Amanda is our second contributor in our Ask Me About My Endo Interview series, and I have to say how profoundly I identified with her story. It's amazing how often we hear our own stories from other Endo Sisters, and yet not much seems to change in the way endometriosis is diagnosed and treated. Stories like Amanda's remind us how essential it is that we raise awareness for endometriosis!  Want to help us raise awareness? Check out our video challenge! Here's Amanda's story: 

1.    Tell us a little about yourself (name, age, where you're from)
My name is Amanda. I’m 35 years old, single, and I’m a first grade teacher from Michigan. I was just diagnosed with endo a little over a year ago.

2.    When did you first show symptoms of endometriosis?
I didn’t know at the time, but I was showing symptoms of endo at 12 years old (1992). From the start my periods were heavy and painful and I always felt awful, but I just assumed this was “normal” because I never experienced anything else. 

3.    When did you first seek medical attention for your symptoms?
I actually asked a doctor at a clinic about being put on birth control for heavy bleeding back in 2004. She mentioned the possibility of endometriosis and asked me a few questions, but I didn’t really have the other “classic” symptoms and since I didn’t have insurance at the time a laparoscopy to diagnose me was not an option.  I never thought about endo again until I was rushed into emergency surgery and diagnosed in 2013.

4.    What treatments did the doctors first try?
I can no longer take regular birth control due to other health conditions (which leaves out a lot of treatment options), so my first treatment was a progestin only pill. We tried a few different doses, and a higher dose seemed to control my pain, but the side effects were worse than the pain and fatigue from endo. A few of my doctors want to try other hormonal treatments like Mirena or Lupron, but because of the severity of the side effects I have already experienced, I have decided against this and am now beginning to plan on excision surgery.

5.    When were you surgically diagnosed with endometriosis? Please include any pertinent information about locations of lesions, organ involvement, stage (if given), type of surgical intervention done at first surgery (ablation, fulguration, excision).
On April 26, 2013 I had noticed a slight pain in my right lower abdomen that had been there for a few days and hadn’t moved. I went to the doctor thinking I might have appendicitis. After hanging around the hospital all day waiting for tests and doctors, I was surprised to find out I had an almost 9 cm ovarian cyst that had flipped over my ovary and cut off the blood supply! I was rushed into emergency surgery that evening, which took over 3 hours. The next morning, the surgeon told me that they had had to remove the cyst along with the right ovary and fallopian tube, which had been flipped over and “glued” to my uterus from scar tissue, and she also told me that I had severe endometriosis. The endo had already caused extensive scarring on the pelvic sidewall, cul-du-sac obliteration (uterus and rectum stuck together), an enlarged left ovary, and adhesions of the left ovary and colon to the pelvic wall. I was rated at stage IV due to the involvement of the cul-du-sac and removal of one ovary. Since finding endo was unexpected and the surgery was primarily to remove the cyst, no excision was done at this time.

6.    Were your symptoms relieved, and if so, for how long? Did you use hormonal suppression after surgery?
I didn’t have many symptoms before or immediately after surgery, however, I began having daily pain about 4 months after my surgery. I did try Norethindrone after surgery at different doses and it did greatly relieve the pain, but the side effects lowered my quality of life so significantly it was not worth continuing.

7.    Have you had any subsequent surgeries? Please include pertinent information about location of lesions, adhesions, organ involvement, stage (if given), type of surgical intervention.
I have not had any further surgeries but am planning to have excision soon, hopefully at the Center for Endometriosis Care in Atlanta.

8.    How many total surgeries have you had, and do you plan on any in the future?
One so far (ovary/tube/cyst removal and diagnosis of endo) and hoping to have at least one more for excision.

9.    How are you doing today? Please include any information you feel comfortable sharing about your quality of life, fulfillment in your career, relationships and family life, and outlook for the future. 
I feel lucky that although I have advanced disease, I am able to still work full time and function normally for the most part. Doctors have suggested that because I have probably had endo for a long time, I have become conditioned to the pain and therefore have a higher tolerance and am able to cope with more than normal.  I also feel incredibly lucky to be able to take over the counter and occasional prescribed pain medications that help with the pain and do not cause any drowsiness or side effects.  I do still experience pain every day – sometimes a little, sometimes a lot - but I still enjoy my job teaching, traveling to spend time with my family, and I even began dating again a few months ago!

