We're sorry that this happened to you, and we're here to help

That's what I wanted to hear when I found out that my endometriosis was extensive and my Fallopian tubes were blocked. I really thought that someone, somewhere along the way, would say it to me. Or I thought they would say it in their actions, kind of the way all of the oncology doctors and nurses kept telling my mom about how much they wanted to help her manage her side effects during chemo, there were support groups she could go to, and had she received the shawl that a local survivor knitted? From the moment of her cancer diagnosis, everyone she interacted with was unequivocally supportive, and when I got my infertility diagnosis, I naively expected the same.

I never heard the phrase above, or anything like it. I heard other things that my doctors seemed to think were helpful: don't worry about whether you get right back into ovulating after surgery, "we can make you ovulate, that's not a problem." I really wouldn't worry about egg retrieval, "we'll probably relieve around 80% of your pain." Oh, you're feeling anxious while you're lying on the table about to start your retrieval? Well, let me point out this machine, "it might make some beeping noises but don't worry, everything is okay." I understand that your belly is in agony and you haven't been able to eat anything for days, but "it's normal to have pain after retrieval."

I've spent tons and tons of time thinking about this, and I think there was at least one really big disconnect between me and my doctors: what I saw as a tragedy, they saw as an opportunity, and later as a triumph. They skipped right over the part where I was trying to process the idea of myself as a sick person - of course I was sick, otherwise I wouldn't be seeking out their help, duh - and jumped right to the treatment they thought would solve all of my problems in one fell swoop, regardless of how invasive and life-changing it might be. Endometriosis recurs and worsens when left to its own devices, and my best options to keep things dormant after surgery were birth control pills, Lupron injections, or pregnancy that was only achievable through IVF. I had been trying to have a baby without success for almost a year, right? Well, now there was a really obvious reason explaining our lack of results, and the pregnancy would be beneficial to my body overall. And then! Then I got pregnant, first try, single embryo transfer! My IVF cycle was a success! They were happy for me, and I wished I could be happy too. But the whole time this was happening, I was driving home after work every day trying to see the road through tears, waiting until I got home so I could go upstairs, lie on the bed in the dark, and really sob. Something was terribly, deeply wrong with me, no one seemed to care about me or my needs when there was this potential-but-then-actual pregnancy to consider, and every time I was confronted with someone telling me that the destruction of my body was good news or that the pain and discomfort I was experiencing during treatment was normal, I wanted to shout at them. Didn't they see? This isn't good! It's awful! And if it's normal, well, it shouldn't be!

The worst part by far - I can hardly type this - was that I kept thinking I would wake up one day and I would feel the overwhelming joy that I had always thought I would experience when I got pregnant. I did want children, really and truly. I grew up wanting them, my husband and I had always discussed having a family, and if you had asked me about my #1 goal in life, I would (and still will) answer "to be a mother." Some of the pain that got wrapped up in this whole mess was truly about infertility, though I know that my brief dalliance with the fear of never becoming a parent doesn't come anywhere close to the heartache that many other infertility bloggers have experienced. Much more of my experience, however, was about the lack of bodily integrity and helplessness I felt during a time of extraordinary physical and emotional vulnerability, and what I perceived as a lack of support for these feelings from almost everyone around me. I thank G-d for my son every day and he is worth every second of this pain, but oh, how it breaks my heart when I remember how I felt during his conception, gestation, and birth and I compare that to the joy and celebration he deserved.

Since this is my blog and I want to keep writing about the disconnects between what people said and what I heard, I'm about to take this normal-sized post and turn it into a MegaPost. TL;DR: I'm really upset blah blah blah. Now, to expand a bit on the examples above:

"Oh, don't worry about whether you're ovulating on your own, we can make you ovulate. That's not a problem."

My RE said this to me at our very first consult, when we knew I needed surgery to remove my endometriomas but we didn't yet know that IVF would be my only option to conceive afterwards. For the six months before this meeting, I had been diligently taking my temperature and tracking my cycles, and I was pleased to see that they looked pretty typical even though there had obviously been no results. I thought that was a good thing and an indicator that I was probably healthy. But during our meeting, my doctor only looked at my Fertility Friend printouts for a second before saying the above. I remember not knowing how to react - I think I went with a nervous smile. I was scared about the fact that I needed surgery in the first place, and I was clinging to any sign that my body wasn't as damaged as I feared. I suspect that my doctor was trying to be reassuring - "Don't worry Charlotte, even if your ovarian reserve is damaged then we have ways of getting around it!" - but the reassurance I was looking for was more along the lines of "That's great news, because it might make your treatment easier." Also: nobody is going to make me ovulate. I am going to take drugs to ovulate when and if I want to, thank you very much.

