The pain is excruciating.  It had started 12 hours earlier, a ball of agony on my right side that radiates across my abdomen.  The 3 doses of Advil has not dulled it in the slightest.  Nor have the laxatives.  What the fuck is wrong with me?  Is this was appendicitis feels like?  My brother’s girlfriend drives me to the ER.  Apparently, my mother has better things to do today.  Probably getting drunk.

On the drive to the hospital, the pain starts to loosen its grasp a bit.  I sit in the waiting room for over an hour, and then wait some more once they get me into a room.  By the time the doctor finally sees me, I’m almost fine.  Has the Advil finally kicked in?  Hopefully that doesn’t mean the laxatives are about to follow.

They take blood.  They ask me for a urine sample, which I am barely able to provide.  They give me a pelvic exam.  I’m 15 years old.  I’ve never had a gynecological exam before, and now a man I just met is sticking his fingers into my vagina.  What the fuck?

The blood and urine tests come back fine.  He tells me I’m just ovulating.  The severe pain was just from the egg sack bursting.  I have my doubts.  I have ovulated before.  It never felt like this.  He tells me I should be fine.  I go home.  And I am fine for the rest of the weekend.  I guess my mother was right not to be too concerned.

On Monday morning, I start to feel queasy on the bus ride to school.  I skip home room, and go straight to the nurses office.  Where I immediately throw up my breakfast.  And then the pain comes back in full force.  They call my mother, who comes to get me.  She calls my regular doctor who can’t see me until the next day.  I take more Advil and more laxatives.  My mother does not approve, but frankly, I don’t give a fuck.  I’m in the worst pain I have ever felt in my life.  And it worked the first time.

But my mother has nothing to fear, as I quickly puke everything back up.  I can keep nothing down, not even water.  I spend the entire night sitting on the floor curled into a ball with my forehead resting on the edge of my bed, rocking myself back and forth.  It is the only thing that dulls the pain.  At times, it dulls it to the point were I can actually fall asleep.  But when I fall asleep, I stop rocking, and the pain comes surging back, which wakes me up and I start rocking again.  The cycle continues until I have to get ready to leave the next morning.

My regular doctor also performs a pelvic exam.  Wonderful.  At least this is a man I know and trust.  It still would have been embarrassing, if not for the intolerable pain that comes when he presses on my abdomen obliterating every other thought in my mind.  He says he can feel a large mass on my right ovary.  He says he doesn’t know how the hospital could have missed it.  He says he wants to take an x-ray.  Don’t they usually block your reproductive organs when they take an x-ray?

The x-ray shows that I do, indeed, have a large mass on my right ovary.  A mass about the size of a grapefruit.  I’m a little chubby, so there is a little extra padding on my abdomen, but, still, I would think a grapefruit where a kiwi should be would be noticeable.  I immediately do not trust the hospital.

My doctor says he wants to call an ambulance to bring me to the hospital.  To my relief, it is not the same hospital.  My mother wants to drive me, but my doctor insists.  The ambulance arrives.  I’m in too much pain to even think about what is happening to me as I’m strapped to the gurney.  All I want is relief.

My mother follows the ambulance as they hook me to the IVs and take my vitals.  When we get to the hospital, they admit me and bring me to my room.  My mother is joined shortly by my dad.  The doctor comes in and tells us that I am to be prepped for surgery to remove the mass immediately.  Withing 25 minutes of arriving at the hospital, I’m on my way to the OR.  At no time do I wonder why this is being treated as such an emergency.  I just want the pain to stop.

After the surgery, they tell me they not only removed the mass, but also had to take the ovary.  The emergency was that the mass, a cyst, had caused torsion.  The cyst was so large that it had twisted around in my abdomen, cutting off the blood supply to my ovary.  My ovary was atrophying.  They could not save it.

I have 9 staples in my abdomen, and a 10 inch scar.  The scar is thankfully low enough that, should I ever want to wear a bikini (hahaha) that it should not show.  As long as said bikini is wide enough.  It is a 10 inch scar.

I am on a machine that will administer morphine when I press a button.  The nurses tell me that if I press the button too often, it will cut me off.  Scared that I will be in immense pain and not be able to get relief, coupled with having recently read To Kill a Mocking Bird, I am terrified to use the morphine unless absolutely necessary.

I’m in the hospital for 4 days, bed bound for the first 2.  They wake me up a couple times every night to make me cough, so I don’t develop pneumonia.  It hurts so much to cough, I’m willing to take that risk, but they insist.  On the third night, having had the catheter removed (holy fucking shit), I get up to pee.  They don’t make me cough.  If only this had been an option on the first 2 nights.  I hobble around the hospital like a 90 year old woman for the last 2 days.  On the morning of the last day, they remove the staples, which is less painful than the coughing.  They also remove my IV, which is fine with me. It was starting to burn, and I really don’t want to end up like Mrs. Dubose.  I find out that I could have used at least 5 times the amount of morphine I did without being cut off or becoming an addict.  Now they tell me.