One big thing that has changed since my diagnosis is my favorite pastime, running. I had begun a 10k training program 5 days before my surgery, and it had to go on the back burner while my incisions healed. It was hard to get back into running as I adjusted to hormonal treatment, suffered a ruptured cyst this past winter, and dealt with varying levels of daily pain. Just yesterday I began the training program over again - I hope to someday be able to run 10ks or even marathons for endo awareness!!

10.    If you could tell fellow Endo Sisters one thing, what would that be?
You are not alone – take it one day at a time and lean on the rest of us for support!

11.    If you could tell medical professionals one thing, what would that be?
PLEASE educate yourself on endo – it is unacceptable how few doctors know how to treat this disease, and those who do not don’t seem to bother to refer patients to someone who can.

12.    What would you like the next generation to know about endometriosis?
Early diagnosis and treatment can change your life! Periods SHOULDN’T be painful. They will be uncomfortable, but if you are in severe pain, it’s a sign that something is wrong. Find a doctor that will listen and fight for your body!

13.    Has living with endometriosis brought about any positive things you may not have experienced without living with this disease?
I have developed a passion for endometriosis awareness. Talking about my experience has led some of my friends to discuss endo with their doctors as well! I know that I can change lives by being open and honest about endometriosis. Meeting a ton of wonderful “endo sisters” through support groups has been a big plus too!

14.    Please describe any awareness, advocacy, or support efforts, and how this changed your outlook.
At the advice of my doctor, I joined several online support groups for endometriosis patients. I wouldn’t be here today without them. I have learned the truth about endometriosis through these groups, even while doctors were trying to tell me I was not sick or that there was nothing that could be done. Not only did the women in these group listen to my struggles, they’ve helped me find good, experienced doctors who listen, understand endo, and are willing to treat me.

I “came out of the disease closet” this year and began publically talking about having endo, first through Facebook and I am hoping to begin an awareness blog in the near future. Talking openly about it has connected me to others with the disease and informed other women too! 

My mom has been my biggest supporter and travelled to help me at home after my surgery and a recent hospital visit. I bought her an endometriosis awareness shirt this year, and she scheduled her weekly errands for the same day as the Worldwide Endo March so she could wear it in public and talk to everyone she met about endo!

15.    What do you recommend to women who are looking for help?
Be prepared to fight. SO many women have their pain and symptoms dismissed by their doctor – they’re told periods are supposed to be painful and/or that the symptoms are in their head. They’re not! Endometriosis is very real, and if your doctor doesn’t believe you, find one that does. Reach out to support groups and endometriosis webpages online to help you find someone who will listen. The right doctors are out there and there is hope!

16.    Please include any additional information you would like to have in the post. 
I included this picture because it is the last picture of me taken before my diagnosis, less than a month before my surgery. I didn’t know it, but in this picture I already had a growth the size of a softball in my belly and in less than a month, my whole life would change. I think it really shows how aware we need to be about endometriosis!

***

Thank you SO much for sharing your story and advocating for endometriosis awareness! We would love to see your blog when it is created! :)

One of our goals at Ask Me About My Endo is to spread awareness  by getting people talking about their experience with the disease. We have begun a new series on the blog where we interview people with endometriosis to hear first hand what it is like to live with this disease. For this installment, we spoke with a woman from Florida who is fighting against the odds to have a life changing surgery. 

1. Tell us a little about yourself (name, age, where you're from)
Brandie, 31years old, and I've lived in Jacksonville, Florida my whole life.
 
2. When did you first show symptoms of endometriosis?
12 years old,  when I started my menstrual cycle.

3. When did you first seek medical attention for your symptoms?
At 15 years old I went to a gynecologist and told them what was going on. They put me on birth control to see if it would help with cramps and heavy bleeding. 

4. What treatments did the doctors first try?
They first tried birth control pills when I was 15 years old. I stayed on birth control pills for 3 years, and at 18 they put me on the depo shot. I received 1 shot, but then I put on weight. I was bleeding all the time, so I contacted my hemo-oncologist because I have Von Williebrand Disease. I thought something was wrong with my bleeding disorder. My doctor asked what I was taking for birth control, so I told him about the depo shot. He explained to me that my gynecologist should not have put me on that...it could have killed me! So I went back to gynecologist, and told her what my hemo-oncologist said, and she put me back on birth control pills again.

