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Rebecca’s Story (Endometriosis, Adenomyosis)

Rebecca's Story Endometriosis AdenomyosisMy Journey with Endometriosis & Adenomyosis
by Rebecca L. Gibson

I was always healthy and active in sports while growing up. In 2008, I married my childhood sweetheart, and we began our life together.

Everything changed in 2009 when I developed symptoms of endometriosis. Endometriosis (en-doh-mee-tree-oh-sis) is an extremely painful condition where tissue resembling–-but not the same as-–the endometrium (lining of the uterus) is found elsewhere in the body, outside the womb. Although symptoms may indicate endometriosis, an official diagnosis can only be made through surgery. Common symptoms include, but are not limited to, pelvic pain apart from menses, debilitating menstrual pain, backaches/leg pain, painful intercourse or pain associated with sexual activity, painful bowel movements, fatigue, bloating, constipation/diarrhea which may worsen during menses, pain with exercise, painful pelvic exams, painful urination, sciatic pain, and infertility or pregnancy loss.

Treatment is performed at the time of diagnosis. Most OB/GYNs attempt to surgically remove the disease using a method called ablation or otherwise “burning it off.” Unfortunately, this option is superficial at best, as it leaves deep disease behind. ACOG states 40-80% of patients will have a recurrence within 2 years following this method of treatment. Patients may also be prescribed hormonal medications to suppress remaining disease, but this is merely a ‘band aid’ approach, and symptoms typically return as soon as the use of hormones is discontinued. Hysterectomy is also sometimes performed to ‘treat’ endometriosis, but this may actually be unnecessary and needless in many cases. While there is no universal cure for the disease, surgery with a Minimally Invasive Gynecologic Surgeon with a dedicated focus on endometriosis who can perform Laparoscopic Excision-–which “cuts out” the disease from all areas-–has been shown to be far more effective, often preserving the patient’s reproductive organs in the process.

Despite dietary changes, herbal supplements, chiropractic adjustments, and massage visits, my symptoms and pain increased every month, and my health deteriorated quickly. I experienced 24/7 debilitating pain. My life as I knew it ceased to exist, and by the beginning of 2010, most of my time was spent curled up in the fetal position in bed.

In March 2010, I agreed with my local gynecologist to try birth control pills in an effort to lessen my symptoms. While I experienced some relief, many symptoms persisted, and my health remained in very poor condition. My gynecologist was honest with me about the limitations and high recurrence rates of the surgery that she could offer. I made the decision to instead travel to an advanced surgeon in Atlanta, GA, and on June 24, 2010, I was surgically diagnosed with endometriosis. An expert specialist surgeon, Dr. Ken Sinervo, excised endometriosis from multiple areas in my pelvis and performed an appendectomy (removal of the appendix). The surgery completely resolved my endometriosis symptoms, and my quality of life improved dramatically.

Post-surgery, I was able to discontinue the birth control pills. My periods were light and easy and did not require so much as an ibuprofen! After losing almost a year of my life, I was pain-free! In August 2011, I discovered that I was pregnant, and in April 2012, I gave birth to a beautiful baby girl. I delivered my daughter naturally with no pain medication. The pain of labor paled in comparison to the endo pain I had dealt with years before. Indeed, endometriosis is more painful than un-medicated labor and delivery for many individuals. After the birth of my daughter, my quality of life remained excellent. My periods continued to be light, easy, and pain-free for years.

In 2014, I developed severe pelvic pain again, but this time, the type and location of my pain were not consistent with endometriosis. My symptoms pointed to a different culprit, and my doctors determined that I had a condition called Adenomyosis. Adenomyosis (ad-uh-no-my-O-sis) occurs when endometrial tissue is found within the muscular lining of the uterus, or myometrium. Once called ‘endometriosis interna,’ Adenomyosis is not actually the same as endometriosis. Symptoms of adenomyosis include heavy and often prolonged menses, clotting during menstruation, spotting or bleeding between periods, midline uterine pain consistent with labor contractions, feeling of heavy “pressure” (described as a “burning bowling ball”) in the center of the pelvis, backaches/leg pain, painful intercourse or pain associated with sexual activity, painful pelvic exams, and pain with full bladder and urination. For women who experience severe discomfort from adenomyosis, certain treatments can help, but hysterectomy is the only cure. Note that while a hysterectomy is a cure for adenomyosis, it is NOT a cure for endometriosis.

On December 30, 2014, nearly 5 years after I underwent expert excision surgery for my endometriosis, I returned for a total hysterectomy (uterus and cervix removed) to treat adenomyosis.
THERE WAS NO ENDOMETRIOSIS FOUND ANYWHERE, only adenomyosis as had previously been suspected. I retained both of my ovaries. Thanks to the early detection by my local gynecologist and the expert surgical skills of my endometriosis surgeon, as of June 2015, I am now 5 years endometriosis-free and 6 months adenomyosis-free!

If you or someone you know is battling Endometriosis and/or Adenomyosis, know that you are not alone. There is hope. My number one piece of advice to anyone struggling is to seek out an excision surgeon who solely performs endometriosis and adenomyosis surgery. The average OB/GYN focuses on pap smears, prenatal care, delivering babies, etc., and most do not have the time required to devote to developing the skills needed to perform expert excision surgery.

Rebecca
Alabama
Submitted 08/03/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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3 comments

  1. What the medics won’t tell you is that endometriosis and adenosis is secondary to consumptiion of animal dairies. the proteins of animal milks cause many diseases in the human: adenomosis and endometriosis are high on the list. Avoid animal milks and the possibility you can prevent a reoccurrence is strong. Continue using animal milks (especially as prepared in America with 109 hormones and antibiotics in each bite) and the possibility of a reoccurence is strong.

    Blessings! Sunny

  2. Thank you Rebecca Alabama. I have been diagnosed with both diseases and it is a nightmare. I had the ablation done because my insurance won’t approve a hysterectomy until all options have been exhausted which is ridiculous because every surgery is costing me money. I have one ovary becauseyvfriend found a cyst the size of a large jawbreaker. I suffer bloating, lower back pain, painful intercourse, pain n my hips joints and knees and severe Pain During ovulation and menstrual cycle. The pain dog led me over and lasts several hours. Sometimes the pain just hits me even when I not menstruating. Nevertheless there is always some kind of pain everyday. It feels a normal part of my life.

    • Which disease causes ovulation pain, and why does it hurt? I have been diagnosed with Adeno and Endosalpingiosis and my ovulation pain feels like labor pains and burning. I feel it in my hips and rectum and it makes it hard to walk. I’m so frustrated.

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