Endometriosis Part II

My husband & I were well into a difficult journey trying for a baby, but we had not found answers in the traditional health care system.  We were ready to try another approach.

We turned to a holistic clinic for help.  Our insurance would not cover it, but we were inching toward our third year of hoping to have a baby, so we forked over the cash.  Interestingly, the practitioner suggested I do a detox.  I gave up anything wheat-based, plus meat & dairy for a month.  I drank teas to help stimulate the liver and added loads of nutrient and probiotic-rich powders to my meals & drinks.  I took food-based supplements and practiced meditation.  After the first week I smelled appalling.  It was the die off of bad bacteria in my system.  The week passed and I felt great.  I didn't know it, but getting rid of the wheat should have been a clue to the lurking Celiac Disease.  The program wasn't my perfect answer yet, but being wheat-free was a step in the right direction.  I didn't have time to process what the huge changes I was experiencing meant though, because something else happened that year.

My husband was offered a position in the West African country of Guinea.  We moved in March of 2009.  I continued the detox protocol as long as I could, but eventually I had to give it up.  It was difficult to follow in an already very restricted environment and we had other fish to fry adjusting to a new culture & language.  We decided to just continue hoping for a baby while we were overseas, but not pursue any particular treatment paths.

Then in the middle of the night that September, I woke up in agonizing pain.  I went through my first medical evacuation in Africa.  The doctors could not diagnose the cause and ended up telling me I had a burst cyst on one of my ovaries.  I spent four days in a hospital in the neighboring country of Senegal, where I ended up discharging myself in a rage of utter fear & frustration.  The pain & the stress of the situation had been so intense.  I knew the diagnosis could not be right & vaguely felt it had something to do with our infertility, but had no recourse, especially in Africa with very limited medical resources.  We could not return to Guinea though, due to a political crisis, so my daughter & I returned temporarily to the U.S.   

(As a side note here . . . my first very extreme & up-close experience of the health care system in Africa totally unlocked my heart to the women there.  The circumstances in the average African hospital are tragic.  Despite my disappointments with health care in the U.S., I am keenly aware of how lucky we are to have the access we have here.  I wrestle with guilt over that, but what I really want to do is reach out to other women & help one another battle health issues, especially the ones that affect us disproportionately, like autoimmunity.  We need to spread our knowledge around & use our collective power to push for better care for us all . . . African women, American women, all women.) 

The same horrible sequence of events repeated a few months later.  The pain came over me in waves & panic about what was to come hit me.  My brother took me to the E.R.  My husband had returned to his post in Guinea, so with the support of my family and the advice of my doctor, I agreed to laparoscopic surgery.  In March of 2010, I finally understood a piece of my infertility picture & learned about my second autoimmune disorder.  I finally knew a little more about "what the hell was wrong with me."  I had extensive Endometriosis.  I also underwent an appendectomy at the same time, as I had chronic appendicitis.

After surgery, I was astonished.  I had not even realized how intense & constant the pain had been until its source was (temporarily, Endometriosis can & does return after surgery, sometimes worse than before) removed.  It was shocking how debilitated it had made me feel.  Unfortunately, only a year after surgery new problems would appear.  Feeling great would only last so long.

I was also angry.  Very angry.  Years, the "perfect timing" years, had been taken from us.  Our doctors had not listened or carefully read the forms & questionnaires we filled out for them.  I had spent needless time in terrible pain.  I had asked the right questions, like, "Could this be something more serious?  Not just a case of 'sometimes we don't know'?"  It seemed like we had a potential new start, but we were also crushingly exhausted by the stress of the whole process already.  We decided that we had made peace with not having another child and I began Endometriosis treatment.  Continual birth control, one pill after the next, no stopping for a normal cycle.

What I didn't know yet, was that there were still more pieces to my infertility picture.  Worse yet, the treatment for one autoimmune disorder was probably adding to the worsening severity of another still undiscovered one. 

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2 thoughts on “Endometriosis Part II

  1. Chelle

    I can completely relate! I suffer from severe endometriosis that was misdiagnosed or ignored until my late 20's ( I'm now 33), I spent years not knowing or understanding what was happening to me- I was even told by one Dr that I just have bad cramps (bad cramps don't make you vomit, shake, and basically pass out)! I've been on birth control and a medicine that puts your body into early menopause (hot flashes at 30 is not the hot you want to be), it's got to the point that I gave up all the meds and will just take over the counter to try and manage the pain. It's sad because I felt that the Drs I was talking to didn't listen and just assumed a was a "weak" female who couldn't handle pain and the whole time the endometriosis was getting worse! I try to think that I will blessed with a child at 33 it's hard to accept that endo can take that away, but I've also grasped that maybe my child will come from the heart and I will foster or adopt. I'm hoping that technologies get better in regard to women's health, we can put a man on the moon but still can't understand a women's body

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