Wednesday, March 9, 2016

Endometriosis Myths vs. Facts & Additional Information - Endometriosis Awareness Week 2016

There is so much misinformation out there about Endometriosis.  I wanted to close out Endometriosis Awareness Week this year with a list of Myths vs. Facts to help spread accurate awareness of this disease, and some additional resources that may be helpful.



First, though, I want to thank everyone who took the time to share their endometriosis stories here, with all of you.

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.  


Secondly, I want to thank all of you who popped on by here over the last seven days to read these stories.  Thank You! *mwah*




MYTH - Having a hysterectomy will cure endometriosis.


FACT -  Having a hysterectomy will treat endometriosis only on the organs that are removed.  If all disease is not removed you will continue to experience symptoms.  Since endometriosis can grow outside of the uterus, the removal of reproductive organs will not remove the endometriosis.  A hysterectomy can, however, be an way to treat many of the more painful symptoms of endometriosis (such as painful and/or heavy menstruation) .
From a medial standpoint, there has never been a biopsy controlled study showing that menopause cures endometriosis.  The same is true with the removal of the ovaries.
If the endometriosis implants are responsible for symptoms such as pain with intercourse, diarrhea, painful bowel movements, painful or frequent urination, than having a hysterectomy performed will not change these symptoms.

MYTH - Endometriosis always leads to infertility


FACT - Though endomertiosis can cause infertility in approximately 35% of women who have it, pregnancy can be achieved with the right treatment and partnership with the right healthcare professionals.


MYTH - Endometriosis can be diagnosed through ultrasound, MRI, CT scans or other diagnostic test.


FACT - Endometriosis can only be diagnosed and staged positively, through surgery.  Either by having a laparoscopy or a laparotomy where biopsies are taken.


MYTH - Hormonal treatments cure endometriosis


FACT - Though some women experience long term relief of symptoms through hormonal treatments like birth control pills, progesterone, and lupron, they do not eliminate endometriosis implants. Though some implants may become smaller, less visible or less hormonaly active with these medical therapies, they do not disappear.  Once medical therapy is stopped, symptoms tend to reappear.

MYTH - Lifestyle changes cure endometriosis


FACT - Though some women experience long term relief of symptoms through dietary, exercise and lifestyle changes, they do not eliminate endometriosis implants.

MYTH - Pregnancy cures endometriosis


FACT - During pregnancy ovulation stops and a woman's body is deprived of estrogen .  This can reduce the symptoms that she may have been experiencing prior to getting pregnant, but it will not cure or eliminate endometriosis.


MYTH - Period pain is normal


FACT - Pain is our body's way of telling us something is wrong, it should not be ignored.  Though many women and girls experience pain each month around menstruation, severe pain that interferes with daily life is not normal and should be brought to a medial professionals attention.

MYTH - Endometriosis is cancerous


FACT - It is not.  The connection between endometriosis and cancer is not fully understood and needs more medical research.


MYTH - Endometriosis is hereditary


FACT -  There is genetic theory being studied worldwide by doctors based in London. There is strong evidence that endometriosis is, in fact, hereditary.  Early studies have shown that women with a family history of endometriosis are more likely to have a daughter who suffers from this disease. This theory is still being studied and no evidence has been published as of yet.

MYTH - Endometriosis is a rare disease


FACT - It is a painful, chronic disease that effects 5.5 million women and girls of child bearing age in North America, and millions more worldwide.  It is the most common gynecological disease.


FACT - Endometriosis is a chronic disease with no cure







What is Endometriosis?
Mayo Clinic 

Here are a list of on-line resources that may be helpful in researching Endometriosis
The Advanced Gynecological Surgery Institute 
Endomestiosis Association
Endometriosis Research Center
Endometriosis.org - Global Forum
Endometriosis Institute
World Endometriosis Research Foundation
Center for Endometriosis Care
World Endometriosis Society

On-line Endometriosis Support
*Many of the organizations listed above have support groups available*
WebMD on-line forum
Daily Strength

Endometriosis Facebook Groups
*There are MANY!  These are the ones that I belong to and find helpful, informational and supportive*
EndoCenter of Chicagoland
Finding Peace with Endo
Powerful Endo Women

