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Doctors Not Listening! Doctors Not Listening!

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Unread 03-23-2004, 09:21 AM
Doctors Not Listening!

Dear Sisters,
I'm having two separate things going on here, with two different doctors, and it seems like neither one is taking me seriously!

Problem #1 is a vaginal infection. I get the distinct impression that the gyn/onc is assuming that I'm overreacting to a vaginal discharge which is a normal side-effect to be expected during/after radiation treatments. (There are lots of details in an older thread.) How was I so sure that it was infection? a) yellowish-gray color, not whitish discharge, and
b) feeling very much like I did when I had the infection the first time.
I think I am finally beating the infection with leftover vaginal gel from an earlier infection, but if I had simply gone along with the doctor and done nothing but wait until my appointment (this Friday, which is over two weeks after the discharge started) ... I just think it's totally wrong to be told to wait that long. (I basically "pushed" the nurse into okaying my use of the vaginal gel.)

Problem #2 involves the drainage tube/bag apparatus -- different doctor -- inserted to drain a lymphocele. I get the distinct impression that the interventional radiologist is assuming that I'm overreacting to the decrease in the amount of output fluid which is the desired outcome of sclerosing the 'pocket' with alcohol. The problem here is: I know the tube is clogged, hence the decrease in output. How do I know it's clogged?
a) the material clogging it is visible in the entryway to the bag, and
b) this material is also visible along the length of the tube from my body to the bag, and
c) it's been clogged before, although not for this long, and I can:
-- feel the pressure on the nerve (causing intense pain), and
-- see lymphatic fluid being trapped in the tube, and
-- see that the site of the pocket itself is obviously
Again, my instructions were to 'just wait until the scheduled appointment.' At least this is "only" two extra days to wait, but ... that's two extra days of extreme pain that I am sure would have been alleviated by unclogging the tube as soon as I reported in.

I realize it's very presumptuous of me to think that I know what the lines of reasoning are in these doctor's minds. But I am pretty darned certain that is what is going on with their responses to these problems.

Does anyone else get the virtual 'brush-off' or minimizing of what you're reporting to the doctor over the phone (and then filtered through the nurse)?

It's not as though I have a history of calling about every little thing. It's not as though I have a history of making something out of nothing. And, since my doctors are a good half-hour's drive away, it's not as though I am seeking unnecessary visits with them. It's a bit of a hassle having to arrange rides.

It's pretty difficult to make me angry. Both of these doctors (and their nurses) have succeeded over the past few days.

Thanks for listening to me, over and over again. My DH listens to me and gives me lots of support, but it is also very frustrating for him because there is nothing he can do to fix the situation. Well, there's nothing anyone can do , except for the doctors... I am so grateful to all of you for your support. I'm looking forward to the day when all of this is over, when my visits here will be solely to offer support to others.

With love from your Very Disgruntled =empresse
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Unread 03-23-2004, 09:33 AM
Doctors Not Listening!


I don't have an anwer, but understand how you feel. I have 3 Drs, treating me and I don't think they communicate with each other. i am not very assertive. It does help that my huisband gets on the phone and demands answers and treatment when needed. It also gives him a way of helping me. Do you have someopne who could be an advocate for you so you can just concentrate on recovering?
Unread 03-23-2004, 12:35 PM
Doctors Not Listening!

I too would be furious! Do you have a hospital close to you with an ER? I would go there and tell them you are in too much pain to wait until Friday. They will treat you. They may even call in one of your doctors to do it! Take a book with you, and plan for it to take a few hours, but they will give you a bed to lie on and that's better than waiting in pain for days, when the problem can be fixed. OR call each of the doctors, explain that you are in extreme pain, and tell that you are going to the ER. See if they offer other solutions. If not, head for the ER and let the doctors there figure it out. At a minimum they can diagnose a vaginal infection and give you a prescription AND they can unclog your tube.

Your situation makes me wonder why we are paying doctors so much money for such poor service! Sheeze. There is NO other professional who could treat customers this badly and expect to stay in business. There is no reason that you should have to spend this many days in pain when they could fix the problem if they cared!

That's my 2 cents anyway! GGGRRRR..........makes me mad just to hear about doctors treating you this way!

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Unread 03-23-2004, 03:55 PM
Doctors Not Listening!

Thanks for your replies! Well, I was really assertive and it didn't change things much. I got the nurse's ok that it "wouldn't hurt" to use the BV meds I had at home. But I didn't think of threatening them with the emergency room. Maybe I do need an advocate...

Janie -- I suppose I could threaten the emergency room -- maybe they would listen then. I don't want emergency-room personnel messing with my tube, though. It would be just a threat, if I were to do it. Wish I'd posted this yesterday instead of today -- at this point, the appt for the tube is tomorrow. And since I have the leftover gel from the previous BV, the heck with the doctor and getting emergency to give me an RX. At this point, I'm almost at home stretch with the appointments and was mainly venting.
Unread 03-24-2004, 11:54 AM
Doctors Not Listening!

