"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.

When Your Bladder Needs a Vacation

Don't spend half of your vacation searching for a restroom.

Suffering from IC can impact the life of patients in many ways. One major thing IC can interfere with is travel. Patients who need to use the restroom multiple times an hour may be nervous about taking long car rides or have anxiety about finding restrooms ( I am the queen of this, one of the first things I do in any new restaurant etc. is look for the bathrooms). Patients who suffer from pelvic pain may be concerned with laying on the beach  due to sand getting inside of a bathing suit. 

Remember that IC is stressful enough and that you deserve a vacation just as much as anyone else. You don't need to let IC control your travel plans forever. 

Here are a few tips to keep in mind if you have IC and are trying to plan take a trip:

-If you need to travel by car, study your route before you go. There are likely rest stops along the way. Knowing where they are can take away a lot of anxiety. Only travel with supportive loved ones who will be willing to stop as often as you need to.

-Make yourself comfortable in the car. Bring cushions, portable heating pads or anything else that will help you with the ride.

-If you are traveling by plane, you will need to get used to using plane bathrooms. No one likes to use tiny plane bathrooms, but us IC gals really have no other option. Getting an aisle seat can make things a little bit easier so that you can get up without having to climb over other passengers.

-When going to the beach, make sure to bring a chair. You will get way less sand in your bathing suit this way. Getting too much sand in a bathing suit can be a nightmare for a Vulvodynia sufferer.

-If you swim in the pool or ocean, get out of the wet bathing suit and put on something dry as soon as possible. Sitting around in a wet bathing suit can cause a yeast infection which can make a V or IC flare worse. Not chilling out in a wet swimsuit is a tip all women should follow, even those without IC.

-Make sure to pack all of your medications. Forgetting them may cause a flare or even just give you a lot of anxiety. When flying or taking a cruise, keep your medications in your purse or another bag you will carry with you. Do not put your meds in transported luggage that has the chance of being lost.

-Plan activities in advance that you know are IC or pelvic pain friendly. By doing this you will not feel left out if the group you are with wants to do an activity that you can't participate in.

-If you have a lot of food triggers, do research about restaurants in your vacation area to make sure there are foods that you can enjoy.

-Stress is a flare trigger for many patients. Pick a vacation that is on the slower paced side and not a vacation where you have to be constantly on the go.