As we move into our second year as an organization, the excitement and hope that I felt about spreading Endometriosis Awareness has shifted. When I created Ask Me About My Endo, I had a lot of big ideas and a whole lot of momentum. I wanted to teach, I wanted to organize huge campaigns and concerts, I wanted to change the world! A year later, life, as they say, has become complicated. 

As I plan what Ask Me About My Endo is going to do this year, I have simpler goals. I want to finish a video I started last summer documenting my out-of-state excision surgery. I want to make more Rubys to send out to women around the world who are in need of comfort and support. I want to put part of the proceeds toward women seeking surgery. And I want to continue getting people to talk about Endometriosis. That, of course, was our first and most important goal.

As a community, we've made some amazing strides. It seems as though almost everyone I mention Endometriosis to has at least some semblance of what it is...a painful disease that has something to do with your period. Just this week, a video surfaced from Buzzfeed of all places. With over 3 milion Youtube subscribers, this video reached more people than I think I could ever possibly dream of. My little organization is run out of my home, in my down time, when I feel healthy enough to work on it. Today, I am in bed, on the first day of my period, having yet to take any form of pain medication, over-the-counter or prescription, but I know that my adenomyosis will not let me lead the day I would like to. The disease within the wall of my uterus can only be removed with a hysterectomy, so I continue to live with this pain until that day comes (hopefully soon). However, I'm sitting upright. I can move freely side to side. I am not vomiting. It is possible that I might feel faint if I have a lot of bleeding, but for the most part, this is a vast improvement from where I was two and a half years ago, before I had excision surgery. 

When I shared the Buzzfeed video to our Facebook page, I commented that the girl in the video needed to learn about excision surgery. In the video, she claimed that surgery after surgery, the pain kept coming back. That Endometriosis will always come back (if you're having ablation surgery, the most common type, it probably will). She also explained Endometriosis as being a disease where the lining of the uterus somehow travels outside the uterus and implants. 

Unfortunately, this is not entirely accurate. Current research suggests that Endometriosis is laid down during embryonic development. It is already there when we are born and it is just a matter of when it will mature and start causing pain. There is also research suggesting a link to the use of pesticides, ironically conducted in the region in which I grew up. There is no scientific evidence that Endometriosis is caused by retrograde menstruation, the most popular and outdated theory known as Sampson's Theory, wherein they think the endometrium has no place to go so it travels outside the Fallopian tubes. This is what most doctors are taught in medical school, and is why it is so hard to get effective care. Myths such as that pregnancy can cure Endometriosis, that hormonal suppression (birth control, medical menopause) can halt disease growth or preserve fertility, or that Endometriosis cannot occur in girls and young women stop us from getting effective care. 

We are most likely born with this disease, and when our disease is left in our bodies, it grows deeper. It damages our organs. What's more, it destroys our lives. 

There are better treatment options out there. The most common types of treatments offered cannot remove the disease or prevent more growth. They can mask symptoms, they can buy us a few months of even years of pain relief before we are right back where we were before, or worse. I am a prime example. I spent 15 years living with this disease, five of which was in medical menopause, being told there was no hope. I could take pills, or injections, or get pregnant, but no one ever told me that there was something better. Meanwhile, my body was being damaged by a disease left unchecked.

My passion for sharing the hope of excision surgery is what drives my desire to spread awareness. If we keep talking about Endometriosis as a disease with no hope, as something we must merely deal with, we are not moving toward a cure. No cure currently exists. Yes, pain can still persist after excision surgery, typically from co-morbid conditions like interstitial cystitis, adenomyosis, pelvic floor dysfunction, adhesions, and neuropathic pain. Then, there is the case of true recurrence, which can happen in 5-20% of cases post-excision, depending on the skill of the surgeon. Does that mean that we ignore the amazing hope that excision surgery can give us? Do we dismiss surgery and just keep talking about Endometriosis in the same old way, as a condition we will never beat?

