Facing the Pain: My Battle with PCOS and Endometriosis
As featured in the latest 302 Health Magazine:
Curled up in the fetal position I would clutch my abdomen as the cramps grew worse. With each wave of nausea I would breathe in deeply and imagine the pain away. Even in my 14-year-old mind I knew there was something wrong. None of my other friends experienced their “monthly gifts” quite like I did. None of them required heating pads, constant pain medication, a day or two off school, and constant visits to the nurse’s office.
The school nurse knew me by name. Once a month she would expect to see me. “That time of the month again,” she would say as she would guide me towards the pink beds. I would lie there for an hour, feeling the cramps roar through me. The pain would radiate through my abdomen and around my back. It would make its way down my legs to my kneecaps. The nausea accompanying them would be unbearable.
Aside from the pain, Mother Nature would pick and choose when she decided to bring my monthly gift. Sometimes I would go three months with no guest appearances. Other times she would arrive for two months then disappear for four. There seemed to be no rhyme or reason for her visits.
All the while my doctors told me this was normal. They gave me painkillers and sent me on my way. At sixteen I saw my first obstetrician gynecologist. An older Indian gentleman with a hunchback and a walking stick he ordered a number of tests. He was the first person to give me some sort of diagnosis. Some sort of answer.
“You have cysts,” he said pointing to the ultrasound machine, “on your ovaries. They are harmless. They will go away.” He turned to my mother, “She needs to be put on birth control.”
All in My Head
Women are incredibly resilient to pain, and this often leads us to ignore vital warning signs. For years I tried to deal with the pain but I wanted my doctors to know this pain was real. I was passed from doctor to doctor, from gastroenterologist to urologist, from general practitioner to obstetrician gynecologist, and all the while they would run expensive tests and draw buckets of blood to no avail. Jumping from birth control pill to birth control pill I would navigate the mood swings like a ship on a turbulent sea. With each pill there would be a slew of new, strange symptoms like hair loss, acne, and weight gain. By the age of 27 I was diagnosed with Irritable Bowel Syndrome (a disorder caused by anxiety). But my brigade of doctors had slapped me with yet another diagnosis: hypochondriac. Was it really all in my head?
“Historically, until the 1980’s, there were chapters in gynecological books on psychosomatic gynecology,” explains Dr. Tamer Seckin, a world renowned laparoscopic surgeon and President and Medical Director of the Endometriosis Foundation of America. “This was all about pain and how women make up pain, going back to [Sigmund] Freud and the issue of secondary pain or projecting other issues. The myths and taboos about menstruation and the way doctors, even female doctors, treat a female patient when they come in with pain – not only painful periods but other elements of pain – were never addressed.”
“It’s not in your head, it’s in your pelvis,” comments Heather C. Guidone, Surgical Program Director of the Center for Endometriosis Care in Atlanta, Georgia. “It is very frustrating to watch women go through this over the years and believe there is nothing wrong. But where there is smoke there is fire and excision surgery can be extremely beneficial. We are teaching our girls that it is ok to suffer; it is ok to be in pain. And that’s not right.”
Lucky for me I had the foresight to say, something is wrong and I need to do something about it. I had to be my own detective. A quick Google search for ‘reproductive specialist’ brought up a website for Reproductive Associates of Delaware, where I spoke to Dr. Rhonda Wright. “Tell me about the pain,” she asked. “What other symptoms do you have?” Not only was she listening and writing things down but she seemed to understand completely.
After some more lab tests I was delivered a firm diagnosis: Polycystic Ovarian Syndrome, also known as PCOS. “It’s really a misnomer because the problem doesn’t arise from your cysts,” said Dr. Wright, “but it arises from an imbalance of hormones.” On top of the PCOS Dr. Wright suspected I had endometriosis. She made an appointment for me to see their Medical Director of Reproductive Surgery: Dr. Barbara McGuirk.
Into the Vortex
Polycystic…what? Endometri…huh? I had to say the words over and over
on the car ride home. I felt like I was being sucked into a black hole never to come out again.
Lying in bed that night I looked online to see how many of us were out there: women with PCOS, or or women with endometriosis. I was shocked by the results. There were millions of women just like me, millions of women in pain, frightened, and alone.
One such woman who was spreading the word about PCOS was Amy Medling, blogger, health coach, and founder of PCOS Diva, a website for women with PCOS. “I want women with PCOS to know that PCOS isn’t an end of the world diagnosis. It is an opportunity to live life like a diva. By taking control of your health and making a commitment to consistent lifestyle change, you can successfully manage PCOS.” Medling suggests women with PCOS eat a gluten-free, dairy-free, and soy-free diet high in vegetables and low in fat. She also recommends exercise, meditation and moving from a negative mindset to a positive one.
Making lifestyle changes are important but are difficult when you are not in the right frame of mind. I didn’t know how to take control and I didn’t know where to start. I felt overwhelmed. After talking to Dr. McGuirk I decided to go ahead with the laparoscopic surgery. I figured I would tackle the endometriosis first and then see what I could do about that other disease with the funny name.
