Are My Expectations Too High?

[MommaWuzzi]

I already had one introductory post - sorry to take up another, but at this moment I am SO upset, and I'm wondering what I'm doing wrong.

Last Monday I had a laparoscopy (enlarged uterus found) and cystoscopy (and a wonderful bladder with lots of bleeding places found there). When I was discharged later that day I was given a prescription for Elmiron (can't afford it, we've asked the company to send the application), Elavil (had a classic allergic reaction to it and was switched to vistaril) and 20 percocet. I was not happy to get such a limited supply of pain medication with a follow-up appointment TWO WEEKS AWAY, especially since I actually got a diagnosis for a condition that the doctor had already assured me is EXCRUCIATINGLY PAINFUL.

BEFORE surgery, it was taking TWO percocet every six hours to manage the pain to a level where I could cook the occasional meal or travel without the pain making me sick. I want you to realize just how long 20 percocet would probably last me post-surgically if I was using them to completely manage pain). I did have a few left on surgery day, so I probably started dosing percocet at six p.m. Monday with 26 percocet.

I have had to be REALLY careful with them to make them last. A great deal of my time has been spent living on the couch because movement increases pain and sickness, and I get too sick to stay upright anymore. This doctor has seemed MORE than reluctant to prescribe ANY pain medication, and has never given me a prescription for any MORE than 20 percocet.

I started the vistaril Thursday, wasn't sure if it caused severe headaches (I can't sleep for almost four hours after taking it because the headache is so bad - I've read that it isn't recommended for patients with high blood pressure, which I have and am medicated for), so I gave it another try Friday and Saturday, getting less than four hours of sleep at night any of those nights because of how severe the headaches were.

I'm also realizing there's absolutely no way I can go any longer without asking for more percocet.

So I called my doctor's office this morning and left a message telling them that I cannot stand how bad the headaches are from the vistaril, and letting them know I have NO MORE PAIN MEDICATION left, and asking them to call and let me know what I should do about the vistaril, and what they might be willing to prescribe me to manage my pain.

No return call.

I call again, leave a follow-up message that referenced previous one.

Call pharmacy, hoping that they're even prescribing ultram, hydrocodone, extra strength ibuprofen (even though that's why I HAVE high blood pressure), ANYTHING and just not getting a chance to call me.

Nothing.

The pain completely runs my life, and before diagnosis when I told the doctor that it regularly made me sick, he said "maybe you shouldn't do things that make you sick."

Shouldn't cook? Sweep my floor? Go shopping with my husband? Am I honestly EXPECTED to spend the rest of my life on the couch until I get a reduced price for Elmiron, and, if it doesn't work, continue to languish there with this illness? Is this normal for doctors to not prescribe enough pain medication to even get an IC patient to the next appointment? Is this what they expect from us?

I've called my regular family doctor to see if he'd be willing to manage my case. Yes, he's not a Gyn like who diagnosed me... but I know he honestly seems to care if I'm in so much pain I cannot function... At this point, as an uninsured, poor person I don't know how many options I'm supposed to have.

Has it been common for you to have glitches where no one seemed concerned about your pain?

[waterflow]

To tell you the truth I went through the first 10 years with no pain meds except after having something done at the hospital. I asked and asked almost every week when I went. Been going for heparin instills. I did everything but beg. Then it got to the point where I told him I want a life. I read where others on this web site have pain meds and I wanted them too. I could not deal with the pain anymore. He fianlly gave in to it but it was a struggle for a long time. Did get into an arguement when I wanted something stronger. He plan out said no and I left mad. Almost started crying but was not going to give him that satisfaction. Then when I went back the following week he offered to let me have it. Told him no, that's ok. Didn't want it after that. How long have you been with this doctor? Have you tried any instills? He could give you something for the sick feeling. My Uro did because in the beginning for many years I had the sick problem too. I used a suppository because I have a hard time with pills. There is the cystoprotek that works the same as the Elmiron. It helped me out and you can buy it here in the ICN shop. Much cheaper then the Elmiron and no side effects either.
I do know most doctors won't call back and if they do it's days later. Can you call and tell them to put you on hold while they find out or talk with a nurse? Or if all else fails go to the office and say you need help.
I wish I could tell you something more to help out but I don't have anything more to offer. Hopefully someone else will post to give you a hand. Oh, how about hydroxyzine for at bedtime to take? Not sure if it is the same as vistril but it helps so I can sleep. I know how you feel too without sleep. I didn't sleep the first whole year. Took that long before going to a bladder specialist and he put me on the hydroxyzine.

