DIARY

I Lost My Fallopian Tube From An Ectopic Pregnancy, And I Don’t Think I Had To

This is a sad post, so here is a happy picture.

Since I last posted about what I thought was a miscarriage, my medical situation has gotten pretty significantly worse, and even though right now I’m laying in bed with bandages all over my torso and can’t really move, I wanted to write about this because for some reason doing so is functioning as a kind of in-real-time therapy for me. And also because I had no idea that what happened to me over the past week could happen, and it didn’t have to, and I’d really like it to not happen to anyone else.

I went to the ER on Thursday morning on the insistence of my friend Erin, who said she thought – based on the fact that I’d been having mid-cycle bleeding and cramping for a few days – that I was having an ectopic pregnancy. They took an ultrasound, said that I was probably having a normal (uterine) pregnancy, and sent me home. I returned a few hours later in intense pain. They checked my hormone levels, said that I was having a miscarriage and that the pain was probably from something else – like kidney stones, maybe – gave me some painkillers, and sent me home again.

And then yesterday my (wonderful, on-top-of-it) OB decided that the fact that I was still in pain and still bleeding (not to mention seriously swollen) was too weird, and scheduled a repeat ultrasound. We found out I had a 7cm blockage in my right Fallopian tube, and was bleeding internally (and was anemic, with dropping hemoglobin levels), and I went into emergency surgery.

When I woke up, I learned that I’d lost my right Fallopian tube, and that the other tube had significant scarring. Translation: I likely won’t be able to get pregnant naturally ever again. This didn’t have to happen. I made this video in hopes that it’ll stop it from happening to someone else.

  • Tess

    I don’t know what to say, except that I am so, so sorry this happened to you and f*ck that stupid ER that sent you home with a, “oh, it will get better sometime and in the meantime here are some pain meds”. And as my 2 year-old daughter would say: big hearts (her word for hugs).

  • Stephanie

    I’m asking this because I honestly don’t know and because I feel like everyone I know who has had an eptopic pregnancy has lost a Fallopian tube.. is there something they could have done at the ER beyond the ultrasound that would have detected it? From the sounds of it, it was too small to pick up with that first ultrasound? Or you had a bad tech?

    • jordanreid

      my understanding is that if you catch this early enough (presumably before it ruptures…?) it’s a pretty easy fix – they just give you medication. a friend of mine had this and went on medication and didn’t lose her tube. I guess it was too small to see on the first ultrasound, but you’d think that when I returned with those extreme symptoms (which definitely point to an ectopic, combined with the bleeding and cramping I’d been experiencing previously) they’d either call in an OB or do another ultrasound, or something; it seemed pretty ridiculous that I’d have kidney stones at the same time as a miscarriage, and I’m not sure why I was the only one who thought so. what frustrates me is that I was there well before the rupture (and during the rupture) and no one caught it.

    • Sasha

      Yes, if the ectopic pregnancy is caught before the tube ruptures, a medicine called methotrexate is used to stop the pregnancy growing. Also, since that terminates the pregnancy, some Catholic hospitals will not offer that treatment as long as the embryo shows cardiac activity. https://www.scpr.org/blogs/health/2016/01/13/18103/some-catholic-hospitals-limit-treatment-for-pregna/
      But that is a whole other kettle of fish.

  • Hope Varnedoe

    I’m so so sorry Jordan. My heart goes out to you. I have heard too much of ER misdiagnosis. It’s like they just want to get rid of the patients and free the bed up. I hate that you were a casualty of that mindset. It makes me so angry.

  • shilpi

    Well, that is terrifying, I am so sorry. Most terrifying is that thought that if you had just followed the ER’s guidance you may have lost your life. Amazing OB!

    • jordanreid

      yeah, this condition is no joke – super scary. I agree – thank god for her.

  • Heidi

    Words fail me. I am so sorry this happened to you and how scary.

  • Becca Mitrisin

    Oy oy oy I am sorry you had to go through all this. Its truly unbelievable how many people I know for every condition under the sun have gone for help and walked away from medical professionals completely wrong. Definitely agree you have to be your own advocate. Its easier said then done sometimes. Big hugs here.

  • Penelope Herbert

    So sorry! My best to you and your family. They must have been very scared to see you in this situation. Hope you’re back on your feet soon.

  • Beffgus

    I’m so so sorry. 🙁

  • Chantal

    I’m so sorry this happened to you! Your strength and courage are so inspiring — you will definitely help others (I know I learned something from your honestly)! Sending lots of love from NYC. Xo

    • jordanreid

      <3 Thank you, Chantal.

