Tuesday, March 8, 2016

Michelle's Story - Endometriosis Awareness Week 2016

I am so very excited to share Michelle's story with you today.  Michelle is my cousin (through marriage, and only noting that because there is a worldwide study currently taking place in London on whether endometriosis is hereditary...) and she has been an absolute blessing to me as I walk along through my endometriosis journey. The ability to connect with another person who has gone through what you are going through and who can offer you suggestions and advice and encouragement is like nothing else. Particularly with this disease.  For me, there is the added benefit that she is a medical professional.

I know that she was very nervous about sharing her story, but I know that by doing so she has the ability to touch someone deeply with her words and her experiences.  I truly believe that we all have a story to tell, and that as long as we are honest open and willing, what comes from the heart, goes to the heart.

This is Michelle's Story

How old are you?
I am 32 years old living with stage 4 endometriosis and adenomyosis.

When where you diagnosed with endometriosis? 
I was diagnosed with endometriosis in March 2014-ironically the same month that endometriosis Awareness week occurs. My doctors believe that I likely have had endometriosis for 15+ years.

What lead you to initially seek diagnosis?
I have had very painful periods for as long as I could remember. For years I dealt with horrible pelvic pain and it was always brushed aside as being “normal”. It was not until shortly after we got married that we tried to get pregnant. After a few months of it not happening, I just knew that “something” was wrong. Endometriosis had always been in the back of my head and I actually remember telling people that I knew I had endometriosis but knew that you can’t be diagnosed unless you have a laparoscopic surgery to confirm it.

At my annual gyne exam in 2012, I recall telling my doctor about this. He told me that my pain was normal as long as it lasted for a few days and to give it a couple more months. I went back again complaining of right lower quadrant pain which felt like my right ovary stabbing me and recall at that time asking for an ultrasound. This time I was told that when I got referred to the RE (reproductive endocrinologist) that I would have a ton of ultrasounds. Again I left with no order for an ultrasound.  Fast forward a few months later and I finally got my referral to see the RE. It was when we were in her office and I asked if there was any clear-cut diagnosis that was jumping out at her, and immediately she suspected endometriosis based on my symptoms. An ultrasound revealed a complex cyst and I was sent back to my gynecologist for laparoscopic surgery. My gyne at the time was surprised by her recommendation but obliged anyways.

On the day of surgery, I had asked if he would stage my endometriosis. At this point, I had spent countless hours surfing the Internet, endometriosis blogs, and Dr. Google and I would say that I was probably too informed at this point. My doctor stated that he doesn’t waste his time with that and if they did find endometriosis then it wouldn’t change anything. I remember thinking that was not what I read in the literature.

What procedures have you had done?  Medical interventions?  Lifestyle changes?
 March 2014-diagnostic laparoscopic surgery, hysteroscopy, and tubal ligation as the endometriosis covered my tubes. During this surgery, a general surgeon was pulled in my case to look at the bowels and this doctor said everything looked okay. I later learned that this was NOT the case. Fortunately, my doctor gave me pictures from surgery and this later helped me out a ton!

May 2014-I began having more concerning urinary symptoms and consulted with a urologist. I had suspected I had endometriosis in my bladder right off the bat as I went into this appointment already knowing my stage 4 diagnosis. I was urinating between 30-40 times a day! When I saw this doctor he told me he was 95% confident I had to change something in my diet. After a kidney ultrasound, bladder ultrasound, blood work, and a painful in office procedure called a cystoscopy, he saw that I had a bladder tumor that needed to be taken out. Surgery #2 was booked a few days later and pathology revealed the endometriosis had spread through my bladder.

I returned to my RE after this procedure and was told I needed to have excision surgery for my endo before we continued with any more treatments. I saw 4 different doctors over the course of 3 months before I finally landed in the right hands. I saw 2 gynecologists, a gyne oncologist and finally Dr. Miller who is a specialist in infertility and minimally invasive gynecologic surgery. He is also one of two leading experts in the field of endometriosis in Illinois.

September 2014-I met with Dr. Miller and he wrote up his plan after reviewing my medical history, previous surgical reports and also showing him my surgical pictures. He told me if he was going to treat me, then he was going to have me worked up the right way. I had to see a urologist and colon surgeon and in addition would also need to have a colonoscopy before he did surgery on me. He looked at my surgical pictures and said that the endometriosis covered my colon extensively and it was likely I would need a bowel resection. I started bawling; as all I could think about with my nursing background that I was going to have a colostomy. He also said that I would need to have a partial bladder cystectomy to remove the diseased portion of my bladder.

October 2014-Colonoscopy performed and endometriosis penetrated my bowel causing not one, but two bowel obstructions. Verdict: I needed not one portion of my colon resected, but two and the likelihood of a colostomy was very real.