[ericau]

Oh Honey! I know exactly what you are talking about. They dont want to prescribe the meds but for heaven sake...we have lives to live! Just hang in there. Have you though about getting a referral to a pain management doctor? I was thinking that might be my next option.

Erica

[MommaWuzzi]

Hydroxizine (however you spell it) is the generic name of vistaril. It gives me blinding headaches. It takes until almost four a.m. until the pain subsides enough to let me sleep. I just got off the phone with a nurse at my REGULAR doctor... she called me AFTER HOURS to find out why I called and told me she would call me back and let me know if my regular doctor is comfortable dealing with this, or would prefer I get a specialist. I TOTALLY understand if he says "no." I also told her that for now, I understand I am STUCK with no pain medication, because pain management protocol says that a patient ONLY gets pain medication from ONE doctor. Since the doctor who won't return my calls currently has my treatment, and will until Friday, I'm stuck begging the man to do anything to help me manage symptoms, and putting up with the "results," even though it has meant that I've been only on my couch 90% of the time since last Monday, and means I will remain there until I take my treatment elsewhere.

I told her - the reason I want YOU GUYS is because of what you JUST demonstrated - you guys call me back, you're responsive - for that matter, you know me from pre-diagnosis when the pain started driving me crazy- you KNOW I've never had pain medication in the seven years I've been your patient, and that I DON'T ask for that kind of thing. I just want a life that includes more than "couch time."

There's a med that gets rid of the sick? Is your sick like mine - nauseous, shaking, overly sensitive to heat, exacerbated by movement? There's a pill that just gets rid of that? That's why I take the pain medication - if I keep the pain low enough I don't get those "spells," but if I can't keep the pain back that far, then I get sick even if I clean my house for more than about ten minutes :(

[KarenAnne]

So sorry you are so sick & getting nowhere. Can you call the urologist & go in to see him face to face, instead of calling? This way you can also get a urine culture done to rule out a UTI post cystoscope. When is your post-op checkup? I assume there were two doctors in the OR, a gynecologist to do the Lap. & a urologist to do the cystoscope.

Maybe your gyn can extend your pain meds? Best of luck & I hope you can some help & relief soon, Karen

[MommaWuzzi]

I've never had a urologist. The gynecologist wants to run this, and they finally returned my call. They assured me they want me to quit all pain medication and rely on treatment instead, but they'll give me a few days worth of vicodin to "wean me off the percocet." They also told me I have to keep taking the vistaril, even though the headaches are bad enough that I can't sleep (I can only lie there - the pain is too nauseating to move - I guess I should be happy to have a new, different pain? It keeps me from having to imagine different pain to complain about).

Why are they unwilling to treat pain when they've done nothing to stop it yet? :(

The doctor says I have to stay on the vistaril because there is "NOTHING ELSE WE CAN GIVE YOU TO TREAT THIS" - Should I run now or at least wait for the Friday appointment where he does my first bladder treatment? :(

Oh - my family doctor is willing to take over my treatment and even go out on the internet, journals, etc., to learn what he can about the condition to make sure we leave no stone unturned in disease management... He's just a normal D.O. :)

[KarenAnne]

So you are saying that a gynecologist did your cystoscope? And he told you to continue with medication that is causing severe, debilatating headaches? Urologists do cystoscopes, not gynecologists. Plus there are several treatments out there.

I hope some of the RN's out there respond to your story. You need a post op check for sure. Your family dr. sounds like a compassionate, caring physician. You might want to run this all by him in person. I know alot of people here are treated by their gynecologists with success, buy gynecologists deal mainly with the reproductive organs & their related illnesses. Urologists deal with the urinary tract & it's related diseases.

You can always call your pharmacist to check if severe headaches are a side effect of vistaril, or check with your family dr. Do you have anyone to help you with this stuff? It sounds overwhelming. Hang in there.