They tell me I can finally take a shower.  I lean my head back to wet my hair and almost fall over backwards (thank god for the metal handles lining the shower).  They have severed all my abdominal muscles.  It would have been nice to know this ahead of time.  Perhaps they assumed I knew.  It does explain the hunched old lady walk.  It will be months before I can stand fully erect again.  Or safely lean my head back in the shower.

Before we check out, the surgeon tells us that I need to make an appointment to see him for a follow up in 4 weeks.  I’m not allowed to go back to school for 4 weeks, and not allowed to participate in any physical activity for 8.

At the 2 week mark, I think I’m feeling strong enough to try to go back to school anyway.  I make it through half the day before the fatigue sets in.  Walking around and sitting up is much more work than it seemed to be.  I don’t go back for the remaining 2 weeks.

After 3 1/2 weeks, I call the surgeon’s office to make an appointment.  His receptionist snidely tells me that I was supposed to call the week I got out of the hospital.  They do not have any appointments for at least 3 weeks.  I take the first one available, and then never go.  Bitch.

At my regular doctor, they tell me I need to start having a gynecological check up every year, even though I’m not 18 or sexually active.  Awesome.  They put me on birth control pills.  It is supposed to keep me from ovulating, which will keep me from developing another cyst.  The pills make me gain 20lbs, but I’m happy to keep my one remaining ovary functioning.  I stay on them for years.

It will be years before anyone tells me what is wrong with me.  I decide to go to a Gynecologist at around 21 because I am terrified that I am going to lose my other ovary any time I feel an odd pain on my left side.  I don’t trust that my GP is knowledgeable enough about what is wrong with me.  And I am right.  On my first visit to the OBGYN, she gives it a name:  Polycystic Ovarian Syndrome or PCOS.  And tells me that the birth control pills I’ve been on do not work all that well at preventing cysts from PCOS.  It isn’t entirely my GPs fault that they don’t know what was wrong with me.  In teenagers, it is hard to detect.  The symptoms vary for each person (which in itself makes it harder to diagnose), but can include hirsutism (male pattern body hair), irregular menstruation, being overweight and migraines. I don’t have any abnormal body hair, I have always been overweight, I have headaches, but not migraines, and irregular menstruation is normal in teenagers.  But ovarian cysts are a big clue, and they still never said a word about PCOS, not even that it was a possibility.  I would later learn that the real problem in diagnosis is that GPs don’t know enough about it.  I would also later learn that Gynecologists only treat the gynecological aspects of it.  And there is so much more to it than that.

I’m 25 when we get married.  We decide to start trying for kids immediately, knowing that it wasn’t going to be so easy for us.  We had been having unprotected sex for a couple years, and nothing has ever happened.  My periods are still wildly irregular (I once went 6 months without one, and once had a 3 months stretch of 3 weeks of bleeding followed by a week without).  And, I only have one ovary.  Even with all that, the OBGYN says we needed to try for 6 months before they will talk to us about infertility treatment.

So, I go to Border’s and start combing through the infertility books.  Most mention only a blurb on PCOS.  So I turn to Amazon, I find PCOS: Polycystic Ovary Syndrome : The Hidden Epidemic.  It’s written by a Reproductive Endocrinologist (a fertility doctor).  This is exactly what I’ve been looking for.

I am appalled at what has not been relayed to me by the doctors I depend on.  On top of the fertility issues I’m facing, there are major health issues that come along with PCOS.  Women with PCOS are more likely to face high cholesterol, diabetes and heart disease.  The book also explains exactly what is going on in my body, why I don’t have regular periods, why I ended up with a huge cyst, why I may end up with another, why getting pregnant on my own will be a struggle at best.  It explains that insulin resistance is the underlying cause of all these issues, but doctors still don’t know what causes the insulin resistance.  It explains that there are other things we can do, other drugs I can take besides birth control pills, to not only reduce my chances of infertility, but also decrease the chance of the other health risks.  It also explains that women with PCOS are more likely to develop uterine, cervical and ovarian cancer which apparently has something to do with those organs not doing what they are designed to do.  I decide to seek out a specialist in spite of what my gynecologist has told me about waiting 6 months.

On our first visit, our doctor explains how he will go about diagnosing and treating us.  First is the testing.  He knows I have been diagnosed with PCOS, but he needs to confirm that for himself, as no one has ever run any tests, and also make sure there are no other fertility issues at play.  The first step is blood samples (for me) and a sperm sample.  The fertility clinic is an hour from our house.  So they look up the place closest to us for my husband to drop off a sperm sample.  It is half an hour from our house.  The nurse tells us I should keep the sample cup in my bra on the ride to the lab so they stay warm.  There is no end to the amusement this give my husband.

