physical illness? Anyway, this is not the point of my post.
As women with IC, we are also in a unique position, perhaps for the first time in history, to have held some personal and social power in society. We work, or have worked, we hold responsible positions and we have power, perhaps, limited, but power nevertheless. Can we not try to begin to educate the public (and I lump this 'expert' in with the gereal public) in some way, to get rid of these terrible stereotypes that women presenting with our symptoms are somehow creating this illness psychologically? I have never suffered from depression or anxiety. To suddenly be told to search deep for childhood trauma (and incidentally, who has had a perfect childhood?) as an explanation for my non-existent physical symptoms, is the traumatatising part. I know that Matia is trying to educate - but she is a single voice and is busy treating patients. What can we do to at least get the message across that IC is an actual, physical dysfunction, and not a psychiatric illness in 'overly hormonal' women? Furthemore, what can we do to get the message across that IC, in Catherine SImone's words, 'is not just a bladder disease'? We have made some progress - urologists can now see the inflammation and physical damage in bladders - but we are still stuck at exactly the same stage where urology was years ago with bladders, with the other symptoms that come with IC. I am in the position of having many, many symptoms other than the bladder. I know that these are all related to the yeast overgrowth - but I find myself every day wishing that I had bladder symptoms only, however terrible, so that I would be believed when I say that I am exhausted, or that I have brain fog, or tinnitus, or visual disturbances, or dry eyes, or burning muscles (and the list goes on). I know that this is one crappy disease in a sea of many crappy diseases that the human race suffers from, but we need to do something about IC. I know that we, on this forum, have all turned away from conventional medicine, for good reason, and we can try all we like to be brave and strong and conquering of this illness but actually, my heart was broken just that little bit more this week...Surely we can do something?
Hi Vin, It is good to hear that you feel better and able to get out of the house, even make such steps as seeing a doctor! It is big, physically and emotionally! Think about it. I don't see any 'specialists', consultants, and experts any more, whether it is medical or any other service. I learnt to research, analyze information, and make my own mind, mostly because of IC and great damages done by people, who might've wanted to make a positive difference, but didn't know how. The dangerous part is when they claim that they're absolutely correct in their view.
I am not strong enough to participate in any serious movements. I learn patience from Matia and sort and put many things aside. "Then render to Caesar the things that are Caesar's; and to God the things that are God's." It is from the Bible.
I actually spoke with an admission commission from one of the medical schools where I wanted my daughter to attend. Independent thinker is not one of the qualities they encourage for doctors. They teach certain curriculum in med schools. Step to the right, step to the left and you get a law suit on your hands.
Actually, I disagree with you that current civilization doesn't know how to treat serious infection. We did know that, but we've forgotten. The industry is controlled by parties who have no business interest in us feeling better. I don't know if you remember any old school doctors from our old country who combined science with common science and didn't discount the power of nature, who treated us holistically (mind, body, spirit), who were responsible not to overprescribe antibiotics. They were much more successful in treating certain conditions than modern medicine that gives up on us unless we're willing to throw our brains out and follow the 'protocol'.
Please preserve your energy until you feel better. Sorry, I honestly don’t mean to be discouraging. Best wishes!
i meant combining science
i meant combining science with common SENCE. sorry.
SENSE, you got the point.
SENSE, you got the point. sorry again... fat fingers, no time. :)
Ouch, I"m so sorry that this
Ouch, I"m so sorry that this psychologist treated you this way! That is completely unprofessional.
Unfortunately however, the majority of doctors I feel , like to have a one shot solution to problems such as these. ( meds) . Also , if they are not common or easily solvable, they are deemed chronic and uncurable. I however would have to contend that. I have seen many miracles and improvements in my own body and others as a result of the holistic field and cannot advocate it enough.
I feel the same as you honestly about what is going on with me. When my friends ask what is wrong, I honestly say "my stomach", because that is what started all of this, however they do not know that it is also my bladder, intestines, bodily fatigue, and other things that I am dealing with which are really difficult. I wish there was a better title sometimes for it, so that they could understand how debilitating things can get, but you cannot understand what you have not been through I guess...
You are on the right path....these type of people are just those you need to steer away from. Remember your strength and follow your intuition always :)
One day they will figure it out...I feel that the world is turning back around and becoming more holistic minded as time goes on and there are realizations that prescription medication and covering up symptoms is not the answer.