My answer is no. My life was changed by excision surgery. I was barely surviving living with 20 different areas of Endometriosis. Am I completely pain free today? Unfortunately, no. I continue to live with adenomyosis and a body that has had organs removed and is tied up with adhesions. But it is better. There is hope! My opinion may not be popular, and it is by no means an easy road with an easy fix. It is so easy to get discouraged when surgery doesn't magically erase the damage. I know...I've felt that. I battle every day the emotional pain that Endometriosis stole my youth and my ability to have children. But I won't let that get in the way of moving forward. 

Next month, March 2015, it's our time. Endometriosis Awareness month is a big time for us to use our voices and spread awareness about our disease, to fight for more effective care and hopefully, someday, a cure. I urge you to use your voice to spread the right kind of awareness. The kind that doesn't perpetuate the same old myths. Pregnancy is not a cure. Drugs do not prevent growth of disease. Better care is out there. It's time for us to fight for knowledge and access to better care, fight for getting Endometriosis its own medical specialty, coverage from insurance, educating new doctors and nurses in the truths about our disease so if they can't help us, they will know who can. 

I hope you will join me, and Ruby, next month for Rubys on Parade, and help get the word out that there is hope, and we are here to help you find it. 

Today is Thanksgiving. Growing up, I spent Thanksgiving at my great-grandmother's, packed into a small ranch house in my hometown, full to the brim with extended family arguing over politics, decorating the Christmas tree, and watching Willie Wonka and the Chocolate Factory in a tiny bedroom with my cousins. The evening usually involved lots of food, lots of pictures, but absolutely no shopping. Now, we still caught a few minutes of Willie Wonka on television while eating our Thanksgiving Eve dinner fresh from a neurology appointment.  My husband browsing the net to see what kind of crazy Black Friday deals are happening, and I'm posting to my Jamberry Independent Consultant page with the Black Friday deals going on within the Jamberry universe. That's how I'm earning a little income while I am home with whatever-is-happening-to-my-feet that's making it difficult to walk. With everything that has happened this year, I've missed 11 weeks of work, and counting. There are serious benefits to working from my couch. 

"Wow, this store is guaranteeing a $200 television to anyone who is in line at 6pm on Thanksgiving!" my husband exclaims. "Do you think we'll be done with dinner by then? That's an amazing deal."

It is an amazing deal. Stores these days realize the amount of money that is up for grabs for anyone who is offering rock bottom prices for fancy electronics and other big ticket items. I mean, a department store is advertising a deal on an XBox One! We've all seen the insane footage of people trampling one another to make sure THEY GET THAT DEAL. I've participated a few times in my adult life, especially when I was in need of a particular item and wanted to spend the least amount of money possible. Thanksgiving with my in-laws typically involves peeking at the Black Friday flyers during dessert, and two years ago, we ran into traffic heading home from dinner because we lived in close proximity to a mall. Somehow, though, I just can't stomach the early evening shopping on Thanksgiving. Whatever happened to the good ol' turkey nap? Time with family? Savoring the evening and just enjoying great food and company?

Then there are the retail employees. I doubt that employees are arriving at 6pm for these sales. More likely, there are cashiers and people stocking inventory early Thanksgiving morning, and I'm positive there will be overnight shifts as the push into the biggest retail weekend of the year begins. There's no way of stopping this money-making train when incredible deals are drawing customers to line up around the block. While I'm not going to make any judgments about whether or not anyone participates (including my husband), there is something we can do to achieve at least a little bit of balance in all this chaos. 