5. When were you surgically diagnosed with endometriosis? Please include any pertinent information about locations of lesions, organ involvement, stage (if given), type of surgical intervention done at first surgery (ablation, fulguration, excision).
In June 2011, I had a nodular knot in my c section scar. A general surgeon went in and got the nodular knot out, but he looked at my ovaries, fallopian tubes, and uterus, and said it looked horrible. I had black cysts on both ovaries, scarring in my uterus, and both fallopian tubes were clogged. Then in September 2011, my OBGYN did a laparoscopy, and confirmed the findings. I had endo on my uterus muscle; both ovaries had big black cysts on them; both tubes were clogged. I had an ablation done on my uterus to try and slow my periods down June 2012. Eventually, my doctor did a full hysterectomy. My husband and I knew it was a possibility, so we signed the paper work...my gyn said it would cure me.

6. Were your symptoms relieved, and if so, for how long? Did you use hormonal suppression after surgery?
I was put on hormonal suppression a week after surgery which was a nightmare. It did not improve my pain at all. I felt like I had been betrayed.

7. Have you had any subsequent surgeries? Please include pertinent information about location of lesions, adhesions, organ involvement, stage (if given), type of surgical intervention.
In July 2013, I had a CT scan done because I was having intense vaginal pain. The CT showed my intestine was on my vaginal wall. When my gynecologist did a laparoscopic surgery on August 26, 2013, it lasted four hours. She told my husband that I had endometriosis on my intestine, bladder, vaginal wall, abdomen, and on my rectum. 

8. How many total surgeries have you had, and do you plan on any in the future?
I have had 4 surgeries so far. And yes, I am doing one more with Dr. Ken Sinervo at the Center for Endometriosis Care in Atlanta, Georgia.

9. How are you doing today? Please include any information you feel comfortable sharing about your quality of life, fulfillment in your career, relationships and family life, and outlook for the future. 
My husband tries to understand. He is supportive of me, but we are both upset with the way my gynecologist treated my endometriosis. She did not explain or educate us about this disease. I am in a lot of pain everyday. Everything hurts so bad, it is hard to get up in morning and take care of my 3 children. I have lost friends over this. My children don't understand why I hurt...they just see their mom crying and curled in ball, or with a heating pad on my stomach.  My family just tells me go to the doctor, get pain medicine, or suck it up. Having this disease drains you physically, mentally and emotionally. My quality of life sucks. I can't go walking far. I can't exercise because of the pain. I have gone to ER, but the doctors there don't care; if you are not in a life threatening situation, they will not help. There are times when I do not want to fight. I have been fighting my whole life! I was born at 27 weeks, I have an eye disease called Retinopathy of prematurity on top of having endometriosis. Having the issues I have is not easy; between me being in pain all the time, my blood does not clot very well, and the eye disease I have could cause me to go blind at anytime. 

10. If you could tell fellow Endo Sisters one thing, what would that be?
To my endo sisters: keep fighting!

11. If you could tell medical professionals one thing, what would that be?
I would tell them to listen to your patients, and research current information about Endometriosis. 

12. What would you like the next generation to know about endometriosis?
Use your voices! Do not take no for an answer, and listen to your bodies.

13. Has living with endometriosis brought about any positive things you may not have experienced without living with this disease?
The positive thing is being able to speak to Dr. Sinvero, and I found Nancy's Nook Discussion and Education on Facebook. Also having wonderful endo sisters to talk to. 

14. Please describe any awareness, advocacy, or support efforts, and how this changed your outlook.
Being in Nancy's Nook has helped. They give some wonderful advice and educate you about endometriosis. Plus the Endo Sisters group is a blessing. They are very supportive, caring, and kind.

15. What do you recommend to women who are looking for help?
Use your voices. Do not stop until you find the right doctor that will listen to you. Join groups. Talk to others. Bring awareness of this disease to others.
 
16. Would you like to share anything else with our readers?
I want my life back. I am over this pain. I wish more people would take this disease seriously. I am a fighter, an Endo Warrior. I am trying so hard to get this surgery done with the CEC. I have read wonderful things about Dr. Sinvero and the staff. I hope to meet everyone very soon and get my life back!