Thanks everyone. Blondy-I can
Thanks everyone. Blondy-I can't do anything about this now either. I am far too ill and weak. It was more of a general call to arms. I am truly disgusted but more disheartened with these attitudes. A book that I have always enjoyed reading, "the psychology of the female body" by Jane ussher provides an historical view of the way that the female body has been pathologised. I am not for one minute suggesting that men with ic have it any easier - we know that's not the case - but I was really disturbed by "female plus invisible illness equals psychiatric illness" attitude. For example, I mentioned that I had dry eyes. He looked and said that they look fine. He then said "what do you make of that, the fact that you think they are dry but they are not?". We all know the implication there. Isn't it awful that we have to contend with this attitude? When I told Maria that I have dry eyes, she didn't bat an eyelid (pun intended :)) and said it's common. We, as in the ic patients, have to do something. What, I don't know. This can't be allowed to continue. On a more personal note, I am thinking of writing a letter to him, CC ing my gp. What do you think? Waste of time?
I think that what I am trying
I think that what I am trying to say is that we need to somehow (and I have no idea how because we are all ill) to raise the profile of ic. It's a devastating illness that ruins lives; yet so many myths and misconceptions accompany it. I have certainly heard the opinion from many, including urologist, that it's no big deal. They are wrong - but as long as the people with power continue to peddle these myths, we are all affected (and stuck).
Vin,
Vin,
Here is my two cents. I think that if this is something you are passionate about, it may be something you pursue with gusto when you are feeling better. I think your experience in taking this difficult road to health and balance may be preparing you for doing something amazing like getting the word out about what IC really is and what can be done about it. I have often wondered myself about what I will do when I'm stronger. I want to take this experience and help encourage and inspire others in some way. What you experienced with this doctor is not an isolated incident. How many women have experienced this sort of treatment from a doctor because of a doctor's ignorance? There are many fine, compassionate doctors out there, but there also many ignorant ones and women need to know that they have choices.
I am rambling a little, but what I'm trying to say is that in the future you might have a calling you never even dreamed you might have. I am tending to think that way about myself and I am really looking forward to the future! I mean seriously, let's use all this wisdom and courage and perseverance that we are learning to do something incredible with our lives when we are ready.
On a slightly different note - I thought I would mention an experience I had with my urologist when I told him that I decided to work with Dr. B. I consider him a wonderful, knowledgable, compassionate doctor who truly wants to help people with IC to feel better. He has been involved in research for better drug therapies for IC for many years and the drugs he prescribed to me over the ten years that I had IC before I saw Dr. B really worked (I just didn't want to go down that road anymore for various reasons). When I told my urologist I was going to start treatment with Dr. B, he said that he sincerely hoped it would work for me and that I would feel better (and I know he meant it). He also said that the only reason he couldn't recommend her treatment to his patients was because there weren't any double-blind studies done to prove that it works. In other words, I believe he was saying that he was totally open to the possibility of it, but as an MD he couldn't ethically in good conscience tell his patients to do it because there was no proof in the form that the medical community uses to provide validity to a particular treatment. I appreciated his honesty and integrity in saying that.
I also know, however, that personal testimonies are proof that this treatment works. My cousin went through Dr. B's treatment several years ago for IC and she is doing fantastic, but it took her a while to get better. There are also a bunch of people on this website who posted their stories. And we see posts on the forum of people gradually getting better. I am hoping to see my urologist when I am better and tell him of my experience so that he might look into what Dr. B does a little more closely. I will probably take her dissertation and hand it to him. I think he is the kind of person that would take it seriously, but the evidence of my health would need to be there. This doctor is well-known in the IC community because of his commitment to research. Maybe God put him in my path for a reason bigger than just my feeling better before I decided to go with Dr. B.
Vin, maybe your experience with this obviously ignorant doctor happened for a reason. And you can make something good come out of it.
I once had a Dr. who I told
I once had a Dr. who I told what I was now doing - she told me point blank that I was wasting my money. Sitting there in my little gown, I didn't have the nerve to say what later formulated so well on my mind. "Do you flipping notice that I'm no longer on all the meds that you were perscribing to me? Do you not notice that the PAP smears are now normal - after the specialist that you sent me to said that she was pretty certain that cervical cancer was unavoidable?" I left her and found the most incredible Dr. at the same clinic. I could go into him, tell him what I was doing, that Matia said that the side effects were within her normal range, but could we run some tests to make sure that I wasn't dying of some awful disease? He was more than happy to help me - totally non judgemental. He just quit medicine for an unknown period of time, and I now have another idiot!