RARE~Stage IV Deeply Infiltrated Intestinal Endometriosis-1st diagnosis!
by Stage IV
As some women that have been diagnosed w/ endo., my monthly cycles became heavier, painful (passing huge clots), constipation & rectal & colon pain (a new onset for me) gradually became severe over a few years (in my late 20's). I was already on birth control pills to hopefully regulate menses.
I informed my PCP & Gyn of the onset & chronic symptoms over the years & was instructed to stay on BC pills & take pain meds as needed.
Appearance wise (externally) to the eye, I seemed "fine". I practically had to beg for ultrasounds over the years (impressions concluded thickening of endometrium, free fluid, small nabothian cysts etc.-not alarming).
In 2009 I had an exploratory laparoscopy to r/o hernia after a patient of size fell on me. The performing general surgeon (a colleague) was kind enough to obtain photos of my uterus, fallopian tubes & both ovaries upon my request. Of course they were normally beautiful.
Despite this, the pain became debilitating & chronic! After researching & speaking w/ colleagues, I had concerns that I may have endometriosis. I became painfully desperate due to pain in late 2011 throughout 2012. The pain was unnaturally extreme, I only had one "normal" week monthly.
Rectal pain nearly made me pass out. I needed to change sanitary napkins every 30-60 minutes etc. To summarize events, I visited both my PCP & Gyn M.D. & addressed the worsening of my symptoms & endometriosis concerns. My PCP bluntly stated, "...You don't have that!"
My Gyn. post a pelvic exam & palpating inflamed regions on the left aspect, inquired if the area he was palpating whether it was tender, I replied, "Yes!" He replied, "...I believe you do have endometriosis... let's try a mirena..." I declined due to the extreme pain etc. He (Gyn.) stated that I probably needed an MRI ( yet he failed to order one).
My former PCP stated, your gyn. M.D will have to order an MRI etc. Shortly after the start if 2012, w/ my cycles,there was blood in my stool. It felt like broken glass was passing through my rectum & if something was eating me inside out.
This was in addition to severe & chronic pelvic pain. Pain was unbearable, I commenced passing out. My ability to work was being severely compromised. At work, my coworkers would here me moaning in pain & could see that something was horribly wrong.
In 2012 I visited a GI specialist, he performed a colonoscopy & stated if negative, try meds & he would input orders for an abdomen & pelvis CT. His impression was, internal hemorrhoids (use suppositories etc.) I knew something was seriously wrong.
I visited my former gyn. one last time. Post my pelvic exam, his gloves had bright red blood on them. He checked me rectally, again, blood on his gloves. He seemed so worried, he began to sincerely apologize. He informed my husband & me that, he now knew that for a certainty that I had endometriosis & it has apparently infiltrated the colon & hopefully is not anything more & that I was more than likely going to need a temporary (hopefully) ileostomy.
He kept saying, "I'm sorry sweet-heart." He told me he would operate on me in a heart beat but he no longer operated. He suggested Dr. David Redwine but by this time he had retired. Per my gyn., he told me I needed to visit Dr. Ceana Nezhat. He even composed a letter & called his office in my behalf. Unfortunately, Dr. Nezhat doesn't accept insurance but his office manager & staff fought hard on my behalf in attempt to get my insurance to approve treatment b/c they did not want to bankrupt me etc.
Appallingly, my insurance denied despite the documented severity of my health & life. I was now anaemic & loosing excessive weight. My insurance (HUMANA) stated there was a surgeon who could perform the surgery but wouldn't provide the name. My husband & I talked to several individuals until we at least received the hospital's name where this "supposedly" surgeon who could provide the care I needed immediately.
Ladies & gentlemen (who may be reading this on behalf of a woman in their lives), I was literally dying! As a health care professional, I couldn't believe what I was experiencing. Unfortunately, after calling & after a couple of voicemails were left on the office manager's phone, I had to compose a plan B.
At least a month elapsed! After prayer & meditation, I did my on research while in tears due to pain. I was barely eating (only consuming applesauce & crackers & water, so I could medicate to no avail).
Fortunately I located a beyond awesome gyn. This is so unreal... I called the office after googling & verifying my insurance was accepted, I briefly informed the staff member (receptionist of my situation w/ bleeding vaginally & rectally ; I thanked her extensively for taking the initiative & doing this. Most lack the courage to do so b/c of the office atmosphere). She put me on a brief hold, & the gyn. came to the phone!!!! THIS NEVER OCCURS! I worked w/ physicians (hospital & clinic).
Long story short, she saw me the same day, initially she did not not think I had endo. The reason why my ultrasounds were normal is due to the fact ultrasound techs are not trained to perform trans-vaginal ultrasounds where they aim the probe to view the posterior fornix. My new gyn. performs her own ultrasounds & there it was! A lesion hiding behind the uterus. She looked very alarmed but was honest, informed me that "this" was serious, ordered a STAT pelvic MRI & left the room a while to contact her colleagues b/c she would need to collaborate w/ a colorectal surgeon etc.
She returned after a while, gave me the contact info. after she spoke to this colorectal surgeon for the first time. The same week, I visited the colorectal surgeon (who is a mad genius, but the best). She inserted a tube accompanied with air (painful) & she saw that the GI Dr. who I initially visited missed the affected region on the colonoscopy!
She exclaimed, "He missed it, I see it!" Both of my new specialists worked diligently & promptly on my behalf. After painful biopsies & 3 separate surgeries in 2014 ( ovaries were left), I did receive a temporary ileostomy etc. Both surgeons were horrified at the extent of the disease. It ate through my intestines! My cul de sac of douglas was completely obliterated! Other masses found etc!
I begged to have my uterus removed & ovaries removed due to pain & my husband & I did not want children. At 32, I experienced this turmoil b/c treating physicians ignored me! Now it is 2016. I had my 4th surgery last month. Bilateral salpingo-oophorectomy was not accomplished as we had hoped. My right ovary was partially removed due to being fused by adhesions to my bowel, right ureter & a vessel.
I do not wish to take hormones & have not experienced hot flashes or mood swings. I am attempting natural supplements at present. Now at 35 years old, I have 2 presacral lesions that were too dangerous & complex to remove (another rare condition) due to endo. I have several adhesions remaining & per my surgeon my intestines are piled & stuck together like noodles.
My rectum was being pulled all the way over to the right b/c of adhesions ( thus the reason for reoccurring rectal pain). My former PCP never apologized or displayed compassion. However, my former gyn. did call & check in on me back in 2014.
I thank my God, my husband, my support team (all of you) & my two specialists & all who assisted them). I looked "fine" externally yet my insides revealed the reality. PLEASE LADIES, BE YOUR ON HEALTH ADVOCATE. WHEN ONE PHYSICIAN DOESN'T LISTEN, SEARCH OUT ANOTHER. I AM BEYOND FORTUNATE TO STILL BE ALIVE TODAY PER MY TREATING SPECIALISTS. If anyone knows of any surgeons specializing in presacral lesions/tumors, please leave a comment. Any suggestions are warmly welcomed. Continue to be positive & let's combat this together!!!