Endometriosis Surgery

Endo WomanIt’s been one month since I wrote my last blog.  I have this thing about blogging . . . often when a very heavy topic is weighing on my mind I will avoid writing about it.  This avoidance basically causes writer’s block though & I end up unable to write about anything at all for weeks, even months.  The first time this happened to me was when our family was evacuated from the first West African country we lived in . . . a double whammy of political crisis & medical emergency had hit us.  Talk about traumatic!  Needless to say, I didn’t write for a long time.  I didn’t know how to face that big event, but not facing it prevented all creative thought from flowing.  It’s happened to me about three times since & each time I took big chunks of time off from blogging.  I needed time to process.

I’m in that place again & today I’m trying to face this demon by writing this blog . . . maybe one of my most honest & vulnerable blogs so far.  On May 27th, I updated you guys on my Endometriosis journey & let you know I would be interviewing surgeons.  On June 5th I met with the surgeon that my husband & I have ultimately chosen & learned that I must proceed with laproscopic surgery as soon as possible (which is scheduled for the end of this month).  Based on symptoms, physical exam, imaging, & my prior Endo. history, the surgeon believes I have severe Stage 4 Endo that has entered my bowel wall.  He explained to us that there are four stages to Endo. & that each stage has levels of severity.  He feels that I have probably reached the worst stage & level & that delaying surgery is, in his words, ” . . . not even an option.”

It seems that my right ovary & tube may need to be removed.  The doctor is awesome, has 30 years of Endometriosis surgical experience, uses the most advanced techniques, & has promised me that he will do everything possible to preserve my reproductive organs.  However, my husband & I have agreed that we will give him permission to make appropriate decisions after he is able to assess how seriously they may be damaged.

The surgeon will also assess how serious the bowel involvement is during the laproscopy.  If it is required, I will be having a second surgery six-eight weeks later to resection my bowel.  I am most concerned about this potential surgery.  As a Celiac, it is my highest priority to preserve my digestive health, top to bottom.  Even a small resectioning is a major, major surgical event.  Weight loss following the procedure makes me particularly anxious, since I am already underweight.

Finally, the doctor explained that he finds Endo. in the chest cavity of about 4-5% of his patients with Endo. of the bowel.  I have had imaging, a Pulmonary Function Test, & an Echo Cardiogram as part of my pre-op testing to give him as much information as possible about whether or not I, too, am dealing w/ Endo. of the diaphragm, heart, and/or lungs.  He will use those results along with what he is able to visualize during the laproscopy to determine how we will treat, if it is found on or near my heart or lungs.  This delicate area may require a hormonal treatment method . . . basically, I would be put on drugs that induce menopause & destroy the implants (since they thrive on estrogen).

My case is further complicated by my MTHFR gene mutation.  I am homozygous C677T.  This is the worst mutation of MTHFR & puts me at high risk for blood clots.  I may have to take blood thinners post surgery & during hormonal treatment, if it is required.  We will meet with a hematologist to discuss all of this in detail before the first surgery.

Here’s what’s going through my mind folks . . .

A)  Can this honestly be happening to me?  I knew about how Endo. could spread to the intestines, heart, & lungs, but have always read it was so rare that I never even imagined it happening to me.

B)  This stuff is life-threatening.  Since meeting with the surgeon I have read about many inspiring women that have survived full-blown intestinal blockage & even collapsed lungs as a result of Endo.  It gives me hope, but it does not completely prevent the obvious thought . . . “This stuff is life-threatening.”

C)  Why me?  I would be a liar if I said there is no part of me that isn’t having a little bit of a pity-party.  I have worked tirelessly for two & half years following Autoimmune Protocol & adopting Paleo lifestyle changes.  Those things dramatically improved my health & I had hoped they were enough to manage Endo.  They are not.  There are limits to diet & lifestyle.

Here’s what I’m doing about it . . .

You guys know me by now . . . I am not likely to take something like this lying down (Well, I mean, technically I have to lay down for surgery, but you know what I mean.  LOL!).

A)  I have a plan!  I have gathered info from all my amazing ladies in the AI battle & I am starting a BIG “get ready for surgery” routine.  It will include acupuncture, massage, meditation, a short course of MAJOR supplementation right before & right after each procedure to aid healing, & of course, sleep.

B)  Learn, learn, learn!  I am researching double overtime so that I know as much as possible about every aspect of this journey.  I take breaks when it overwhelms me or is scaring me more than educating me, but the hard truth is this . . . There is nobody, absolutely nobody, not doctors, not family, not friends, nobody, who is as invested in my health as I am.  I need to be my own best advocate. 

C)  This is an opportunity!  I am using this an opportunity to truly understand where diet & lifestyle can meet with & collaborate effectively with conventional medicine.  Just like diet & lifestyle had limits for the aggressive Endo. I am dealing with, conventional medicine has limits too.  There is a place for a complimentary approach & I hope to find it.  In the future maybe I can use my experience navigating both for the best possible outcome to help other women do the same, right?

Here’s what I’m doing right now . . .

Frankly, I’m crying when I need too.  I’m taking each step as I can & asking for tons of support from those close to me.  And tomorrow I am going on vacation.  There’s going to be another blog “dry spell,” but I hope all my awesome readers will completely understand & stick with me through this period.  I’m going to spend a few weeks with family, put some energy into another fun project I have in the works (deets soon!!), & I’ll be praying.  My most heartfelt prayer right now?  Help me face the fear.

About Angie Alt

Angie Alt is part of the blogging duo behind Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with Celiac and other autoimmune diseases; one creative, nutritious meal at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She’s also a world traveler who has been medically evacuated from two foreign countries. Strategizing worst-case scenarios is now something of a hobby. She is a Certified Health Coach through the Institute for Integrative Nutrition and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol. You can also find her on Instagram.

5 comments

  • […] Endometriosis Surgery by Angie on Autoimmue Paleo. “I would be a liar if I said there is no part of me that isn’t having a little bit of a pity-party.  I have worked tirelessly for two & half years following Autoimmune Protocol & adopting Paleo lifestyle changes.  Those things dramatically improved my health & I had hoped they were enough to manage Endo.  They are not.” […]

  • hailee lanker says

    Hello Angie,

    Could you suggest some resources for learning more about the effects of endometriosis in the bowel etc? I think my case is pretty atypical and I want to learn as much as I can.

    Thank you!

    • Angie Alt says

      Yes, Hailee, do some research on the Center for Endometriosis Care’s website. Good luck! I know it’s tough!

      • Melissa says

        Hi Angie!!
        I am 37 and live in the New York area and am suffering from endometriosis. I have an appointment with Dr Seckim in a couple of weeks. I am in so much pain all the time and am so scared. I’m trying to get pregnant ans I think to myself the same thing why me!!

        • Angie Alt says

          Melissa-
          I am sorry to hear this. I’m wishing the best. Dr. Seckin has a great reputation, so I hope you will find your answers.

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