Primary Care doctor visit on 11/24

[Glenda2]

I made an appt. with My Primary Care doctor and I saw Her today.

We talked about my IC , and How Elmiron makes me sick , and that I had to stop taking it.

I asked what other medications are available ?
She told me there isn't anything else for it.

She told me she has several IC patients and they are always in her office with their Hands stuck out looking for Pills of any kind.

Narcotics
Anti Depressants
Benzo Class Drugs
Seizure Med's

And anything else they can get their hands on !

She told me these Drugs are being Improperly perscribed for IC patients.
They look for a quick Fix , and those above pills are not the answer.

I was Speechless*

[dyno]

I wouldn't have been speechless knowing what I do now. I would have told her she was very misinformed and suggest she do some more research and let her know I would be finding another Dr.

I am sorry you are dealing with a Dr. like this along with your remote location issues also. It truely is time for you to find a different Dr. to help you with your IC. I will pray you can find someone.

[HKay66]

WOW!! I would have been speechless too!! I also would have felt mad,
hurt, frustrated and helpless.
That was terrible and I agree with Dyno totally!
If you can, find a new Dr. I have seen two uro-gynys and they are
are very good and more informed about IC than most.
There are many alternative meds, etc. that you can see people take here.
I am not well yet, but much better than 6 mos ago.
I have followed the diet, have done 15 instills, taken elmiron and will
be starting PT in a couple of weeks and hope that helps more too.
It makes me sick to hear a doctor say IC patients are always looking for pills.
Let me tell you, if she felt the way I did 6 mos ago she would have been
begging for anything to give her relief and go to any lengths to get it!
NO ONE can understand this pain, etc. unless they have gone through it or
are well researched.
I recently saw a neurologist (Sp?) and she told me she has heard that IC
is one of the most painful things anyone could have... thank you, she understood!!! She also thought nerve issues I have had is due to my body
suffering extreme pain.
There are good Drs out there, I hope you find one.... you deserve it!!
Holly

[jvr]

Hi Glenda,

I don't think Primary Doctors are the most informed about IC. I love my Primary Doctor, but I think I know more about IC than he does. I was talking to my Rhuematologist awhile back and she thought that the only thing you could do to help IC was diet. At least she got the diet part, but she didn't know of all the other meds they use to treat it. I know she's a rheumatologist and all, but seeing that she treats fibro,(and many fibro patients have IC) I thought she'd be aware of some of the other meds her patients take. Heck, even many uro's don't know what they're doing. I personally haven't had a whole lot of luck with local uro's in the years past, so now I've chosen to see an IC specialist in 2 weeks. I'm hoping my new local uro (who seems like a doll so far) will work with this specialist. I'm burned out from all the years I wasted looking for someone halfway knowledgeable to help me. Sorry for the long ramble...Have you gotten your aloe yet? Also how is the other supplement you're taking going? I can't remember if it's chondrotian or quercitan, or.......?

Jill

[ICNDonna]

I think it's time for a second opinion. When I chose my primary care physician, one of my questions was how would he treat my IC --- his reply was that he would refer me to a urologist. Elmiron is absolutely not the only treatment for IC --- I can't take it and I do very well most of the time.

Hugs,
Donna

[vm]

How horrible. Seems like a case of a doctor who has never lived in unrelenting pain or discomfort. If she had, she'd know WHY patients come in so desperate for relief. Of course they want treatment - does she think it's going to go away on its own???

She's in the wrong line of work - I feel sorry for her patients.

[Glenda2]

When I saw my Primary Care Doctor on Tuesday , she was real Insistant that IC suffer'ers Are always in her office looking for any pill they have read about on the Net and from web sites.
My doctor told me that her patients have even told her to go on line and check out all the IC web boards and see just how ill we real are , and how bad we suffer.
She basically told me > They are Drug Seekers. And that they will take any pill if it has the possibility to get rid of Bladder pain.

She told me she Knows IC is extremely pain full , but not to the extent of taking all those type drugs. Elmiron is the Drug used to treat this condition.

NO I cannot find another doctor. This one has been my doctor for almost 7 years now.
Due to my remote living location , I have to use what's available to me.
I have never had any problems with this doctor at all.
She has been a doctor for 25 years and she is good at her profession.

But when it comes to IC , she will NOT perscribe those type drugs that I listed above.

She said a Urologist is the doctor that needs to be seen for taking care of My IC , and Not her.


