Today I had my 2nd HSG (a test to check whether or not your fallopian tubes are open, and sometimes to look at the anatomy of your uterine cavity). I had my first HSG almost exactly a year ago, it was perfectly normal, and I got pregnant in the next cycle. This year, things are looking a little bit different.
Apparently I’ve fallen into a gray area. The good news: both my tubes are open (i.e., the dye went down the tubes and spilled out the other end, as it is supposed to do). The bad news: both tubes show signs of significant damage, one more than the other. Unsurprisingly, the left tube is the one that looks really screwy — that’s also the side on which I experienced endometrial scarring after my first pregnancy. The radiologist showed me the images, and pointed out how the dye was reluctant to spill out, and sort of pooled in a big lumpy area towards the ovary. That was the damaged bit. It did spill in the end, but the pooling was a bad sign. On the right side things looked mostly, but not entirely, normal. There was subtle evidence of damage, but the dye spilled readily from the end as it was supposed to.
I’m… not yet sure what this means. I tried to ask a bunch of questions, but things were happening kind of fast, and I think the radiologist and the fellow aren’t supposed to discuss anything related to treatment or next steps — that’s a job for my doctor. The fellow asked if I’d scheduled a follow-up with the reproductive endocrinologist (RE) yet. I said I hadn’t, and he said I should definitely schedule one to discuss it with her. That sounded a bit ominous. They did tell me that since my tubes are open it is possible that I could get pregnant, but that I’d be at high risk of an ectopic pregnancy because of the damage. In the little bit of googling I’ve done since then, it seems that depending on the severity of the tubal scarring, either they’ll continue with fertility treatments and watch me like a hawk in case I do wind up with an ectopic pregnancy, or they might even recommend going straight to IVF. I’m really not sure yet. Clearly I need to talk to the RE about her impression of the results and my options for the future. With one mostly-normal tube, the outlook might not be that bad, but with one very screwed up tube the danger of an ectopic pregnancy might be too high to risk it. I just don’t know yet.
I got back from the hospital too late to schedule the follow-up appointment with the RE, so I don’t yet know when it will be. I guess I’ll do that in the morning. Wish me luck.
About the experience of the HSG… I really didn’t have a very hard time with it the first time around, and this time it was still no big deal. Yes, it’s unpleasant and crampy when they put in the catheter, but then it’s totally fine after that. The emotional experience was very different. I wasn’t as freaked out this time around… but everyone kept asking me if I’d had an HSG before, and when I said yes, they were really curious about why I was having another one and asked a ton of questions. I had to tell the whole story of my daughter’s death and our subsequent misadventures three times, once for the nurse, once for the fellow, and once for the radiologist. I was frustrated by the third time — don’t they have my chart? Can’t they talk to each other? Is it really medically necessary to make me repeat this painful story three times? Since they’re just diagnosing me, not treating me, I don’t think they really needed to know — I got the impression that they were mostly just asking from curiosity.
The first nurse who brought me in to the procedure room and kept an eye on me while I changed and waited was 25 weeks pregnant. I was feeling glum about having a pregnant woman lead me through the procedure, especially when she started asking me chatty questions like “So, do you have kids?” and “Have you ever had this test before? Oh, then why are you having it again?” and I had to tell her my whole story. But once we got talking, she was lovely. She apologized for accidentally prying enough that I had to talk about our loss, and talked about how she’d had an HSG before she got pregnant, and what a wimp she was — how her doctor had given her Valium for her anxiety and she’d said “ouch, ouch, ouch!” through the whole thing, even though now she realizes it really didn’t hurt that much. I’m assuming she wouldn’t have told this story to someone who hadn’t had the test before — since I knew I’d be fine, it came across as funny and kind, but I imagine that to someone who’d only been reading horror stories about HSGs on the internet it would be terrifying! The nurse who was actually in the procedure room with me had the same first name as me, which was funny since it’s not a very common name. She was nice at first, although she was talking about her kids (actually her deceased sister’s children, whom she’s raising), and then as I was leaving after getting the bad news that my tubes were scarred, she said “oh, you can have my kids! Believe me, after a week in your house, you’d want to give them away too!” … which is very high up on the list of things that one should NOT SAY to an infertile person. She said it again after I’d talked to the radiologist. I thought about saying something to her about how I didn’t mind, but some people might find those sorts of statements painful, but then I didn’t. I couldn’t think of a way to do it that wouldn’t sound defensive, and really, I just didn’t want to deal with it at that moment.
So, now I wait for the follow-up appointment with the RE, I guess. I’m just not sure what to think at this point, other than that it would be really nice to get some good news instead of bad news for a change. I have to say, at least for now, I don’t feel depressed and miserable about this (what a nice change, eh?!). I actually feel a bit relieved that there’s an explanation for why we haven’t been getting pregnant, and that there are solutions available, even if some of them are massively expensive and would take over my life (i.e., IVF). I’m in the VERY lucky position of having excellent insurance that would cover multiple rounds of IVF if we need it (although I’m sure the medications would still be massively expensive), so that’s one less source of stress at least. Anyway, that’s my story for the day. I’ll update again after we’ve talked to the RE.