Empresse - did you try 'milking' your drainage tube? Did they show you how to do that at the hospital? My tube got clogs in it and I found the 'milking' broke up the matter causing the clog and got it out.
Sorry you are having so much frustration. Has your first Dr taken a culture of your discharge to check for infection?
Unread 03-24-2004, 07:59 PM
they're listening now...

Yes, they're listening now. The problem with the interventional radiology department is Too Many Doctors. I have not seen the same doctor twice. Who knows which doctor said for me to wait two days... not the one who saw me today. BUT he started off with arrogance and condescension, exhibiting precisely the logic I suspected had been in effect when they wouldn't see me until Wednesday.

I told him my tube was clogged. He said, "either that, or the output is just getting less because--" and I cut him off. I said, "My tube is clogged." Then he didn't even want to look at it until we got into the treatment room (this was all in the holding area).

He changed his tune really fast when he tried to put the contrast fluid in for the pictures. Said something like "My God, this stuff is like concrete!" So he abandoned that approach and, yes, took out the new tube and put a new new one in. Same scenario as last week.

When I got home, I had a message from my gyn/onc's nurse -- she wants to give me a few days of Cipro. (Oh, forgot to tell you -- my fever went up last night, and I called to report that this morning.)

So yeah, they're all listening now. Yay.
Unread 03-25-2004, 07:58 PM
Doctors Not Listening!

Empresse, this stuff really makes me angry.

I went to my hysterectomy dr. and had him look at my vulva in December. He told me to stop wearing pantiliners. I KNEW something was wrong and I argued vehemently with him.

After weeks of itching and burning, I went to a gyn/oncologist who specializes in vulvar disorders. My vulva looks like it went through a meat grinder (sorry to gross). Do you think that's strange?? Well, he thinks I have VIN II or III, and wants to laser my entire vulva after the biopsies come back. He first has to take samples from my vagina as well, but didn't want to do that until I heal up from this biopsy. I go back in two weeks.

He said, "It is NOT your imagination, you DO have dysplasia of the vulva, and I have NO IDEA what it is. We simply must wait till the biopsy comes back."

Some drs. want to treat ONE problem and ignore the rest. Beware of this mentality. It sounds like you have at least one dr. who thinks he knows your body better than you do. I'd say it's time to find someone else.

I don't know what your beliefs are, but I believe God gave us intuition for a reason. No one spends as much time with your body as you do. Trust your judgement!

Unread 03-27-2004, 01:55 AM
reply and update (long and detailed)

Dear Everyone,
Another very detailed story. I know it's long, and I tend to post "novels," but I feel like if I leave out a detail I will not be telling the experience correctly.

I'll update what's going on after I reply to Melanie.

Mel -- Reading your experience with this so-called doctor and his so-called DX of 'don't use pantiliners' absolutely infuriated me. You argued with him and yet still had weeks of itching and burning ... thank GOD you're being treated properly now, but I'm just near tears at the thought of your poor vagina getting so bad as to look the way you described. No apologies necessary for the description, BTW. Do I think that's strange? Strange is not the word for it. Scary is one that jumps to mind, along with painful, unendurable...

Please please update when the biopsy results come in.

You said, "Some drs. want to treat ONE problem and ignore the rest. Beware of this mentality." That really hits home, hard, after today's appointment with the gyn/onc who did the surgery. I adored her at first. Now I'm seriously considering going to someone new. Problem is, it's bad to go to one of her colleagues but this is THE hospital and department for cancer in the region. At this point, I'm not sure what my beliefs are, but I'm going to pray for the right avenues to open up so I can change to a different gyn/onc.

Okay, now for the update:
I called the next day (Thursday -- yesterday) returning the nurse's request to leave a message that I wasn't allergic to Cipro, and so the pharmacy called to let me know my Rx was ready. My husband picked it up on the way home from work, so I got one dose in on Thursday, and the second one Friday morning before my appointment.

(This has just begun to bother me: I don't have any known drug allergies, which should be on record with them, so what was the purpose of that phone call?)

The infection (wherever/whatever is infected) and the pain may or may not be related, but both are urgent problems. I have borrowed a cane because the prescribed dosages of pain rx are not managing the pain. And the fever was up when I arrived at the doctor's office -- I must have looked as awful as I felt, because the nurse took one look at me and said, "You look like you need to be admitted."

So the doctor comes in. She has me put my feet in the stirrups, but doesn't give me a gyn exam yet -- instead, she feels around the areas of leg/pelvic/buttock/hip pain to determine where I'm hurting. She asks me some questions about fever and I mention the discharge again, which she essentially blows off and goes back to the (yes, very important) temperature inquiry. Then she said she wanted to admit me for IV antibiotics.

