Tuesday, July 29, 2014

Busy Bean Bags


Check out my latest sewing creation over at my educational blog, Rose Blossom Consulting! They're called Busy Bean Bags, and they are perfect for toddlers and preschoolers who are learning self care and developing fine motor skills. 

Stay tuned for a pattern and tutorial for these lovely lavender scented bean bags!

Friday, April 25, 2014

Response to Dr. Drew's dismissal of Endometriosis and Interstitial Cystitis pain as "garbage bag" diagnoses


Ironically, just a few short weeks after the Endo March and Endometriosis Awareness Month, an incident happened today that only perpetuated the ignorance and misinformation about a common, painful disease. Endometriosis is a debilitating disease wherein endometrial-like glands and stroma cause painful inflammation and adhesions, which can distort or constrict organs. Endometriosis affects 1 in 10 women, or 176 million women worldwide, with an average delay in diagnosis ranging from 6-10 years. Years of misdiagnosis and ineffective treatment negatively impacts the patient's quality of life. The physical, emotional, and social effects of endometriosis are often devastating, but can be avoided with early detection and complete surgical excision. 

Unfortunately, misinformation runs rampant, even within the medical community. It is not uncommon for women to experience delay in diagnosis because their doctors are uneducated in current research, and believe outdated theories that have been disproven. Many are told their pain is "in their heads," caused by hysteria, anxiety, or even that they "research their disease too much." Until my surgical excision of endometriosis from my rectum, vagina, and in my cul de sac, I experienced excruciating pain with pelvic exams. Almost every doctor and nurse to "just relax. It can't hurt that much." One particular nurse looked at me with disgust, saying, "You know a speculum is smaller than a penis, right?!"

 Before my surgical diagnosis, a psychiatrist told me my pain was psychosomatic (all in my head), and that I should not be given pain relief, but rather, I should come back and start therapy. 

Yeah. 

That's when I stopped asking for pain medication and just dealt with my pain. I have a sneaking suspicion that I could swallow a porcupine and just keep right on living life. 

Since then, I've been diagnosed (confirmed by pathology) with stage IV endometriosis, which affected my bladder, uterus, ovaries, fallopian tubes, appendix, bowel, rectum, vagina, ureters, uterosacral ligaments, broad ligament, cul de sac, and peritoneum. I have lost my appendix, am scheduled to lose a fallopian tube and undergo a presacral neurectomy, and face possibility of hysterectomy if I continue to show symptoms of adenomyosis. I've been speaking out about my disease for the better part of this year, and have founded an organization that is dedicated to support, awareness, and advocacy.

In any case, we fought the whole month of March to advocate accurate information and effective treatment...and then this happens.   


Transcript:
Thanks Emily Page for typing this up!
Caller: My fiancé has a multitude of diagnoses. She has IC, endometriosis, lactose intolerance. She has no stomach lining. I mean, a bunch of things going on.
Mike: No stomach lining? Is that real, Drew? Can that happen? 
Dr. Drew: No. And by the way, IC is, I assume, interstitial cystitis?
Caller: Yes
Dr. Drew: These are all, these are all sort of what we call functional disorders. Everything you mentioned, everything you mentioned, are things that actually aren’t discernibly pathological. They’re, they’re just sort of what we call “garbage bag” diagnoses. When you can’t think of anything else, you just go, “oh it’s that.” So it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pain and urinary symptoms and health symptoms and all this stuff. And that makes me wonder was she sexually abused growing up.
Caller: Well she..and it’s funny you say that. She actually almost refused to go to a doctor until I begged her to because she was in so much pain. In the 3 years we’ve been together, she’s only seen a doctor maybe twice.
Dr. Drew: And she has 4 different diagnoses in 2 visits? Pretty hard to get that.
Caller: Well, a lot of them happened before she and I were together, but yes she was-
Dr. Drew: She went to see lots of doctors before you. 
Caller: She-
Dr. Drew: Trust me, she saw lots of doctors before you were together to get those diagnoses. Was she sexually abused growing up?
Caller: Yes. Not growing up, no-
Dr. Drew: Okay, magically, magically, wait, hold on! Wait a minute!
Emily: That took, like, 16 minutes to say yes.
Dr. Drew: When people have unexplained pain, particularly pelvic pain, it’s called somatoform dissociation, and the only way her body, which was suffering during those early experiences can tell its tale of woe is with pain. And she really needs to see a trauma specialist not a urologist. You know what I’m saying?
Caller: Okay.
Dr. Drew: So really work on that. It’s a real thing.

Dr. Drew, it is exactly this kind of ignorant dismissal of a woman's pain (and your caller, by the way...did you even let him ask his question?) that leads to endometriosis patients giving up on the medical community, believing that no one can help them. Because Endometriosis IS a pathologically diagnosable disease (I'd love to send along my 15 pages of surgical photos, 3 page pathology report, and 30 minute discussion of my surgery, but I doubt very much that you'll even bother replying to this post), going through therapy will not help her pain caused by damaging inflammation and anatomical distortion from endometriosis. If she were to listen to your advice and see a trauma specialist, NOT a urologist, well...there's a little something called learned helplessness, which I'm sure you're aware of. 

Should this woman go through all this additional therapy (as if the decades most of us spend searching for an official diagnosis wasn't enough), and still not experience relief, what would you tell her then? That it is all her fault? That she can't let the past go and move on? What would you do when she begins peeing blood, or passing black stool, or worse...attempt to end her pain and suffering for good? Would you make her the butt of one of your sexist, misogynist jokes? 

Mike: Also, Dr. Drew, another way that someone can develop unexplainable pelvic pain is by having sex with Alan Thicke. 
Dr. Drew: That's not unexplainable, that's a direct result. It's obvious what's going on!
Mike: There must be some level of camaraderie between you, Dr. Drew, and Mr. Thicke because you have both just torn women in half!
Dr. Drew: We've crushed. 
Mike: Yeah, I don't know if you know this, Alan, but all over Pacadena, California just corpses of females just absolutely split in half! People -
Alan: Yeah, I think I heard that.  
Mike: Yeah, they call it the Pinske! When they see women like that, the forensics-
Alan: They've been Pinsked?
Mike: Yeah, the forensic pathologist comes over, "Yep, she got Pinsked. Poor lady." 

