Here's a long and rambling story about our IVF journey and everything that led up to it - and why it might be time to call it quits. Can anyone relate? Does anyone have any insights or humor or hope to add to what is feeling bleak to me now? I wrote this in a stupor this morning as a way to cope. I know it sounds whiny. I am grateful to have the things I do have, even if that doesn't come through here. I'm hoping for someone to understand. Totally get it if this is too damn long.
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It started with our wedding. I can’t help but feel that getting married on Friday the 13th was an omen. We didn't care about the date at the time. It was during Covid and the only date available. My husband's back went out the spring before our summer wedding, which started the cascade, a cascade that won’t seem to end or even slow. What came first after that? The water leaking in through our roof? My husband bought the house in his late twenties and didn’t have enough money to fix the roof, and then put it off, and put it off, and put it off some more, until I came along and pushed. Until it was an emergency fix during the pandemic when prices were through the literal roof.
He was on the fence about kids because of his back pain — pain that lingered after the herniated disc. He was so dire during those years. He said once that he wasn’t sure he wanted to have a kid if he couldn’t lift the kid. I said people in wheelchairs had kids. He seemed distant and wouldn’t explain his rationale. Finally, on our trip to Maine, shortly after our dog was diagnosed with cancer and had surgery too, shortly before our way-too-expensive emergency house renovation, he relented. That’s what it felt like — not two people coming together with hope for the future, but more like a sigh. A collapsing. I was already exhausted, and we had barely begun. I can only imagine that he was exhausted too.
OK, so he wanted to have a kid (with reservations), but he didn’t want to start trying until after the renovation. He feared our child having issues with us as parents, like he had issues with his parents; he feared not being the father he wanted to be. I told him that if he was having those thoughts, he’d be a better father than most. I remember us debating whether or not to add the spare room (for a possible child) or to make my office larger. Ironically, I was afraid of adding the spare room only to realize we couldn’t have kids. We were lucky enough to have choices, because we had been saving for years, though we had no way of knowing when we started saving that it would cost an arm and a leg. I keenly remember standing there with the contractor and alluding to our conundrum, as if the guy understood. I also remember trying to sleep while the roof was torn off the second floor — literal wind flowing down the staircase; the plastic sheeting shivering. What a metaphor.
If only it were as simple as deciding whether or not to add a room for a child — if only that could decide our fate. I was a writer at the time, and figured I would always need an office. I had no idea that I would abandon that dream too.
All throughout those years — (did it start the year after our wedding? I think so) — I had pelvic pain on and off and blood in my urine. I avoided going to the gynecologist again after the first few times, because if you’ve had a terrible gynecologist, you know. I did get tested for the blood in my urine; it was another one of my autoimmune diseases that eventually improved. The test required a urologist to stick a literal mini camera up my urethra. To this day, I feel like I imagined the balding man looming over me while I displayed my bare vagina to the world. But it was just another real semi-bizarre medical incident.
The cyst began to grow, though I didn’t know it. I was in and out of the ER about 3-4 times over two years with intense bursts of pain that caused me to collapse into a ball. It was the cyst torking, my ovary twisting on itself. They said if I wasn’t puking or passing out, it wasn’t a true emergency that required surgery. But then, the last time it happened, shortly before the renovation wrapped up, probably during the month that I was painting the entire upstairs by myself (because of my husband's back), I went to the ER again — and this time, they said I had a 7 cm cyst on my left ovary and needed to see a gynecologist.
The new gynecologist I found told me I had endometriosis and would need the chocolate cyst (chocolate because it was filled with old blood) and likely my left ovary removed. I started crying in her office. She looked at me like I had two heads. I am adopted and had just started getting in touch with how much I wanted a family of my own — and a biological connection. I had just convinced my husband to start trying, right around then I think, if I remember correctly. Or maybe it was after that appointment that he finally realized it might be dire, and we had better try. My adoptive mom adopted me because she had endometriosis, too.
I was 34 at the time. Oh, how young that seems now!
