This post is an honest reflection on my personal journey with ‘feminine trouble’ of the reproductive system; therefore, it requires terminology of human anatomy, bodily functions, and medical conditions/procedures.
“Feminine Trouble” will be a multiple post series about my eight year journey of chronic pain due to Endometriosis, a Uterine Fibroid (tumor), Pelvic Congestion, Pelvic Floor Dysfunction, and Polycystic Ovarian Syndrome (PCOS).
- “What the Hell?” (part 1) is an overview of the diagnosis, a brief description of the associated pain, and the medical treatments and procedures endured.
- “Disruptive, Destructive Norm” (part 2) will be an exploration of the associated pain and its affect on my physical and mental well-being.
- “Hysterectomy & the Aftermath” (part 3) will primarily explore how the decision for a hysterectomy has affected my physical, mental, and relational well-being.
Before the Beginning
Although this ‘feminine trouble’ begun approximately 17 years ago (2001), it is essential to begin beforehand in order to paint the entire picture.
Similar to friends and the average female, I begun menstruation in junior high school. Although I had friends who regularly complained about their cycles due to length, their heavy flow, cramps and additional discomfort with their periods, I struggled to empathize.
Why? I was LUCKY!
My average period was approximately 3 days in length, which was primarily ‘spotting’ essentially without cramps or physical discomfort… until one month.
And It All Changed…
It all changed LITERALLY one month during my sophomore year (age 15).
I distinctively recall it was a weekend. I had a friend who had spent the night, but in the morning I woke up nauseous with (stomach) cramps and begun vomiting. I was convinced that the cause was food poisoning and the start of my period (abnormally heavy) was coincidence.
Then the next month, I begun my period with an abnormally heavy flow, cramps, nausea, and vomiting. Admittedly, I was confused and remained uncertain about the correlation.
My mama was 24 years old at the time of her hysterectomy and connected the dots. She phoned our family doctor, whose office argued with my mama that it was normal considering the drastic hormone changes expected and suggested waiting 6-12 months before becoming concerned or scheduling an appointment.
Then the third month was a repeat. Again, my mama phoned the doctor’s office and had the same argument. So, my mama (God bless her) phoned and made an appointment directly with the OB/GYN office.
My mama and I sat in the OB/GYN exam room while the Nurse Practitioner was recording our family history…
Mama: I had a hysterectomy at 24…
Mama: Yes. How did you know?
Nurse: I believe she has Endometriosis.
Endometriosis has recently gained a spotlight due to medical trials for an experimental treatment, but the general public remains unaware or lacks an understanding of it. Endometriosis is a medical condition that affects 1 in 10 women.
During the monthly menstrual cycle, women produce an endometrial lining within the uterus that multiples and thickens in preparation for a fertilized egg. If a fertilized egg does not become attached to the endometrial lining that month, it is shred through menstruation.
Endometriosis is a condition that the endometrial lining is present, multiples, and attempts to shred itself outside of the uterus. This process results in scar tissue and manifests in heavy menstruation, severe cramps, pain, and painful intercourse.
Addressing ‘Feminine Troubles’ and Its Progression
The OB/GYN prescribed birth control, which is a common treatment to regulate the hormone levels and decrease the production of that endometrial lining.
During the next 8 years, I would be prescribed regular low-dosage birth control pills, the ‘shot’, and the seasonal birth control bills (quarterly menstruation).
Unfortunately, the abnormally heavy menstruation accompanied by the cramps, pain, nausea, and vomiting not only continued but worsened. Additionally, the issues of cramps, pain, nausea, and vomiting were not limited to my period but begun to manifest a week beforehand, and then it would continue to linger for a week afterwards, until these symptoms were EVERY SINGLE DAY.
Obviously, the OB/GYN was also tasked with providing pain management. Originally I was prescribed a strong Ibuprofen, which quickly proved to be ineffective. Then, I was prescribed Tylenol 3 (aka Tylenol with Codeine).
Shortly thereafter, I was prescribed Vicodin that I required virtually daily for 8 years.
Approximately six months after the initial OB/GYN appointment, at age 16, I had a laparoscopy. A laparoscopy is a medical operation where the surgeon inserts a camera (and laser) into the abdomen/pelvic through a small incision. It is considered ‘exploratory’ and is required for a confirmed diagnosis of endometriosis. During the operation, the surgeon is able to remove the endometrial cells and associated scar tissue.
I had a confirmed diagnosis of endometriosis.
BUT, shortly thereafter the pain returned.
Approximately six months after the original laparoscopy, I had another laparoscopy but the surgeon did not find endometriosis.
The surgeon did, however, diagnosis me with two additional “feminine trouble” medical conditions: a uterine fibroid and pelvic congestion.
Uterine fibroid tumors are non-cancerous tumors that may develop inside, within the muscular wall, or attached to the outside of the uterus. If attached to the interior or exterior of the uterus, these can be easily removed. However, I can be challenging…so my fibroid tumor was within the muscular wall and therefore could not be removed. This fibroid tumor would cause a “full” and “heavy” sensation as though I was carrying a 10 lb. bowling ball within my abdomen which was uncomfortable and caused pain associated with eating.
