The first time I had sex, it was very painful.

Not surprising considering Ellen T. Johnson, an endometriosis advocate who suffered from the disease, wrote that:

“Pain during or sexual intercourse is a common symptom for women with endometriosis. The pain of painful intercourse has been described as sharp, stabbing, jabbing or a deep ache for the woman. It ranges in intensity from mild to excruciating. It may be felt during intercourse, for up to 24–48 hours after intercourse, or both.”

My first time was not just like most first times :  clumsy and awkward with a  little bit of pain.

For me, sex hurt so much that I let out a blood curling scream. This is back when I thought I still thought I was attractive  and men would want to sleep with me.

According to Mary Lou Ballweg’s Alternative Treatments for Endometriosis, published in 1995, a vast number of reports received by the Endometriosis Foundation attest to women becoming depressed, feeling misunderstood, feeling helpless and isolated.

I mentioned this to an obgyn  I once saw and she told me that sometimes when you aren’t with someone you love enough, it hurts, a sentiment at which makes the now older and wiser me cringe.

After my first time and other similar experiences, I wouldn’t have sex without drinks and drugs beforehand. When my live-in boyfriend of three years dumped me because I wasn’t having sex with him – there were other reasons to the break up, of course – I threw myself into graduate school and my career  telling myself I didn’t have time for a relationship.

Decades ago, endometriosis  was known as “the working women’s disease” or “the career women’s disease” because it was thought only to effect childless women in their 30s or 40s.

When my periods kept me in bed  – another symptom of endometriosis is the debilitating cramps and pelvic pain that come with menses – I started planning my social life around my menstrual cycle. I assumed that was my lot in life.

When my no longer early twenty something year old body couldn’t handle the drinks and the drugs anymore, I told myself I didn’t need to have sex to survive. And so, the endometriosis stewed in my insides ever since I started menstruating.

Endometriosis derives its name from the endometrium, the tissue that lines the uterus. Each month, this tissue normally builds up, then sheds during a woman’s menstrual cycle.

In women who have endometriosis, endometrial tissues grows outside the uterus in the form of lesions, implants, nodules, and cysts. These become inflamed and painful because, unlike endometrial tissue inside the uterus, this misplaced tissue has no way of leaving the body.

Over several years, one hundred forty four menstrual cycles, eight doctors, one Lupron shot, two trips to the ER and one nervous breakdown later, this is what I’ve learned:

Women’s Heath states that the emotional effects of endometriosis can be as serious, if not more so, than the physical symptoms.

Some of the most common feelings sufferers of endometriosis will go through include:

Frustration, since getting a diagnosis often takes time, leading to feelings of confusion and embarrassment about the condition. In addition, the pain and tiredness that often accompany endometriosis can lead to irritation.

Depression is also relatively common in women with endometriosis, not only due to the emotional roller coaster that the effects of the condition can cause, but also due to the effects of hormonal treatments. Aside from depression, these treatments can also lead to irritability and mood swings.

Women with endometriosis may also experience feelings of isolation, depending on the level of support they receive from their partners, families and friends.

Because endometriosis can also lead to infertility, many women may experience feelings of inadequacy and disappointment. In fact, it is not uncommon for women to need time to grieve for the life they had planned.)

Trust your Body:

We listen to our mothers, our sisters, our spouses, our friends, magazine articles, Oprah Winfrey, the TODAY show, the women on the View and web MD but the one thing we don’t pay much attention to is our body.

We treat our bodies horribly.  Women wear high heels all day and then complain about the pain even though a Harvard Study showed more women have foot pain and long care foot problems than men.

We feel terrible after a night of drinking – we wake up with massive headaches and spend entire days vomiting – but our behavior is not only applauded but celebrated in movies like “The Hangover.”

I knew there was something wrong with my body.  I was tired.  Not just sleepy but exhausted.  I was going to bed at 8pm and sleeping until 9am and I still couldn’t catch up on sleep.  When I got my period, I threw up for two days straight, my pain was so bad that I couldn’t leave bed and the amount of blood I would lose made me woozy just watching it flush down the toilet.  I felt like I was single handedly keeping Kotex in business.

I couldn’t wear tampons.  They hurt too much.  And I couldn’t wear skirts in fear that my pad would become too heavy or I would bleed down my leg.

As said in Morgan Spurlock’s “Supersize Me”, a documentary about nutrition in America, this country has ‘sick care’, not ‘health care’.  Not only is preventative health care not taught in our society, we fill ourselves with preservatives and non natural sugars and we don’t listen to our bodies until the pain becomes unbearable and doctors can’t fix it but can only prescribe pills to mask the pain we feel.