"The tubes were completely blocked. You'll need to have IVF in order to conceive."

This was my OB to me as I was lying in the recovery room after my initial surgery. He is an extraordinarily kind person, and I think he'd be horrified to know that when he said this, something within me broke irretrievably. I had thought, naively, that after surgery I might be "cured" of the endometriomas that had brought me there (as much as I could be cured of a chronic condition, anyway.) At the very least I expected to have bought myself some time to process the trauma of the surgery itself - the surprisingly upsetting knowledge that I had let strangers mess around in my vagina and in my body while I was unconscious - before I had to make a massive life decision about having a child. I knew there was a small chance they might have found cancer in me, and it was a big relief when he said earlier in this same conversation that all the tissue they removed appeared to be benign. But then he mentioned IVF, and he suggested embarking on it as soon as possible - given the timing of my cycle, it could even be next month! - and the general anxiety I had felt building in the weeks before my surgery crystallized into a very real, almost palpable, pointy-sided knot of fear. Holy shit, IVF, holy shit, holy shit. I have to do IVF and I have to do more tests and more procedures and let more people violate my body and what if it works and I actually get pregnant and then I need even more exams and procedures and I have to give birth and somehow take care of an infant while I feel so unbelievably terrible about myself?

"I wouldn't worry too much about egg retrieval. We give you a local around the cervix and then we only have to puncture the wall of the vagina twice, once on each side. There aren't many nerves once we're in the ovary and most people aren't too bothered by it. We'll also give you versed and fentanyl, and that will probably relieve around 80% of the pain."

This was my RE to me, in his office in early January when we were going over the plans for my IVF cycle, and the memory of this conversation was and is so upsetting to me that it's taken days to type it out. I know he was aiming for reassurance. And on the surface of it, look at all the things he's offering me! Local anesthetic, minimal vaginal punctures, systemic analgesics, and the experience of other patients who said it wasn't that bad. But this conversation marked the moment that my anxiety and guilt about infertility and IVF first turned into anger - anger that was initially directed toward my doctor. I think I stopped short of pounding my fists on his desk, but I definitely raised my voice. It wasn't good. The 80% thing threw me for a loop in particular, because it felt like a calculated judgment - infertile people only deserve partial pain relief. Because this happened to you, because you got endometriosis and it permanently damaged your body, you are now marked for extra suffering. Other people conceive by having an orgasm, but you, you we're going to torture. While you are awake. So you get to remember it. And it's not like I had this conversation in a vacuum, never having heard of egg retrieval protocols at other clinics - for better or worse, reading so many other infertility blogs had given me a general idea of what to expect. People kept talking about their "anesthesiologists" and "going to sleep," and at first I was simply surprised that my clinic did things differently. Then another patient at my clinic warned me that she had found this procedure very painful, so when it came time to discuss the actual details of my cycle with my doctor, I suggested that it might be comforting to have my husband in the room. My doctor countered with the statement above and denied my request to have my husband present. I would chalk this one up to another miscommunication - the things I would have found reassuring just weren't the things he happened to say - but the reality is that he offered me everything his practice could provide (they don't have the ability to administer propofol, which many practices use in their sedation so the patient has no memory of the procedure, and they don't allow family members in the room according to their policy.) And the repeated suggestion in this conversation and others (see below) that I was the outlier, that their other patients handled it better, meant that all the anger I felt started to turn inward toward myself.

"Now, I'm going to hold your hand, okay? And I know you're feeling anxious, so I want to make sure I point out that machine over there. It's got lots of buttons and it's going to make some beeping sounds, but I don't want you to be nervous, it doesn't mean anything bad. It was probably designed by a man, they don't always understand that these things can be annoying."