Dr. Drew, not only have you dismissed a patient based on your ignorance (who HAS a diagnosis, by the way), you have dismissed millions of women, dedicated surgeons and scientists researching the disease, a slew of coordinating specialists, such as pelvic floor physical therapists, urologists, colorectal surgeons, nurses, etc by telling her partner that these aren't real diagnoses, that they are "garbage bag diagnoses" used when there's nothing else to explain the pain (completely false, since we undergo biopsies and have pathology reports to prove it).  

How dare you. 

And how dare you follow up a segment wherein you emphasized the possible physical and psychological impacts of sexual abuse with a crass joke about murdering women due to your sexual prowess, and leaving their corpses behind. Mike, you disgust me. I have never heard such a revolting ploy to gain a couple of cheap laughs at the expense of victims of rape and incurable diseases.

Not only that, but by your dismissal of pelvic pain, whether related to endometriosis, IC, or pelvic floor dysfunction, completely undermines and invalidates the individual suffering many of us endure with little to no support. In all honesty, it doesn't matter where her pain comes from...she's in pain! Her partner called you for help, and you cut him off, dismissed her pain, and made a crass joke.

Many dedicated professionals, patients, advocates, and supporters have responded on this incident. Thank goodness for dedicated professionals, like Dr. Ken Sinervo, Heather Guidone, Dr. Andrew Cook, Dr. Camren Nezhat, and Dr. Cindy Mosbrucker who shared their knowledge and support to our community, championing a cause that you so callously trashed.

Some have asked for a retraction. Most have asked for an apology. Some have even offered educational discourse to ensure accurate information be available to both you and your listeners. 

What do I want? 

Nothing. 

You're not worth my time. Your obvious backpedaling, where you claimed you "said nothing of the kind," and your lack of remorse or response today has proven one thing in my mind. 

You are not worth us spending another moment worrying about the damage you have done to our community. Instead, I'm going to get back on track spending my time speaking with the members of my support groups, working on my awareness projects, and doing every possible thing I can to promote awareness in spite of ignorant people like you.

Monday, April 7, 2014

Is It Really JUST Pain?


I'm going to be honest with you: I'm angry

Some people might say that's just negativity, bad energy that has no place in this world. Some might say that I am in pain today because of that anger. But anger, like pain, has it's place in the world. It tells us when something isn't right. When your body is in pain, it is trying to tell you something.  That's the function of pain. Our bodies respond to this pain by sending out naturally occurring endogenous opioids. Without pain, how else would we know when to seek help? 

Pain exists to let us know that something isn't right. When I speak with anyone who is having new or worsening pain, it scares me to hear them say that they will just ignore it. Pain is just pain, right? 

Wrong.

If there's one thing that I've learned over the last 15 years living with chronic pelvic pain, it is to trust my body. There are people out there who are trying to sell the idea that we can rise above our pain; that the pain we feel arises from some kind of negative energy, or personality fault. They want you to believe that you can completely think your way out of your pain; that it is somehow healthier to get in touch with that pain; that living with and getting in touch with your pain will somehow heal you. 

Now, as someone who has dabbled with alternative methods of pain management, like acupuncture, meditation, and yoga, I can tell you that those methods absolutely help me handle my pain, especially when combined with other forms of pain management. There are ways of focusing on your breath that can help you get into a calm, relaxed state of mind, and it can become easier to live through the pain. 

But severe pain should never be ignored. 

Last week, after two months of just dealing with my kidney pain, I peed blood. Not just trace amounts of blood...I'm talking real, red blood. As soon as I saw that blood, I knew it was time to stop pushing through my pain and go to the emergency room. It's a damn good thing I did. 

I had a kidney stone in my ureter, and my right kidney was swollen. With a history of retroperitoneal fibrosis, there is a concern that my stone might not pass by itself, and might cause a blockage. The past two days have been some of the most painful days I have ever experienced. On Saturday night, I took a pain pill before collapsing on the floor on the way to the bathroom, screeching in pain. My pain pitched, and pitched, and pitched, rather than getting better. Barely able to breathe, I sat in child's pose and just screamed. 

And then I stopped. My breathing calmed. My pain began to get just a little duller. My pain medication finally kicked in.

I've been peeing blood ever since. 

Pain is not something to be ignored. Pain does not reach a certain point and go no higher (which is why a 1-10 pain scale is all relative). Experiencing severe pain without relief can bring about harmful affects on  many systems of the body. Vomiting, increased heart rate and blood pressure, urinary retention, muscle spasm, fatigue, anxiety, and disorientation can all result from unrelieved severe pain. On top of that, ignoring severe pain can ultimately lead to chronic pain. 

Pain is there to tell you something is wrong. It is OK to seek relief for your pain in whatever way works best for you. You do not, and should not, need to suffer through this. And you most certainly should not be told that your pain originates from some emotional imbalance, or that your pain will go away if you just love yourself more, or get in touch with your womanhood.

Anyone who tells you otherwise is selling something.

Saturday, March 8, 2014

Bloggers Unite for EndoMarch: Week 9 - Last Minute Thoughts


The Million Women March is just a few days away! I'm a bit late to the party for the last couple of weeks worth of blog posts, and I'll just say that it is challenging to work, intern, go to grad school, and do all the things I want to do! I'm doing my best to keep up, but unfortunately, the blogging fell behind. In any case, we had a great time last week at our Yellow Flash Mob for Endometriosis to raise awareness for the EndoMarch! We received a generous donation from family and friends that allowed us to purchase a camcorder to bring along on our trip to D.C. and I am grateful that we will also now be able to make videos for Ask Me About My Endo. You can find the first two here: 




Yellow Flash Mob in Boston: Singing and Dancing to Let It Go from Frozen, and a speech from yours truly!


Our first video update on Ask Me About My Endo! Thanks to this camcorder, we will be able to cover the March for those who might not be able to make it to the event! We will be taking photos and posting them on our Ask Me About My Endo facebook page, and will upload videos once we are able to upload them. I'm so excited to be able to share our experience with you all!