She was very adamant that IC doesn't require those above drugs !!!
She basically said these women get themselfs all worked up and stressed out to the Point "They Think They Need These Pills" , So They Ask for them.

As I said above > I was Speechless*

I guess if she suffered with IC she would be seeking help damn quick.

We talked about all the OTC stuff and she said You can try it , but it isn't going to benefit you that much. If any at all.

Even my Urologist said this to me.

I don't know what to think or believe any more.

Who's right , who's wrong , and who is MisInformed.

I talked to her about Prelief the acid reducer , and she told me that since I take Protonix for acid refief , I cannot take Prelief.
I am already on an acid med another words.

The MSM-Glucosamine is Ok to try , it might help with achey joints muscles for Fibromyalgia.

I think IC is so MisUnderstood by the medical profession and they really don't know how to treat it , other then the Elmiron , of which I cannot take.

She did tell me that my Protonix causes Osteoprosis and Since I have been on it about a year , I have to come in and have a Dexa Scan to check for it.

I am getting ready to say to Heck with Doctor's.

None of them want to perscribe med's for it other then the Elmiron.

I know you guy's try all these OTC's and some of you get great results.

I guess I don't know what to think or do anymore.

I know you recommend I get a new Doctor and Urologist , but that isn't possible due to my remote living situation.
I have to use what's available and that is 75 miles away.
To find new ones , I'd have to Drive well over 100 + miles.

This is Frustrating*

[dyno]

Glenda then I guess if you have to keep her as your Primary and since you seem to like her for your other medical conditions, maybe just seek out another Dr. to help you with your IC.

As Donna and others have stated, Elmiron is not the only medication for IC. Everyone has their own "treatment" that works for them. For some, it takes all those medications that your Dr. said people shouldn't be taking, working in combination to get the desired results. That result is pain and symptom relief.

I know many people who travel a lot farther for medical care, even if it is just once or twice a year for a good Dr. who can help them.

I have been suffering with this disease sinces the 70's. I have been through the bad Drs. too. Believe me when I tell you your Dr. is misinformed or maybe closed minded is a better way to say it, on this particular subject.

Having been through the bad times I know now that I have to be the one to watch out for myself and what I need for my care with my IC. I have had to find a new Dr. myself recently. I had moved away from where I had found the best IC Dr. I had dealt with and I was really leary about what I would find for care.

Low and behold I found a FAMILY Dr. who is willing to treat my IC with what I tell him I need. Until I get to the point that I need to see a urologist again, he is more than willing to give me the medications to try that I want to. So I just told him what was working for me and he gave them to me.

I tell you this to let you know that there are Drs. out there that care and will work with you. You are going to have to seek them out though and find them.

[Glenda2]

The Only thing I can do now is > Bide my time till next Summer , so I can drive that long distance , and seek out another Urologist to try to treat my IC. But the one I do have is Pretty Knowledgable , as he's been one for a LONG Time. He was Recommended by my Primary Care doctor.

That's a hell of a long time to wait when I feel like dirt .

2 doctor's now have told me the same thing. Inregards to pills. A NO-NO*

I know you ladies get great relief with these medications.
Most of these I cannot tollerate due to severe harsh side effects.

So I guess this is a > Waiting Game.

[mary124]

I think its time for a new doctor! When I found the PCP that I am going now, he looked at my medical history and both he and his nurse knew a lot about this-this was about 6 years ago, so I was surprised (the other doctor that I went to didn't know a thing-which isn't the reason I switched doctors thats another story). I did ask him how he treats IC and he said since i have a URO that I liked and is good that he would keep me with him, as their office don't have the supplies/equipment to treat IC.

[jvr]