December 2014-I was booked for surgery after waiting months. It was hard coordinating surgery when 3 surgeons are involved in your case. My consent form read: laparoscopic excision of endometriosis, hysteroscopy, salpingectomy, lysis of adhesions, cystectomy, partial bladder cystectomy, low anterior resection, ileocectomy, possible colostomy and possible open surgery. To say I was a mess is an understatement. I wouldn’t even let my parents come see me before surgery and made them wait in the waiting room. I was in surgery for 8 hours and admitted inpatient for 5 days.

I did not end up needing to have my bladder partly removed due to the location of the endometriosis.  It would have been too tricky since it was close to my ureters and they would have had to relocate them, they felt that it was too risky. I also did not need to have a colostomy as my doctors carefully spent 8+ hours operating on me. I did have 14 inches of my colon removed.  I had what was known as a frozen pelvis. Endometriosis was everywhere and even found a little bit by my liver and diaphragm. I was off of work for 6 long weeks.

August 2015-hysteroscopy and biopsy of my uterus

February 2016- MRI of pelvis and hystersonogram to evaluate for fibroids, endometriosis, and adenomysosis.

I have tried a variety of hormonal methods to help control the endometriosis such as birth control, letrozole, and Lupron Depot, heating pads, hot baths, and painkillers.

There is no cure for endometriosis and there are many side effects and risks to each treatment.

I will be starting another 3 month course of Lupron Depot which will basically shut my ovaries down and put me in a menopausal state to cut of the estrogen which feeds endometriosis.

I have made some diet changes but find it difficult to commit to the diets that are recommended for endometriosis (those include eliminating all processed foods and sugars, dairy, and gluten). Instead I have made attempts to choose healthier foods and live a healthier lifestyle.

What was your life like pre-diagnosis?
 I was on birth control since I was eighteen. I truly believe that being on the pill masked the signs and symptoms of endometriosis. Up until I was in my late twenties, my periods were painful but never prevented or interfered with my life. It wasn’t until then when I started developing debilitating pelvic pain. People often ask what it feels like. To me the best way to describe it is having a hundred open bleeding blisters in my pelvis being wrapped and pulled with barbed wire. What I know now is that a lot of the lower abdominal pain I was experiencing were gastrointestinal and bladder symptoms as well. My periods were always painful but as I got older the pain became worse and worse.  I had bowel and urinary symptoms. Sex was painful. I was exhausted all the time. There were times I couldn’t get out of bed. I passed out on the bathroom floor and crawled back to my bed on multiple occasions. I even brought myself to the ER on an occasion. I eventually left because the wait was too long.  Eventually, the pain was so horrible I found myself counting the days to my next cycle wondering what day of the week it would fall on and how I could arrange my workdays around it. I also found myself canceling plans and scheduling things around that time. Around June 2014 I began experiencing chronic pelvic pain where I was taking Tylenol and Ibuprofen around the clock for approximately 6 months straight. I was also prescribed Tramadol and Norco for the pain as well. Surgery could not come sooner!

What has your life been like post-diagnosis?
Life after having my excision surgery and bowel resection has been much better. I finally have an answer to all the symptoms I had been experiencing. My periods are still painful but I can function like a normal person most days. I no longer have to use FMLA and only take Tylenol and Motrin for pain. The last time I had to take a narcotic was 2 weeks post op.  I often worry with each month that passes when and if my pain will return and when my next surgery will be.  I have become more paranoid about each twinge and symptom after surgery, worrying if something else is wrong or if the disease has spread again. My husband and I have learned the true meaning of “for better or for worse and in sickness and in health”. He has been there for me every step of the way and for him I am grateful.

On a professional level, I have so much more understanding on what pain is and I feel that I can really empathize with my patients. One does not know the true meaning of surgery unless you have a surgical scar on your body.

Did you know about endometriosis prior to your diagnosis? 
Yes. I have a friend who also has endometriosis and we have shared a lot of information with each other. While it is great to have someone to talk to and share with and have someone who just “gets me”, I do not wish this disease on anyone.

 I remember driving to work one day hearing a commercial for an Endometriosis Research Study and to this day I can still recall the words that were spoken to me. “If you are experiencing extreme pain, find out if you could have endometriosis. If you are a women between 18 and 49 and think you may have this condition, contact the Endometriosis Research Study today”.  I also had done a ton of research and was very well educated on the disease. I actually self diagnosed before I was formally diagnosed through surgery. My husband thinks I am crazy because I would spend countless hours doing research and say “I think I have endometriosis” and then when I did have the diagnosis confirmed and did more research, I would say “I think it spread to my bladder and bowel”. Needless to say, I was right.

Share any difficulty you have sharing your story with family/friends? 
I have never been one to over share about myself partly because I did not want people to feel bad for me or treat me differently. I am also an extremely emotional person and it was a very emotional time for me and for this reason I did not open this part of my life to people.