[MommaWuzzi]

YES. A Gynecologist did my cystoscopy, did my diagnosis, and is planning on doing a bladder instillation on Friday. Since it appears he only does things that are FDA listed as definite treatments. He will not do another tri-cyclic, and cannot prescribe me ANYTHING but Elavil (allergic), Elmiron (haven't gotten the paperwork from the company to apply for reduced/free yet) and vistaril. This is making believe that my bladder instillation is going to only be however DMSO is prescribed, and that's it. That's making me a little nervous - I've applied DMSO topically, and when it gets near broken skin it hurts like a SOB... I'm now scared to death to even SEE that man on Friday... I guess I'll have to post another thread "What is the FDA version of DMSO treatment and how much/how long after does it hurt?"

Especially since I will not even have vicodin from this man by then, since it's only a stop gap because he believes I've somehow become addicted to percocet?

Puh-LEEZ - I took percocet for almost three weeks after severe ankle surgery, quit taking it when I didn't need it anymore and had half a bottle of the last prescription left. A total of two and a half weeks of minimum doses is NOT going to turn me into an addict...

[KarenAnne]

Can you do a search on here or in your area & get a second opinion from a urologist? You are only one week post op & were not even told why your uterus is enlarged. Is this gynecologist board certified & in what? You don't seem comfortable with this gyn's treatment plan.

[MommaWuzzi]

I could get a second opinion - from what I understand (hubby saw the pics) there were multiple, large bleeding areas, which is classic for IC from everything I've read. I think I differ more on treatment than diagnosis with this guy. Though I suspect I might have adenomyosis, too, he is a very reluctant surgeon, so I'm not sure if it is enlarged enough for him to be willing to do a hysterctomy (I'm 40, done with kids and ALL FOR IT).

He really appears to be someone who will only prescribe "on-label" and a lot of IC treatment is OFF LABEL - if one tricyclic left, there are a half dozen others, or you can try cymbalta or an ssri (not a lot help) - some people try Lyrica with some success. For that matter, how many possible anti-histamines can I try? There's got to be at least a dozen.

Oh - he's anti-supplement, too.

I'm considering finding a urologist who will work in conjuction/consult with my family doctor, and letting my family doctor manage my treatment. He knows my history (have NEVER TAKEN PAIN MEDICATION until last November, around 7 years at least now as his patient), and knows that the pain and its disability is distressing me and can be managed. Further, he immediately brought up bladder instills for symptom management while I wait to afford Elmiron, his staff is responsive, and he's a GOOD GUY. His treatment throughout this has been nothing but supportive (as a family practitioner he can't do laparoscopies or cystoscopies, so he had to refer them). He's been a very quiet encourager as I've gotten to a diagnosis, and I had him manage my pain medication until the gynecologist took over my care, because I didn't want to expose him to too much scrutiny on pain medication with a patient who had continued pain issues/pain meds.

I know that too much pain medication can cause a raised eyebrow for someone overseeing a doctor, but when it ruins your life I think there should be options to treat it :(.

[Nonna]

I know just how you feel. I also wanted to tell you that I know several IC'ers who are treated by primary care doctors and have no use at all for urologists. (There are lots of urologists who have no interest/nor that much knowledge about IC --I realize there are good ones too) and there are internal med. docs who have become knowledgable because they've treated patients and have developed an interest enough to follow what can be done--and sometimes they're better because they don't try to do all these procedures which for many of us are worse than doing nothing.
Once you get a diagnosis, any doctor can help you sort through all of the possible treatments and work with you to try different things to help you with the pain. My doctor describes IC as primarily a pain syndrome for most people, therefore it's the pain that has to be treated. There are some people who are helped by instills (I'm not one of them and I know lots and lots of people who would never get them), but I would only get an instill from a doctor in whose hands I felt comfortable and comforted. The urologist you describe does not sound like that kind of person and if it were me, I would do everything to either find a pain specialist willing to treat the pain (until you can get the IC under better control) or see if your primary care doctor will help you do that. Then you can better decide how you want to proceed with your treatment, and this will give you time to find someone who is a specialist in IC/and extremely compassionate about IC. There are endless possibilities for managing your IC and it's so important to find someone who will explore those with you, always providing hope towards getting a normal life back. It looks like you're right not to settle for what the gyn or urologist are saying...just keep at it. See if you can get names from the lists on the IC-network for good doctors in your area. Keep us posted on your progress. Thinking of you, Nancy

[KarenAnne]

Sounds like you have a plan. Your family doc sounds great. Best wishes.:)

[ICNDonna]

If a medication is giving you a severe headache, that should be adequate reason for not taking it. I suggest you see a urologist --- the uro should be able to get test results from your current doctor so you may not need to repeat them.