  • Sasha

    I am so sorry, Jordan. It is so important to have an advocate for yourself in medical situations when you are not given a clear dignosis- a friend of mine was sent home from ER twice when she was in worst pain of her life from a bowel obstruction with some pills. Lots of love and virtual hugs to you and your family from an internet stranger who reads here.

  • Jaime

    I am an ER doctor and am going to give my 2 cents. I couldn’t watch your video at the moment so apologies if I miss something. From what I read, it seems like your initial care was appropriate. Early pregnancy bleeding/cramping… we see this all. the. time. Every day. Ectopics are always a worry, which is why we do the hormone level and the ultrasound. It is also extremely common for the ultrasound to be non-diagnostic; it’s just to early to see anything, and the tubes/ovaries look fine. I’m guessing your initial US was done by a technician, not the ED doc (we are generally qualified to rule IN intrauterine pregnancies but not rule OUT an ectopic in the absence of seeing an intrauterine preg). If that was the case, the quality of the study was as good or better as what an OB would do bedside. When we don’t see a pregnancy or any secondary evidence of an ectopic, we track hormone levels. Again, appropriate care. No one would have given you methotrexate at that point because it may still be an early but normal pregnancy.

    The place where it seems like things went off the rails slightly (and I hesitate to monday-morning quaterback my peers and do so with the disclaimer that I wasn’t seeing what they did/didn’t examine you etc) is when you returned with severe pain. Cramping, achy, lower pelvic pain is normal. One-sided, more severe pain is NOT. The kidney stone thing… makes no sense to me.

    I’m sorry you lost your tube and had to go through surgery. That sucks, and is *sometimes* unnecessary. Although in a case like yours (severe, localized pain and can’t confirm IUP) the next step would be to take a look laparoscopically and deal with an ectopic if found, which often claims the tube.

    It can be hard to advocate for yourself in medical situations. To those in similar circumstances, where you really believe something is just not right, ask the ER doc ‘what are the worst things you can think of that would explain my pain? How do we know it’s not those things? What if it is X and it is not diagnosed tonight? What should I be looking for?”

    I feel like it’s important to tell you too how often I see patients and DON’T find the source/reason for their pain. Please don’t feel like we don’t care, aren’t doing enough testing, or don’t believe you. Our job is to rule out the emergent stuff, things that need surgery, antibiotics, etc. You might still need more testing/follow-up when you leave the ER. (This is not in regards to Jordan’s case, just in general)

    To those who think the ER is staffed by uncaring f*ks just trying to move the meat… you’re wrong and you’re not. We are trying to turn over the beds, absolutely. If I can’t do that, I can’t pull your family member back from the waiting room. I can’t see the ambulance who brings in the patient with a stroke or heart attack. We are tracked and held to a maddening slew of metrics: door-to-doc time, door-to-disposition time, patients per hour, whether I’ve told you to stop smoking and get your high blood pressure checked, etc. Trust me, we hate it more than you do. We’d much rather sit down and have true conversations with you than be running room to room and clicking our way through hours of computer charts. We are sometimes callous, sometimes cynical. We don’t mean to be. We see too much; too many dead babies, beaten children, beautiful 25 year olds with massive hemorrhagic strokes who will never wake up, people who are dying and don’t deserve to be. We suppress to survive. What allows us to keep functioning as doctors sometimes does not make us the best humans. I promise we are trying. I promise that we, like all humans, miss things, and if you think we did, please come back to the ER. I promise that I will be working next Christmas, as I have for years, that I will be working overnight shifts, as I was until my 39th week of pregnancy, that I will be trying to turn my residents into good and compassionate people.

    And for what it’s worth, Jordan, I’m sure the doc who sent you home (inappropriately) from the ER will be obsessing/regretting it for a long time. I’m sure she learned from it. Those patients, and our shortcomings in caring for them…. they haunt us.

    • jordanreid

      Ah, Jaime, thank you so much for writing this. I am in awe of women and men who are capable of working in ERs, and I’m certain that they’re on the receiving end of a whole lot of crap on a daily basis – beyond the emotional traumas that you mentioned, I’m sure they get blamed for a whole host of things that aren’t their fault in the slightest, mostly because people who are in pain often aren’t seeing straight. I don’t want to contribute to that atmosphere at all – for the most part the nurses I interacted with were lovely, and caring. There were a couple who ignored my pain and even got annoyed with me for asking for medication, which felt embarrassing at the time. And I do think that a ball was dropped when I returned in extreme pain located on one side (which was exactly what I’d been told to look out for on my first trip) and wasn’t immediately seen by an OB or even really checked again for an ectopic, but of course nobody meant for this to happen. I am planning on speaking to an attorney, but I also hate the idea of being *that* person, so I’m very conflicted – I probably will at least speak to someone because I do think there was a major flaw in my care that resulted in permanent damage, but…I don’t know. This is tough. Really, truly, I take your words to heart. Thank you.