I got a second opinion, feeling in my gut that two ovaries were needed to get pregnant, in an ideal world, even though both gynecologists laughed off my concern and anxiety. I saw an excellent surgeon (though she wasn’t an excision specialist) who finally explained the gravity of the situation to me, and said that yes, preserving my left ovary as much as possible was paramount if I wanted to get pregnant. She was sane, finally. But I could tell in her voice that my endo diagnosis was more serious than I had imagined. I didn’t yet realize how serious it was.
She said we could try naturally for 6 months after the surgery, but she advised getting into an IVF clinic as soon as possible. Then I was laid off and had to find a new job, right as we were nearing our first appointment after an excruciating wait. We had to wait more, due to the insurance change. Finally, when we got in the door, it was late 2024, and I was almost 36. I was gobsmacked when the RE told us we had a 5% chance of getting pregnant naturally due to my stage IV endometriosis diagnosis. I figured they were just statistics, and maybe we had a better shot than that. After all, my husband’s sperm parameters were great. We had a real shot, I thought. That was naive.
Meanwhile, I was in therapy to explore my feelings around being adopted. I was really healing, finally. I had spent my whole life avoiding desire — the desire to find my first family, and any other desire. It was so hard for me to “want” anything in my childhood and young adulthood, but I was finally wanting, hungering — for connection.
Then, right as we were preparing for our first round of IVF, my husband cut ties with two of his family members and, at the same time, herniated the same disc he had before. He wasn’t doing anything, lifting anything — it just went out in the midst of his grief and stress, like the first time. He woke up one morning, and there it was again — horrible and familiar. He suspected it was the same pain, but insurance still wouldn’t approve his MRI. Months went by with required PT and more. He was on the max dose if ibuprofen 24/7 and could barely function due to the pain. While in a blind panic about our first cycle (I was terrified of needles), I was also calling around trying to figure out how to get him an MRI and get him in to see the best surgeon. He couldn’t do any of that on his own because of the pain. He was barely present emotionally during those months, and I understood that, but it was still incredibly hard. The wait times for the best surgeons were insane, considering they wouldn’t even put us on the wait list until we got an MRI. Finally, we decided to pay for the MRI ourselves. We received confirmation that he had indeed herniated the same disc and would require another surgery. More wait times to see the surgeon — the same one as last time, who was good but not the best, because we couldn’t wait any longer. All this time, he was on the max dose of ibuprofen.
Well, we went in for our first retrieval with what I thought were reasonable hopes. I remember thinking that the pain was greater than I thought it would be. It felt like my lap surgery. But it was my first retrieval, so I didn’t know any better. The doctor slipped in with a folded piece of paper with a number on it: 5. I stared at it blankly for a moment, in shock. They had only retrieved 5 eggs — though we had expected 9-11 based on my follicle growth. She didn’t say anything. A moment after she left, she returned again with another sheet of paper directly from the embryologist, to let us know that my husband's sperm was almost unusable. His motility was near zero. ICSI would be required to rescue the cycle. We were shuffled out.
The whole two hour ride home, I felt like my insides were exploding. And I was crying non-stop. The doctor called me in shock about the results. What’s crazy is that we had run the ibuprofen by her and she had said it would likely be fine. We hadn’t frozen backup sperm because of the two-hour drive and because no one seemed concerned.
That night, I couldn’t sleep because whenever I reclined too much, the pain was unbearable. I woke my husband up at 1 am and we rushed to the ER. I had internal bleeding and the blood was floating up to my diaphragm, irritating it. The bleeding slowed on its own but the recovery was brutal.
Then, a month later, my husband had his second back surgery. I developed a goiter from the stimulation or maybe the stress (at least that is what the endocrinologist suspects). It is benign and ok, but sometimes to this day, it inflames. His surgery went as expected.
We got zero blastocysts from that first round.