Pelvic congestion is varicose veins (“spider veins“) and engorged blood vessels (imagine migraine) in the abdomen/pelvic, which can surround the uterus, tubes, and ovaries. The Pelvic Congestion was a consistent dull cramping pain that I would describe as my entire reproductive system attempting to fit within a small 1 inch cube. At the time, there was no treatment.
One year later, at age 17, I had my third laparoscopy (Yes, that is 3 within 18 months).
During this third laparoscopy, the surgeon noted the fibroid tumor, the pelvic congestion, and endometriosis (which was removed). However, the surgeon did have another discovery…
The uterus is a ‘hard muscle’ and therefore is expected to hold its shape. Yet, a small surgical tool was leaned against my uterus and it ‘dented’ in returning to its normal shape once the pressure of the small surgical tool was removed.
WHAT? This indicted that in addition to the endometriosis on the exterior of my uterus, the endometrial glands within the uterus was over-producing the endometrial wall and weakening my uterus from within… in essence, the uterus was being attacked internally and externally by endometrial cells.
Gonadotropin-Releasing Hormone (Gn-RH)
After the third laparoscopy, I was prescribed a Gn-RH medication that derives the body of ovarian-stimulating hormones… thus, causing the person to experience menopause in an effort to decrease the production of endometriosis. The surgeon’s intention was that this would prevent (or at least delay) the redevelopment of endometriosis.
Therefore, as a high school senior (age 17) I went through menopause for six months. I experienced the mood swings, the hot flashes, and the night sweats.
False Hope and Facing Reality…
The surgeon and a later pelvic pain specialist would unsuccessfully attempt to convince me that I would still be able to conceive and carry a fetus to term. Although I appreciate their desire to offer hope, I am a realist.
Thus, in summary, at age 17 I was aware that I would never be able to conceive and give birth to a child. It was a difficult reality to face despite lacking an intense sense of vocation/call to motherhood.
Polycystic Ovarian Syndrome (PCOS)…
After the third laparoscopy, I continued to have regular doctor appointments with the OB/GYN because I continued to have the chronic pain associated with the endometriosis, fibroid tumor, the pelvic congestion, AND ovarian cysts.
After an ultra-sound that included multiple cysts on the ovary, the OB/GYN suspected that I may have polycystic ovarian syndrome (PCOS). PCOS is a medical condition associated with higher (but normal range) levels of testosterone, which results in the development of multiple cysts on an ovary at one time. This higher level of testosterone often manifests with acne, undesired facial hair, and weight-gain/obesity, which I fortunately did not. Similar to endometriosis, PCOS affects 1 in 10 women.
The ordered blood work, however, did confirm PCOS.
Pelvic Floor Dysfunction & Therapy
The human body is quite amazing. If a muscle is injured, the muscular system engages a protective response known as muscle guarding. This protective response is the tightening of surrounding muscles to prevent further damage.
Unfortunately, the collective of my “feminine troubles” (at age 20) had resulted in the entirety of my core to engage this protective response for far too long. This resulted in my core and pelvic floor muscles having lost significant strength, also known as pelvic floor dysfunction that can manifest with multiple symptoms including difficulty with sexual intercourse and the use of tampons.
I was prescribed physical therapy with a therapist that specialized in pelvic floor muscles. I will not go into particular detail about the therapy but the care plan included a nightly dose of muscle relaxers, external exercises, and internal therapy.
The Pelvic Pain Specialist
The OB/GYN referred me to a pelvic pain specialist, who had developed a procedure via laparoscopy to treat pelvic congestion.
During initial appointments, the specialist would review with his patient each diagnosis and treatment. He was particularly intrigued with the collection of “Feminine Troubles” because in theory these conditions would not co-exist due to their indication of different hormonal imbalances. He noted that instead of the low-dose birth control I would require the high-dose from decades past that would over-haul and reset my hormone levels (these are no longer in production due to blood clot risks).
Ultimately, the fourth laparoscopy was scheduled (at age 21).
The pelvic pain specialist performed the laparoscopy treating endometriosis and pelvic congestion, while the fibroid tumor and PCOS remained untreated surgically.
After the laparoscopy, I again had Gn-RH therapy to derive my body of estrogen (menopause again) for six months to prevent the re-development of endometrosis. Fortunately, the specialist did prescribe mild hormone replacement therapy to ease the mood swings, hot flashes, and night sweats.
After the laparoscopy and Gn-RH therapy I continued to experience the discomfort of the full and heavy sensation (fibroid tumor) and the pain of multiple ovarian cysts (PCOS). Thus, the OB/GYN referred me to the pelvic pain specialist again.
The specialist was convinced that the pelvic congestion had returned, but he recently had developed an in-office procedure for treatment. However, I was equally convinced that is was the fibroid tumor that could only be removed with the removal of the uterus (hysterectomy).
The specialist was adamant that the fibroid tumor was “too small” to cause discomfort, but it felt as though I consistently held a 10 lb. bowling ball within my abdomen….
So, we made a deal.
- If a MRI with contrast diagnosed pelvic congestion, the specialist would perform the in-office procedure or laparoscopy depending on the severity.
- If a MRI with contrast was deemed ‘normal’, the specialist would perform a hysterectomy (removal of the uterus).
The MRI was “normal” and the hysterectomy was scheduled December 2009 (at age 23).