***
Thank you to Brandie for sharing your story and your perspective about this disease. If you would like to share your story with our readers, please send us an email on our contact page and mention the Ask Me About My Endo interview!

For more information about support groups and specialist care, check out our resources page

Dear Jellybean,

It's 5am and I have had severe insomnia for days. I should be awake in the middle of the night for a whole different reason...

You. 

You should have arrived today, whole and happy and perfect. Today, I should be exhausted and aching bringing you into this world, but instead, I'm wide awake and aching FOR you. 

No one ever warned me when I started on my journey to bring you into this world how unbelievably empty I would feel if I couldn't. I had struggled for years with a terrible disease, but never had I felt the pain and anguish of having you slip away. 

And yet, for that short period of time, you brought me incredible joy. You brought me hope that I could conceive a child naturally, after so many doctors told me that was impossible. Trying to conceive a child with stage IV Endometriosis, I was told time and time again that I would never have a child without invasive fertility treatments. 

But there you were. Five months after I had excision surgery, just two weeks after starting our journey with NaPro technology, there was a tiny pink line on a test strip. You proved to me that supporting hormonal imbalances naturally was worth pursuing...but also that I had another choice available to me.  While I never looked into your eyes, you touched my life in a way no one else ever will.

Today, I cry tears of a mother with empty arms, but I also hope for a future filled with joy and laughter. I hope for sleepless nights spent cradling a miracle in my arms, whether born through me or brought to me through adoption. You slowed my frantic race toward pregnancy, and instead set me on the path to motherhood. You opened my heart to the possibilities of parenthood I had never really considered before, and brought to me a peace I had not known until you lived within me. You opened my heart to the possibilities of building a family in whatever way might come to pass...and for that, I am truly grateful. 

Today, I will cry. I will wrap myself in your father's arms and think of what could have been.

But tomorrow, I will raise my eyes to the heavens and hope for what is meant to be.

I miss you with all my heart, my little angel.

Love Mommy

There I was, sitting in a booth at the Flat Top Grill in Chicago (I chose the booth because I was still pretty tender from my second excision surgery and discoid bowel resection), when it hit me. This epiphany seemed like a slap in the face. Why wasn't this a thing? Why aren't we doing this? WHY AREN'T WE FUNDING THIS?!

Ladies with endometriosis, you all know the pain...that ripping, searing, knife-in-the-vag agony of a Pap smear. And no, it shouldn't hurt. A Pap smear, and a simple manual pelvic exam for that matter, shouldn't be more than uncomfortable, and perhaps, really, really awkward. Unfortunately, if you, like me, suffer from the Evil Soul Sucking Bi-otch (ie: endometriosis) or her BFF (ie: pelvic floor dysfunction), you likely have pain with any penetration, but especially when that penetration is a hard, cold metal speculum. Whether from endometriosis lesions on or near the vagina, adhesions fusing the vagina and rectum (oh yes, y'all, been there, done that!), or pelvic floor disfunction, those of us with chronic pelvic pain dread the words, "Let your knees relax to the side."

I had a few glorious months of pain free pelvic exams after my first excision surgery, and the experience nearly brought me to glorious, light-from-the-heavens tears. Since my first attempt at the age of 18, exams felt like a knife, ripping me in half. I'd been told it was because I was a virgin, that I was just "too tight," and that it was ok to start birth control to manage my period and pms symptoms without the exam. It wasn't until four years later, after I had several emergency room visits, a slew of doctors, and a handful of ovarian cysts, that I was told my pain with pelvic exams might be something to see a gynecologist about (and perhaps a psychologist, because the pain was all in my head...obviously!). No longer a virgin, I lay in a pool of sweat, determined to get my first Pap smear accomplished for the sake of my own health. The nurse looked at me, a sly, mocking smile playing on her lips, "You know a speculum is smaller than a penis, right?"

Wow...stop the presses! My pain is gone! I had no idea a speculum was smaller than a penis! I'm CURED!

No, that exam was still painful (I did get my pap though!). My first pain-free exam came much later. Years later, after my surgical diagnosis, after years of hormonal suppression had robbed me of what little health I had, after my life had been turned upside down by my disease. It came after I traveled halfway across the country to St. Louis to have surgery with a highly trained excision surgeon who gave me the chance at a better life (which I did not find in the medical Mecca of Boston). 