I went out and bought some yellow accessories for the big day, but I must admit...I haven't had the time to start packing. I am kind of nervous, but I know this is going to be an amazing experience! I'll be attending a Girls Night Out with my fellow Endo Warriors the night before, which I think is going to be awesome. It is always an uplifting experience to speak with other people who have endured the same trials and tribulations, and I know that I'll be meeting some very dedicated people. 

On a sadder note, today marks what would have been 20 weeks into my pregnancy that I lost this past November. It seems no matter how many days, weeks, or months pass, when I realize where I should be, it never ceases to take my breath away. Today, we were walking through a furniture store, and I couldn't pull myself away from the crib I had picked out so many months ago that we never purchased. I just stood there, stroking the smooth grey-painted wood, and had to tell myself that I needed to purchase my airline tickets, not an empty crib for the baby that I couldn't carry. My heart aches every time I think about the belly I should have, and the moments I should be cherishing in a few short months.

March is endometriosis awareness month. Awareness is not just about wearing yellow. Awareness is not always pretty and pleasant and easy to talk about. No, awareness is sharing what we might otherwise keep to ourselves about how endometriosis affects our lives. Besides pain, endo has affected my ability to have a child. It has been a year and a half that I have been trying for a child. Today, I should be 20 weeks pregnant, but instead, I am planning for another surgery, my third in two years. This time, we may remove my left Fallopian tube. Endometriosis has taken many things from me, but today, I am thinking of my baby that was, and those that may have been without this disease.

Tuesday, February 18, 2014

Bloggers Unite for #EndoMarch2014 Weeks 5 and 6: Raising Awareness


This has been quite a busy couple of weeks! I missed last week's blog post about what my favorite goal would be. Well, this week, I would like to talk about why it is so important to raise awareness and educate as many people as possible about endometriosis, inspired by the reason I missed last week's post: a bad ER visit. I went to a local hospital and was absolutely appalled by the care I received. After explaining that I had a history of severe endometriosis, kidney disease, and retroperitoneal fibrosis, I told them I was having terrible right sided pelvic pain, and pain in my right kidney. I was given only a "warm blanket" as pain relief until an ultrasound revealed two complex ovarian cysts on the right ovary, measuring a total of 5cm. I also had a 6mm kidney stone in the left kidney. When I tried explaining the nature of endometriosis, and mentioned advocating and going to the EndoMarch, the nurse asked why we were marching. I said that one reason was to get government funding for Endometriosis health organizations, and the nurse responded with, "And who would take that on? Planned Parenthood?!"


In light of that disgusting display of ignorance, I'm proud to announce that I have founded Ask Me About My Endo. I wanted to created a T-shirt I could wear when I visit the ER to encourage them to talk to me about my disease, and hopefully learn a little bit about it. 



Out of that tiny idea, a much farther-reaching project was born. Ask Me About My Endo (AMAME) is spreading endometriosis awareness and advocacy by getting people talking! Endometriosis affects 1 in 10 women, or 176 million women worldwide, with an average delay in diagnosis ranging from 6-10 years. Years of misdiagnosis and ineffective treatment negatively impacts the patient's quality of life. The physical, emotional, and social effects of endometriosis can be lessened with early diagnosis and complete surgical excision in many cases, particularly in coordination with a multidisciplinary approach to treating pain holistically. AMAME strives to get patients talking about their endometriosis instead of hiding it. Let's clarify the misunderstandings, dispel the myths, share effective treatment options, and refer to the best specialists possible! A three-fold program, AMAME incorporates online resources (website coming soon!), awareness merchandise, and non-profit efforts, such as the Endometriosis Awareness Music Project for teen outreach. To find out more and get involved, check out our Facebook page, Ask Me About My Endo, Twitter: @AskAboutEndo, or email: askmeaboutmyendo@gmail.com

I am so excited so start this project, and I can't wait to see what we can do! So...who will YOU talk to today?

Check out some of our first designs, which are perfect for wearing to the EndoMarch! I've already ordered my husband and myself lots of gear, and I can't wait to show it off! All merchandise can be found at the Ask Me About My Endo store













Can't wait to see everyone at the EndoMarch! 

Monday, February 10, 2014

Bloggers Unite for #EndoMarch2014:Week 4 - Interview with Heather Guidone


Over the past year, I have been so incredibly lucky to get to know Heather Guidone, Surgical Program Director at the Center for Endometriosis Care and member of the executive board of the Endometriosis Research Center. Heather is a tireless advocate for Endometriosis education and awareness, and a fierce friend! She is one of the most supportive, knowledgeable, and dedicated women I have had the privilege to meet along my journey toward healing, and I am so thrilled to share this interview with you for this week's assignment. Heather serves on the advisory board for the Million Women March for Endometriosis, and offers us her unique perspective as a professional in the field, as well as an Endo Warrior herself. 

1. Why did you become involved in the Million Women March?

I was absolutely honored to be invited to join the MWME Advisory Board. It is a real privilege to be part of this monumental effort to make advances in such a broad, public way and effect positive change towards government-funded research initiatives, legislative awareness, medical and nursing school educational imperatives and early intervention. If not detected early and treated properly, endometriosis can absolutely be a serious and debilitating disease with severe, far-reaching consequences, impacting every aspect of a woman or girl’s life – and the lives of those who care for her. The March is designed to make real strides on behalf of the 176 million women, girls, and even some men struggling with the disease, so that they can receive proper diagnoses, better care - and one day, a cure.

2. What is the biggest misconception about Endometriosis, and why is it so important to distinguish between the myth and the fact?

Unfortunately, endometriosis remains mired in myths, outdated beliefs and a culture of menstrual misinformation. The idea that pelvic pain is a normal part of ‘being a woman’ and particularly, that periods are a female’s ‘lot in life’ are such archaic taboos. Yet sadly, these misconceptions still continue to result in the ten-year average delay in diagnosis and wholly ineffective treatments that surround the disease. To be certain: pain associated with menstruation – or at any time in the cycle – which interrupts a woman or girl’s normal routine and productivity is never normal. Bowel, bladder and other organ dysfunction with or without menses is not normal. Painful sex is not normal. Infertility is not normal…and so on. These symptoms do not need to be accepted in silence. There are quality treatments that can, in many cases, alleviate or at least significantly reduce the effects of endometriosis.