Keep an eye on this!
Endo What? Movie

...and, check these out
Peace With Endo
Rewire Life

Really great article that I think is worth checking out
How to know if your period pain is really endometriosis (Elle November 2015)

Books that I have found helpful
*Just my two-cents*
Integrative Women's Health - Victoria Maizes, MD & Tieraona Low Dog, MD
From Pain to Peace With Endo; Lessons Learned on the Road to Healing Endometriosis - Aubree Deimler
Endometriosis For Dummies - Joseph W. Krotec, MD & Sharon Perkins, RN
Menopausal Years: The Wise Woman Way - Susun S. Weed



And, please, remember to surround yourself with supportive people.  If a loved one or close friend doesn't understand what you are going through, open up those lines of communication and explain what you are going through.  A great way to start that conversations is "What do you want to know about my endometriosis?"  They still may not "get it".  And, that's okay.  As long as they are willing to understand, there is hope of being understood.  Stay clear of the naysayers or those who diminish you or your symptoms in any way.  Negativity exists out there, we all know that, and we are all going to experience it.  Don't let someone second guess what you are going through, though.  They are not being supportive.



Information exists out there.  
Education yourself, find the reliable sources and spread them. 

Awareness is key  
Become an advocate  
Tell your story & scatter hope 













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”.





    

International Women's Day - Endometriosis Awareness Week 2016



Today, Tuesday, March 8, 2016 is International Women's Day.


"You can celebrate International Women’s Day by supporting a top-rated charity working to ensure women continue to thrive and make a difference for generations to come. A donation to a highly-rated charity working in this field is a great way to honor the women who started it all and to assist those still carrying out this journey of equality. Keep fighting and keep celebrating!" (Charity Navigator Blog)

Endometriosis Association (Milwaukee, WI) is the only rated endometriosis organization on Charity Navigator, "your guide to intelligent giving." Should you be so inclined to make a charitable contribution today, in honor of International Women's Day, please research your options before giving.

Here is the link to the "rated" endometriosis organizations on Charity Navigator
Here is the link to the "unrated" endometriosis organizations on Charity Navigator


Monday, March 7, 2016

Aubree's Story - Endometriosis Awareness Week 2016

I am very honored to share Aubree's story with all of you today.  Very much so for selfish reasons, too.  I have Aubree's book.  It was passed along to me by my cousin Michelle (whose story you will be able to read tomorrow) because, "you're into that kind of stuff".  
This, this right here is what rings true to me and what I love about Aubree:

"When you feel bad all the time I suppose you get used to it. I didn’t realize how bad I felt until I started to feel better. And feeling better inspired me to feel even better."


It was encouraging to read another person trying non-medical/non-traditional forms of dealing with their endometriosis.  It was through her that I was able to find Audrey Michel and continue to be encouraged on my journey. 

Aubree is an integrative health coach and the founder of Peace With Endo.  You can connect with her via social media here:http://peacewithendo.com



This is Aubree's Story

I suffered with extremely painful periods from the beginning. I complained about them for years to my doctors, but no one paid them much attention.  I was conditioned to believe that the pain was normal.

When I was 17, I went on birth control pills, which I continued to take for the next decade. When I got off of them late in my twenties, the pain with my periods returned with a vengeance causing me to miss days of work each month. I suffered with contractions in my uterus, nausea and diarrhea that left me weak and bedridden.

As time passed the pain caused me to suffer almost every day. I was exhausted, bleeding irregularly, and had awful pain after sex. I started to have consistent pains in my bladder and lower back.

It was a co-worker who initially mentioned endometriosis to me. One of her good friends was struggling with it. I had never heard of it. I had no idea what it was.

I started to research it and spent some time in online support groups. It didn’t take long for me to relate to the stories of these women. I had all the symptoms. After struggling for 17 years with extremely painful periods, how had I not heard of endometriosis?

I approached my gynecologist about it and she agreed that endometriosis was a possibility, but the only way to know for sure would be to have surgery. This didn’t sound very good to me. I had to go under and get cut open for an official diagnosis. Was it worth it?

