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There’s just one more full day to endure prior to surgery!

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Follow me on my journey at excisionismymission.com.  I will still post here from time to time and share articles that I come across on endometriois and adenomyosis.

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An older article, but one that discusses the differences between adenomyosis and fibroids.  Adeno is commonly misdiagnosed as fibroids, which happens to be my case.  (7 years of of thinking I just had fibroids.)  

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Fellow endosisters: we can change the system.  We can raise our voices enough to be heard, for endometriosis to receive the research it deserves, and for us to receive the best care possible.  

“REMEMBER THIS: You are in the driver’s seat of your health. You are top dog, CEO, the head honcho. No one can take better care of the smart, resilient, capable, and STRONG human who is you better than you.You don’t have to live your life in pain and suffering. Your life is too precious.And what’s really awesome is this. You’re not alone. I’m not alone. We’re on this journey together & together we can make it happen. “

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“After years of trusting my doctor’s misguided treatments based on outdated practices and staying silent about a condition that impacts every. single. aspect. of my life, I’m pissed off.Here’s the thing: Shame, embarrassment or whatever it is that’s held my and so many other women’s voices hostage is the last thing on my mind when I’m writhing half naked on the floor in pain so severe I’m convinced there’s a cactus lodged up my uterus.Instead, the only thing I’m thinking about is how to make the pain stop. Followed by, “Why the f*ck is no one giving this disease the attention it deserves?”

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Spark

There are days where I am OK with the concept of infertility, that I understand that I will most likely never have children.  Endometriosis wasn’t necessarily the culprit, but failure to diagnose adenomyosis.  I am puzzled as to why this disease is not covered well with gynecologists during their education?  Just like endometriosis, women suffer for years without a proper diagnosis.

There are days where I am not OK.  This past Wednesday, I was driving to the grocery store and the tears started to come. I had on Tori Amos’ “Spark” and in that moment I truly realized what she wrote this song about.  I had already known that it was about her miscarriages, but as the song progressed, I realized it was an internal dialogue.  Am I OK with this today? I say I don’t want it, to have children. I said it over and over again over the years, but I didn’t really mean it.  I don’t think my fate will turn around in the overtime.  This is the overtime.  Surgery is 36 days away.  My fate was decided when the doctors missed the adenomyosis, when I failed to do the research and ask questions.

Tori Amos has commented a few times over the years about her struggle with endometriosis and infertility. Even though I am a fan of Tori’s, a certified Ear with Feet, as she calls her fans, I didn’t realize until recently what she struggled with and how her music was cathartic...it was her healing process.  Tori has a beautiful teenage daughter.  She was able to conceive and fulfill her dream of becoming a mother.  

I wish I could go back about 10 years and shake myself silly.  Just grab myself by the shoulders and tell myself to have a child.  My chances were better during my twenties.  Now I am 38 quickly approaching 39--the odds are stacked against me.  

Today, Sunday, June 5, 2016, I am OK with this.  As a thunderstorm moves in and the sun disappears behind a line of dark, gray clouds, I am OK with this.

 The wind picks up and the river grows angry, but I am still OK with this.  

“6:58, are you sure where my spark is?” What happened to my ability to create life?

Tori Amos, “Spark” (1998)

https://www.youtube.com/watch?v=jVMwDd8V_kY

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An informative post on adenomyosis and a fellow endo sister’s experience with the disease.  

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My primary tumblr is common trickery, so unfortunately when I follow you back, you will probably see me as this account.  This is one of the downfalls of tumblr.  Blargh!  I have an off-site blog and will link to more writing that I do there about endo.  You can also find me here: http://www.karmablue.org/dispatches

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One of my interests as I continue my studies in psychology is mentioned in this article, the psychosocial effects of endometriosis.  We talk about the physical effects, but endo is a systemic disease and we need more open dialogue on how it effects our psychological well-being:

Endometriosis can affect your personality. Although endometriosis can cause debilitating pain, "when you don't look sick to your friends or coworkers ... it becomes a problem," Dr. Seckin notes.

Women who suffer from this chronic condition commonly experience a range of emotions "from feeling guilty, depressed, and anxious to feeling self-conscious and isolated," says Dr. Seckin. "And why not? Everyone around them is questioning their pain or passing judgment on something they don't understand."

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From the Endometriosis Foundation of America’s Medical Conference from this year: a great, informative video explaining adenomyosis and its effects on fertility.  Recent studies suggest that endometriosis does not affect fertility as much as previously thought, but adenomyosis can be a bit trickier.

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What irritates me the most is that many doctors continue to spread these myths.  I know that there isn’t harm intended and some of this information is still believed to be true, but we need to change the language in which we speak about endometriosis. Hysterectomy is not a cure. Pregnancy is not a cure. Lupron is a risky band-aid that is not a cure. Endometriosis does not spread or “grow.”  (See next statement) Poor surgical technique leads to adhesions and scar tissue that can make symptoms worse. Painful menstrual cramps are NOT NORMAL. Believe in your pain.  Believe in yourself.  Be an advocate for your health.  Having endometriosis means that we have to become educated about the current gold standards of treatment as we cannot rely on doctors to always have the best information.

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An important article for those with and without endometriosis need to read.  Our continued negligence of not researching this disease has a critical impact on our society.  Some quotes from the article:

"Discussions about 'Leaning In' tend to focus on women, self-confidence and career challenges women may face once they become parents. However, these high-profile discussions rarely ever include career challenges faced by women who have debilitating health issues that are linked — scientifically, medically or otherwise — in the public's mind to a 'woman's problem' such as menstruation," Gupta said. "No one wants to let you take time off because of what they perceive as just a bad period."