3. If you could advocate for one goal of the Million Women March, which would it be and why?

Just one?! Ok, then early intervention. Meaning – we need to educate our adolescents as to what is normal and what is not. Minor cramping during a period is to be expected; period pain – or pain at any time - that makes a woman or girl miss school or work or otherwise impacts her ability to function isn't the least bit okay or ordinary. If we can drive that message home to the teens and adolescents who may have been ill-informed about ‘what is normal’ or are otherwise suffering in silence, so that they seek care with a specialist early in life, it may save - literally - years of needless suffering, failed interventions, possibly preserve future fertility, and protect quality of life in long-term for so many.

4. What do you wish everyone knew about Endometriosis?

Lots! That pelvic pain and sexual dysfunction is not a normal way of life because someone is female. That endometriosis is not simply the presence of ‘normal endometrium’ outside the uterus, caused by retrograde periods and easily cured by hysterectomy. On the contrary, endometriosis and normal endometrium differ vastly in terms of invasive, adhesive and proliferative behaviors, and we are probably born with the disease. That pregnancy, menopause and hysterectomy are not the mythical cures they have continually been touted as. Same for drug therapy; there has never been a drug to cure or otherwise treat endometriosis long-term. Drug suppression can help relieve symptoms for some, but only on a temporary basis. That ineffective surgery will likely not help and may even harm. Removing the surface of the disease from some areas is not sufficient; endometriosis must be removed ‘root to tip’ from all affected regions (excision surgery). That alternative therapies, such as diet and nutrition, acupuncture, physical therapy, and other complementary treatments can be extremely helpful at effectively managing symptoms on a non-invasive basis, particularly when combined with quality excisional surgery as the cornerstone of any effective management plan. That those affected by the disease aren't whiners, lazy or ‘making it up’ – their pain and debilitating effects of the disease are real. Above all else – that endometriosis is NOT a hopeless disease, and no one with endometriosis should ever feel alone or isolated.

5. Why is the Million Women March for Endometriosis important to you?

Having been at the first two Marches on DC almost 15 years ago, it is encouraging to see how the advocacy movement has grown by leaps and bounds since then. With social media, so much more networking has become possible, whereas historically over the past 20 years that I’ve been working in endometriosis, we had very limited options for outreach. Now, we can share data instantly across our collaboratives, patients can become educated – and empowered – through access to the latest, most accurate information, we are able to connect with so many others in the profession to train and increase education among providers, and awareness opportunities like the Nezhat Family Foundation March can take place on a global scale. It’s been very exciting to watch the groundswell of involvement literally explode on a worldwide level over the past years. The March gives the world an opportunity to hear our collective voices. Moreover, it is the first time an outreach effort has been backed by more than just a patient base; we have some of the most respected names in women’s health supporting the effort ranging from ACOG to AAGL.

6. After the Million Women March, how can we continue to advocate for and support Endometriosis awareness?

All women and girls with endometriosis can make a difference in the disease, anytime – there is no need to wait for a March or event. By sharing their story, they can be heard – and make the path easier for someone else behind them. Share legitimate, accurate educational information. Reach a hand out to someone who needs a lift up. Correct misinformation as you see it. Stop accepting subpar care as the status quo. The more we unify as one voice and insist on elevating this disease to the priority public health platform it deserves, the sooner we will achieve better treatment of those affected - and again, one day hopefully, a cure. Tell your story, share your voice, speak up. Anytime – anywhere. There is always awareness to be raised.

7. What message would you like to convey most about the Million Women March and Endometriosis? 

The Nezhat Family Foundation Million Women March for Endometriosis is the first internationally-coordinated campaign that will empower and unite those who are struggling with endometriosis - and their supporters - to take a real stand against the disease; it will educate society and raise awareness, promote early detection and improved treatments, and ultimately, effect real changes. The success of the March depends on YOU, so please consider joining these worthy efforts in any way you can! See you there!

Big thanks to Heather for sharing with us this week. Heather's work in the endometriosis community has inspired me to become an advocate, and I hope some day to be able to effect change and touch as many lives as she does every day. See you at the March!

Wednesday, February 5, 2014

Bloggers Unite for #EndoMarch2014: Week 3 - Letter to your Congressional Representative

I'm a little late to week 3 because I have been busy working on two projects: the support group Endo Sisters Healing Together, and an Endometriosis Awareness Music Project, that will combine original songs with awareness videos aimed at teen outreach and education. I've been a busy bee, also organizing a Boston FlashMob...but here it is! Week 3's assignment...letter to my Congresswoman!

I hope this inspires you to write your own letter to your representative! To find yours, head over here!

February 6th, 2014

Congresswoman Niki Tsongas
1607 Longworth House Office Building
Washington, DC
20515

Dear Congresswoman Tsongas,

My name is Kelsey, and I have stage IV endometriosis. In the last year, I have spent the majority of my free time researching endometriosis, and becoming active in the endometriosis community. I have volunteered for various awareness projects, including a video documentary. I also recently co-founded Endo Sisters Healing Together, an online and in-person support group for New England-based women with endometriosis. I am writing to you today to tell you my story, and invite you to an amazing event happening in Washington, D.C. on March 13th, 2014. The Million Women March for Endometriosis is going to be a monumental event where women all over the world will be gathering in their nation’s capitals to advocate for endometriosis awareness, education for medical professionals, early screenings, and allocated funding for endometriosis. I want to share my story with you to tell you why this day is so important to hundreds of millions of Endo Sisters around the world.

