1/ This is a very, very long thread. 🧵
CW: medical issues, menstruation, blood
I’ve been going through some uterus-related problems for awhile - I'm fine!! But I’ve found a lot of comfort in reading about other people’s experiences and wanted to share mine...
CW: medical issues, menstruation, blood
I’ve been going through some uterus-related problems for awhile - I'm fine!! But I’ve found a lot of comfort in reading about other people’s experiences and wanted to share mine...
2/
...just in case it can help someone else. Even if it’s only to not feel so alone. Obviously, I am not a doctor. If you recognize yourself or your symptoms in any of this, I recommend speaking to your doctor about it. (Which I know is a privilege in and of itself.)
...just in case it can help someone else. Even if it’s only to not feel so alone. Obviously, I am not a doctor. If you recognize yourself or your symptoms in any of this, I recommend speaking to your doctor about it. (Which I know is a privilege in and of itself.)
3/
In September 2019 I went to my doctor because I wanted to stop menstruating, or at least lessen it significantly. Since 2016ish, my periods had gotten: heavier, more painful, longer, and more frequent. Basically, worse in every possible way!
In September 2019 I went to my doctor because I wanted to stop menstruating, or at least lessen it significantly. Since 2016ish, my periods had gotten: heavier, more painful, longer, and more frequent. Basically, worse in every possible way!
4/
I had super easy and light periods for most of my menstruating life. I must've internalized some misogynistic idiocy at some point that I now “deserved” to have worse periods as I was getting older. Which is some fucking bullshit and a lot to unpack.
I had super easy and light periods for most of my menstruating life. I must've internalized some misogynistic idiocy at some point that I now “deserved” to have worse periods as I was getting older. Which is some fucking bullshit and a lot to unpack.
5/
But, eventually I figured, it being the 21st century, there should be a solution for me to not loathe my existence for 25-50% of the time.
But, eventually I figured, it being the 21st century, there should be a solution for me to not loathe my existence for 25-50% of the time.
6/
An aside: I've been keeping track of my periods with the Clue app since July 2019. Since then, I've marked 45% of my days as having experienced some amount of bleeding (spotting through OMGWTF). FORTY-FIVE PERCENT of the last not quite two years. 🤯
An aside: I've been keeping track of my periods with the Clue app since July 2019. Since then, I've marked 45% of my days as having experienced some amount of bleeding (spotting through OMGWTF). FORTY-FIVE PERCENT of the last not quite two years. 🤯
7/
Knowing what I know now, of course, I would have insisted on seeing a gynecologist and having an ultrasound from the outset, but I didn’t know anything then and have suffered for it. Maybe even if I had just made it a point to clarify that the heavy, painful...
Knowing what I know now, of course, I would have insisted on seeing a gynecologist and having an ultrasound from the outset, but I didn’t know anything then and have suffered for it. Maybe even if I had just made it a point to clarify that the heavy, painful...
8/
...and frequent periods were relatively new in the general scheme of things? That might have made a difference and my doctor might have realized maybe something specific was causing that change.
...and frequent periods were relatively new in the general scheme of things? That might have made a difference and my doctor might have realized maybe something specific was causing that change.
9/
In either case, I didn’t, and we focused on treating the heavy periods starting with the least invasive possible solution, which was a birth control pill (specifically, norethindrone-e.estradioL-iron, also known as Junel).
In either case, I didn’t, and we focused on treating the heavy periods starting with the least invasive possible solution, which was a birth control pill (specifically, norethindrone-e.estradioL-iron, also known as Junel).
10/
The plan was for me to take it, but skip the placebo weeks, with the end goal being no more periods! Unfortunately, the pill caused me to bleed the entire month of October 2019 and increased my blood pressure significantly.
The plan was for me to take it, but skip the placebo weeks, with the end goal being no more periods! Unfortunately, the pill caused me to bleed the entire month of October 2019 and increased my blood pressure significantly.
11/
So, we decided to try an IUD (Mirena) instead. The IUD started out great! Placement was in November 2019, and in April 2020, I didn't have a period at all! MY DREAM! 😍
But then, things got weird and gross and exhausting. 😖😭🤬
So, we decided to try an IUD (Mirena) instead. The IUD started out great! Placement was in November 2019, and in April 2020, I didn't have a period at all! MY DREAM! 😍
But then, things got weird and gross and exhausting. 😖😭🤬
12/
I had a short period at the beginning of May 2020 and a long, distressing, large-blood-clot-filled period at the end of that same month. Followed, less than two weeks later!, by a longer period in June (though thankfully without any blood clots).
