Find the Right Doctor For You!

I think as other things have come up in my life, I have forgotten to write about one of the most, if not the most, important things I have learned from having endometriosis.  It is SO important to find the right doctor for you!!  Endometriosis is a real disease and it has real, if invisible, symptoms.  If you know there is something wrong with you, please please please do not let a bad doctor tell you otherwise!  It is OKAY to disagree with a doctor and it is OKAY to get a second opinion and it is OKAY if you simply do not "gel" with a certain doctor.  There is someone out there who will be a part of your support system!  I feel extremely lucky in this one aspect: I love my doctor.  I think she is extremely intelligent, she is open to all types of healing (from surgical to alternative therapies), she is understanding, and very supportive.  I am constantly reassured that she is super smart when I look at articles or blogs and see that I have tried pretty much everything people are writing about.  Also, if I were to ask her a question that she didn't know the answer to, she would simply look it up and tell me she doesn't know but will find out.  

Until I found my "Right" doctor, I had a difficult time.  I had no doubt that I was experiencing excruciating pain out of the blue (although it coincided with a kidney infection and possibly my period) that never let up.  It wasn't something I was prepared to deal with and I never really assumed that my "primary care" doctor wouldn't just take care of it for me.  I had never really had any use for a primary/family doctor other than a few prescriptions or maybe a flu.  I've had sports injuries and experience with orthopedic doctors, but I was not prepared for my intimate dealings with my primary care provider, who I refer to as Idiot Dr., but for this blog, I will call her Dr. Idiot.  What would have been great at the beginning of my symptoms would have been if Dr. Idiot had told me that I needed to see someone who was more specialized.  Boom.  That's all that she needed to say.  Instead, she gave me a whole bunch of random tests, referred me to an Idiot Surgeon who did an incomplete laparoscopy and then basically accused me of being a drug seeker.   Never mind that I was visiting the ER almost semi-regularly or that none of my behavior in the past had ever suggested I would be looking for some good drugs.  I have since read while in the ER that hospitals have to treat your pain as you describe it, or basically take your word for it that you are in pain.  I think doctors should do that until they run out of possibilities.  Dr. Idiot would return my calls at 11pm and was constantly threatening to not refill pain medications, which to me was a terrifying thought because since I still did not have the "Right" doctor, I was scared daily at the thought of this pain getting worse or of my idiot doctor deciding I no longer needed pain meds.  She referred me to someone who deals with nerves in your back.  And I am embarrassed to say that I went because the one thing that struck me from the beginning of my pain, was that it felt just like my period but it never went away.  I look back and realize I inherently knew a little bit about what was going on in my body but I didn't know to trust myself.  I feel like if the situation arose again, I would absolutely trust my body now.  Dr. Idiot never did say the magic words, that I might need someone who has a more specific expertise than hers...  And that angers me to this day.  A primary care doctor or family physician is a general practitioner.  It says so on the door when you walk in.  Not all cases are general.  If cancer is suspected, you are immediately referred to an oncologist or surgeon.  Other diseases also need to be treated by accepting that they are outside your area of expertise.

I found my doctor, Dr. K, from a random referral from a friend of my mom's.  We were looking for any other doctor at that time and had been given no guidance so we decided to try her.  I don't know that she was even taking new patients but my mom basically begged for an appointment and I was seen relatively quickly.  The difference was amazing.  Dr. K took my entire history when I first met her.  She immediately told me she was going to manage the pain and then see about a long-term solution.  She did not once hint that I was making it up or that it was psychosomatic or that I was just acting like it was worse than it truly was.  When I had my surgery, I was able to go to a great hospital with an extraordinary surgeon, who had actually been a teacher to Dr. K.  And so I learned: good doctors will know other good doctors!  If I begin to wonder if I'm making any progress, she will remind me how far I have come.  She knows that illnesses do not exist in a vacuum and that stress and other factors will effect how I'm feeling.  She is encouraging and firm when I find a new medication hard to adjust to or come off of.  Heck, at one point I thought I was asking a pointless question but I didn't know where else to turn and she ended up diagnosing an infection via a photograph I emailed.  She prescribed the correct antibiotic and the infection has not reoccurred.  Oh.  And this was on my toe!  She has earned all of my trust.  

Even her office felt different.  The staff are wonderful and knowledgeable and give off a "positive energy."  Her waiting room is comfortable and the patients are the priority which was not what I had found at some other offices.  The small staff ask me about my life when I see them (although to be fair, I was coming in twice a month for a while while many other women were coming in once a year).  I have had problems with my pharmacy that are really irritating but my doctor's office will handle them and they do it always with kindness and they are always looking out for the patient's best interest.  For more, see my post about "T" and her Kind Office.

I know that there are other issues at play when it comes to choosing a doctor, such as cost, insurance (Dr. K stopped taking individual's insurance after she began feeling like it was hindering her patient care), distance, etc.  With a difficult disease, I think it helps to be near a city.  (I have been to 3 different hospitals so far).  I also know now of different chat rooms or connections that I didn't even know to ask about when I first got sick.  I even read other women's blogs to see if they are doing something I may not have tried yet.  I think women unfortunately need to really advocate for themselves when it comes to what is going on in our bodies.  I didn't know I had endometriosis but I never had one doubt that something was very wrong.  My immediate reaction was also to compare it to my period and that's an important detail.  If you think you may have endometriosis, please know.... your pain is very real and I believe it is terrible!  So please stand up for yourself and go doctor shopping until you find the person who fits into your support system.