After pondering this for a few months I eventually decided that I wanted to know if this disease was growing inside of me. I was concerned about the impacts it may be having on my fertility. So, I booked the surgery.

It was confirmed that I did have endometriosis. I was 29 years old.

In my follow-up visit after surgery I was offered two options: get back on birth control pills or get pregnant as soon as possible. My surgeon proceeded to sell me on a fertility study at the hospital that involved a barrage of testing and drugs.

After getting cut open and gassed up, pregnancy really was the last thought on my mind. How was I going to be able to take care of a child when I felt so horribly all the time?

I feel into a deep depression. I was filled with so much negative information about this newly named disease: there is no cure, it’s only going to get worse, you may never get pregnant.

I stressed out about it all. It seemed so hopeless. I spent any time that was not working under the covers of my bed with my heating pad. I was exhausted.

There had to be another way.

As I was researching endometriosis online I came across stories of women who were able to manage pain with dietary changes. These stories gave me hope. With little other options I started on what has been coined the “endo diet”.

As I cut out foods from my diet, I began to recognize the connection between the foods I ate and the pain that I was experiencing. Once I eliminated things like gluten and dairy, my digestive issues improved big time. The daily headaches I was used to stopped.

When you feel bad all the time I suppose you get used to it. I didn’t realize how bad I felt until I started to feel better. And feeling better inspired me to feel even better.

So, I dove head first into the world of health and wellness. I began to understand how my body worked. I became fascinated by the synergy of systems in my body and it’s innate desire to find homeostasis.

I grew up with a definition of health that meant popping a pill to solve every issue. This was re-defined for me as I began to study teachings in Ayurveda, Traditional Chinese Medicine, and functional and integrative medicines.

I learned how important it is to address the health of my digestion in order to improve my immune system, in order to ward off endometriosis. I began to understand why it was important for me to eat a certain way and manage my stress levels.

I began to examine the interplay of whole healing encompassing mind, body and spirit. The pain from endometriosis forced me to take better care of myself. It forged me into a spiritual journey to finding love for myself.

I’ve made so many changes since I was diagnosed in 2011, and I feel so much better. I’ve been able to stop taking all prescription and over the counter pain medication and have experienced what it is like to have mild period pain again, without the aide of birth control pills.

I chronicled much of my journey to healing on my blog at www.peacewithendo.com and in my first book From Pain to Peace With Endo: Lessons Learned on the Road to Healing Endometriosis. 


Hi, I’m Aubree Deimler, an integrative health coach and founder of Peace With Endo I support women with endometriosis manage pain through natural methods: diet, lifestyle and positive thinking. I am deeply passionate about wellness and inspiring other women with endometriosis to reconnect with a life filled with love and positive rhythms. Connect with me further at peacewithendo.com.


Sunday, March 6, 2016

What Does Endometriosis Look Like - Endometriosis Awareness Week 2016

I'm so totally not going to show you the medical photos.  But, if you're interested in that sort of thing, here ya' go.

What I want to show you is what someone who has had four Lupron injections looks like.

Someone who has a decreased white blood cell count due to those Lupron injections, what she looks like.

What someone who is on Lupron with decreased white blood cell counts during flu season looks like.

I'm NOT this sick!  And, that's what I'm angry about.







I shared my story here in a multi-part installation.  If you are interested in reading it, here are the links in order

A Little Like This- or That?
My Endometriosis Story {Part 1}
My Endometriosis Story {Part 2}
My Endometriosis Story {Part 3}
My Endometriosis Story {Part 4}
My Endometriosis Story {Part 5} - Closing Out


To find out more about Endometriosis you can visit The Mayo Clinic site

Through sharing the stories of women who have Endometriosis during Endometriosis Awareness Week, my hope is to spread awareness and understanding of this disease.

Here are the stories that have been shared already

Audrey's Story - Endometriosis Awareness Week 2016
Ashley's Story - Endometriosis Awareness Week 2016
Maxine's Story - Endometriosis Awareness Week 2016

I'll be rounding out the last three days of Endometriosis Awareness Week with more stories and information about this disease.