We arrive at the lab with a cup of sperm safely nestled between my breasts, only to be told that they no longer handle sperm samples.  Fucking fantastic.  They tell us we need to go to a nearby hospital for that.  But since he has already given a sample today, he has to wait, to make sure it is a full sample.  My husband is no longer amused.  He had taken the afternoon off from his business (he works for himself, by himself) for nothing.   Since the lab does still do blood testing, I get 11 vials of blood drawn for the half page list of tests they need to perform, and we go home.

My husband calls the hospital that afternoon to find out if he needs to make an appointment, and if he needs to bring the sample with him, or if he can make the deposit there.  They tell him no appointment is necessary, and yes, he can do it there.  So the following Monday, he drives the half hour to the hospital.  He calls me in a rage 10 minutes later after being told when he arrives that the lab is closed that day, due to one of the holidays that not all businesses observe in our state.  Fucking wonderful.

He calls me in a rage again the next day, after returning to the now open lab, only to be told by the lab technician that whoever told him he could produce the sample on site was wrong.  He will have to go home, produce the sample, and return with it.  Are you fucking kidding me?  He takes the sample cup, goes into a private bathroom in the hospital, produces a sample, drops it at the lab and returns home.  Fucking finally.

At our next appointment, my blood tests reveal that I do have an elevated insulin level (a sign of insulin resistance, and therefore, PCOS), but that have detected no other issues.  My husband is delighted to find out that he has an abnormally high sperm count, good motility (percentage alive), mobility (amount of movement) and morphology (shape).  I am relieved that there isn’t a secondary fertility issue to deal with.  At least not for him.  My testing isn’t quite done.

I need to have the endometrial lining of my uterus tested.  This is shed during menses, and when it is not shed often enough (and I don’t because I don’t have regular cycles), it can build up and cause precancerous cells to develop.  Fucking seriously?  Yay for me.  I also need to have the size, shape and position of my uterus checked, and to see if there are any blockages in my fallopian tubes to make sure there are no physiological issues keeping me from getting pregnant.  Having a tipped or split uterus can keep the sperm from getting to the egg.  Having blocked fallopian tubes can keep the egg from getting to the uterus (where the hell do they go?  do they just float around in your abdomen forever?).

My OBGYN can’t get me in for a the endometrial biopsy for 2 months, so I return to the fertility clinic 2 weeks later to have it done there.  My doctor is not there, but the doctor that performs the procedure is incredibly nice.  I have no idea how painful this will be.  Turns out, pretty painful.  They place a long thin tube on the end of a syringe and vaginally insert it into my uterus.  It hurts when they touch the wall of my uterus.  My ass comes completely off the table when they start to suck off some cells.  So they have to do it again while I stay still.  When I sit up after the procedure, I am as white as a sheet.  They have me lay back down for 15 minutes before they let me leave.

The next week, I go to the hospital to have a uterine dye test to check the physiology of my uterus and fallopian tubes.  Again, I have no idea how painful this procedure will be.  Turns out, even more painful.  For this test, I am placed on an x-ray machine (really?  more x-rays of my reproductive organs?  like they aren’t fucked enough already?), while iodine dye is vaginally injected into my uterus.  The dye then fills my uterus and travels up the fallopian tubes as the radiologist and I watch on a screen.  My severed fallopian tube is blocked, which is no surprise, and does not matter, since there is nothing left on that side anymore.  This is likely where most of the pain comes from.  Apparently, for some women, this procedure will unblock a blocked fallopian tube.  If it has enough force to dislodge a blockage, I’m guessing the pressure against the scar tissue on my severed tube is considerable.  I’m in so much pain after the procedure that they make me lay down.  Unfortunately, the only place for me to do so is on a gurney in the middle of a hallway.  I’m in too much pain to give a fuck about the people passing by, but laying down is doing no good, so when the radiologist asks me it I feel better, I lie and say yes.  I have Advil in the car.  I just want to take something to dull the pain.

The car ride home is awful.  I end up laying flat on my stomach in the passengers seat, as that is the most comfortable position I can find, while my husband freaks out about how dangerous it is to ride in a car that way.  He has no idea how much danger he is in, as I would like nothing better than to punch something.  Repeatedly.

The next week, we get the test results back.  Everything is fine.  I have no secondary issues.  I do, however, have a very thick endometrial lining that I need to shed before we can proceed.  So they give me some drugs to make that happen, and I have to call them when I start to menstruate.

We started off with just insemination. 14 days after menstruating, we go to the clinic, my husband deposits some sperm, we drive around for a couple hours while they “wash” it (removing the seminal fluid, basically condensing the sperm into a “ball”), and then return for them to insert it into my uterus.  We do it again the next day.  14 days later, I take a pregnancy test.  It’s negative.  We wait a couple months for me to get another period.  It doesn’t happen.  They put me on drugs to make me have one.  After the next failed insemination, I go on birth control pills for a month to ensure that I will get a period.

