Tuesday, October 18, 2011

"You are Running Out of Options" ??? (hmmm)

Hell hath no fury like a woman suffering from chronic pain. I think that makes a good tag line for my day. Like many of my readers, I have been through hell with many doctors. I have had doctors make fun of me to my face for "making up" pain. I have had more than one sexist urologist office try to give my appointment away to an old man because "I didn't look sick enough". A lot of these infuriating instances happened a few years back when I had no diagnosis of any type. Now that I have been diagnosed with FOUR painful conditions, you would think this madness would end. Nope, doctors are still finding ways to be mean to me.

I may be a doctor, but I have no idea how to help you.
I have one type of sharp pain no one can seem to get in check: not my uro, not my V/PFD specialist, not the primary care doctor who abandoned me etc. So I lived with this pain and do my best. Although many IC and V patients are treated successfully with a monitored amount of pain killers, I know better than to even bother asking for even one pain killer b/c I don't want to hear statements such as "you are too young for pain killers", "you are making up your pain for drugs" or my favorite "our office is in the ghetto so we can't let anyone have pain killers b/c we don't know who is really sick and who is selling the pills". Yes, all these things have actually been said to me over the years.

I have four treatments right now 2 oral medications (non-narcotic), a suppository and I am in physical therapy. While these things help some of my other symptoms, they do not help this one pain. So at a trip to the V doctor last week when I again complained about this pain, I was offered a new cream the doctor was just sure would be helpful. I sent in my order to a compounding pharmacy and as I researched it, I got excited that the cream may help. It contained a medication with nerve pain blocking qualities and I feel this pain is nerve related.

My "magical" cream comes and I am so excited to use it. Only five minutes after applying it I was in pain so bad and had a horrible reaction. I was crying and screaming and my hubby wanted to take me to the ER. The ER here seems to hate IC patients so I wouldn't let him. It was a hell-ish night and took me 12 hours to feel better.

I was very ANGRY that I was prescribed this cream. It costs $50. I have been with this doctor over 2 years and if there was ANY chance I could have a reaction I think they should have warned me. Compounding pharmacy medications do not come with the typical warning labels that regular medications do, so it is really up to the doctor to let me know about side effects.

When I call to complain about this medication and asked for an alternative treatment I was SHOCKED by how poorly I was treated. They have the NP (who I do not like b/c she has NO bedside manner call me). "You should stop using the cream", she tells me. Hmmm...YA THINK!!!!! I almost went to the ER b/c of the cream, clearly I already stopped using it. 

When I ask her if I can try the oral version of one of the medications in the cream (non-narcotic), a simple "no" comes out of her mouth. "You are already on one oral medication and we don't allow patients to be on more than one oral treatment at a time". I was baffled and in shock. I hung up and everything began to sink in. She was so full of it. I know some IC patients who are on 10 different oral medications and I am not allowed two??! (which would actually be three, clearly she doesn't even read my chart).

So I call back in tears demanding to talk to the doctor and instead I get her again. BLAH. "You really need to come in again if you want us to evaluate you for anything new". "I was just in five days ago I tell her. What could of changed since the doctor evaluated me then?" "Well, I don't know how to tell you this, but you are a complex case and you are running out of options." 

How on earth am I running out of options???!!! You have to be kidding me is what is going through my head. There are so many options I have never been allowed to try: trigger point injections, botox, narcotics, TENS and the list goes on and on). 

But in her mind b/c her magical cream didn't work and I could not tolerate Elavil, I am running out of options. I told her I just wanted her to know that I was angry he prescribed that cream. She said well, "I am sorry if you feel that way but there is no way we could have known. Many other women describe this cream as life saving." (They prescribe it to that many people and I am the first one to have a reaction?! Doubtful).

I told her I really want to talk to the doctor and he is supposed to be calling me back tomorrow. It will likely get me nowhere. I am starting bladder installations with my URO next week. I am also looking into new treatments and doctors in other states. 

 I feel really taken advantage of by this particular doctor's office. She kept insisting I had to come back even though they just saw me. I really feel like they just wanted more money and don't care about my health at all. The doctor will probably end up not helping me over the phone, I will probably end up just keeping my normal follow up appointment instead of scheduling a sooner one and I will probably just suffer in silence. But I am hurt, hurt to have ANOTHER doctor tell me "Hmmm what can we do??" when I am not being given a chance to try even a fraction of the known treatment plans. I feel abandoned. I want a doctor who actually cares about me and about curing and healing pelvic and bladder issues. Does such a doctor exist??


I realize this post is more ranty than most of my usual posts and is also kind of a downer and doesn't really have any inspirational or women's power message at the end like most of my posts. I apologize, but it is just one of those days. I guess sometimes we all just need to rant.

5 comments:

karen said...

If you can, find another uro office to go to. This one sounds awful and it sounds like they don't really understand IC and V very well. I know it's tough. I got lucky, I was referred to a great uro in my area who specializes in PFD and IC, we tried many different meds before we found the right combination. Your doc is full of shit, stand up for yourself and kick some ass!! :)

Chrissy said...

I want to slap that woman so hard! So irritating, pun intended. I hope you know that by telling your story, you ARE inspiring people. Just because you feel like you're not writing a concretely inspirational post, doesn't mean it's not completely heartfelt. Your strength is amazing. Keep fighting, and keep telling your story. Awareness is KEY, and you're spreading the word. Tonight I'll dream of spreading that cream all over that nasty woman!!!!

Anonymous said...

I just wanted to let you know I have an idea of what the cream was that you used. I tried it too (or at least one that probably had the same active ingredient) and it hurt like HELL! I used it for about a week or two BAWLING and crying every time putting it on.

I feel your pain. I think I have the same conditions that you also have.

Don't give up trying to get a treatment plan that works for you!

Anonymous said...

wow! This sounds alot like my situation. Its extremely frustrating! The people that you think would understand (the doctors) DONT:( I hope things work out better for you in the future.

The Valcat said...

Thank u so much for all the responses<3 they mean a lot xoxo

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