Thank you for your support during this week {loves & hugs}






Saturday, March 5, 2016

Maxine's Story - Endometriosis Awareness Week 2016

I put the call out to "Finding Peace With Endo" on Facebook, looking for anyone who would be willing to share their story.  In addition to Audrey answering that call, Maxine reached out to me saying that she would like to spread awareness of this disease as well.   I shared Audrey's story on Wednesday.  And today I am so fortunate to share Maxine's. Maxine openly shares her medical journey and quest for understanding.

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.

Thank you, Maxine, for your honestly and openness!  Your story has the ability to help so many.




This is Maxine's Story

I was 45 yrs. old when I was diagnosed with Endo, 

I was told at the Women's Hospital in Birmingham UK after a scan for checks on pain to my side I'd been having that I had a bit of Endometriosis on the left side of my pelvis /ovary area, this was March 2015 . 

I had started getting really painful twinges in my left side especially around my period time but for a while after the period for about two weeks post and my periods had become heavier, it wasn't 'normal' pain it was like a burning stone inside me that throbbed and hadn't been there before, it seemed to ease after Id been to the toilet, but progressively became worse. I had mentioned it to the doctor several times but was initially told it could be bowel related and to change my diet eating more fruit and fiber . I did this and at first it seemed to ease it a little but the pain started getting worse and the heavier periods made me go back again and demand further  investigation, I was also not getting pregnant and after trying for over a year thought it might be worth a look in to.  I was sent for an internal scan and external at the Women's Hospital about a month later .  

After being told there was a small amount of endo on the left side and a small cyst in my ovary and a small fibroid I was then going to be referred to another hospital for further investigation. I had to go to the Priory Hospital in Edgbaston , Birmingham Uk to see a specialist gynaecologist. I had a consultation, an internal on the first day where she confirmed endometriosis right at the back of the cervix.  I was then booked for bloods to check traces of Endo and an MRI Scan, the bloods showed up traces of confirmed Endo and the MRI scan showed severe endometriosis on the left hand side all over my ovary, near the bowel and at the back of the cervix wall, three ovarian cysts called endometriomas, small fibroid in my womb, tilted womb ! 

Due to all of this I was offered either hormone treatment to shut everything down .... which could bring on early menopause I was told, or a Laparoscopy which would drain the cysts and remove some of the endo where possible .  

I had the Laparoscoy in Sept 2015 . 

Since the Laparoscopy I have read so much in to Endo (and still reading up on it) so that I could make some life changes to improve my situation as it isn't something that can be easily be fixed if you like.  I have started taking Vit B6, Omega 3 Oil (krill oil ones), I avoid chocolate or too much sugar, Soya Lecithin, alcohol I have reduced. Before that time of month I eat bananas more and drink more water and definitely less alcohol which seems to be a headache causer for days. 

Pre Diagnosis - I was having heavy periods which would make me drained, light headed, night sweats, feel nauseous, headaches, severe pain for at least the first few days, no appetite, very teary and down and weak, no concentration and pmt and post sometimes.  
Since the diagnosis I have been able to make some life changes that have definitely helped me, since the Laparoscopy I have had less pain, shorter periods, less headaches if none at all, less weakness and no night sweats, period times had definitely been a lot easier to deal with . 

Prior to my diagnosis I had heard of Endo and had looked in to it some what wondering if I had it but when I asked at the doctors was always told that I didn't have it?! and that I would show other symptoms if I had Endo.... an old flat mate had got Endo and used to run an Endo Helpline and she even said she thought from what I had mentioned that I could have it but with not being diagnosed and not really wanting it I think I didn't pursue this and just lived with really painful periods thinking this was just unlucky for me ! 

Since being diagnosed I have found my partner really supportive and he has dealt with it well but its hard for me to explain sometimes how I feel and that I can be angry about things and want to cry but I don't want to go in to great conversation to him on how I feel as he cannot take it away anyway. 
At work as I have male bosses, I am a very private person anyway and I don't want to have to explain anything about my body in such a personal way so if I had to say about my laparoscopy one of my bosses wouldn't want to know anything was almost like yep yep whatever you have to do ... and the other one wanted to know too much and go in to all the details so I found it hard both ways ! 

