Friday, April 25, 2014

Response to Dr. Drew's dismissal of Endometriosis and Interstitial Cystitis pain as "garbage bag" diagnoses

Ironically, just a few short weeks after the Endo March and Endometriosis Awareness Month, an incident happened today that only perpetuated the ignorance and misinformation about a common, painful disease. Endometriosis is a debilitating disease wherein endometrial-like glands and stroma cause painful inflammation and adhesions, which can distort or constrict organs. Endometriosis affects 1 in 10 women, or 176 million women worldwide, with an average delay in diagnosis ranging from 6-10 years. Years of misdiagnosis and ineffective treatment negatively impacts the patient's quality of life. The physical, emotional, and social effects of endometriosis are often devastating, but can be avoided with early detection and complete surgical excision. 

Unfortunately, misinformation runs rampant, even within the medical community. It is not uncommon for women to experience delay in diagnosis because their doctors are uneducated in current research, and believe outdated theories that have been disproven. Many are told their pain is "in their heads," caused by hysteria, anxiety, or even that they "research their disease too much." Until my surgical excision of endometriosis from my rectum, vagina, and in my cul de sac, I experienced excruciating pain with pelvic exams. Almost every doctor and nurse to "just relax. It can't hurt that much." One particular nurse looked at me with disgust, saying, "You know a speculum is smaller than a penis, right?!"

 Before my surgical diagnosis, a psychiatrist told me my pain was psychosomatic (all in my head), and that I should not be given pain relief, but rather, I should come back and start therapy. 


That's when I stopped asking for pain medication and just dealt with my pain. I have a sneaking suspicion that I could swallow a porcupine and just keep right on living life. 

Since then, I've been diagnosed (confirmed by pathology) with stage IV endometriosis, which affected my bladder, uterus, ovaries, fallopian tubes, appendix, bowel, rectum, vagina, ureters, uterosacral ligaments, broad ligament, cul de sac, and peritoneum. I have lost my appendix, am scheduled to lose a fallopian tube and undergo a presacral neurectomy, and face possibility of hysterectomy if I continue to show symptoms of adenomyosis. I've been speaking out about my disease for the better part of this year, and have founded an organization that is dedicated to support, awareness, and advocacy.

In any case, we fought the whole month of March to advocate accurate information and effective treatment...and then this happens.   

Thanks Emily Page for typing this up!
Caller: My fiancé has a multitude of diagnoses. She has IC, endometriosis, lactose intolerance. She has no stomach lining. I mean, a bunch of things going on.
Mike: No stomach lining? Is that real, Drew? Can that happen? 
Dr. Drew: No. And by the way, IC is, I assume, interstitial cystitis?
Caller: Yes
Dr. Drew: These are all, these are all sort of what we call functional disorders. Everything you mentioned, everything you mentioned, are things that actually aren’t discernibly pathological. They’re, they’re just sort of what we call “garbage bag” diagnoses. When you can’t think of anything else, you just go, “oh it’s that.” So it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pain and urinary symptoms and health symptoms and all this stuff. And that makes me wonder was she sexually abused growing up.
Caller: Well she..and it’s funny you say that. She actually almost refused to go to a doctor until I begged her to because she was in so much pain. In the 3 years we’ve been together, she’s only seen a doctor maybe twice.
Dr. Drew: And she has 4 different diagnoses in 2 visits? Pretty hard to get that.
Caller: Well, a lot of them happened before she and I were together, but yes she was-
Dr. Drew: She went to see lots of doctors before you. 
Caller: She-
Dr. Drew: Trust me, she saw lots of doctors before you were together to get those diagnoses. Was she sexually abused growing up?
Caller: Yes. Not growing up, no-
Dr. Drew: Okay, magically, magically, wait, hold on! Wait a minute!
Emily: That took, like, 16 minutes to say yes.
Dr. Drew: When people have unexplained pain, particularly pelvic pain, it’s called somatoform dissociation, and the only way her body, which was suffering during those early experiences can tell its tale of woe is with pain. And she really needs to see a trauma specialist not a urologist. You know what I’m saying?
Caller: Okay.
Dr. Drew: So really work on that. It’s a real thing.

Dr. Drew, it is exactly this kind of ignorant dismissal of a woman's pain (and your caller, by the way...did you even let him ask his question?) that leads to endometriosis patients giving up on the medical community, believing that no one can help them. Because Endometriosis IS a pathologically diagnosable disease (I'd love to send along my 15 pages of surgical photos, 3 page pathology report, and 30 minute discussion of my surgery, but I doubt very much that you'll even bother replying to this post), going through therapy will not help her pain caused by damaging inflammation and anatomical distortion from endometriosis. If she were to listen to your advice and see a trauma specialist, NOT a urologist, well...there's a little something called learned helplessness, which I'm sure you're aware of. 

Should this woman go through all this additional therapy (as if the decades most of us spend searching for an official diagnosis wasn't enough), and still not experience relief, what would you tell her then? That it is all her fault? That she can't let the past go and move on? What would you do when she begins peeing blood, or passing black stool, or worse...attempt to end her pain and suffering for good? Would you make her the butt of one of your sexist, misogynist jokes? 