I argued. I said, "I've only had 2 doses of Cipro so far -- it hasn't had time to work yet. Please let me at least wait a day, to give it a chance to work." She was reluctant, but agreed to let me go home -- she did see my point about the Cipro not having had time to work.

Well, then I was distracted from the vaginal discharge issue. She told me she wanted me to give a urine sample, and then we discussed medication. She said she was going to increase the frequency -- not the strength -- of the Oxycontin, and just write for more of the oxycodone -- no mention of changing dosage or directions. Then I had to remind her that she'd wanted a urine sample -- she was going to hand me the prescriptions and send me home. No look inside the vagina, no sample of the discharge (nope, Jads, no culture of the discharge) -- she's just assuming it's a UTI now. I was so relieved not to be stuck in the hospital that I didn't press the point.

She's going to be at a conference for the next 5 days, so I promised that if the fever pattern didn't show improvement over the weekend, taking my temperature hourly, I'd call the after-hours number and tell the covering physician that she wants me admitted for IV antibiotics.

I get home, and what she had actualy done with the pain meds (not what she said in the office) made no sense to me, so I called the office right away. The nurse returned my call immediately. I said, "Does Dr. xyz really want me to decrease the breakthrough pain medicine to ONE every Four Hours"? (instead of two every three hours.) Well, the logic is that since she's increasing the frequency of the long-acting drug, having me take it every 8 hours instead of every 12, I shouldn't have as much breakthrough pain. I forgot to ask why she didn't tell me that in the office.

hmmmm. She saw me 3 hours after I took the long-acting dose for the morning, I told her it wasn't touching the pain, AND she and the nurse both SAW that it was incredibly painful to walk. The nurse said I could keep using the original directions for the breakthrough pain meds for the rest of today, or whatever it took to manage the pain. I took her literally. My final combination for pain relief was a total of 40mg of the narcotic, (which is the next dosage strength up of the long-acting medicine) and ibuprofen for the breakthrough pain (which also reduces the fever).

But tomorrow I have promised to take the meds as directed.

I did some online research -- I have NO desire to overdose on this stuff -- needed to see how many mg would endanger me. There is no recommendation anywhere in the literature for prescribing Oxycontin more frequently than every 12 hours. But Oxycontin is made in a 40mg. strength.

I have started following doctor's orders, because it's after midnight and now technically Saturday. It's already obvious that her logic is not going to work, but maybe after some sleep the pain will subside again. If not, I'm going to take 2 Oxycontin every 12 hours and see whether I even need the oxycodone breakthrough meds. But this all might be moot -- I may be in the hospital getting IV antibiotics. Which could have been prevented if she would have called in the oral antibiotic sooner!!!!!!!!

And she still hasn't determined what is infected, or where. I never did get that vaginal exam. I forgot to ask when my urine test results would come back.

(Janie & shepherdpal -- I should have had DH take me. I was pretty assertive but not nearly assertive enough.)

Jads -- they didn't say anything the other day about 'milking' the tube, but I'm going to try it.

I'm so fed up, I can hardly stop crying if I let myself start. I started to post the update earlier and just couldn't type without crying. I'm overtired. Pain wakes me up every couple of hours, I take the 'breakthrough medicine,' which holds me over for another couple of hours... I dunno. Maybe another hospital visit would sort out all these problems. I'll see, tomorrow. But I hate to spend thousands of dollars for IV antibiotics and a hospital stay if $16.00 of Cipro will get rid of the fever.

And right now I almost hate my doctor.

Thanks for slogging through my lengthy posts and replying to them. With great appreciation and much love,
Unread 03-27-2004, 08:56 PM
Doctors Not Listening!

Again, I am SO sorry! This is a nightmare that just won't end.

One thing I didn't understand. Do you not have hospitalization insurance? Is that why you would have to pay 'thousands' of dollars for a hospital IV? Do it anyway. Your health is more important. Worry about who pays the bill after you get well.

I am such a wimp, I would never have been able to endure what you have. I would have been camped at the hospital ER until SOMEONE fixed this mess!! They would have grown so sick of my whining they would have dones something!

Hang in there, please, let us when you are home and feeling better.

