Doctor not listening

[seattlegirl]

This is my first time posting here, although I've been looking on as a guest periodically. I'm 27 and was diagnosed with IC in 1999. My symptoms have been relatively under control in the last few years. Obviously I have flares, but I've gotten to a point where I feel like I understand my body and what to attribute to IC.

I've been having a new kind of pelvic pain and really think that it is gynecological, rather than urological. I know that it could fall under the umbrella of IC symptoms, but I don't think that it is. I feel that way for a number of reasons--partially just my gut saying so, partially that the symptoms are so dramatically different than anything I've experience with IC. There's also a family history of ovarian/breast cancer, so I don't like to mess around with that stuff.

Anyway, I went to my (brand new) PCP yesterday, and had hoped she'd do a pelvic and a pap to rule out all of those things. Instead, she told me she wanted me to see my urologist first (which of course means I'm going to have to wait for a month). I swear...I turn into a totally different person in a doctor's office. It's the only place where I don't feel comfortable to assert myself. So I started crying. She said, "if I did things by the book, I'd do a pelvic and look for a whole host of gyn problems. But I'm not a by the book type of doctor. I'd rather listen to your story....bla, bla, bla...plus, if I did a pelvic, I wouldn't find anything like cervical motion tenderness, and all I'd do is confirm that you're tender in your pelvic area." After that statement, I didn't have the guts to say, "Yes, please, I'd feel better if you did a pelvic." How does she know what she's going to find without doing one?

I'm frustrated, because there's no way (short of trial and error with treatments) to confirm that these symptoms are IC-related. I'd much rather her rule out all of the other "by the book" red flags while I'm waiting for my appointment with my urologist.

So, here's my questions:
1. Do any of you ever have problems getting a doctor to consider other diseases/conditions because they're blinded by your IC diagnosis?
2. Any advice on getting over that anxiety?

Thanks so much!

[jean fleur]

Hi seattlegirl... I am a Portland girl :) in the same situation... My urologist wants me to do a hydro to confirm IC and relieve symptoms... but I feel that I am having some gyno problems as well... I have gyno appointment tomorrow and I am going to explore all gyno possibilities for my symptoms prior to accepting the IC diagnosis. I have done a lot of reading about IC and endometriosis and how they go hand-in-hand, plus my mom had endo, which prompts me to do this. I have also decided that I should make an appointment with either urogynecologist or uro or gyno who is familiar with IC. We'll see, but I think because they know of all the "sister" diseases of IC they might not be blinded by the IC diagnosis alone... I have found some local names of doctors on this website as well as on Elmiron's website. Let me know if you want me to forward the links to you. Also, I have had rheumatoid arthritis for 10 years now... when I started having bladder discomfort and pain, my first uro told me it's just a complication of RA :rolleyes: basically, ANYTHING I had in the last 10 years, the doctors just say "you have RA, what do you expect?" Anyway, I am not giving up yet!! I will keep searching for better doctors.. which is so frustrating!! My current symptoms are: urgency, frequency, constant bloating and dull pain in the abdomen/pelvic area with some sharp pain once or twice a day, which is relieved by analgestics for 1-2 hours, spotting on and off, both vaginal and hematuria, EXTREME fatigue, joint pain and stiffness, and last but not least depression and feeling completely alone in all this and guilty/embarassed to be such a weakling...

[Imustpee]

Welcome! :hi: I live across the water in Bremerton! I see an awesome uro in town that understands IC.....contact me if you would like more info..

[Tracey5399]

Hi,

I would definitly go see an IC friendly doctor. ICA can send you a list of IC friendly doctors in your area. 1-800-help-ica
her name is ann-marie and she is very helpful.

As far as the anxiety part i have that also. So hard especialy when your not feeling well have to deal with alot of these doc's. Just remember this is your health and your body and you deserve the best treatment you can find and to be heard! just tell yourself that and maybe it will help you be more assertive in the office...pleasant but assertive.

Good luck,
Tracey :)

[seattlegirl]

Thanks for all of the input. Just to clarify my issue--I have a great urologist that I see for my IC. The bigger problem is (as jean already pointed out) getting my primary care doctor to understand that not everything is IC related. I would love any advice on being more proactive/assertive with that doctor.

Or maybe I just need a new primary care doctor. It wouldn't have been too much for her to do a pelvic and alieviate my concerns. That way I'm not worrying between now and when I go to my uro.

[jean fleur]

Hi, I've given up on primary care doctors long ago... If you are concerned that you might have a gynecological problem, I advise you to find a gynecologist who understands IC and start seeing him/her instead of trying to find a new good primary care doc. I found a gynecologist with IC experience through Elmiron website. :) Primary care doctors are a step above ER doctors, most of whom (ER docs I mean) I admire very much, because they are there to save lives, but not treat specialized chronic conditions, they are just spread too thin!! Besides, most insurance plans don't allow primary care docs to order uro/gyno tests you might need anyway! Good luck!

[ICNDonna]

I wouldn't trade my primary care physician for anyone else. He's totally caring and has been caring for both me and my husband for over thirty years now. In that time, he has never even once failed to make a referral if I have a health problem. To me, it's very comforting to know he is there and is keeping track of my entire health care picture.

Donna

[kstearns]

Hi, I posted a note here a few days ago about my first uro experience and the fear that I do have an IC syndrome...

He put me on Sanctura. Does anyone have any experience with it?

I felt that it made me worse and I stopped taking it .. no difference really. If anything I'm a little better.

I have no pain--the symptoms have been frequent urge/urination--and I mean frequent.

I'm scared to death of the procedures and am beginning to think this is all voodoo science anyway--that docs don't really know what is going on or why.

I know that's cynical but I'm discouraged.

I would appreciate a response...I have a lot of questions.

Thanks, Karen

[ICNDonna]

Karen: Sanctura is a smooth muscle anti-spasmodic and can be a huge help if you're having bladder spasms and frequent urination. If it isn't working for you, I suggest you contact your uro and ask for something different.

The Patient Handbook at http://www.ic-network.com/handbook will help you understand the diagnostic procedures you may be facing.

IC is sometimes a stubborn disease to treat --- what helps one patient may not help the next patient at all. It took time for me to find the most effective treatment options for me, and to learn which foods and drinks are a problem for me, but it's well worth the effort. I've had diagnosed IC for 31+ years now and I have more good days than bad.

Warm hugs,
Donna

[mary124]

I've only had to switch PCP a few times, mainly due to insurance. This last time though, I switch due to I felt like the doctor just wasn't listening to me, rushing me in and out of the room. ( Plus the fact, I was really sick the last time I was there and he wouldn't give me a referral for an x-ray or anything-- seems (I was in his office every month or 6 weeks because of resp.infections and the antibotics was for only for 5-7 days, suppose to give you 10 day worth for most of them anyways- I found out by my new doctor)--anyway, this doctor I'm going to now, sits down and TALKS AND LISTENS to me (one time we were in the office for over an hour-couldn't believe that!! This wasn't for the first visit either- just trying to figure out what was wrong with me.
Sometimes I wonder where this doctor was 10 years ago?