Endometriosis is a very common, misunderstood, and under-diagnosed disease that affects 1 in 10 women, or roughly 176 million women worldwide. In women with endometriosis, cells similar to the lining of the uterus, the endometrium, are displaced during fetal development and grow in other places in the body. These displaced cells, or lesions, can create their own estrogen supply, essentially feeding themselves. As the disease grows and matures, it develops nerve and blood supply. These complex glands and stroma react to cyclical hormone changes, causing inflammation, sticky bands of scar tissue called adhesions, which can cause anatomical distortion and organ dysfunction, and debilitating pain daily, with periods, and with intercourse. Endometriomas, cysts formed from endometriosis, can grow on ovaries, damaging the tissue around it. These do not resolve on their own, can cause extreme pain and bleeding if they rupture, and require surgical excision. On average, it takes a woman with endo eight years to get diagnosed.

One of the biggest problems with endometriosis is the delay in diagnosis. On average, a woman with endometriosis suffers eight years of being told her pain is all in her head, that pain with periods is normal, and that there is nothing wrong with her. In reality, endometriosis can cause real damage to not only reproductive organs, but every other organ in the pelvis. Endometriosis lesions and adhesions are commonly found on the uterus, ovaries, bladder, bowel, peritoneum (lining of the pelvis), and are also found on the ureters, kidneys, and rarely in the heart, lungs, and brain. Endometriosis causes debilitating pain, but can also lead to life-threatening complications such as bowel obstructions, kidney failure due to retroperitoneal fibrosis (scar tissue growing on the ureters), as well as impacting her ability to function daily.

The wonderful news is that with early diagnosis and complete excision, young women need not suffer for years in pain, and endure hormonal suppressive treatments that come with their own damaging side effects. There are only 100 excision surgeons in the US skilled enough to remove disease effectively. With excision, the chance of recurrence is very small, because they cut out the disease like a cancer, rather than burning the surface of the disease. The common technique used by the remaining 52,000 gynecologists is called ablation, which leaves disease beneath the burned surface that can continue to grow and come back. Endometriosis is not treated through hormonal suppression, hysterectomy, menopause, or pregnancy. The only effective way to remove disease is through excision surgery.

It took me nearly 15 years, countless doctors and years of hormonal suppressive therapies to begin on the path to true healing. Birth control pills, progesterone therapy to shut down my ovaries, and Lupron caused symptoms including medical menopause, hot flashes, night sweats, extreme weight gain, increased blood pressure and higher cholesterol, and depression. The worst symptoms came with Lupron, a drug developed for prostate cancer, which caused hair loss, ovarian dysfunction, and bone density loss in my spine. This could have been avoided if my doctors had been more educated in the origins and effective treatment options for my disease. I continue to experience some long term side effects from these drugs, years later.

After 15 years, at the age of 28, a seven centimeter complex cyst finally convinced my doctors to perform a laparoscopic surgery. I had been begging for surgery since they first suspected endometriosis when I was 22. The surgeon assured me that she would use excision, but in reality, she merely burned the surface of the disease. Just six months later, my pain was back, and I was struggling to get pregnant. After discovering that I was not ovulating, a fertility specialist prescribed Clomid, and my life changed. I developed a five centimeter endometrioma on my right ovary, which ruptured. From that day on, my life changed dramatically. I was in extreme, daily pain, causing me to drop out of graduate school and spend the majority of my time in bed in agonizing pain. It felt like steel rods were in my body, and I could barely move. However, my doctor in Massachusetts refused to refer me for another surgery, saying it was too soon for my endometriosis to return. She threw her hands up and told me to try in-vetro fertilization. How could I be a mother when I could barely function from day to day? I needed help.

Finally, in June 2013, I traveled to St. Louis to have my second laparoscopic surgery. This excision surgery with Dr. Patrick Yeung, Jr., occurred just 11 months after my first surgery in Boston. Dr. Yeung found my pelvic organs completely adhered by endometriosis and adhesions. During a six hour surgery, 18 separate tissue samples, confirmed by pathology to be endometriosis, were found on my bladder, uterus, both ovaries, peritoneum, appendix, ureters, fallopian tube, left round ligament, cul-de-sac, pelvic brim, bilateral ovarian fossa, bilateral utero-sacral ligament, and recto-cervical space. I also had endometriosis on my bowel, and significant retroperitoneal fibrosis on my ureters. If left untreated, these conditions could have led to life threatening bowel obstructions or kidney failure.

Endometriosis is truly an epidemic. It is more common than AIDS and cancer. It is estimated to cost $119 billion annually in healthcare and loss of productivity in the workplace. Endometriosis causes severe damage to internal organs, and yet takes an average of eight years to diagnose. The majority of surgeons can not effectively remove the disease, and so women are put on band aid pain solutions, like hormonal suppression and narcotic pain medications. They struggle to function daily, miss work, drop out of school, and feel hopeless. You can help us make a change.

I hope you will join me in telling the world that it is time to end the silence!

I have also enclosed a copy of my full story of living with endometriosis.

For more information, please visit:
www.millionwomenmarch2014.org
www.endocenter.org
www.endofound.org
www.centerforendometriosiscare.com
endometriosisfoundation.org

Thank you for your consideration, and I hope to see you on March 13th!


Sincerely,

Monday, January 20, 2014

Bloggers Unite for #EndoMarch2014: Week 2 - What the EndoMarch Means to Me


The Million Woman March for Endometriosis is coming up on March 13th, 2014. This will be the first worldwide effort to raise awareness for endometriosis, and it's going to be an empowering, emotional day for me. Not just because Endo has put me through years of severe cramps, bowel disturbances, acute abdominal pain, ovarian cysts, medical menopause, serious damage to my pelvic organs, and 2 surgeries, but also because of my battle with infertility.  

On November 30th, 2013, I lost my first pregnancy at 6 weeks. I had been struggling to conceive for a year, and I was overjoyed when I got my first positive pregnancy test. I thought my battle with endometriosis was finally over, that I had finally conquered the most heartbreaking side effect of my disease. But my joy quickly turned to fear as it became clear that my baby was not growing as she should. Despite close care from the doctor who finally helped us get pregnant naturally, without IVF, my dreams of holding my child slipped through my fingers and disappeared. 