Unread 03-29-2004, 11:33 PM
Home, and NOT feeling better

Oh Janie...oh everyone...I was sent home from the castle today. I'm home, and I'm not any better than I was than I went in. Except for one thing -- they upped my pain meds so that the pain is at a more manageable level. Yes, 40mg. Oxycontin twice a day, and oxycodone for breakthrough pain. I had plenty of oxycodone so didn't need a new rx for it, and hence I don't know which directions I should be following. Of course the doctor who wrote the discharge instructions was a different doctor, so he just heard the part about "I don't need a new rx for oxycodone" and neglected to write the instructions for that, and yet he was careful to provide me with the fact that two Oxycontin 20mg = 1 Oxycontin 40mg

The doctor they 'assigned' me from the interventional radiology department was one I'd seen as an outpatient once -- he's one of the students on some level, apparently, and he was AWFUL. I asked to see someone else from the department and was told he was the only one available. Tomorrow I am calling the head of the department to raise the roof, and to refuse ever to see that man again. His name is "Doctor Who." Actually it is probably Dr. Hu. But 'who cares' how he spells it -- he is a horrible man. You will see just [b] how [b] horrible he is as the story unfolds.

I'm home, with a stronger oral Cipro, and Flagyl as well. After spending Saturday night, all of Sunday, and part of Monday at the castle, the doctors still haven't determined what is infected, or where. They tested urine and took enormous vials of blood, and tested the fluid from the bag... but no idea what's infected.

I'm home, still running a fever ranging from 100.0 to 100.6. My instructions are to call if the fever rises to 101 or higher. So all those IV antibiotics ... and I still have fever.

I am home, with a tube that I am CERTAIN is clogged again and the awful doctor REFUSED to take me down to the lab and have a look. I was assertive. I was stubborn. It did me no good. They wouldn't give me a different doctor from the department, and they sent me home based on his assessment.

Jads -- about 'milking' the tube ... every nurse and doctor who walked into the room 'milked' the thing, which resulted in a little bit of fluid getting past the visible blockage and into the bag. The Horrible Doctor Who insisted that was evidence that the tube is "not" clogged.

Doctor Who could not fathom the notion that the sciatic nerve is being pressed upon by the lymphocele. He first thought I was saying I had a second lymphocele on my backside. I showed him the diagram I had drawn of the pain's path from my backside to my hip, around to the front in the pelvic area, and down the leg, but he just glanced at it and tossed it aside. Then -- and my DH was in the room when he did this -- The Horrible Doctor Who took his hand and grabbed my dressing, saying, "Does this hurt?" I almost slapped him, and DH was half-out of his chair, and I said, "NOT UNLESS SOMEONE GRABS IT LIKE THAT!!!" He never did understand the nerve pain. DH and I told the nurse what he had done, and she scowled but there was nothing she could do. I will be telling the head of the department about this incident.

He decided Sunday to order a CT scan. The little clot of doctors doing rounds reported to me that the results showed little or no change in the size of the lymphocele. The gyn/oncologist covering for my doctor said they were going to talk to him about changing the location of the tube. Later, a resident came back to tell me that "the interventional radiology department was not concerned about the CT scan results." He (the resident) also gave me the lecture on how the fluid output is supposed to decrease as they continue to sclerose the lymphocele with alcohol.

Speaking of sclerosing, Doctor Who thinks he sclerosed again. I say "thinks," because he did not remove the dressing to be sure that the alcohol wasn't just shooting out around the tube instead of going into the lymphocele. I told him I felt wetness, and started to remove my dressing, and he told me to leave it alone. (Ironic, coming from the man who grabbed the thing the day before)

So I am back to this part of a previous post to this thread:
I get the distinct impression that the interventional radiologist is assuming that I'm overreacting to the decrease in the amount of output fluid which is the desired outcome of sclerosing the 'pocket' with alcohol. The problem here is: I know the tube is clogged, hence the decrease in output. How do I know it's clogged?
a) the material clogging it is visible in the entryway to the bag, and
b) this material is also visible along the length of the tube from my body to the bag, and
c) it's been clogged before, although not for this long, and I can:
-- feel the pressure on the nerve (causing intense pain), and
-- see lymphatic fluid being trapped in the tube, and
-- see that the site of the pocket itself is obviously
Dr. Who argued with me about when my next outpatient appointment with interventional radiology was scheduled. He finally made a phone call and discovered I was correct, and then changed it to two days earlier. I asked him to please just do it now while I was there already and he refused. He said "I will make you an analogy. It is like, every time you cough, you do not go get a chest x-ray." The analogy is wrong, of course. What is it really like? It is, in my opinion, really like having pneumonia 2 weeks before, and having pneumonia again the previous week, and NOT ordering an xray (and refusing to believe it could be pneumonia again) even though all the symptoms exist now that were present for the previous two dx.

This is, indeed, "a nightmare that just won't end," Janie. I'm wondering if it's some divine (or devilish) test of just how much I can endure. And a test of my assertiveness skills. Stuff like that.

My cousin's wife, a nurse practitioner for a farther-away gyn/oncologist, told me that hospital administrators have begun to treat patients as 'customers,' and that my complaints against Dr. Hu will be taken seriously as though I were a 'dissatisfied customer.' And she bets that my complaint will not have been the first.

At least my physical pain is less than where it was before I went to the castle...

sigh. Off to bed again.

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