We also move on to a new treatment.  This is the only other treatment our insurance will cover.  3 days after menstruating, I have to go get a blood test and an internal ultrasound done.  This makes sure my ovaries are clear from cysts and that my hormone levels are where they are supposed to be.  On day 5, I start injecting myself with follicle stimulating hormone (FSH) (thankfully, this just uses a small needle and I can inject it into my belly fat.  There is another form of the drug, that would have to be injected into the muscle in my ass.  If we need and decide to do IVF, this is likely the drug we will have to use.  And my husband doesn’t do needles.  I don’t trust my mother to do it, and I feel a little weird asking my mother-in-law to stick a needle in my ass). I go in for blood tests and internal ultrasounds every few days so they can determine when I need to inject myself with the human chorionic gonadotropin (HCG), which triggers the egg(s) to be released.  I get excited every time I see follicles on the screen (there’s 3, we could have triplets!).   The next 2 days we return for the insemination process.  We aren’t allowed to have sex from the day before the first insemination until the last insemination.  Being pumped full of hormones designed to make you want to have sex makes this much more difficult than normal. 14 days later I take a pregnancy test.  It is negative.

It is always negative.  My spirits dwindle as we proceed.  My lowest point in the process comes shortly before Christmas about 2 years in.  I had been hoping to tell our parents they were going to be grandparents on Christmas morning.  Instead, we get yet another negative the day before a family Christmas party.  I love this Christmas party.  It is literally my favorite day of the year.  The day of the ravioli party.  I spend the entire morning in the kitchen with my husbands aunts and grammie and cousins, all of whom I adore.  There is usually nothing that makes me happier.  And I am doing my best to enjoy it this year.  Until one of the cousin’s little girls walks in wearing a t-shirt announcing that they are expecting another child.

My husband and his mother immediately look at me.  I just shrug my shoulders and walk into the next room.  My husband pulls me into a room where we could be alone, and I break down.  It’s so unfair.  We’re still trying for our first, and now everyone else is starting on their second.  I’ve been part of this family longer than any of his cousins wives.  And we are the only married couple in this generation of the family that doesn’t have a  child. I collect myself and we go back to the party.  I later find out that the cousin who is expecting his second asks my husband when we’re gonna get started.  I’m grateful I was not there for that conversation.

Shortly after Christmas, my husband tells me he doesn’t know if he wants to continue trying to conceive.  He hates how upset it makes me when we find out we’ve failed, I’ve failed, yet again.  But the thought of giving up is even worse than seeing a negative pregnancy test.  So, I take some time to think things through.  And I make a major adjustment to my views.  I won’t let the fertility process ruin my life.  I won’t let it change who I am.  Being upset that someone else has a child, or is about to have a child, is not who I have ever been.  And it is not someone that I want to become.  I love children.  I love babies.  I love baby showers.  Children are a reason to celebrate life.  I refuse to become someone who cannot look at a baby or a pregnant woman without being filled with indignation.

And I’m not.  I never become a bitter, angry women because other women have children and I do not.  I cuddle every baby my friends and family have.  I attend every baby shower with genuine happiness.

We try with help for 3 1/2 years.  Then my insurance changes.  And we no longer have any infertility coverage.  A couple years pass where I have no better luck getting pregnant on my own, even after losing weight and using ovulation kits to make sure our timing is right.  We decide to save up for IVF.  We estimate the procedure will cost between$10,000 and $25,000.  I’m 31.  I want to start the IVF treatment before I’m 35, because the changes of pregnancy decrease after 35.   We have plenty of time.

We get about $4,000 saved up before the economy turns to shit.  We cancel our cable.  We trade in his car for something that gets better gas mileage.  We change grocery stores.  We cancel every unnecessary bill we have.  We use up every penny in our savings trying to stay above water.  We were such idiots to spend money the way we did when we were making lots of it.  All thoughts of IVF fly out the window.  We need to keep our house.

Even with tightening our belts, things continue to get worse.  I haven’t had a raise in 3 years, but I’m happy just to have my job when so many others are losing theirs.  Eventually, my husband has no choice but to close down his business, because we’re drowning.  He takes a job working for someone else for the first time in 12 years.  We slowly start to crawl out of the financial hole we’ve gotten ourselves into.

As I write this, I am 35.  We still have no savings.  We’re still crawling out of that hole.  And I have no idea if we will ever be able to afford IVF.  Nor will an adoption agency grant a child to a couple who is in financial trouble.  And although I am still not full of indignation, I am full of sadness.  For the first time in my life, I do not see a future with children.  For the first time in my life, I do not picture my future at all.  For the first time in my life, I am afraid to dream.  For the first time, I am letting my infertility change who I am.