To understand how devastating this loss was, it is important that you hear how endometriosis has stolen so many other joys from my life. 
(I apologize in advance for the novel...it's pretty difficult to squeeze 16 years of suffering into a small space)

Me at 16, before any diagnosis, major complications, or treatments 

I have been living with endometriosis for about 16 years, although research suggests that endometriosis is laid down during embryonic development, meaning we are likely born with this disease. When I think back on my childhood, it's possible that my bowel endometriosis symptoms existed even back then, but it's very difficult to say for sure. Most likely, my endometriosis began with my period in 1998, when I was 13 years old. For 4 years, I lived with cramps that lasted around 14 days per month, which got worse during my period. I could often be found in bed with my heating pad, and thinking back, I was already dealing with chronic fatigue. My family didn't understand why I needed so much sleep. When I was about 17, my mother took me to the clinic where she worked to get me treated for what she thought was PMDD. I began taking conventional birth control pills that were supposed to balance my hormones and relieve my symptoms. 

At 17, shortly before I began birth control for my cramps that lasted 2 weeks per month

For 2.5 years, I stayed on BCP, but eventually had to stop taking them due to severe migraines that would last up to 3 weeks, and brought sensitivity to light and sound, nausea, and even aura. My doctor said this signaled risk of a stroke, and I was told not to take BCP containing estrogen again. Just a few months after quitting the pills, during the summer of 2005, I landed in the emergency room. I had been having severe pelvic pain for a few days, accompanied with nausea, dizzy spells, and diarrhea (get used to talking about poo if you have bowel endo...it's going to be a big part of your life!). To this day, that pain is some of the worst pain I have felt. I thought I might be dying. I could barely move, and had to crawl to my phone and call 911. 

The ER doctors found 2 kidney stones and an ovarian cyst. Although this cyst was complex (not part of ovulation, but a cyst containing blood, and possibly endometriosis; cysts containing endo are called endometriomas), the doctors did not tell me of what that meant, nor did they treat me for it. They sent me home with a urine strainer, instructing me to try to catch the stones. That was that. 

Me during my senior year of college, when I had chronic ovarian cysts and no treatment or diagnosis

Over the next couple of years, my junior and senior years of college, I struggled with recurring ovarian cysts, some of which ruptured. I began missing school and social events. My professors told me to take care of myself, as if I were bringing this all on by partying and eating poorly. On the contrary, I spent quite a bit of time sleeping from the exhaustion and pain. Because I was on student health insurance, I was being treated by doctors at the student health clinic. Without a primary care doctor, each visit was like starting fresh, and I was told over and over and over that cysts were a normal part of being a woman. I felt alone, responsible for my pain, and inadequate as I struggled more and more to keep up with coursework.  

Graduating from college in 2007, shortly before I was unofficially diagnosed with endometriosis

In 2007, after I graduated from college, I went to the ER again with pelvic pain and dehydration. A cyst found a week prior had ruptured, and the doctors (unable to find a source for my pain) ordered test after test, all of which were invasive and painful, for a girl with endometriosis. Endometriosis can make pelvic exams and ultrasounds extremely painful. When I experienced excruciating pain and refused a pelvic exam, I was accused of being a rape victim, and eventually released with inconclusive tests. They referred me to a gynecologist and sent me on my way. 

This ER visit was not covered by my insurance because I had reached my limit after so many ultrasounds for cysts. It cost me $6,000.

The gynecologist I met with told me I might have endometriosis, and gave me several options. I could go on progesterone therapy (much like BCP, but with no estrogen), shut down my ovaries with Lupron, have a baby, or have surgery. She told me, however, that it was too soon for surgery, and that we needed to see how I responded to hormonal suppression first to diagnose my endometriosis. This is actually false. Surgery is the only way to officially diagnose and effectively treat endometriosis by removing it completely. Excision surgery gives women with endo the best chance at ridding their bodies of endo. It involves cutting the endometriosis out like a cancer, as opposed to burning the surface of the disease and leaving the rest behind (called ablation). 

I began taking Norethindrone, a progesterone therapy. However, the first dosage amount did not help me. I continued to get painful cysts, which were so bad I couldn't lay on my side, and I often vomited from the pain. I struggled with my attendance at work, but without a diagnosis, I had no way to advocate for myself. I began to believe those who told me I was lazy, undependable, flaky, and weak. I began to internalize my disease and blame myself for not being strong enough to deal with my symptoms. My doctor increased my dosage, and after about 6 months, my periods stopped. I had been put into medical menopause, something I had not wanted, and was not prepared to deal with. But I figured it was my lot in life, that I had no other choice.

Fall 2008, my ovaries had finally shut down and I began experiencing weight gain and menopausal symptoms

I stayed on progesterone for 4 years, living with menopausal symptoms in my early 20's. I experienced hot flashes, night sweats, fatigue, a change in metabolism that brought on 50lbs of weight gain, despite diet and exercise changes. The weight gain affected my overall health, with increase in blood pressure, cholesterol, and even fatty liver (thankfully, I worked even harder to change my diet, and the fatty liver resolved, even though I did not lose much weight). I eventually experienced feelings of helplessness and depression, believing there was no hope for me. That this was my life. I tried to adapt, but found it very difficult.

I started this sewing blog as a way to deal with my health problems. Sewing has given me the outlet I need when times get tough.

In 2011, I went to a new gynecologist. I told her that I wanted to stop progesterone and have surgery. I wanted an official diagnosis, to know exactly what was going on in my body, and hopefully get it out of me. She told me it was not necessary, and suggested Lupron. She also referred me to a pelvic pain specialist after a failed attempt at a pelvic exam left me screaming and crying in her office. Without knowing the full potential side effects, I started Lupron, and began a new chapter in my life. 

Before I could take Lupron, I had to have a period. It was excruciating, more pain than I had ever experienced, with pulling, stinging, and burning when using the bathroom, along with severe cramps. I thought perhaps I had forgotten how bad my periods were. I had no idea that it was possible that my endometriosis, which produces its own estrogen and can effectively feed itself, could have been progressing while I was on hormonal suppression. The Lupron did bring relief, and I felt more like myself than I did on progesterone. However, I bled every two weeks, and as soon as it wore off, my pain was back. At this time, my bowel symptoms increased as well, and I experienced severe bowel attacks (painful cramping, sweating, nausea, dizziness, heart palpitations, and diarrhea that lasted for hours). I missed a lot of work, and eventually lost my nannying position (strangely enough, employed by a woman who also had endo), even after I explained the nature of my disease.

