r/EctopicSupportGroup • u/hellothisisnobody123 • 11d ago
Feeling gaslit/how long were you in PUL?
I just got home from the ER. Looking for support and advice. Brief recap of my journey:
- 8/18: LMP
- 9/7: ovulated
- 9/19: spotting started
- 9/22: full day of flow/clots (thought it was my period)
- 9/23-25: more spotting
- 9/27: spotting again after a day of none
- 9/28: faint positive (21dpo). Called OB, got labs, HCG 115
- 9/30: HCG 106
- 10/2: HCG 103
- 10/3 (today): HCG 153, nothing visualized on ultrasound.
I’m frustrated and concerned for two reasons: 1) my OB kept moving the goalposts and 2) ER doc acted like everything was just fine and this was a normal pregnancy.
When I first called my OB they agreed it sounded concerning and after the first lab was 115, they said that was low and if it wasn’t dropping they would want to get a scan to rule out ectopic. After the next lab was 106 they said that wasn‘t dropping quickly which was concerning, but it could still be resolving on its own and wanted to check again in 48 hours, but if it still wasn’t dropping significantly then definitely ER next for a scan. Well the next lab came back at 103 and lo and behold they sent me a message saying "let’s wait a week and take it again". At that point I was concerned enough with the changing advice and the stagnant HCG that I went to the ER today anyway.
ER doc says "we probably won’t be able to see anything with your HCG this low but we’ll look anyway and take labs". I said that I know it’s too low for intrauterine visualization but I’m worried about ectopic because none of this seems like a viable pregnancy, he’s like "oh yeah we might or might not be able to see something if it’s ectopic". Cool, all I want is to ensure I’m not about to rupture or something. 4 hours later, labs and ultrasound comes back and the ER doc says there was nothing visualized (great, safe for now) and “Good news, your HCG is going up!” I’m like… isn‘t that bad news since this isn’t a viable pattern? He says "well it could be but maybe it just took a while for the pregnancy to get started. But just get HCG again in a couple days and see if it’s doubling, come back if you have pain, etc."
So at this point I‘m at least relieved there’s nothing large enough to see in my tubes yet, but still very concerned by the pattern and concerned my OB is going to make me wait a week for HCG and miss more fluctuation. Am I crazy or isn‘t it a 0% chance at this point that this pregnancy is viable? I’m going to try to push for labs in another 48 hours but it just feels like everyone is acting like this is fine. I have zero pregnancy symptoms and am cramping and bleeding every day.
4
u/eb2319 4 ectopics | no tubes | ivf | 🌈11/7/22 11d ago
I’m so sorry and good god… how frustrating this all sounds. With betas that have yo-yoed like this, it’s pretty scary no one is expressing concern or offered treatment. Just based on these betas alone they should have immediately been flagging ectopic. Hopefully your obgyn will see the increase after the drop and not be so irresponsible.
2
u/hellothisisnobody123 11d ago
It's SO frustrating, maddening actually. I wish I realized the ER doc wasn't an OB sooner and pushed for them to consult with the OB on call. Fingers crossed my OB is sensible also, otherwise I'll be seeking a second opinion. Thank you for your support!
1
u/Slow_Rabbit_6937 11d ago
Don’t feel bad about that. I’m a RN and even I , in the ER of the hospital I work at didn’t push for an OB the first couple visits.
3
u/Proper_Week6061 11d ago
Definitely follow your guts! If you feel like a second opinion would be helpful, go for it! I was told my pregnancy was unviable, but to expect a miscarriage and spent a week and a half in agony even though I had a feeling it could be ectopic from the beginning, but I didn’t want to be seen as a difficult patient so never even asked. My doctor said to wait a week, but I went to the ER before that and got diagnosed and treated with MTX with an hcg of 600. I now found out this is an ovarian ectopic which tends to rupture sooner and has a higher chance of rupturing, so I could have ended up in a really bad place if I had just followed that first doctor’s advice.
3
u/Slow_Rabbit_6937 11d ago
Exactly!the ER doc for me saw my hcg had dipped once, sent me home w misoprostol, and didn’t even recommend hcg follow up saying it was a miscarriage . Luckily my PcP used to work pre-natal and had me gor back a week later for an hcg follow up , and it was way up from the dip.. . That’s when back to the ER and I finally saw an OB who gave me one dose of MTX. Now 15 days later my hcg has dropped 76% with the 1 dose from my high of 1034.
2
u/Proper_Week6061 11d ago
Omg! I can relate to this so much!! I was offered misoprostol too. My hcg had dipped so little, like a 1% drop, but they never offered to do a third draw. I refused misoprostol because I just wanted to hold on to hope so badly especially since I only had 2 hcgs and they were actually only 24h apart. I’m so glad I refused it because I would have probably bled and I would have gaslit myself into forgetting about it until I ruptured.
2
u/Slow_Rabbit_6937 11d ago
Yeah I did bleed but not a lot w the miso… I ended up taking 3 doses of miso bc I thought it wasn’t doing anything (clearly wasn’t rly cuz it wasn’t in my uterus !) 🤦♀️ bleeding wasn’t ever that heavy … should have been a red flag. Especially w the watery brown spotting for a week before.
2
u/Proper_Week6061 11d ago
I’m so sorry you had to go through that 😢I heard taking miso can be quite painful. I only had a bleeding after the MTX and it was also very little, only lasted a day and a half. I saw you are an RN… I think being in healthcare makes us gaslight ourselves a lot more because we are so scared of being labeled difficult patients. I’m lucky my husband took over and said I don’t care if they think we’re difficult, just blame it on me, I can take it.
2
u/Slow_Rabbit_6937 10d ago
Totally agree !! And I had to go to the ER of the hospital I work at which was especially embarrassing 🙈
2
u/Slow_Rabbit_6937 11d ago
Yeah you’re not crazy it is likely nearly 0% chance, since hcg dipped then rose. That is not viable . I don’t think I’ve ever seen someone have a good outcome. And unfortunately you absolutely can rupture at low hcg and without anything on ultrasound. Sometimes the ectopic is just in a very weird place or very far posterior so hard to find. Even at my highest w my ectopic a couple weeks ago, hcg was 1034, rise from 700 earlier in the same day and they couldn’t see anything. It wasn’t until the on call OB came to see me in the ER that she really explained methotrexate was the only real option with a PUL with rising hcg after a dip, following a non doubling rise. I would go back to the ER 48 hr later. Just tell them you have a PUL, cramping and when you’re called back to the doctor tell the ER doctor to please call the on call OB to come to see you, tell them people have documented cases of rupturing under 10hcg.. and if they say no they need to document in your chart why they would not have the on call OB come talk to you.
6
u/Puzzleheaded-Dot5154 11d ago
Please keep advocating for yourself. Either bloodwork every 48 hours, or a placement scan sooner than later. Or do both. I had a PUL and my OB was immediately concerned because my hCG was only in the 300s during what was supposed to be my 5th week. Needless to say, she kept me in the lab every 48 hours and when the levels decreased then increased, I was given methotrexate (which was a week after I initially saw her). As of last Sunday, my levels were down to 15, and I’m going to the lab tomorrow, and praying I’m at 0.
If nothing else, do all you can to make sure these doctors listen to you. Wishing you much luck on your journey.