My doctor prescribed a med for me that caused a headache --- I stopped the med and called his office and left a message for him --- he changed the med immediately. And when I had my next office visit and they were reviewing my record with me, he had actually entered the offending med with my allergies.

Donna

[LittleRed333]

First red flag is the fact that this gyn doctor told you to continue on the Vistaril even when it gives you such blinding headaches that it leaves you unable to function......a competent physican would tell you to stop taking the medication and prescribe something else.....and especially with your history of hypertension(high blood pressure).....

I second the advise Donna gave you...go see an urologist and if able, one who specializes in IC.....

Bless, Sharon

[MommaWuzzi]

Thank you everyone who read this... and wow am I grateful that NO ONE said, "Of course you're going to be in agony for anywhere up to a few months, but what the doctor is insisting on doing is STANDARD treatment, and it's about that way everywhere."

When I first began reading about chronic pelvic pain, a diagnosis like IC was the thing that scared me most (or worse, ruling out IC and just calling it CPP), because much of what I read was, "give the patient an anti-depressant, some OTC tylenol and tell them to get therapy to learn how to cope with whatever is stressing them out, because there isn't anything else to do for them."

This gynecologist has begun to be everything I was worried about as I was looking for a diagnosis - "yeah, you're in pain, but pain medication is bad for you, and you aren't going to recover unless we take you off of it."

Hubby is asking me for now to document everthing, take all research studies I find on the internet supporting MY position (that IC is seriously painful and we need to manage THAT, too, and that there are alternatives to the drugs he's tried that can also be effective) and go to the Friday appointment with the gynecologist with an open mind and attempt to be an approachable patient that needs help rather than a desperate patient who wants relief. He told me to document everything (including medication doses and when, what my blood pressure was after taking vistaril today (they told me to take it in the day since it causes so much pain I can't sleep) - 170/94). He told me to stay on the vistaril since it's obvious the doctor is frustrated, too, but document the heck out of what it does each time. He wants me to get a urologist referral within the hospital if possible, because we already have a sliding scale there. We don't have one with my regular doctor.

The idea of working with this man absolutely depresses me. I see nothing but a whole lot of misery, probably for a lot of months yet, and I don't have any real hope of any input or voice in my treatment. I don't mind, though, spending some time documenting everything in my illness and having it ready for the next doctor. My family doctor had told me to "complete treatment" with the gynecologist first, so I expected that would be a few visits more, at least.

Thank you for letting me know my expectations were NOT out of bounds or terrible. Though I haven't had to cope with this illness unmedicated since November, I guess I'm going to have to learn to cope with it now for a few months, at least, until either the symptoms abate or I've demonstrated that he and I can't work well enough to get it done.

[LittleRed333]

MommaW....

If the Vistaril is causing an elevation in your blood pressure such as you posted(170/90`s), you need to stop taking it....and I would suggest stop taking it immediately.....I am telling you this from a nursing standpoint....

It is good to document the effects of the medication and everything else, but if this doctor is telling you that Vistaril is thee only medication prescribed for IC then I would have my doubts on how competent he truly is as a doctor and go find someone else...an urologist preferrably.....ask your primary doctor for an urology consult and explain your reasons why....As I have mentioned before, you are your own patient advocate and if something doesn`t feel right then you need to seek medical help elsewhere......do not be afraid to speak up for yourself.....

Any good doctor would be open to suggestions and would be willing to work with his/her patients....

Bless, Sharon

[targirl81]

After suffering with IC for many years with very little relief, I had a MAJOR flare in 2005 and realized that I really needed a new doctor. I found my angel of a doctor on this very message board. I am in NC but perhaps somene on the boards from your state knows of a great urologist there. If not, call Dr. Robert Evans office in Greensboro and ask for a referral. He had been absolutely awesome for me!