A cake my husband bought for me before my first surgery...I requested the phrase "Cut It Open" because I was finally going to get some answers

At the same time, in 2012, I met with yet another gynecologist, who I told I wanted surgery. She told me it was too soon, that my pain was controlled with hormonal suppression, so it was not worth the risks. I had now been living with endo for 14 years, and had been on hormonal suppression for 5 years. I was frustrated, but agreed to go back on Lupron (which can only be taken 6 months at a time, with at least a 6 month break in between). First, my doctor wanted to check my uterine lining, and sent me for an ultrasound. A few weeks later, because my doctor had been on vacation, I got a call that I had an ovarian cyst. I was not surprised; I had had so many already. But this time, it was not treated lightly. 

My cyst was complex, and was measuring about 7cm in size, about as big as a chicken egg. Although she did not come right out and say it, one major concern was ovarian cancer. I was sent to a diagnostic ultrasound office, where a radiologist told me she could not rule out the chance that the cyst was cancerous. It would have to come out. 

I was finally getting my surgery. 

Waking up from my first surgery

At my July 2012 surgery, at age 27, I had stage III endometriosis, involving my pelvic wall, ovaries, and bladder. She said she could also see a visibly inflamed colon (not surprising, as adhesions had pulled it into an S shape), but she did not touch it. This surgery would not bring the relief I needed. Even though I asked this surgeon point blank if she could and would use excision to remove any endometriosis, and she assured me that she would, she used ablation. This burns the surface, leaving disease behind. Because of this, she told me that I would immediately need to try to have a baby, but because my husband and I weren't quite ready, I was put back on Lupron. Unfortunately, this time, it did not help. And the side effects were serious. 

A bone density scan revealed I had bone loss in my spine. My doctors had failed to ask about a history of bone degeneration, which had been found in my low back when I was 18. The damage was done...Lupron had made this worse, and I could no longer take it. Not only did I lose bone density, and a good amount of hair, I found no relief. My periods were just as bad, and within months, I was worse than I was before surgery. I had daily cramps, and was now struggling to get pregnant. 

3 months into trying to conceive (TTC), my doctor told me I needed to see a reproductive endocrinologist. She found that I wasn't ovulating, and put me on the fertility drug Clomid. Unfortunately, she did not monitor me, and I developed a 5cm endometrioma, which eventually ruptured. I had extremely heavy bleeding, to the point that I was passing out, accompanied by passing large clots, dizziness, nausea, and severe pain. Free fluid was found during an ER visit, and my life changed.

In February 2013, just two days after my ruptured endometrioma and trip to the ER, my husband and I held our wedding reception. Because I was in so much pain, I faked dancing by swishing my dress around.  

For the next 5 months, I lived in daily, debilitating pain. Most days, I could not get out of bed. I dropped out of graduate school, but continued to work 10-20 hours a week. The rest of the time, I was exhausted, and in pain. I had sharp, stabbing, pulling pains all over in my belly, and when I had my period, it felt like steel rods were inside my body. I couldn't even roll over in bed during my period. I continued to bleed heavily, pass clots, and have pain that I often could not even breathe through. The pain was indescribable. I needed help. 

I turned to my gynecologist, who dismissed my pain, telling me it was impossible for my endo to grow back so quickly. She said the severe bowel symptoms and agonizing rectal pain must be a gastrointestinal issue, and referred me to a GI. When my colonoscopy came back normal, she threw her hands up and told me to just get pregnant. I begged her to help me, I begged for another surgery. In response, she told me that my endometrioma must have been a part of ovulation, and that another surgery would just put me at risk for complications. She told me she highly opposed a second surgery because my three week recovery from my first had been so bad. 

A recovery. A recovery was not worth removing my endometriosis and relieving me of the hell I was living in. 

I took matters into my own hands. I spent all my free time researching endometriosis, joining support groups, reading medical articles, and pursuing excision surgery. I knew that excision was my best chance at ridding myself of this disease. I sent my records to Dr. Patrick Yeung in St. Louis. Within two days, he called me (while on vacation) to tell me he had a plan to help me. 

In June 2013, I flew to St. Louis and had excision surgery. This video explains what he found. 


For those who can't view the video (it is not available on mobile devices), my surgeon found severe inflammatory stage IV endometriosis. Adhesions had fused all of my pelvic organs, causing distorted anatomy.  He excised 18 separate areas of endometriosis, confirmed by pathology including my bladder, uterus, both ovaries, peritoneum (lining of the pelvis), appendix, ureters, fallopian tube, left round ligament, cul-de-sac, pelvic brim, bilateral ovarian fossa, bilateral uterosacral ligament, and rectocervical space. I also had bowel endometriosis. My ovaries each contained an endometrioma, and were pulled behind my uterus and adhered to my posterior pelvic wall. My bladder was folding in on itself, my appendix was kinked into an S shape, my left Fallopian tube was kinked shut, and my rectum and vagina were glued together with dense adhesions (causing the rectal pain). I also had significant retroperitoneal fibrosis, scar tissue growing on my ureters which could have eventually blocked them off, leading to kidney failure. 

Left: The end result of my first surgery, 2012. Right: What I was living with in 2013 just 11 months later. Adhesions had fused my pelvic organs, which should be able to move freely. Explains why it hurt to roll over in bed. My organs were being strangled.

My gynecologist had put my life at risk by not listening to my pain. If I had not had surgery, endo would have destroyed my organs, could have led to a bowel obstruction or kidney failure by blocking my bowel and ureters. If my endometriosis had gone untreated by not having another surgery, I could have suffered life-threatening conditions. 

And she was worried I would have a rough recovery?

My recovery from excision was far easier than my recovery from ablation. Instead of a 2 weeks in bed and 6 months of incision complications, I was up and about after a couple of days, and doing chores after 10 days.

