My 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, backache/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, infertility/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 local 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 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 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 – not so much as an ibuprofen required! 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/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/location of my pain was 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 center of pelvis, backache/leg pain, painful intercourse or pain associated with sexual activity, painful pelvic exams, pain with full bladder/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 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! The following resources were hugely beneficial to me during my journey: www.centerforendo.com, FB: CenterforEndometriosisCare, www.endocenter.org, FB: Endometriosis Research Center, www.endometriosis.org

Words of Advice for Us: My number one piece of advice to anyone struggling is to research the difference in surgical techniques – ablating/cauterizing “burning it off” the lesions has a VERY high recurrence rate. Excision, on the other hand, has been shown to be much more effective in long term relief. If your doctor tells you that you will need yearly surgery and indefinite hormonal suppression, know that there ARE other options. Consider seeking out an excision surgeon who solely performs endometriosis surgery. The average OB/GYN focuses on pap smears, prenatal care, delivering babies, etc – most do not have the time required to devote to developing the skills needed to perform expert excision surgery.

The Last Word: You’re not alone. There is HOPE.

If you wish to contact Rebecca, you can follow her blog here.

Thank you, Rebecca, for being so bold to share your journey and on video even!  May your story inspire countless others to continue their fight.

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And if YOU would like to share your story, please let me know.  The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.

Yours, Lisa.