Socially I find it hard at times because people want to always drink loads and if it's coming up to that time of the month I know drinking too much alcohol is really going to aggravate it so I feel awkward about getting involved ... one I don't want to explain why i'm not drinking but to them it may seem anti social so its a tough one , even that one I have to keep  reminding my partner on this and he doesn't always get it. It is sad and frustrating because I used to have more fun going out but now I feel my life is restricted. 

I'm disappointed that the medical profession didn't look in to my pain earlier I cant help thinking that if they had caught it earlier I could have changed things quicker , helped me with fertility issues quicker, had less pain over the years.  When I first went to the doctors they said they couldn't help me with fertility issues due to my age I was (45) and I know this may be old for some but I am still hopeful I don't smoke, I'm not over weight I love children and still have the desire to have a child naturally .... I don't know why with all the progression that the medical world does that they are so anti older women, I have far more to offer now than I did in my 20's and each to their own. I was told though ethically it wouldn't be right ?!  I told them that I didn't want help with IVF etc anyway I wanted to know WHY I wasn't getting pregnant and why I was in so much pain.  I think this was dealt with wrongly, is it their decision to choose to not allow me to have help having children but help someone else due to purely age ?! isn't that ageist ! I was told I am still fertile and other than my Endo I could still potentially get pregnant so why so against it , financially too I'm better off isn't this all better for the child , plus my partner is ten years younger than me so would they not help him , how does that sit ethically ? 

The consultant at the Priory hospital was lovely and was not judgmental about my age and still having the desire to have children hence why I chose there and not with the first hospital that refused any help, the Women's Hospital.  The Priory just gave me the bare facts and said it was my choice, I have chosen to still live in hope of having children for now and to deal with things naturally ie acupuncture, herbal medicines and supplements and healthy diet . 

Finally my hope in sharing my story is to recognize symptoms of Endo quicker so women don't suffer and don't think that a really painful period is 'normal', that the condition is talked about more ,understood more, cures are found for it , women can understand how to potentially ease the symptoms of it etc . Doctors test for it quicker and don't fob people off with pain killers.  Sharing issues like these help, I know that and appreciate a listening ear and welcome the opportunity to share my story to help others hopefully . 

Friday, March 4, 2016

Ashley's Story - Endometriosis Awareness Week 2016

I put the call out to "Powerful Endo Women" on Facebook, looking for anyone who would be willing to share their story. I am so grateful that Ashley answered that call!  Her story is so powerful and hinges on her desire to help others with this disease not feel as alone as she did.

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.

Thank you, Ashley, for your honestly and openness!  Your story has the ability to help so many and I'm so thankful that you are sharing it here.


This is Ashley's Story


How old are you?
28

When were you diagnosed with endometriosis?
When I was 17 years old- just two days after I graduated high school.

What led you to initially seek diagnosis?
When I was 15, my menstrual cramps were terrible. It became even worse over the next two years with any physical activity. The back and leg pain began and the cramps moved outside my cycle. One day, my legs even gave out from under me. I collapsed at my locker from the pain. I went to the school nurse and we began researching. I knew something was wrong when I was lying in fetal position on the floor crying.

What procedures have you had done? Medical interventions? Lifestyle changes?
I have had 5 laparoscopies and 4 D&C’s in the last 11 years, with my last lap being a year ago.  I went from a stage 1 to a stage 3. I have been on multiple forms of birth control, ranging from combination pills, progesterone based pills, the injection form, the patch, and what I have now which is a 3-year IUD. The side effects were difficult with some of them so I had to switch. As far as lifestyle changes, I tried to add more healthy foods into my diet to make up for the not so healthy foods I still eat. I tried to limit my consumption of too much sugar to avoid migraines or low blood sugar episodes I have recently battled. I try to be off my feet when I can, taking naps after work because of the fatigue, and just make myself maximize the energy I do have instead of burning myself out doing too much.

What was your life like pre-diagnosis?
My life was a lot more carefree. I liked being more active back then- running, biking, walking for hours. I had so much energy! My life didn’t involve chronic pain, medications, doctors, hospitals, specialists, and medical tests; talking about fertility- I was a happy teenager who never thought she would get sick.