Thankfully, in the months following my excision, I became a new woman. I could do things I hadn't done in over 10 years, like running and jumping, having boundless energy, and even having the ability to conceive a child. I started seeing a NaPro technology doctor, recommended by my surgeon, and within two weeks of diagnosing and treating hormone imbalances, I was pregnant. We tried everything we could to support the pregnancy. Unfortunately I miscarried, and began having pelvic pain again. My NaPro doctor sent me for an MRI, which found something none of us expected. 

I found out last week that I have two complex cysts on my right ovary which have tripled in size in a month, and now measure a total of 5cm.This is not totally unexpected, as ovarian endometriosis does recur even after excision. It is believed that endo is found deep inside the ovary and is pushed to the surface when a woman ovulates. What we did not expect was fluid in my left Fallopian tube. This may be something benign, or it might be leftover pregnancy tissue, which we now think may have been ectopic. Either way, a blocked tube puts me at risk for a future ectopic pregnancy, and the tube will need to be removed before we can safely move forward toward conceiving again.


Everything happens for a reason...the happiness I felt during this photo was like sunshine peeking between storm clouds

As it stands, I now face my third surgery in two years. I have scheduled it for July. What we will find, I do not know. What I do know is that I have an exceptional surgeon on my side, one of only 100 in the US who is meticulous and skilled enough to remove all of the visible disease. To me, the EndoMarch is my chance to share my story. It is my chance to give a voice to women with endometriosis, and fight for better diagnostic care and treatment. No one should live through what I lived through in the last few years. No one should be asked to leave disease in her body that will impede her ability to function, and to conceive and carry a child. 

It is time for our voices to be heard. It is time to end the silence.  


Monday, January 13, 2014

Bloggers Unite for #EndoMarch2014: Week 1 - Basic Info and Why I Am Marching

Rocking my Endo Warrior shirt

You may have read my last post, A Message to my Endo Sisters, but what you might not know is that I have become very active in the Endometriosis Support and Awareness community since my excision surgery in June. I flew halfway across the country to have my endometriosis excised, meaning the tissue was cut out completely, like a cancer. I have written some articles for an online women's health journal, Hormones Matter, about my experiences with Endo and some recipes that I have created for my anti-inflammatory diet. I have also joined several support groups online, and have met some amazing, inspiring women along the way.

I have been gearing up for the EndoMarch in Washington, D.C. on March 13th, 2014. The event will unite women, men, families, partners, doctors, nurses, and advocates whose lives have been changed by Endometriosis, a disease which affects nearly 176 million women and girls worldwide. Dr. Camran Nezhat and his team have put months of effort and planning into this worldwide event to raise awareness, begin early detection screenings, advocate effective treatment, advance training for nurses and physicians, and allocate governmental funding for endometriosis. To find a team in your country, click here

In the US, the EndoMarch will take place from 9am to 9pm, including live music, special guest speakers, a march on Capitol Hill, and a post-march dinner. Registration is free, and you can do so on the EndoMarch website.  I personally cannot wait to meet my Endo Sisters and have my voice heard!

As a Stage IV Endometriosis patient who has lived with this disease for nearly 15 years, and who has been given her quality of life back by a highly skilled excision specialist, I want to tell my story. I think it is incredibly important that girls and women know the signs and symptoms of this disease so that they can get effective treatment as early as possible. Endometriosis stole years of my life, jeopardized my career, destroyed my organs, and negatively impacted my fertility. I spent far too many years of my life on hormonal suppression therapies that came with their own complications. I gained a lot of weight, experienced menopausal symptoms, experienced impaired ovarian function, decreased bone density in my spine, and even lost a decent amount of my hair. The countless doctors I have seen for the pain and detectable complications (mainly, complex ovarian cysts) dismissed my requests for surgery, and gave the disease more time to destroy my body. It took 7 years after my first ER visit for a doctor to finally agree to perform an exploratory surgery. By then, the damage had been done.

Every doctor who comes in contact with women with pelvic pain needs to know what endometriosis is, how it can impact a woman's health, effective treatments with low risk of life changing side effects, and to whom they can refer the patient if they cannot effectively treat her pain (click here to learn more about the difference between burning the surface of endometriosis [ablation or fulguration] and completely removing the disease [excision]). 

Endometriosis does NOT contain itself to a woman's reproductive organs, and is not cured by hysterectomy. Endometriosis has been shown to produce its own estrogen, which feeds the disease. This is why women have pain even during and after hormonal suppression, complete hysterectomy, pregnancy, and menopause. At my excision surgery, just 11 months after my ablation surgery, endometriosis was found on my bowel, left round ligament, utero-sacral ligaments, cul-de-sac, pelvic brim, bladder, ovaries, ovarian fossa, appendix, rectocervical space, and one Fallopian tube. In total, 18 separate sites of confirmed endometriosis. 

Endometriosis is NOT caused by infections, STDs, or retrograde menstruation. Studies suggest that endometriosis is laid down during embryonic development by dislocated endometrial tissue. In fact, patients have been found to have symptoms (such as bowel issues and endometriomas) prior to the onset of menses. The sooner we dispel the myths, the sooner we can start treating the disease effectively. 

Endometriosis DOES come at a heavy price. Not only does endometriosis steal a woman's physical and emotional health, but it steals her ability to be a productive member of her community. Despite our best efforts, many endometriosis patients have had to take significant time off from work and school. Many of us are barely able to leave our beds when our pain is at its worst. A study has shown that the health insurance and loss of productivity costs are estimated at $22 billion in the US alone. Endometriosis is worth allocating funding for research and medical professional training. 

For all of these reasons, for myself and for my Endo Sisters, I am ready to stand up and have my voice heard. Endometriosis is a complex disease with the potential for serious complications. It is a disease that affects every aspect of a patient's life, and loved ones around her. Women with endometriosis deserve better than to be put on band-aid treatments that do not reduce or cure their disease. Endometriosis patients deserve better than to be brushed aside when doctors do not know what to do for them next. Endometriosis patients deserve effective treatment and recognition for the strength and courage they show as they fight this debilitating and life-changing disease. 

I will be joining other bloggers for the next 10 weeks as we Unite for EndoMarch 2014!

I hope to see you all on March 13th!