Down the Tubes… Sort of.

This is what my HSG looked like the first time… today, not so much.

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.

13 thoughts on “Down the Tubes… Sort of.

  1. My Perfect Breakdown

    I’m glad you didn’t find he HSG test that bad, I worried like crazy in anticipation of mine, but I too found it pretty painless.
    I always find the not-knowing the hardest, so I hope you can get into your RE asap and figure out your next steps.

    1. lyra211 Post author

      Yes, I remember having the same sort of anxiety before I had my first one! Now that I’ve been through induced labor and delivery and had a sonohysterogram and a hysteroscopy with no anesthesia, I’m so blase about it all. 🙂 They say you’re supposed to have someone drive you, but my husband was out of town, and so I just went on my own. Oh, we’re so battle-hardened!

      Yes, I hope I don’t have to wait too long for an appointment with the RE. Luckily I have a flexible schedule, especially now that it’s summer, so I can be there almost anytime they can squeeze me in. We’ll see! Thanks for your thoughts!

  2. theskyandback

    Ok, so the grey area is definitely sucky for sure, BUT you have answers! That is AMAZING. And like you said, you have insurance coverage, so if you have to do IVF you’ll be ok financially. I am completely not a doctor, but if your doctor tells you there’s an ectopic risk at the follow up, I might just go with IVF in order to avoid it. I know you wanted to try naturally, though, so I know that’s not an ideal solution for you. If you do end up going that route I swear it’s really not bad. It’s an emotional roller coaster (but you’re already on one anyway), but physically it was fine for me. Do you know yet when your appointment with the RE is? I will be thinking of you. I’m so glad you know what’s going on now.

    1. lyra211 Post author

      Thanks — I think you’re spot on with all of this. I do feel weirdly relieved to have answers, even if the answers are kind of crappy. But hey, if tubes are really my biggest problem at this point, at least there’s a very clear way forward with a high probability of success, and I feel really good about that. It’s very helpful to hear that IVF wasn’t too bad for you physically — I admit, I’ve been checking out some descriptions online, and people make it sound really scary. But then again, I should have learned my lesson with the HSG — these things are almost never as bad as the scary stories on the internet make them sound! Actually, I think the part of IVF I’m most nervous about is that my husband is super-squeamish, and I’m not sure he’d be able to get over his squeamishness enough to give me an injection. 🙂

      Honestly, at this point I don’t care about trying naturally anymore. I just want a freaking live baby, and if IVF is the most surefire way to get there, bring it on! As I’ve done more googling tonight, I’m starting to wonder if there might be an intermediate solution, since one of my tubes is not totally damaged — I think I might have a hydrosalpinx on the bad side, but if they block that up, I might be able to do superovulation on the good side. But then again, maybe I don’t want to mess around with even a slight chance of an ectopic pregnancy. We’ll see what the RE says (I’ll call first thing tomorrow to make the appointment).

      Thanks for your support, and for helping me to talk this through. I really appreciate it!

  3. Wifey

    I’m sorry that you had to go through this…not really the HSG, but the insensitive people and now the waiting to find out what the results really mean. I’m hopeful that your RE will be able to give you some encouragement and reassurance, however. Sometimes the technicians make things worse than they really are. After our egg retrieval I was convinced that the embryologist had basically said my eggs were black and rotten just because she sounded like a monotone robot. But, my doctor made me feel so much better and as it turned out, they were actually not black and rotten. 🙂

    1. lyra211 Post author

      Yes, you’re right that I do need to wait and talk to the doctor before worrying too much. I just wish they could get me in this week — when I called on Friday they said the first opening was June 2, but that if I called on Tuesday they’d see if they could squeeze me in if there was a cancellation.

      Your experience with the embryologist sounds terrifying! I’m so glad your doctor was able to interpret the results in a more balanced way for you.

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  5. Ulrike Ingram

    It is so frustrating to be in this waiting loop, but I am glad you got some answers and insight. We are in a similar situation. Diagnosis of possible blood clotting disorder that contributed to my daughter’s stillbirth. 3 miscarriages since then, but the repro endo doesn’t think they were caused by the blood clotting. Probably just due to “bad eggs” due to my age. Not very re-assuring. Hope you get an appointment soon….

    1. lyra211 Post author

      Oh, I’m so, so sorry about your three miscarriages since your stillbirth. How awful. Hopefully you’ll hit a “good egg” — have you gotten a second opinion just to make sure there’s no more testing that needs to be done? Were they able to check for chromosomal abnormalities to make sure that that was the cause?

      I managed to get an appointment for a week from today. They told me if I called this morning they might be able to squeeze me in sometime this week, but when I called they were frantically busy. Oh, well… I’ve waited this long, so I can wait another week! It’s just difficult knowing that something is wrong, but not knowing how bad it is or what the next steps are. Ah, well… it’s a busy week, so I’m sure the time will fly.

      Best wishes to you as you figure out your problems. I can’t imagine four losses in a row, and I’m amazed that you’re still managing to keep going. Sending you best wishes.

  6. newchancesnewhope

    Sorry to hear that the HSG wasn’t what you expected but there is lots that can be done. My friend had a very similar situation to yours and had to go through IVF – she had a baby girl who is now 2 and she’s just about to start IVF again for baby number 2. I really wish you all the best x

    1. lyra211 Post author

      Thank you. It’s really helpful to hear success stories from people who have been through similar things. We’ll see what the RE says on Tuesday, but I’ve very much come to terms with IVF if she recommends it — my priority is a living baby, and I don’t care how it gets here. Two years in, the natural stuff isn’t working for us, so maybe it’s time to go all out.

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