 Trust your Vagina:

Thanks to Sex and the City, women are encouraged to gather with their female friends and talk about sex.  But do we ever talk about our bodies and sex?

There’s rare discussion on vaginal dryness and on pelvic pain and while we feel open to talk about when HIS equipment doesn’t work (probably because it is such a relief it is not us), we hardly ever let on when our equipment has failed us.

Had I felt better about telling anyone – my friends, my mother, my doctor – that sex hurt so much for me, maybe I wouldn’t have kept such physical and emotional pain pent up inside me.

Once a roommate  referred to a girl we both disliked as ‘the type of girl who wears pads instead of tampons’.

My roommate, knowing I, too, wore pads, said “I mean I know you wear pads too but you know what I mean”.

After that, I  always told people I wore tampons.  I even bought them in the drug store thinking they somehow hid the box of maxi pads that I was also purchasing.

The lack of communication about women’s sexuality and women’s health is not just an issue for women suffering from a disease like endometriosis. It is the main cause of the lack of strong women’s health care.

Women suffer from auto immune diseases – diseases which cause chronic pain – three times more than men.

Even more pressing, it’s the reason that when women are sexually violated and attacked, they don’t want to talk about it or speak out against their attackers.  If women don’t know what feels good, if they blame themselves for the pain their body feels, the line between rape and unwanted sexual advances becomes dangerously blurry and thin.

 Trust your gut:

On New Years Day, 2010, I had a nervous breakdown.  I stayed in my bed all day and cried.  When my parents were supposed to come over for New Years Day Brunch, I couldn’t pick up the phone, couldn’t answer the door because I was paralyzed with depression.

All fall, I had been feeling depressed.  It was like the PMDD Premenstrual dysphoric disorder is a condition marked by severe depression symptoms, irritability, and tension between menstruation.  These symptoms are more severe than those seen with pms that I felt around my period wouldn’t go away even when I wasn’t bleeding.

I kept telling myself if I didn’t feel better soon, I would see a psychiatrist.  I had been to therapy in the past but this was different.  I knew myself, I knew my emotions.  I have always been neurotic, paranoid, anxious and depressed.  I had never been suicidal until then.  Something had gone wrong in my brain.  Between the suicidal worthless thoughts and my body’s physical fatigue, I felt broken.

A few weeks later, I would make an appointment at my primary physician’s office because I thought my belly button was infected.  This visit would spiral into the series of doctor’s offices which would eventually lead to a diagnosis of umbilical endometriosis  which is a fancy way of saying that the endo is so bad that my belly button bleeds when I have my period.  (Umbilical endometriosis effects .5-1% of endometriosis sufferers.)

I knew something was wrong but with  my history of depression and nothing on my obgyn records other than a laparascopic surgery twelve years ago (despite that I told every obgyn I saw what pain I was in when I got my period), no one would listen to me.

 Find a doctor who trusts you:

Everyone always says that you should find a mechanic that you trust to work on your car just like you pick out a doctor.

I would argue that it’s easier to find a mechanic that listens than it is to find a doctor who takes everything you say seriously.

I’m lucky that despite all the doctors I saw, I finally found one who I trust and who I can honestly say listens to me.

I remember when she told me that after surgery, she was going to send me to pelvic therapy.  I’ve never been so happy and so relieved to find out such a thing exists.

One obgyn (in the same practice where I had my first laparoscopic surgery) suggested I take Anaprox to help ease the pain of my menstrual cramps.

When I told her I had tried to take Anaprox and the pills were too big for me to swallow, she prescribed a substitute, saying it was a painkiller new to the market.

When I went to pick up the prescription, the pharmacist told me it had been taken off the market but she couldn’t tell me why.  She just said she was surprised someone would prescribe it with its history.  She did say she called the doctor to see if I should take something instead and my obgyn had her fill a prescription of Anaprox.

Another obgyn told me that since I wasn’t trying to have kids, and due to my age and the progression of my endometriosis probably couldn’t, that doctors weren’t going to spend time trying to help me.

We live in a capitalist society and I will never fully knock capitalism but it reminds us that health care in this country is a business.

Just like we’ve all found our favorite barista at the coffee shop down the street or the really nice salesperson at the store, it’s important to find a doctor you trust.  Because, in this case, it might just be a matter of life (or quality of life) and death.

(Prepared by Hayley Samuelson)

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Jennifer Leah Peck is a writer, teacher and arts administrator.  Her elephant journal blog focuses on women’s health and sexual issues based on her own experience with endometriosis.  As a fiction writer, she never thought she had any non fiction writing to share; now, she wishes she didn’t.  Jenn writes and lives in South Philadelphia with her dog, Alistair Peck.