    • Allison Crawford

      Thank you so much for your insight

  • S S

    I’m so sorry this was the outcome of your situation, Jordan. It’s one thing to have to go through a life threatening ailment, but another to lose your fertility in the process, and another still to feel like you haven’t been listened to or trusted to know your own body.

    Obviously, your care is something to discuss with your doctor and I don’t want to give any false hope, but if they had any doubt at all about the extent of the scarring on your remaining tube, maybe see if you can have a hysterosalpingogram once you’ve recovered. It’s a test that can check whether the other tube is blocked.

    Again, thank you for making these videos – They’re the kind of thing that would’ve helped me during my ectopics two years ago so I know they will help others ❤️ Sending big love your way!

  • Tara Wilkins

    This is awful; I am so sorry that you and your family are dealing with this! I’ll send lots of prayers from this side of the country. Thank you so much for sharing this journey with us; you never know which one of us this will directly affect. Feel better so soon!

  • Dena

    Echoing want everyone else has said: thank you, thank you, thank you for talking about all of this. Your candidness helps to normalize what so many women go through (or have anxiety about going through), encouraging us to talk about it more and get the support we need. This is by far one of the most responsible ways for anyone with a platform like your to use it, and I deeply, deeply respect your choice to do so.

    Just – thank you. If the other women reading this are anything like me, they have been inspired to talk more openly about their health, choices, and fears with the people around them. I have no doubt that the people I have talked to have been inspired as a result of those convos, too.

    Edit: also those cats are f**cking cute.

  • Jo

    I am so sorry you experienced this. There is no need to justify feeling sadness at what this means for your future ability to conceive “naturally”. Whether you knew for sure you ever wanted to or not, even though women experience this who don’t have 2 healthy children, etc. Emotions don’t tend to care about all of that real life stuff. I hope you feel the freedom to feel and grieve as you need to without apology xxx

  • Heather Thur

    I don’t comment often but I do follow and want to send you some virtual hugs. A heartwrenching experience, glad that you will be ok and are in good hands with your cute little caregiver.

  • I’m so sorry you had to go through this. We certainly have to be our own advocates! Thank goodness your doctor listened.

  • JamieC

    I am so sorry you are going through this. I am going through the same thing other then I went to the ER and the ultrasound tech believed it was ectopic but my ob did not and they sent me home. They monitored my hcg and said I was having a miscarriage and did a d&c then 5 days later was rushed into surgery. They were able to save my tube but ended back up in the er today with blood clots in the tube they were concerned about. I wish you all the best in your recovery.

    • jordanreid

      oh no, Jamie, I am so sorry to hear this. please keep me updated on how you’re doing – will be thinking of you.

      • JamieC

        Unfortunately things did not turn out well. I was in extreme pain Sunday night and my doctor said I needed to go back to the ER and get re-evaluated. The area of concern was getting larger and my tube they tried saving was slowly leaking blood into my belly and was causing all of the pain. So they told me my best option was just to go in and remove it. So I had surgery last night to remove my left tube. It has been a crazy couple months and hoping going forward it gets better

        • jordanreid

          oh Jamie, I am so sorry. the recovery process isn’t easy, but – speaking as someone who’s one week out – just REST, REST, REST and let yourself peace out from the world for awhile. and please let people take care of you – I find that very difficult, but it’s made such a difference, saying “yes” when friends offer to help.

  • Kathy Cypert

    I’m so sorry this happened to you. About 30 years ago I also had an ectopic pregnancy. My Dr. was a pioneer in laparoscopic surgery and I was one of the first to have it at a major hospital in Dallas, Texas. My left tube was gone and my right tube was scarred. A few months after the surgery my Dr. ordered a hysterosalpingogram. Long word for an Xray of your female parts with dye. The radiologist showed me the xray which as he said showed so much scarring my uterus was out in left field. My gynecologist did surgery (day surgery) to remove uterine adhesions and did something at the opening of the tube. The surgery was in October and I was pregnant by the end of November. Do not give up hope.

    • jordanreid

      Kathy, I’m so sorry you went through this as well – but what a wonderful ending to your story. That makes me so, so happy to hear. <3 <3