Lakshmi said, "If I had been diagnosed at 16 or 26 or even 32, I would have gained valuable time. I would have been able to be more present for my family and friends … [had] a greater capacity to advance professionally, and I would have also had a greater capacity for intimacy."

"While endometriosis affects 1 out of every 10 women, only a fraction of those cases will ever be diagnosed. Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria."

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How can I be the best advocate for endometriosis?

I battle with this question daily as I read posts in online endo support groups and wonder how much to say, and how to say it.  I suppose it’s a skill I will need to learn once I graduate and become a therapist.  The concern is that many doctors provide their patients with information that doesn’t conform to the best standard of treatment.  They’re given the standard routine of Lupron and laparoscopic ablation for their disease.  You cannot blame the doctors persay because this is what they were taught during their schooling and training, but what baffles me is the lack of CE for gynecologists when it comes to endometriosis.  Is it simply a disease that they shy away from because of its complexity?  It’s easier to just give pap-smears and prescribe birth control and treat an STD.  Pelvic pain could be a plethora of different diseases - I can understand why it is difficult to diagnose endometriosis for some, especially when a woman is in such pain it’s hard to describe what is going on.  Endo can present itself outside of the reproductive organs, so when a woman comes into a gynecologist’s office and complains of pelvic pain, and then a pain under her rib cage and shortness of breath, he or she is bound to think of these as two separate entities, completely unrelated and perhaps one pertaining to anxiety.  This was my story for years.  Only until I saw a specialist did I understand that endometriosis can be found in the respiratory system (diaphragm and lungs.)  But because this is rare, a typical gynecologist most likely doesn’t recognize it when they come across it. There is a reason why we have specialists.  Someone who may be an amazing obstetrician may not be trained in treating endometriosis.

Anyway, I’m getting off track.  I wonder how much I can say to someone without offending them, and how to best approach a woman who may have been given inaccurate information?  You can’t step in and simply proclaim that their hysterectomy scheduled for tomorrow should be stopped.  But then you sit back and wonder - should you ignore it?  Should you say something.  Usually all I can do is wish them the best outcome and be supportive.  

What is the best approach and how can I be the best advocate?  I guess through education via this weblog in hopes that one woman will read this and seek out treatment with a specialist, and learn about wide excision surgery as the best option for endometriosis. I hope it is enough.

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This struck me after reading via medium: the experience of a young woman battling endometriosis.  I am glad that many women are now speaking up, but I am also greatly disturbed by the lack of care and recognition of this disease.  If you have a story to share on your journey with endo, please share it and send me a link so I can share.

“And there’s always a voice somewhere telling me none of this is real, that disease isn’t real, that pain is manufactured by pharmaceutical companies, that all the things that make me unwell could be solved if I ate this or drank that or poked needles here or took capsules of powders and potions.And then there are the doctors who frown at my blood work, my ultrasounds, my surgical scars — look at my organs, my chemistry, my brain — and I am sick, yes, but there are so many unanswered questions, and they hate that. More than I hate being sick, they hate not knowing why.Did I suck on too much plastic as a kid? Did my early-twenties satisfy a ticking genetic time bomb that had just been dormant inside of me since I was still in utero? Were there too many hormones in my cereal’s milk?Is all of this the beginning of something more sinister? Is this early stage of something with a finite end stage? Twice now they’ve said, “cancer” and twice now, we sighed with relief when nothing was found. But for every time they said “it isn’t cancer”, they came up with more labs that didn’t make sense, a new symptom after six months, crossed another drug off the list.”

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Hysterectomy is not a cure for endometriosis.  In the case of adenomyosis, removal of the uterus is an option, but fertility can be maintained through a presacral neurectomy, which I will cover in another post.  Basically, it severs a nerve leading to the uterus which relieves midline pain.

I see many women in the endo community having unnecessary hysterectomies and then recurrence of endometriosis.  It’s extremely important to get a second and even third opinion once your doctor recommends a hysterectomy.  Why? Because if you have endometriosis outside of the ovaries, cervix, uterus, and tubes that may be removed (which would be a radical hysterectomy.  Most just involve a partial, or removal of the uterus), this does not stop endometriosis from having estrogen stores.  The lesions may indeed persist. The disease must be excised, or removed, in order to have long-term relief.  Not every OB-GYN is trained to perform wide excision surgery.  Ask your doctor if they are trained, or find a specialist that is.  Ask what their success rate is for recurrence after excision surgery!

Do I have the scientific evidence to back this up?  Yes.  See the original link I posted to, as well as the resources below:

http://endopaedia.info/treatment21.html |  Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/ |  Recurrence of endometriosis after hysterectomy

http://www.endofound.org/endometriosis | FAQ via the Endometriosis Foundation of America: Addresses the myth that hysterectomy will cure endometriosis.

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From one of the leading excision specialists for endometriosis, The Center for Endometriosis Care & Dr. Sinervo discuss optimal outcomes with excision surgery compared to vaporizaton of endo &  medical suppression of endo (usage of medications like Lupron.)  The article also discusses the importance of considering other diseases/issues that could cause pain after treatment.  For me, this was my diagnosis of adenomyosis.  My ongoing pain signaled that something was wrong after my last surgery.

The most amusing part is that my gynecologist knew that something was wrong with my uterus.  During my last pelvic exam with her late last year, she commented that my uterus was oddly immobile and didn’t feel right.   She missed the possibility of adenomyosis. 

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““These result suggests that about 6 out of 10 cases were not identified before the active search of the disease. We believe that this might approximately be considered as the portion of relevant undiagnosed cases in the general population in this age range,” the authors wrote.”