The surgery day came and went and then came a period of rest and healing. I was thankful to have such a great surgeon who took time to explain everything to me and listen to my concerns. Dr. McGuirk found endometriosis lesions on my uterus, bladder, and intestines, which would explain my digestive problems. I realized how important a surgery like this really was.
“In the future I want this kind of surgery to be something everyone has the right to,” states Dr. Seckin from the Endometriosis Foundation of America, an organization that is fighting for that right and spreading awareness. “Just as people have the right to vote, the right to carry a child– it should be a right to have your endometriosis properly treated.”
Speaking to other women I was shocked by just how many women had no idea about endometriosis, or that their pain can be treated. Most of them didn’t know about Polycystic Ovarian Syndrome either, even though they exhibited all the symptoms. Right then and there I made it my mission to get on my soap box and start making a change.
Back To Myself
Sometimes when your body is sick your mind becomes sick too. After the surgery, endless doctor’s visits, and nights of excruciating pain, I found myself wallowing in a very dark place. I wondered why this was happening to me. What had I done to deserve this?
Taking to my twitter account I was comforted to speak with other PCOS divas and endo sisters. Some of these ladies had been through ten to fifteen surgeries, suffered every day in excruciating pain, relied on extremely strong narcotic pain killers, and lived through the anguish of multiple miscarriages. How did I have the right to complain?
As the wounds from surgery began to heal I saw a glimmer of hope. I realized the importance of keeping a positive frame of mind and I started, slowly, to pull myself out that black hole and get back out there into the light.
With the help of PCOS Diva I managed my symptoms by changing my diet and curbing old eating habits. I began to actively participate in yoga and exercise programs. I found that yoga really helped both my PCOS and endometriosis symptoms.
Allanah Law, yoga teacher, therapist, and founder of Yoga Yin, a yoga center in Australia that focuses on women’s health, understands first hand the pain that accompanies endometriosis. After years of suffering through the pain going through surgeries and a daily combination of Codeine and Naprogesic, she decided to take up yoga. It was the best decision she ever made.
“Within the first five years of practicing yoga regularly, the pain had dulled from severe to almost non-existent. I also began taking Chinese herbs and by 32, I was pregnant with my first child,” she explains. “In yoga we focus on calming the mind and “letting go” of sensation in the body… Yoga does not necessarily heal your pain or disease, but it can change the way you think about it.”
Law says women with PCOS or endometriosis should certainly give yoga a try: “Both endometriosis and PCOS are hormonal issues. PCOS is a disease where androgens are increased and progesterone is lowered, leading to an increase in testosterone produced in the body. Endometriosis is aggravated by and feeds excessive estrogen. What yoga does is re-balance the body’s endocrine system, bringing estrogen, progesterone and testosterone into balance.”
As yoga became part of my fitness routine, I started to feel a change in my body, but most importantly my mind. The more I examined the foods I ate, the better I felt.
“I always tell my patients don’t eat anything your grandmother wouldn’t eat,” says Dr. McGuirk. “If you can’t pronounce the ingredients then you should definitely not eat it.”
In time I began to see a light at the end of the tunnel. Now I understood what Amy Medling meant about keeping a positive frame of mind and what Allanah Law meant about “letting go.” I started to let go and look up and from that curled fetal position I found my way up and out the door.
Today I feel healthier than I have in many years and I just take each day as it comes. There will always be days that are worse than others but I am finally ready to face the pain and not let it control my life. I’m thankful for this journey, even with all the trials and tribulations, because it made me who I am today. And I hope for a world where women’s reproductive health can finally be given the attention it deserves. Until then, I’ll be out there in the sun.
A painful gynecological condition occurring when tissues lining the uterus break free and spread to the surfaces of surrounding organs. The lesions grow and bleed in spots all over your body, most commonly on the ovaries, bowels, and bladder.
What to Look Out For
- Chronic pelvic pain
- Lower back pain
- Digestive problems
- Urinary problems
- Painful sex
- Irregular periods
Endo by the Numbers
- 8 the average years before a woman is accurately diagnosed with endometriosis
- 65% the percentage of women with endometriosis who are misdiagnosed
- 1 in 6 the number of American women diagnosed with endometriosis annually – Delaware has comparable statistics (according to the Delaware Health Statistics Center)
- 176 million – the number of women with endometriosis worldwide
- $22 billion – the associated cost of the disease annually
Laparoscopic and excision surgery: minimally invasive surgery in which your surgeon inserts a camera through the abdomen to check for endometriosis lesions. This should be performed by a qualified surgeon.
Polycystic Ovarian Syndrome (PCOS)
An endocrine disorder that is thought to be genetic, PCOS causes an imbalance of hormones and, on occasion, the formation of small cysts on the ovaries. PCOS can cause problems with normal ovulation.
What to look for
- Weight gain
- Thinning hair
- Irregular periods
PCOS By the Numbers
- 1 in 15 the number of women with PCOS worldwide
- 2 – Type 2 diabetes is the most common coexisting condition in women with PCOS
- 6.5 million the number of American women who suffer from infertility
- Women with PCOS are at 4 to 7 times higher risk of heart attack
- Eating healthy small meals 4 to 6 times a day
- Not smoking
- Seeking fertility treatment, if needed