"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.

The Important Muscles Your Doctor Never Told You About

Know your body. Your muscle spasms are real.

Starting around your pubic bone and ending near your rectum, every person has a group of muscles called the pelvic floor muscles. Both males and females have pelvic floors, but pelvic floor issues are more common in women. 

So what exactly do the pelvic floor muscles do? Think of your pelvic floor muscles as a hammock of sorts. The pelvic floor muscles hold many important things in place including the uterus and bladder. That is a pretty important job for a group of muscles many people have never heard of. 

If you have never experienced a pelvic floor issue, you likely go through life unaware of your pelvic floor and how much it is doing for your body on a daily basis. If you experience pelvic floor problems on the other hand you can have issues with urination, sitting, sex, walking and almost anything else you can think of involving that region of the body.

Pelvic floor dysfunction (or PFD as the IC community likes to call it) occurs when the pelvic floor muscles spasm involuntarily. PFD is a medical condition all on its own, but many IC people have PFD and vice versa as the pelvic floor and bladder need to work together, especially in women.

Imagine how badly it hurts when any other muscle in your body has been injured. Now picture that pain effecting your vagina, rectum or bladder. OUCH, is probably the first thing that comes to mind. PFD is still rather mysterious in its origins just the way IC and vulvodynia are, but many people with IC are believed to have PFD because of the constant bladder inflammation and frequent urination. Inflammation can greatly impact the pelvic floor muscles and patients can lose control of being able to relax them leading to chronic muscle and nerve pain. 

It is really important for women of all sorts, even those without IC, to realize that their bodies have a pelvic floor. Pelvic floor issues can effect anyone. The rare times the pelvic floor is discussed in the main stream media, it comes up in conversations about urinary leakage or sex improvement and the answer given at the time seems to be to do a kegel exercise. For patients with a true pelvic floor dysfunction, the answer is not this simple.

While there is no current cure for PFD treatments are available including physical therapy, vaginal valium, trigger point injections and more. 

The lesson here is to know your body and know that you have muscles keeping everything together down below. If you feel like something is wrong with your body, go with your gut feeling and find a doctor who is educated. 

And while you are here, don't forget that it is IC awareness month. Spread the word, knowledge is power.

You know you suffer from chronic female pain when...

Pain is no fun.  When you suffer from chronic female pain, you have to adapt your lifestyle to deal with many unfortunate issues.  I hope that other ladies can find some familiarity, comfort and a little humor in this list.

You know you suffer from chronic female pain when...

-It no longer phases you to bring a seating cushion to restaurants.

-You have no sympathy for those women who think they understand what it feels like to have IC because they had a UTI once during their freshman year of college.

-You have put ice packs and heating packs in places that other women wouldn't dream of.

-You have had to give up a favorite food or drink for the sake of your health.

-You are under 50, but have an "old lady pill box", potentially with more medications than your 75 year old relative.

-You have contemplated submitting your story to Mystery Diagnosis.

-You are the reason that your family or group of friends has to take a ton of potty breaks on a road trip.

-If there are less than four rolls of toilet paper left in your linen closet you will have an anxiety attack. 

-You have been the person to explain to strangers that their body does indeed have a pelvic floor.

-You have had a conversation with your bladder.

-You have been laughed out of the ER.

-You have left a doctor's office crying because someone told you "the pain was in your head".

-You're too nice of a person to wish this kind of pain on your worst enemy.

-You are thankful for any loved ones who believe in you and support every step you take in life.

-You have peed neon orange or blue before and you are pretty sure you are not an alien.

-You feel like smacking people who think you have a UTI or a back problem.

-You get frustrated when people ask you if you are "better yet", even though you have explained to them 10 times that your problem has no cure.

-You consider the phrase "but you look so good" an insult.

-You are glad I posted this list, because you thought you were the only one who had to deal with these things.

The Day I Cried Because I DIDN'T Have Chlamydia

Most people would be very happy to have a test come back negative for a STD.  Believe it or not, there was actually a time when I cried when my STD test came back negative.  Yes, a part of me wanted to have an STD.  Why?  Because it would be an answer.  Why?  Because it seemed better than a disease with no name.  Why? Because it would be better than people accusing me of making up my pain.

I would like to share this personal story so that people can see how seriously we need more doctors who are educated on pelvic pain.

I was a typical woman just shy of my 25th birthday when I woke up in excruciating pain.   It was like nothing I had ever felt before.  I could not sit down with out feeling like a sharp needle had been jabbed into my girl zone.  I often had a lot of urinary tract and yeast infections in my teenage years.  No doctor could ever tell me why.  They would just say I was prone to them, give me the medications and send me off on my way.  So when I woke up with this pain, I just assumed that maybe it was a UTI.  The pain was way worse than any UTI that I had before, but there really seemed like there would be no other explanation. 

I went in to see my gyno who thought that I had a yeast infection.  She started me on the cream for that.  I was in pain for several days, the cream was not working.  That's when I got a call from the gyno, my cultures were negative for yeast.  When I told them I was still in pain, I went back in for a urine test.  Since my white blood cell count was high in my urine, they started me on antibiotics.  Three days later, I was still in 10+ pain and I got another call, I also did not have a urinary tract infection.  What the heck??  What else could be causing this pain??  The gyno felt it unnecessary to do a STD test on me as I tested negative at my last regular appointment and had not been with anyone since.  So I asked her what I should do about my pain.   

SHE TOLD ME THAT THE PAIN WAS IN MY HEAD.

I was in shock.  I couldn't stand, I couldn't sit, I couldn't walk.  I was in constant pain and couldn't think about anything else.  I was in pain first and a person second.  How dare this woman accuse me of making it up.

Disheartened, I went home defeated.  One night a few days later, I was laying on the floor screaming in the middle of the night.  The pain was no longer 10 on a scale of 10, it was more like a 20.  My family had no clue what to do and took to the ER where they did a battery of tests: pelvic ultra sound, urine test and STD panel.  Even though I had no reason to believe I had an STD, they said it was standard procedure to test for chlamydia in women my age.  When they found nothing on the pelvic ultra sound, they sent me home.  They refused to even give me pain killers because some of the nurses thought I was making it up.  The doctor said I would receive a call in a few days with the results of my chlamydia test.  

I went home more upset than ever.  I felt like I was dying and no one would help me.  How could I live the rest of my life unable to move due to pain?  That's when I started to fantasize about chlamydia and how wonderful it would be to have it.  Maybe my last test was wrong I tried to convince myself.  Maybe I caught it from an ex-boyfriend and no doctor ever realized I had it.  I found myself actually hoping and praying that I had a STD.  I know it sounds crazy now, but at the time, it made sense.  Chlamydia may have a stigma, but it had a name and a cure.  If I really had it, with just one phone call, I could have a name and antibiotics and be cured. 

Two days later, the phone rang and I got my answer.  I did NOT have chlamydia.  

That's when I broke down in tears and cried for an hour.  I felt so stupid, I was crying because I had no STDs.  That is the news that most people like to hear.   I didn't know what to do.  I was in pain and no one believed me.

After spending three months in level 10 pain, completely crippled, I was finally properly diagnosed by a specialist with Vulvodynia and Pelvic Floor Dysfunction.  I started to get treatments that reduced my pain.  The struggle I went through makes me want to share my story.  I never want to meet a young lady who breaks down in tears, wishing for an STD because no one believes her pain.