This was the nurse coordinator at my IVF clinic, with whom I met prior to my retrieval as part of the fallout from when I "expressed my concern" to my RE (see above.) After the not-very-productive conversation we had where she tried to reassure me about the procedure in advance but ended up getting pretty defensive, I suspect that she made sure that she personally would be the nurse holding my hand throughout in an effort to help mitigate my concerns. This was a really, really nice gesture... except that the things she wanted to reassure me about were entirely not the ones that bothered me. I remember that as I lay down on the bed and put my legs in those awful, awful industrial-strength stirrups, she made a point of showing me the equipment in the room. She mentioned that some of it would beep occasionally and said that it was likely designed by a man, which, what? What does that have to do with anything? And also - I am freaking out because I am about to have a gigantic hollow needle shoved up into my vagina so my flesh can be sucked out of my body, not because there's an infusion pump in the room! I know she meant well, and I know that there wasn't much positive news she could tell me about the giant needle, so she was trying her best to demystify everything else. Except I didn't need it demystified - I mean, even if I didn't have any professional connection to medicine, I still live in North America in 2013 and use a computer and carry a cellphone and I've installed smoke detectors in my home, so things that beep aren't exactly a tremendous mystery. What she thought was helpful, I thought was condescending.

"Hmm... yes, I remember Dr. X saying that he punctured an endometrioma during retrieval, but that shouldn't have much effect on your recovery. It sounds like the pain you're describing is normal."

Same nurse. Still condescending. Let me back up a bit here - when my RE punctured my endometrioma, it was by far the most painful part of my retrieval. I continued to have significant belly pain while in recovery, which seemed to surprise the nursing staff. I spent the next three days trying to remain as still as possible and eating next to nothing, because every time I had any kind of movement within or outside my belly it was like having bad endometriosis cramps. I'm talking about rationing the water I drank so I didn't have to walk to the bathroom any more than the bare minimum. At this point I was about 3 months out from my laparoscopic surgery so the memories were very fresh, and I remember thinking that the recovery experiences were about equivalent - except that with my IVF cycle, I couldn't take the strong painkillers I had taken for my surgery, and I didn't have the days off from work. So when this nurse called me the Saturday after my retrieval to ask how things were going - a very nice thing to do, especially on a weekend! - I was past the worst of it, but I did mention that I had been in a lot of pain, perhaps because of the punctured endometrioma and the fluid that was released into my abdominal cavity? She was pretty dismissive of my theory and said that the pain I had felt was normal. Again, she might have meant well (and I could easily have been wrong about the endometrioma puncture and the two things were unrelated) but instead of feeling reassured I felt like I was being chastened for complaining.

None of this was a major problem, really. People have miscommunications all the time. Even with everything that happened where I felt like I was completely alone in my suffering, completely at fault for my diagnosis and my reaction to treatment, I think I would have moved on long ago if it hadn't been for my memories of the egg retrieval itself. That's the experience that keeps replaying itself when I close my eyes to go to sleep at night. It's what I think about when I get up in the morning - you know how sometimes you wake up and you can't quite remember something really big? And then the memory comes flooding back and you think, that's right, I did get a raise yesterday! That's what happens to me every day. I wake up and everything seems okay until I remember: stirrups, low lighting, surgical scrubs, you let someone do this to you. I'm varying degrees of functional throughout the day depending on how distracted I am - sometimes I'm fine, sometimes I'm sobbing. But when it's time to go to sleep at night, I fight it for as long as I can because I know that in the space right before unconsciousness I have to see everything again. There's no distraction at that point - just me, looking at my doctor's eyes above his surgical mask and below his cap, trying to be friendly as he waves at me from between my splayed legs. Over and over. Every day is the day of my egg retrieval, so every day is the worst day of my infertility journey. It just. Doesn't. End.

Trauma, Recovery, and IVF

When I was sixteen, I went through a tough event at high school. I won't get into the details here except to say that it taught me one important life lesson. That lesson was that there is no cavalry coming. No one is going to save you. You are responsible for saving yourself. Bad things happen and even if you played no role in causing them, that doesn't matter. There won't always be justice and the people you trust to protect you won't or can't help you when you need them. As Blazing Saddles illustrates, son, you're on your own.

That traumatic event is connected to my recent departure from the blogosphere. (And let's just pause for a second here to acknowledge how very small my corner of the blogging world is: I do have a handful of regular readers, but most people who visit my blog are searching for pictures of my pregnancy tests so they can compare them to their own; sorry, guys, for letting you all down. Hope you found someone else's urine to look at.) It's connected because in both cases I felt completely blindsided by a tremendous life change, I looked to people in positions of authority for help and comfort and didn't find it, and it took a very long time for me to recover psychologically. That's how I feel about my infertility diagnosis and treatment experience, from the distance of almost two years: it was a trauma. A huge, life-altering trauma that still has me floundering.