Did you know about endometriosis prior to your diagnosis?
I actually did. When I started getting really sick, my high school nurse brought up the idea of endometriosis. I had no clue what it was and I researched. My mother also brought up endometriosis after she noticed my symptoms. I researched for months to better educate myself. After doctors misdiagnosing me and brushing off my problems, I was referred to a specialist. I’ll never forget what he told me- “Ashley, I truly believe you have endometriosis. I’m telling you this as if you were my daughter. I think we need to perform a laparoscopy.” While nothing braces you for that diagnosis, it definitely helps to educate yourself.

Share any difficulty you have sharing your story with family/friends?
My family was very open and understanding. They went through every step of this journey with me. Friends and boyfriends were another story. While my friends were supportive, I was met with that blank stare when you say the word “endometriosis.” Even worse is when you’re willing to talk about it but they don’t want details of a gynecological disorder. And you get the same questions- “How is this possible? You don’t look sick!” “Can you have children?” “Can’t you just take a pill and get better?” I tried very hard to help those in my life understand without making my story out to be an emotional tale resulting in pity. But any discussion requires patience. I found it easier to practice with an online support group to open up more with those that truly understand. Now I can openly speak with my best friend and all my family and friends with ease.

Anything you want to share about your medical team/doctors?
This wasn’t easy to come by! I went to a doctor that said I was too young to have endo and gave me IBS pills. The doctor that diagnosed me ended up not being able to help me past the initial diagnosis, causing me to find one of my current specialists. He helped me so much over the last few years. Yet, I also travel to a bigger city hospital in my state. There is a specialist down there my doctor felt was worth looking into. He even got me into a research study with new medical advances being discovered. Although it’s a lot to keep up with a general physician, a specialist in my town, and a specialist two hours away, I love the caring team I have in place.

What is your hope in sharing your story?
My hope is that I can continue being an advocate and raise awareness for this misunderstood disease. I can help be a voice for someone who knows something is wrong.  By sharing my story in the past, I have helped friends get diagnosed after struggling in pain. As a teen, I felt more alone than ever until I found a support group online that gave me information with people reaching out. I never want anyone to feel as alone as I did when there are so many awareness groups now. If you know something is wrong, don’t let anyone stop you from taking control of your body. And just know you have an army of endo warriors behind you! 

Thursday, March 3, 2016

Audrey's Story - Endometriosis Awareness Week 2016

I cannot tell you how excited I am to start off Endometriosis Awareness Week with Audrey's story. When I went to Facebook asking to help; asking for women to share their stories about endometriosis Audrey was one of the first people to reach out to me.
I love that her story is about finding and embracing herself, about showering herself with unconditional love, about self-care.
Audrey is a writer, speaker and spiritual growth coach.  You can connect with her via social media here:



This is Audrey's Story

For years I felt pressure to tell my story with endometriosis in a certain way; how long ago were you diagnosed, what stage is the disease in, what's your pain level, how many surgeries have you had, etc. (For the sake of discussion, I was diagnosed at age fourteen with stage 1 endometriosis and incredibly high, consistent pain. Over the next seventeen years, I had four laparoscopy surgeries, two rounds of Lupron, and ingested more prescription pain pills, muscle relaxers, hormones, and mood stabilizers than I’d like to admit.)

I never identified with this formula. I clearly have "endo stats" but, it wasn't until about a year ago that I accepted that my medical history is not my story.

Owning my endometriosis story starts the day my endo ended. My story starts the day of my fourth laporoscopy surgery as my surgeon told my husband and I there was no visible sign of endometriosis. My endo story starts the day my specialist told me, "There is nothing more I can could do for you." My endo story started the day I embraced my demons and embraced that endometriosis is in my heart, it is in my head, it is in my spirit, and it is in every cell in my body.

Endometriosis hurt me.

Endometriosis hurt every single part of my being. Endometriosis took me away from me. I didn't love me. I didn't love my body. I didn't love living my life.

