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.