My Journey with Endometriosis & Adenomyosis

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 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 – 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 – most do not have the time required to devote to developing the skills needed to perform expert excision surgery.


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

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About ducksinarow55

Wife. Mommy. Endometriosis/Adenomyosis/Bell's Palsy warrior. Advocate for advanced excision surgery as the gold standard treatment for endometriosis. My posts will include my personal journey with both endometriosis and adenomyosis, as well as links to resources by reputable endometriosis/adenomyosis sites (ie. Endometriosis Research Center, World Endometriosis Research Foundation, etc). Follow me on twitter - twitter.com/rlgibson
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8 Responses to My Journey with Endometriosis & Adenomyosis

  1. angelpie12 says:

    Hi, I’ve just read your blog. You have given me hope that I will one day be able to have children too 🙂 I would like to follow your story and please read my blog too! Thanks
    Melanie, England UK
    http://www.angelpiesite.wordpress.com
    Twitter- angel_pie1984

    Like

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  3. Thank you for sharing the additional information about adenomyosis as well. I’m glad you are recovering well and congrats on your baby girl! 🙂

    Like

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  7. sush says:

    Hi my name is Sushma. I am also suffering with adenomyosis . I met doctors they r suggesting me to go for surgery. But my situation is diff i dont have kids and my age is also under 35.
    We moved to TX recently. If anyone knows good doctor in TX(Austin) please suggest me. Its really urgent day by day my pain is going high.
    Please help me.

    Like

    • Hi Sushma, my recommendation is to seek out a group on facebook called Nancy’s Nook Endometriosis Education and Discussion. They are an endo group – not an adeno group – however, they maintain a listing by area of doctors familiar with both conditions. Might give you some ideas on doctors to consider. In addition, I invite you to join Adenomyosis Support on Facebook as well – lots of support there from women who share your diagnosis. Best wishes!!

      Like

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