* * *

Did you catch that? No visible signs of endometriosis were found! How great! I was free of the disease! This was supposed to be the best day of my life, everything I had dreamed of…endometriosis was GONE! Except I was in more pain than I had ever been. I didn’t know where to turn. I didn’t know what to do. I clung to medical professionals more than ever; racing down the rabbit hold of more experts, more tests, more treatments, and more pills. I went to every specialist in any discipline that seemed like they might have an answer as to why I hurt so bad. My quest for LESS pain only created MORE; more chaos, more confusion, and more obsessive thoughts of how much my life SUCKED.

Throughout 2008-2009 my perspective and beliefs were shifting. And more importantly, my heart and intuition were staging an intervention. I didn't know it at the time, but my story was just beginning. What I identify with as my endometriosis story is the journey to dig out of the hole coping with endometriosis and chronic pain put me in. In dealing with day-to-day life with chronic pain and disease I created many unhealthy habits; disconnection from myself and my body were the worst of it. Between the fog of medication, the "I'm Fine" mask, and a high pain tolerance, my body, mind, and spirit were numb. Owning my pain and my endometriosis meant accepting the physical, mental, emotional, and spiritual pain and trauma I'd avoided for over half my life. Welcoming pain and trauma as a part of my story sucked, I never wanted any of it. I wanted (and thought I was living) a life of perfectly checked boxes off the “you’re-supposed-to-do-this-to-have-a-sucessful-life list".

Today my life looks very different than it once did. I no longer have the 8-5 corporate career I went to college for. I no longer feel pressure to keep a perfectly clean home, or attend every social gathering I said yes to. Most days I get out of bed around 8:30am after doing body work and listening to inner wisdom. Once or twice a week I have therapy sessions alternating between acupuncture, kinesiology, trigger point and energy release massage, and chiropractic. I know my body requires a lot of maintenance to remain pain free and at optimal physical, mental, and emotional performance.

I now allow myself to feel all feelings and sensations, even if theyre uncomfortable or painful. I believe my sensitive body is powerful and I view physical pain or tension as communication from my emotional body; a road map for uncovering negative thoughts and beliefs. Listening to my body is a tool for discovering unhelpful mental patterns and beliefs. I've made it my business to honor my body and to listen to my body, and to inspire women to do the same.

I am obsessed with self-care and maintaining unconditional self-love because I know what the opposite feels like. It's pretty shitty. It took my living through darkness and hitting rock bottom to be okay with spending any amount of time, money, and energy on my wellness needs. I am worth it. So are you.


Now I know my endometriosis story has power. My story picks up where the doctors left off. My story starts where I discover and embrace me. All of me. I am the only one with the power to shower myself with the unconditional love needed to dig out of the corner this disease put me in.


Audrey Michel began sharing her journey to wellness in her blog, “Rewired Life,” in early 2013. By that summer, her love of writing began to fill the pages of her new book. As her passion for sharing her message expanded beyond writing and into public speaking, Audrey discovered how vulnerability in storytelling inspires and empowers audiences to become their best selves. Whether it is in our personal lives, relationships, health, or businesses, we all have obstacles to overcome and layers to peel back.
As she recounts in her book, Rewired Life: A Journey to Untangle Chronic Pain and Endometriosis, Audrey endured chronic pain and disease for half her life. At her breaking point, she finally let her internal wisdom speak up and speak out, leading her on a path to self-discovery and true healing beyond what Western medicine offered. Through it all, she learned to acknowledge the mind-body connection and its healing abilities, and after 17 years, she is pain-free and symptom-free. In her book and blog, she shares her breakthroughs and methods of discovering deep inner connection and personal growth.
As a writer, speaker, and spiritual growth coach, she brings positivity, wellness, and inspiration to empower women to heal. She mixes elegance, honesty, emotion, and empowerment with a hint of feistiness and fashion. Audrey knows our bodies are powerful and hold a wealth of information and when we learn to interpret the messages, we hold the key to healing our bodies, minds, and spirits.
Audrey is an avid meditator, spiritual seeker, and advocate in the endometriosis community. In her spare time, she enjoys being with family and friends and likes to read, golf, and hike.