I've decided to become a social media ambassador for #GivingTuesday, a movement to bring back the spirit of giving that makes this time of year so special. Here at Ask Me About My Endo, we have a strong belief in giving back to people in our Endometriosis community, and today I would like to encourage you to take part in #GivingTuesday with me. Right up above, we have a tab called Sponsor a Surgery. This is a page where we list women who are seeking or who have undergone excision surgery for Endometriosis. Excision surgery is a highly effective way of removing all of the disease from the body using wide margins and sending the tissue to pathology. As opposed to the most common surgical technique employed during a laparoscopic surgery for Endometriosis (ablation - burning the surface of the disease), the recurrence rate for excision is low. Women who have this surgery have a far lower chance of their pain from Endometriosis returning because ALL of the disease has been removed from root to tip. There are only a handful of surgeons in the United States who perform this surgery effectively, so many women have to travel for quality care. Some insurance companies deny coverage for this surgery, or the surgeon is out-of-network, so the cost of this surgery is higher than the less effective types of treatment. The financial burden is high, and we at Ask Me About My Endo are on a mission to help in whatever way we can. We host links to fundraisers for some of these women, and we donate sales from our Etsy shop to these fundraisers. Ruby the Endo Roo, our mascot, is sold in our Etsy shop, handcrafted by yours truly, and $10 from each sale is donated directly to the fundraisers. 

This coming Tuesday, I'm asking you to help us make a difference. If you are able, please consider making a donation to an Endometriosis cause. There are non-profit organizations that are dedicated to further Endometriosis research, providing support, and advocating for awareness and high quality care for women with Endometriosis. Many of these organizations have made a huge difference in my life, and they have most certainly made a difference in our community. The Endometriosis Research Center, the World Endometriosis Research Foundation, and the women listed on our website are some worthy causes that we would love to encourage you to consider. Whether or not you're able to contribute, I hope you will join me in being a social media ambassador and help spread the word about donating to charity on Tuesday, December 2nd, 2014. 

Happy Thanksgiving everyone. I hope you will join me in promoting the spirit of giving this holiday season. 

I know March is six months away, but I wanted to share with you our plans for Endometriosis Awareness Month 2015! Rubys on Parade will be our month-long campaign to raise awareness for Endometriosis while bringing you weekly prizes! 

Here's how it will work. Every day in the month of March 2015, we will be posting awareness photos featuring Ruby the Endo Roo and facts about Endometriosis via Facebook and Twitter. You, our followers, can join in our parade by sharing your own awareness photos featuring YOUR Ruby the Endo Roo and using the hashtag #RubysOnParade. We encourage you to utilize whatever social media venue you'd like. We hope to flood social media with our favorite kangaroo! 

Here's the fun part! Each week, we will pick the follower with the most creative contribution to the parade, and award the creator with a prize, including products from our Etsy Shop  (Etsy.com/shop/AskMeAboutMyEndo). At the end of the month, a final winner will be awarded with a TOP SECRET GRAND PRIZE! 

We will share more details about how to enter closer to the event, but until then, start brainstorming and even have a small photo shoot so you have your images ready in time for March. 

We at AMAME are stoked about this fun, positive awareness campaign and the chance to thank our followers for participating! We hope that you will join in the fun and help us raise awareness for this debilitating disease during Endometriosis Awareness Month!

We made the announcement recently that $10 of every Ruby, as well as $1 for every item sold in our Etsy shop, will be donated to the excision surgery fundraisers listed on our website. We rebranded our Etsy shop to reflect that mission, and have a new line of heating pads/cold packs that will be a part of that mission. We are stoked to announce that The Natural Market in Groton, MA is interested in carrying the line in their store, and will give us the opportunity to help women in our community, as well as an opportunity to speak at the store about endometriosis. Here's a look at an evening in Kelsey's sewing room, getting a custom Ruby ready to travel to her new home! 

Kelsey hand sews several parts of each Ruby. Parks & Recreation is a favorite show to watch while sewing.

Each Ruby takes at least 3 hours to make. She now comes with our new "Crafting for a Cause" label!

Ruby watches atop a large bag of flax seed from The Natural Market, which we use in our heating pads.

This little Ruby was custom ordered in pink for Michelle.

She's completed and ready for her journey! Here's to spreading awareness and making a difference!

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!

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