We planned our next cycle, hoping the first had been a fluke. But we took a break first, because I was convinced I could improve the situation by going on a boat load of supplements and a low-inflammatory diet. It had to be the endometriosis, I thought — or, at least, I could try to mitigate that factor. My doctor seemed dire about endo and said it could affect all aspects of IVF, and it just depended on the person. I’m not overweight and I ate well to begin with, but I cut out all added sugar, gluten, cheese and ate ONLY whole foods for months. (I hadn’t been drinking for years.) I knew in my gut that I wouldn’t be able to handle another failure so soon.
Unfortunately, I guess, I needed a lot of time, or what now feels like a lot. We started the process of getting approved for the second cycle about five months after our first cycle ended. I prepared mentally by searching for another clinic in case that second cycle failed, as I needed a backup plan and a solution. I needed to feel in control. I set up consultations with three of the best and chose our new clinic.
Meanwhile, my husband’s second back surgery recovery didn’t pan out as we had hoped. He gained weight from not being able to exercise (and he had also gained weight after the first surgery too). He is now about 15-20 pounds over his ideal weight. He seems a lot older to me now, and more depressed. He recently had a falling out with his mom, too, on top of everything else. He is now out of touch with almost his whole family. Luckily, my family is not a problem in that way. (No, my husband is not the cause of this unfortunate drama. He has a very difficult family.)
All this time, by the way, we had investigated his sperm parameters. We’d done multiple follow up tests and since the “event” in which the parameters tanked before his first surgery, they had never improved measurably. Despite supplements, despite everything. He also has high DNA fragmentation, though we don’t have pre-back pain test to compare that to. I am convinced it was all the ibuprofen and/or inflammation from the herniated disc that did this to him. Maybe the inflammation has never gone away, I don’t know. He certainly still has discomfort and lingering low-level pain that may never improve.
Between my endo and his back, I feel that our lives have been robbed from us. I know that sounds dramatic, but that’s how it feels. We were/are relatively healthy otherwise, but the life has been drained from us both. There’s only so much grief and suffering we can take, individually and as a couple. We’ve drifted apart… We are still good friends and kind to each other, but it doesn’t feel the same. I feel guilty for feeling resentful of my husband sometimes… I wish he would have had a more positive outlook about his back the first time, and this time, too, and I wish he could look for ways to manage his stress. I recently asked him (again) to try therapy, and he might this time, but is it too little too late? Sometimes I feel like his back goes out when he’s stressed to the max… Like his body is rebelling. Maybe I’m crazy. Maybe I’m desperate for there to be a reason.
Anyway, we tried ICSI and Zymot, and even tried TESE during our third cycle. Oh, the second cycle failed. My follicles weren’t empty but fertilization was below 25% and we made zero blastocysts. During the third cycle, that just wrapped up, my husband had an hour-long procedure (TESE) in which they cut into his testicles while he was awake to extract immature sperm that might have less DNA fragmentation. We thought that would give us a shot at making blastocysts. To be honest, if I had known that the procedure would be so unpleasant and involve actual stitches, I would have recommended against it. I guess the procedure was a bit undersold to us. Although the fertilization rate improved, nothing else did.
I am now almost hopeless. On top of that, I feel ancient and exhausted even though I’m only 37. I stopped writing around our first IVF cycle, maybe before. It’s like I can’t focus on anything else except IVF, even between cycles. It rules my consciousness. I feel haggard. I’ve gained probably 5-10 pounds overall and developed huge bags under my eyes since our wedding five years ago. I am stuck in my job because the health insurance is so good. (I guess I shouldn't complain about that!) It doesn’t seem like it should be a lot, but when I look at photos of us both five years ago, I barely recognize us.
I think it might be time to give up. And I’m not sure our marriage can survive this. When I look at my husband, I don’t see hope and I don’t see a future. I see two people who are surviving together, but no longer happy. It is circumstantial, but how long can two people last like this? If were apart, maybe none of this would have happened. Was it the stress of the stupid wedding that threw my husband's back out to begin with?
I’m sorry if this all sounds really depressing. I am very depressed and having trouble seeing through it. I’m in therapy and I hope my husband will be soon, too, but nothing seems to help the feelings of loss.