People often react strangely to invisible illnesses, too, particularly those centered around menstruation. They either don't talk about endometriosis or the treatments with you, or they offer well-intentioned but incorrect advice based on what they've heard from others.  This was something I did not want to open myself up to. I felt physical pain and emotional pain. I lost some relationships. I felt frustration, aggravation, a sense of inadequacy, fear, and depression.

Anything you want to share about your medical team/doctors?  
I have the best team of doctors. I am soo fortunate to have found Dr. Miller and Dr. Park. They never once treated me as if the pain was in my head and took the time to thoroughly work me up. Had I let another surgeon operate on me, I would have never known I had 2 bowel obstructions and my outcome could have been worse.  I was told that eventually my bowel could have perforated.  Dr. Park by the way is my colorectal surgeon who often operates with Dr. Miller on complex endometriosis cases.  I literally credit these two doctors for saving my life, eliminating as much of the disease from me as they could and help me live practically pain free.

However, finding these doctors was no walk in the park. It is quite difficult to find a doctor who is an expertise in endometriosis. I scoured the Internet and found two specialists in Illinois. Dr. Charles E. Miller and Dr. Frank Tu. The difficulty I had at the time was that I had an HMO and both of these doctors were considered out of network. So I was advised by my RE of some doctors to consult with in my network.

My first doctor who did my laparoscopic surgery obviously was no expert in endometriosis since he had initially told me that staging is useless and also that there is no treatment. So I moved on.

The next Dr. I met with has actually done many endometriosis surgeries but the second I met him in his office it just went downhill from there. Me being the good patient I am brought along my surgical pictures and asked if he wanted to see them. While typing on his Ipad he proceeded to tell me that he did not need to see them because he knows what endometriosis looks like. Strike One. When I finally insisted he look at them he   said to me “wow your pelvis is a trainwreck”. Double strike. Then he proceeded to type on his Ipad and said “so when would you like to book surgery for?” Strike Three. I did everything I could to get out of his office as fast as I could. I told him I needed to consider all my options and discuss further with my husband. He then proceeded to ask me in a rather rude way why I did not want him to do my surgery. So I left his office and never looked back.

I went back to my RE and asked for another referral for another doctor. She gave me a referral to a gyne oncologist. Gyne oncologists are known for their excellent and meticulous surgical skills. I felt like I was getting somewhere. Getting in to see a gyne oncologist proved to be difficult. I was asked to fax my abnormal pap results and pathology results. Ummm what? No I don’t have cancer, I just need to meet the Doctor to see if he can help me with endometriosis. Luckily I was able to get in quite easily as my RE went to medical school with him and also worked with him during residency together.

So I met with the gyne oncologist and I absolutely loved him. He spent over 2 hours with me that day, reviewing my records, pelvic exam, and he sat down with me for over 45 minutes explaining my options and what he would do and told me to think about things and to call when I was ready. He was also honest and upfront with me telling my case would be moderately difficult and that he really only does about 10 endometriosis cases a year. During my consult with him, I asked him what his thoughts about Dr. Miller was as my research showed that he has a significant amount of experience with endometriosis. He said he is an excellent doctor and that I should see him. I told him that I have been wanting to see him and while Dr. Miller accepts my insurance and is in the hospital system I work for; I am not in his physician-hospital organization (PHO). He has privileges at a different hospital in our health system. So this wonderful doctor wrote in his consult note that I would be best treated out of network by Dr. Miller!  It took some time but the medical director at my work finally approved me to see him out of network. I finally felt like I had some hope.

I want to share this because one of the most frustrating things for women and girls with endometriosis is finding the medical help we need. What we need is a doctor with surgical skills, thorough knowledge of endometriosis, understanding of the various treatments, openness to complementary approaches and compassion.

What is your hope in sharing your story?
My hope in sharing my story is to help educate others and for you to be your own best advocate. Terrible pain that interrupts your life is not normal! Even though the media and society tell us that menstrual pain is "part of being a woman" — it isn't! Any woman or girl who suffers from pelvic pain, painful periods that keeps her from living her life the way she sees fit, infertility, GI or urinary dysfunction associated with their cycle, or painful sexual activity should see a doctor. If the doctor dismisses you, find one who will listen just as I did!

My life has revolved around endometriosis for quite some time, both professionally and personally. It changed the course of my entire being — in some bad ways, and in some really great ways. I would not be where I am now or have met the incredible women and professionals I have the privilege of collaborating with. I'm well (for now), after my long and difficult journey. Still, too many others are not well, and so for them, I fight onward.

Another reason why I chose to share my story is that there is a serious lack of education, funding and physicians that know how to properly treat this disease.  If I can reach just one person by sharing my story, I feel like I have accomplished something.

And with that I will leave you with one of my all time favorite quotes. “Be kind, for everyone you meet is fighting a battle you know nothing about”.


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