Choosing a Doctor

Every Endo Sister that I have communicated with has a story or stories of a bad doctor or specialist experience.

I was officially diagnosed with IC and PFD in September 2012 and Endo in November 2012, and have already experienced horror stories from the urologist that diagnosed me and the gynecologist that performed my initial laparoscopy. If you would like, you can read my stories here and here. 

I never want anyone to have terrible doctors, or to experience the awful stories that I have learned of.

 Since I want everyone experiencing pelvic pain to choose the best doctor, I have decided to make a list of personal advice. I have contemplated and searched the internet for the best advice that I can give women who are experiencing pelvic pain.  

Here are some useful tips:

Record all of your symptoms in a pain journal

 Be as specific as possible. By doing this, when you have a consultation you can quickly reference your worst days and the location of your pain. Read about journal ideas here.

Keep a food diary 

There are free calorie counter apps that make this easy. If your doctor says that you need to change your diet, you can quickly and easily show the specialist what you have and have not been eating.

Write down a list of questions

Write down a list of questions that you may have during your consultation. Bring this list and make sure every question you have is answered. Make sure you completely understand every response the specialist gives you. It is very important that you leave the consultation fully informed.

  Have ALL of your medical records

Before going to a new specialist, make sure that you have all of your past medical history with you. You can have your records sent to your new specialist, but it is also a good idea to have them on file personally. Another useful suggestion is to always ask for your medical record every time you leave an appointment.

 Do your Research

 There are many endometriosis support groups, endo sisters, and organizations that can help you find an excellent surgeon. Search the internet, and do not settle. Read reviews online, ask co-workers, friends and family. Word of mouth is an excellent way to hear about good and bad physicians and specialists.

Go with your Gut

If you are having a bad feeling about your treatment, stick with your gut feeling. Most likely you are correct, and something is off. If you are seeing a doctor, and do not feel comfortable in their care, find a new doctor. It is the simplest piece of advice that I can give you, but it crucial.

Do you have advice for choosing an endo specialist or surgeon? If so, leave a comment below!

xo Heather   

Cystoscopy Advice

If any of my readers or twitter followers have IC or are being tested for IC, you will have a cystoscopy. 

Photo Credit: Mayo Clinic

I was diagnosed with PFD and IC during a cystoscopy in September of 2012. When my previous urologist told me that I would be having a cystoscopy I wasn't even sure what it was. I was in pain, exhausted from the pain, confused and thought I would do anything at the time for relief. 

I remember my urologist telling my husband and me that his medical assistant would set up the cystoscopy appointment and that the procedure would last about two minutes. He also told me that I could time him if I wanted.

I knew then that it was going to be an unpleasant experience, but I scheduled the appointment. 

Two weeks went by, and it was the day of my cystoscopy procedure. I had read exactly what a cystoscopy entailed, so I had been trying to mentally prepare myself for the procedure for two long weeks.

Dr. A (my urologist) came in with his medical assistant to start the procedure and numbed the skin. They waited for the numbing to take affect, then started the procedure. It was the most gruesome two minutes of my life. I did not time Dr. A, but if it only took two minutes, it felt much longer. The pain was brutal and I was in pain for a couple of days following. The situation was barbaric.

                                  

Just today, I was talking with one of my endo sisters who also has IC and we were talking about our experiences. My cystoscopy came up and I told her that I will never understand why I was sedated for my colonoscopy but not for my cystocopy. She told me that it sedation is the doctor's choice and that she had her first cystoscopy without sedation. also. Her experience was horrible, and she was traumatized from the experience also. 

She told me that a future doctor told her that doctors who do not sedate patients before a cystoscopy procedure are inhumane. No one should go to a doctor who will not sedate their patients before the procedure. 

So, ladies, if your doctor is going to perform a cystoscopy as a diagnosis method and does not sedate. Run. Find another doctors as soon as possible. We are in enough pain as it is, and do not need cruel doctors to make us feel worse. 

xo Heather 

Endo Journey: Other Medical Conditions

When I first started experiencing the unpleasant symptoms of my disorders, I was just happy to finally be have a name put on my condition. I no longer felt crazy and ignored. 

However, endometriosis can create other problems. Most women with endometriosis have other medical conditions, whether worsened by endo or not. For example, I also live with Interstitital Cystitis (IC) and Pelvic Floor Dysfunction (PFD). I was also diagnosed with IC and PFD before Endometriosis. 

The following is a list of medical conditions that women with endometriosis also live and suffer from:

• Depression 
• Anxiety
• Chronic Fatigue
• Fibromyalgia
• Headaches/Migraines
• Nausea
• Eating Disorders  
• Interstitial Cystitis
• Pelvic Floor Dysfunction 
• Irritable Bowel Syndrome
• Addison's Disease
• Fowler's Syndrome
• Adenomyosis
• Kidney Reflux
• Hypothyroidism
• Diabetes
• Hip Impingement
• Trapped psoas muscle 

 I hurt everyday, but not all of my symptoms are endometriosis. Please don't just assume that what you are feeling is endometriosis pain or symptoms because you finally feel that you were given a name for your condition. If you still have unexplainable symptoms, please talk to your doctor or specialist. 

xo Heather

P.S. If you have a condition that is not listed, please contact me and I will add it. If you have any questions about any of the medical conditions please let me know.  

Malpractice

I am not a dramatic person, I just sometimes feel that doctors did not want to listen to me. I begin to wonder if my doctor's would ever figure out what was wrong with me. Honestly, I wondered if they would ever listen to my symptoms and terrible pain. Like most women with Endometriosis, I have struggled to make doctor's hear my voice. 

 

So, this brings me to what I believe is a valid point: I could possibly have a medical malpractice case.

(Photo Credit: Bain & Rodzik)

Has the thought ever crossed your mind? Did you pursue that thought? Please share your thoughts and opinions.

xo Heather 

Dr. Oz

Dr. Oz showed a segment about Endometriosis and laparoscopic procedures on his show. In case any of you missed it (like I did) here is the segment.  I am dying to hear what you think! Please let me know your thoughts below!!!

 http://www.doctoroz.com/videos/explaining-endometriosis

xo Heather

Endo Specialists

As I have made clear in previous posts, like the one here, I have not had the easiest time with finding a good gynecologist. So, in order to prevent women from experiencing their share of bad doctors, I have located a list of Endometriosis Specialists throughout the U.S., the U.K., and Switzerland. I found this list on the Endometriosis Resolved website and you can locate the list here. I hope this helps all of you better locate a specialist close to you! If there is not a doctor listed near your area, let me know – I will do my best to locate a specialist for you!

If you have a gynecologist, Reproductive Endocrinologist, or Endometriosis Specialist that you would like to recommend, please leave their contact information below.

xo Heather

Photo Courtesy of: Robot Plunger