To bring you up to speed, here's a brief synopsis of events that have taken place since O's birth last fall:

October: Have baby. Labor and delivery go pretty smoothly and we are blessed with a healthy, adorable, bouncing baby boy. I notice that I have a few weirdly obsessive nights where I keep thinking about the birth, and it takes much longer to feel physically "recovered" than my doctors predicted, but I move on to focusing much more on my delicious little newborn than my IVF cycle, my pregnancy, or my delivery.

December: 6-week followup appointment with OB. Have promising ultrasound showing no major endometriosis-related problems, decide to start the mini-pill, generally feel optimistic about life.

January: Go back to work. O starts daycare, immediately gets a series of minor colds and coughs, and everyone's sleep and commuting schedules suffer. Still, as the days get longer and the sleeping arrangements get back on track throughout the spring, I continue to feel pretty great.

April: Find out that the events of the past year and a half have had external consequences that I genuinely didn't see coming. Memories and anxiety that had previously been held at bay come flooding back. Another ultrasound shows that my endometriosis is about as quiet as I could hope, but it doesn't matter, because everything else is completely falling apart.

June: Find out that our current insurance plan - the one that covers four cycles of IVF at one clinic and one clinic only - will be ending in June 2014. Would we like to have another child between now and then?

July: After a tremendous amount of discussion, agree to see a therapist. Spend 45 minutes of a 60 minute appointment grilling her on her treatment style, philosophy, approach to patient care, and make her agree to send me a copy of her notes. Tell her the digest version of what's happened in my life since 2010 and she makes some sympathetic noises. Three weeks later she actually does send me the notes, which thankfully are unobjectionable but are also completely unhelpful. Decide not to return.

August: Go for appointments at two different fertility clinics. Clinic 1 is where we went for the fresh cycle that created O and where I left my egg retrieval feeling utterly destroyed (a feeling I re-experience daily and which generally leaves me sobbing and gasping for air, but which seems weirdly right when we actually have to walk into their building again.) Clinic 2 is brand new in every sense of the word - their offices are still partially under construction, even.

Here's what we learned at Clinic 1: they consider me a success story, what with my single cycle of IVF and my single embryo transfer and my term birth and my (if I do say so myself) utterly gorgeous son. The conversation takes a bit of a turn when I mention that I think about my egg retrieval all the time, I'm completely haunted by the memory of it, I'm generally miserable, etc. etc. Our RE is sympathetic about my bad experience and understands why I would choose to go elsewhere for further treatment, but it's clear that the financial implications of my insurance coverage are not his area of expertise. We talk about how to transfer embryos to another clinic if need be. We also talk about what would be involved if I chose to somehow get past my earlier experience and have a Frozen Embryo Transfer (FET) cycle with them. It's nowhere near as invasive as what I went through before, obviously, and they even say they prescribe Crinone for progesterone support so I wouldn't have to do those vile progesterone-in-oil shots. And to his eternal credit, right before the end of the appointment, our RE does admit that "we tried not to hurt you, but it sounds like we did hurt you a little bit, and we're sorry about that." I leave feeling like we repaired the relationship quite a bit, but part of me wished that I had abandoned RationalCharlotte at the door and taken advantage of the opportunity to scream and curse at someone who was "responsible" for all of my unhappiness. Except I didn't, because he isn't. And while I was sitting in his office and during the weeks following our visit, my anxiety level has continued to be through the roof - especially when I think about even stepping foot in that building again.

And here's what we learned at Clinic 2: they will knock me out during egg retrieval if it ever comes to that (which it probably wouldn't, because that would be very tough for us to afford just paying cash, but it's still the first question I asked.) They're willing to accept a transfer of our frozen embryos and work with us on a FET. They too are sympathetic about how upset I've been - maybe I'd like to try some valium before a procedure, or investigate acupuncture, or join them for Fertility Yoga on Tuesday nights? The price tag for a FET without insurance coverage will be steep but not prohibitive. However, they do use progesterone-in-oil shots, and the minute I hear this the whole world seems to dim for a moment. Those needles are long and thick, injecting them into my ass is humiliating, the process as well as the aftermath is painful, and my heart rate skyrockets when I so much as think about the shots. And even in a new space, with new faces, the mere discussion of what's involved in infertility treatment is enough to make me feel completely terrible.

So, what do I do? Start blogging again, it seems. Other than that I have no idea.