I was normal for the first time in my pelvic-exam-receiving-years. 

But hey....there's something wrong with this story! It hit me while I waited for my stir-fry bowl to come to my table, as I sat across from my fellow Endo Sister, our husbands, and her children. 

I began seeing a gynecologist from the age of 18, put myself through painful attempts at exams, and failed for years...yet, I wasn't officially diagnosed with endometriosis until the age of 27, 14 years after my painful periods and bowel symptoms began. I spent years beating myself up for not being able to relax enough to have a pelvic exam, for having some kind of anxiety problem that I couldn't let a total stranger enter my body without guarding unconsciously. But you know what? IT WASN'T MY FAULT. I had a painful, debilitating disease, and damn it, someone should have known this!

Endometriosis is a common gynecological condition, one that is estimated to affect 1 in 10 women. So how come it took so damn long to get diagnosed? Why was I blamed for my pain with exams, mocked and humiliated by callous individuals who were supposed to take care of me? Why wasn't this major symptom taken seriously?

I'll tell you why: because many don't know any better. Myths run rampant about this disease, and many women with painful pelvic exams are treated as if there is something wrong in their heads, when in reality, there is likely something wrong in their pelvis. That something requires delicate surgical excision by an advanced surgeon. Why is this happening? How come this common disease is so often overlooked? 

I think one reason is that we do not have annual screenings for endometriosis. Oh sure, we drag our nervous, nail-biting booties into the office to have someone insert a cold metal speculum (if they can!) and test us for cervical cancer, but no one asks us if we have painful intercourse, pain with bowel movements and urination,  or if we are missing work and/or school regularly because of our period pain. 

And they should! 

Every time a woman comes in for an annual exam, these questions MUST be asked. In order to change the way endometriosis is diagnosed (which takes on average between 7 and 10 years after onset of symptoms) and get women the interventions and treatments that will get them back to living a normal life, WE NEED ANNUAL SCREENINGS. I'm not asking for an invasive test. I'm not even asking for a swab of the mouth or a quick blood draw. I'm asking every gynecologist to ask the important questions. Have an open discussion about pelvic pain and really listen. Keep endometriosis at the forefront during these discussions. Young women do NOT deserve to spend the prime years of their life battling this disease when it can be diagnosed and treated early. 

Please, join me in asking that endometriosis screenings become part of an annual gynecological exam. Ask your gynecologist to add an endometriosis screening questionnaire to their annual routine. We have a lot of work to do to dispel the myths about endometriosis and educate people about this disease, but the least we can do is START TALKING about endometriosis, and get the process started early. 

Endometriosis screening tools can be found by contacting: 
Endometriosis Research Center (www.endocenter.org) - Adopt-a-Doc program
Endometriosis Foundation of America (www.endofound.org) - Screening tool for school nurses and teens


Find out more about research looking into early detection:
www.endtoendo.com

We are slowly post-processing photos from our trip to Disney World, where our mascot Ruby the Endo Roo broke the ice and started lots of conversations about this misunderstood disease, endometriosis. Here are a few of our first photos and some awareness posters we made using our favorite kangaroo! Please share and spread the word...let's get people talking about endometriosis! Stay tuned for more!

Just a little humor inspired by my slacker uterus, which apparently thinks it's perfectly acceptable to cramp like a bear trap with absolutely no productivity. I'm thinking of naming her Toby. I guess I'll just get all cozy with my rechargeable hot water bottle, watch some Game of Thrones, and hope she doesn't see this post and get REALLY bitchy. :/

Welcome to the blog! For our first post, we would like to celebrate National Nurses Week 2014! As endometriosis patients, we are so thankful for the countless nurses who dedicate their lives to helping others, and especially the ones who believe our pain, advocate for our treatment, and are there until we are ready to get back on our feet. 

One amazing woman in particular in Nancy Petersen, a fierce advocate and survivor of endometriosis. She has fought for awareness and effective treatment for decades, and volunteers countless hours of her time to help educate endometriosis patients and help them find relief through excision surgery. Nancy, thank you for all that you do! We love you! 

To find Nancy's Nook Endometriosis Discussion and Education online, click on over to our Resources page. 

And thank YOU for joining us at askmeaboutendo.org. We are so excited to see what we can accomplish together!