Mike: Also, Dr. Drew, another way that someone can develop unexplainable pelvic pain is by having sex with Alan Thicke. 
Dr. Drew: That's not unexplainable, that's a direct result. It's obvious what's going on!
Mike: There must be some level of camaraderie between you, Dr. Drew, and Mr. Thicke because you have both just torn women in half!
Dr. Drew: We've crushed. 
Mike: Yeah, I don't know if you know this, Alan, but all over Pacadena, California just corpses of females just absolutely split in half! People -
Alan: Yeah, I think I heard that.  
Mike: Yeah, they call it the Pinske! When they see women like that, the forensics-
Alan: They've been Pinsked?
Mike: Yeah, the forensic pathologist comes over, "Yep, she got Pinsked. Poor lady." 

Dr. Drew, not only have you dismissed a patient based on your ignorance (who HAS a diagnosis, by the way), you have dismissed millions of women, dedicated surgeons and scientists researching the disease, a slew of coordinating specialists, such as pelvic floor physical therapists, urologists, colorectal surgeons, nurses, etc by telling her partner that these aren't real diagnoses, that they are "garbage bag diagnoses" used when there's nothing else to explain the pain (completely false, since we undergo biopsies and have pathology reports to prove it).  

How dare you. 

And how dare you follow up a segment wherein you emphasized the possible physical and psychological impacts of sexual abuse with a crass joke about murdering women due to your sexual prowess, and leaving their corpses behind. Mike, you disgust me. I have never heard such a revolting ploy to gain a couple of cheap laughs at the expense of victims of rape and incurable diseases.

Not only that, but by your dismissal of pelvic pain, whether related to endometriosis, IC, or pelvic floor dysfunction, completely undermines and invalidates the individual suffering many of us endure with little to no support. In all honesty, it doesn't matter where her pain comes from...she's in pain! Her partner called you for help, and you cut him off, dismissed her pain, and made a crass joke.

Many dedicated professionals, patients, advocates, and supporters have responded on this incident. Thank goodness for dedicated professionals, like Dr. Ken Sinervo, Heather Guidone, Dr. Andrew Cook, Dr. Camren Nezhat, and Dr. Cindy Mosbrucker who shared their knowledge and support to our community, championing a cause that you so callously trashed.

Some have asked for a retraction. Most have asked for an apology. Some have even offered educational discourse to ensure accurate information be available to both you and your listeners. 

What do I want? 


You're not worth my time. Your obvious backpedaling, where you claimed you "said nothing of the kind," and your lack of remorse or response today has proven one thing in my mind. 

You are not worth us spending another moment worrying about the damage you have done to our community. Instead, I'm going to get back on track spending my time speaking with the members of my support groups, working on my awareness projects, and doing every possible thing I can to promote awareness in spite of ignorant people like you.

Monday, April 7, 2014

Is It Really JUST Pain?

I'm going to be honest with you: I'm angry

Some people might say that's just negativity, bad energy that has no place in this world. Some might say that I am in pain today because of that anger. But anger, like pain, has it's place in the world. It tells us when something isn't right. When your body is in pain, it is trying to tell you something.  That's the function of pain. Our bodies respond to this pain by sending out naturally occurring endogenous opioids. Without pain, how else would we know when to seek help? 

Pain exists to let us know that something isn't right. When I speak with anyone who is having new or worsening pain, it scares me to hear them say that they will just ignore it. Pain is just pain, right? 


If there's one thing that I've learned over the last 15 years living with chronic pelvic pain, it is to trust my body. There are people out there who are trying to sell the idea that we can rise above our pain; that the pain we feel arises from some kind of negative energy, or personality fault. They want you to believe that you can completely think your way out of your pain; that it is somehow healthier to get in touch with that pain; that living with and getting in touch with your pain will somehow heal you. 

Now, as someone who has dabbled with alternative methods of pain management, like acupuncture, meditation, and yoga, I can tell you that those methods absolutely help me handle my pain, especially when combined with other forms of pain management. There are ways of focusing on your breath that can help you get into a calm, relaxed state of mind, and it can become easier to live through the pain. 

But severe pain should never be ignored. 

Last week, after two months of just dealing with my kidney pain, I peed blood. Not just trace amounts of blood...I'm talking real, red blood. As soon as I saw that blood, I knew it was time to stop pushing through my pain and go to the emergency room. It's a damn good thing I did. 

I had a kidney stone in my ureter, and my right kidney was swollen. With a history of retroperitoneal fibrosis, there is a concern that my stone might not pass by itself, and might cause a blockage. The past two days have been some of the most painful days I have ever experienced. On Saturday night, I took a pain pill before collapsing on the floor on the way to the bathroom, screeching in pain. My pain pitched, and pitched, and pitched, rather than getting better. Barely able to breathe, I sat in child's pose and just screamed. 

And then I stopped. My breathing calmed. My pain began to get just a little duller. My pain medication finally kicked in.

I've been peeing blood ever since. 

Pain is not something to be ignored. Pain does not reach a certain point and go no higher (which is why a 1-10 pain scale is all relative). Experiencing severe pain without relief can bring about harmful affects on  many systems of the body. Vomiting, increased heart rate and blood pressure, urinary retention, muscle spasm, fatigue, anxiety, and disorientation can all result from unrelieved severe pain. On top of that, ignoring severe pain can ultimately lead to chronic pain. 

Pain is there to tell you something is wrong. It is OK to seek relief for your pain in whatever way works best for you. You do not, and should not, need to suffer through this. And you most certainly should not be told that your pain originates from some emotional imbalance, or that your pain will go away if you just love yourself more, or get in touch with your womanhood.

Anyone who tells you otherwise is selling something.