It’s estimated that between 5-10% of the female population is affected in some way by Polycystic Ovarian Syndrome.
This is her infertility story.
I’m a lesbian. Ordinarily that isn’t super-important, but I’m at the point that I want kids, so it becomes very important.
Once people find out that I’m gay and want kids, I get asked, “So you’re planning to adopt, right?” There seems to be a socially-held expectation that being gay means you must adopt. Once, someone told me that adopting was “my social responsibility.”
However, my response is always, no, I want to carry my child. I want to experience pregnancy, with all its ups and downs. I want to feel my child grow. It’s my experience, and no one should try and take that away.
While I was never big into kids, I’ve dreamed about being pregnant since I was a teenager. I always vaguely knew it was something I had to do at some point.
Then, about two years ago, suddenly a switch flipped and it was all I could think about. I started reading about it, talking about it, doing everything I could to get near it.
And one day, my partner and I decided to start trying.
My partner and I have tried to get pregnant for a year and a half. We tried to get her pregnant because her cycle was regular. Since I cycled irregularly, and we didn’t know what it would take to get me regular enough to become pregnant, it seemed the easy choice. We started tracking her cycle, found a donor, went through a contractual process that took months, and finally started trying.
Every month we’d try, watch her symptoms, get excited, take the test… and it would be negative. Twice we got hopeful. But eighteen months and two miscarriages later, we’re back at square one.
During those eighteen months, I ran through every emotion imaginable. The worst of which was the jealousy; jealousy that I wasn’t able to carry our child. I consoled myself by saying I’d carry number two. However, by the end, we both felt defeated, deflated, and devastated. I also felt a fierce determination; a determination that I wanted this so badly, I’d do anything I needed to do.
After 18 months of failure to get pregnant, I decided to see an endocrinologist. I’ve always had a really irregular cycle, so I knew something was wrong. However, it took me a long time to be ready to face the possibilities of what that might mean.
After meeting with the endocrinologist, I was diagnosed with Polycystic Ovarian Syndrome, or PCOS. PCOS has major fertility implications – PCOS means that I don’t ovulate. No ovulation = no baby.
I’ve started a treatment regime including medication and weight loss, that so far has been unsuccessful in booting my system – no easy task. Next month I start an ovulation drug that will allow me to ovulate regularly.
All of a sudden, this got very, very real. My coping strategy involves researching the hell out of my options. I’ve been sensitive to my options for a while, because, by now, we’re up $2,000 in to plane tickets, doctor visits, and everything associated with a bootleg-approach to getting pregnant.
We tried working directly with our donor. We had him tested for fertility. We got ourselves prepped. It costs a lot of money. Starting our adventure with the endo and getting my cycle regulated meant we had to consider some options.
My options are to start fertility drugs.
Once I do this, I can try either a home insemination, or an Intrauterine Insemination, or IUI. This whole TTC thing gets complicated, overwhelming and expensive really quickly. My understanding is that IUI, in which a tube is placed in my uterus to flush sperm in to the area as I ovulate, is my best option.
Of course I know how baby-making works, but damn.
I hate that it has to be so clinical. I hate that there is always someone else in my bedroom. I hate that this can’t just be mine. I hate that I can’t be surprise. I hate that we will pay an $800 price tag for an 18% chance of success. It’s just not fair.
Despite all of this, I’m optimistic. Still looking forward to the future. I know it will happen, and I can’t wait until it does.
As long as there is that tiny pinprick of light, I’ll keep the sputtering flame of hope alive.
I am a fortunate person. I have a gorgeous daughter and a wonderful husband. Our journey to having our first daughter has been written about here. It wasn’t easy, but the little turd has been worth it. She is a handful. Most days, she is enough.
On Christmas, however, it felt like someone was missing.
I want another child. I want to feel the life growing inside me. I want to be that happy pregnant person. I want my daughter to experience the chance of being an older sister.
I feel like I don’t fit anywhere: I have a child, so I’m not completely infertile, but I’m not one bed-wrestling session away from having another child. It’s complete chance and circumstance if I end up pregnant.
I know this isn’t very coherent, and I thank you if you have continued to read beyond the first sentence. I just needed to vent.
My husband is completely content with our life. And I am, too, for the most part. Lil’ Monster is a spitfire, always into EVERYTHING. She would not take too kindly to someone else being in her mommy’s lap/arms/snuggle area.
I don’t know. C’est la vie, I suppose.
Good night, The Band.
It doesn’t seem like a big number, does it?
I guess it depends on what you’re counting. Thirty-six jelly beans? That’s a decent amount. Thirty-six grains of sand? Hardly anything. Thirty-six seconds? Probably already gone since you started reading this.
Time is a funny thing, you know. As I get older, I swear that it moves faster and yet each day itself feels like slogging through quicksand. I look at that number, that 36, and my mind denies it. It cannot be. It can’t be that long, can’t be that many. Thirty-six months.
Thirty-six months of hoping and then having each of those hopes shattered, one by one. How many times can a person have their hopes smashed before they themselves break? Before hope abandons them completely?
Thirty-six months of “trying to conceive.” That’s three whole years. Three quarters of ourmarried life.
In thirty-six months, not once has that damn pair of pink lines appeared. I am disappointed. I am angry. But mostly I feel despair. I feel like an idiot for getting my hopes up for two weeks every single month, only to have them dashed again and again.
My doctors remain positive. I’m still young – at least compared to many other women at the fertility clinic. I’m only thirty years old. The treatments are working, at least on paper. But not working well enough, because I’ve never conceived, not once in my life. “Close” only counts in horseshoes and hand grenades.
A few months ago, my psychiatrist asked me, “What does the future look like?”
I froze. He was asking me to peer right into a dark truth that I’d been avoiding with all my might. A dark truth that coats everything, blurs everything, muffles everything I do.
“That depends,” I managed to whisper, “on whether I ever get pregnant.”
“And if you don’t?” It was a gentle prompt, without malice or indifference.
“If I don’t… I don’t know.” That’s what I said. What I was thinking was: I can’t see that future. I don’t want to see that future, I refuse to look at it. My mind shies away from thinking about it.
What if it’s all been for nothing?
Some days, despite the blessings I have, I am reminded over and over and over again that I do not have the one thing in my life I thought I would have: a child.
It seems like everyone I know is expecting their first, their second child. And I try really hard to be happy for them. I try so hard to mouth the right things, because I am happy for them. But every one of those words of congratulations tears open the scars – I will never have a child. Not a child of my own. (And I do very much consider an adopted child to be my own, by the way.)
My wife is not just simply not ready, but also not…capable. I’m not talking physically, but emotionally. I’m already keeping our home together, taking over pretty much every responsibility.
I may be a bad person, but I can’t take care of all of our details, make sure she’s taking all of her medications, and be the sole caretaker of a child as well. Hell, I doubt we’d be able to qualify for adoption if I have to somehow bind everything together, and honestly, I don’t think that would be a good environment for a child anyway.
So. I’m left with a bitter choice that I can’t actually make: my wife, or my life-long dream of a child.
How do you make a choice like that?
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I didn’t have much hope for our IVF cycle. We transferred two embryos and none of the remaining eleven made it to the freezing stage so I thought I had a couple of duds in my uterus as well.
I ended up pregnant with twins on our first try.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
Life altering not life ending.
Friday’s child is loving and giving.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.