Glenda,

I think it would be really helpful if you could see your doctors in more of a human sense. The first urologist I saw was in his 60's (so I'm sure he'd been practicing for many years) told me that I was experiencing symptoms because of anxiety. The second was also in that same age group and said that I might have IC he wasn't sure and to just drink water. These are boards certified urologists. They're not gods. I asked my current local uro who seems so far to have a great bedside manner about Cystoprotek and Aloe. He was leary. I personally take that as he is not fully educated about the supplements and does not know enough about them. Purpletomororw sees Dr. Evans who is a very big player in the world of IC. She said that he encourages his patients to take these two supplements because they are the ones he 's seen most improvement from. This man is involved in clincal trials and sits on the board of the ICA. He's a big deal and personally I'd probably listen to him over a urologist who does not do IC as a speciality. Dr. Theorides and Dr. Sant who developed Cystoprotek have also been key players in IC. I believe the whole reason Atarax even came to be a treatment for IC is because of Dr. Theorides. Also, this site is a highly respectful site and I don't get the impression that Jill will sell just anything on her site. She seems to be show me the proof kind of person before she endorses something. The ICA also recommends these supplements. I think you need to take these doctors of the pedestal you have them on. Like Dyno mentioned, many travel a distance for good care. I'm driving 10 hours to San Diego in less than 2 weeks to see Dr. C. Lowell Parsons who has been another key player in IC. I'm hoping that he can help me local uro set up a good attack plan. I also am taking me daughter to see him and we only have to see him annually after this. Any issues I'm told can be handled over the phone between visits. This is highly worth it to me after the experiences I've had so far. I think we all have to become advocates for ourselves....

Jill

[123456]

I agree with Jill. Also, your doctors should work together. I know that my uro contacted my PCP regarding my diagnosis and treatments. Then, he told me that my PCP would have to prescribe Ativan as he normally didn't. My PCP agreed to do it and it has been no problem. I feel blessed that I have doctors who will work together to help me feel better. Of course, I have also been blessed in that I am not allergic to any of these meds. I'll say a prayer for you, Glenda. I think you should try the natural OTC stuff. I would if I was in the same position.

[kadi]

I've known IC patients to have friends drive them long distances or even get on planes to find a specialist to help them. Sometimes it takes nearly a herculean effort to get things rolling, but then they have an advocate to speak up for them... The specialist can guide the local doctors or they can prescribe for you once they've evaluated you. That may be an option for you. Somehow manage to get to a specialist and have them run interference with the local doctors. Doctors listen more to other doctors than they do to patients sometimes.

[Glenda2]

NO , I do NOT put any one up on a Pedistal. Far from it.

They are just people , like you and me . The only difference , They went to school to learn a medical profession.
Many have been in practice for several decades , if not longer.

And My Primary Care doctor was the One to send me to this Urologist , as they are aquaintances.
I trust their In-Put Opinions.

Other wise they'd be out of Business by now if they were quacks.

Neither of them will Perscribe those med's listed above !!!
They both say > Those med's are not required for IC.
It's ELMIRON only.

And if you buy all these OTC's , it's a waste of your money.
They are Not the quick fix cure.
Because if they were > they'd be a perscription.

Now I know ALL of You will Disagree about this.
As you do get results and benefits from these OTC med's. And Rx's.
But again , some of you don't.

I am at a complete Loss as to what to think and do anymore.

Who's right and who's wrong ? Who's MisInformed ??

I know many of you are Taking Atarax and it helps. Well I have been on it 16 years and it doesn't do anything for my IC , or it would have already.

I can't take Prelief the doctor said since I am on Protonix.
It is OK to take the MSM-Glucosamine , as it "might" help with stiff achey joints and muscles for my Fibromyalgia.

And as I have mentioned , with my cousin being a Medical Examiner , she has told me storys about these above type pills people take and the dangers of them.

That makes me even more leary of medication.
I don't need to end up on a morgue slab.

I would give anything if this never would have happened . I hate IC.

I appreciate everyone's support about this.

It's very frustrating when 2 doctor's tell you pills are Not the answer and Only Elmiron is. And Darpaz too.

If I lived in town I could scout out new doctor's.
But to find a New Urologist I will have to drive well over 100 + miles this coming summer.

And what if I get the same exact "line" from a new Urologist ????
Pills are not the answer >

I can't drive all over the state looking for someone to try to help me.
(Altho I would > within reason that is).

This just makes me mad as hell.

I have been using Ice Packs on my pelvic area in front and an Ice pack tucked in under my pants on the outside of the underware in back , and it feels pretty good.

I was told by numerous doctor's NEVER use Heat.
It causes sweating, itching and draw's the blood to the surface and that's why the skin turn pinkish red.
Always use ICE.

Thanks for your support Ladies*

[nottoc4]

It must be very hard Glenda,given all your medical problems,to deal with Dr.'s that don't understand. If I were you,I would start trying some of the over the counter meds that people on here talk about.One at a time so you can figure out what helps and what doesn't. It's very scary for me to think about the possibility that the Elmiron and Imipramine would stop helping me and than what would I do.