I had a short period at the beginning of May 2020 and a long, distressing, large-blood-clot-filled period at the end of that same month. Followed, less than two weeks later!, by a longer period in June (though thankfully without any blood clots).
13/
July was much like June, August was filled with low-level spotting for almost the entire month. And then two weeks later (on Labor Day, which I continue to find hilarious) I had another bout of ALL THE CLOTS.
July was much like June, August was filled with low-level spotting for almost the entire month. And then two weeks later (on Labor Day, which I continue to find hilarious) I had another bout of ALL THE CLOTS.
14/
Luckily I was at home and could change my pants 5 times in one evening since the bleeding just would. not. stop.
Luckily I was at home and could change my pants 5 times in one evening since the bleeding just would. not. stop.
15/
At this point I was thinking, maybe I'll have a few light months and then one big, terrible period a few times a year? And maybe my body still needed to adjust to the IUD and settle into it. So I'd give it more time and see if a specific pattern emerged.
At this point I was thinking, maybe I'll have a few light months and then one big, terrible period a few times a year? And maybe my body still needed to adjust to the IUD and settle into it. So I'd give it more time and see if a specific pattern emerged.
16/
Also, at this point, I remember specifically asking myself, "Why have I not passed out yet?" I felt like I was losing a significant amount of blood, but I didn't really feel lightheaded or dizzy. I was exhausted, which seemed appropriate...
Also, at this point, I remember specifically asking myself, "Why have I not passed out yet?" I felt like I was losing a significant amount of blood, but I didn't really feel lightheaded or dizzy. I was exhausted, which seemed appropriate...
17/
...but I wonder if I had felt lightheaded or dizzy if I would have gone in to see a doctor sooner?
...but I wonder if I had felt lightheaded or dizzy if I would have gone in to see a doctor sooner?
18/
I did make a note on my phone about everything in case I did pass out and my fella needed to get me to the hospital but didn't know what to tell them was happening exactly. Yeeeeeaaahh, thinking back on that now, clearly I should have gone to see a doctor sooner. Whoops.
I did make a note on my phone about everything in case I did pass out and my fella needed to get me to the hospital but didn't know what to tell them was happening exactly. Yeeeeeaaahh, thinking back on that now, clearly I should have gone to see a doctor sooner. Whoops.
19/
In October, not only was my flow heavy AF again (and very clot-laden), but I also started having really, really terrible cramps. Pre-2016ish, my cramps were basically a twinge I felt in my lower back for half a day and that was it. When they started getting worse...
In October, not only was my flow heavy AF again (and very clot-laden), but I also started having really, really terrible cramps. Pre-2016ish, my cramps were basically a twinge I felt in my lower back for half a day and that was it. When they started getting worse...
20/
...they lasted for a full day or more, but I could manage them with ibuprofen. In October there were a few instances where I couldn't even stand up straight and a steady stream of ibuprofen was not helping ease anything.
...they lasted for a full day or more, but I could manage them with ibuprofen. In October there were a few instances where I couldn't even stand up straight and a steady stream of ibuprofen was not helping ease anything.
21/
November was even worse! And THEN!! Spontaneous IUD expulsion! In the bathroom at work, even. 0/10 - would not recommend. Of the traumatic medical experiences I've had in my life (which aren't a lot compared to some, but certainly not nothing), this ranks at #1.
November was even worse! And THEN!! Spontaneous IUD expulsion! In the bathroom at work, even. 0/10 - would not recommend. Of the traumatic medical experiences I've had in my life (which aren't a lot compared to some, but certainly not nothing), this ranks at #1.
22/
However! I immediately felt better after the IUD came out and thought maybe my uterus was like, nah fam, and had just been working to expel it for a few months hence the pain, heavy flow, blood clots, etc.
However! I immediately felt better after the IUD came out and thought maybe my uterus was like, nah fam, and had just been working to expel it for a few months hence the pain, heavy flow, blood clots, etc.
23/
So, I figured I'd let my body readjust without the IUD and see what happened with my periods. December's period saw a significant decrease in the pain and blood clots, though it was still heavy, and much longer than "normal".
So, I figured I'd let my body readjust without the IUD and see what happened with my periods. December's period saw a significant decrease in the pain and blood clots, though it was still heavy, and much longer than "normal".
24/
In January I had two consecutive days where I bled so much so quickly that I completely soaked through the largest-overnight-sized pads, my jeans, and the sweatshirt I sat on for the early drive home, since it happened at work, which was just a fucking nightmare.
In January I had two consecutive days where I bled so much so quickly that I completely soaked through the largest-overnight-sized pads, my jeans, and the sweatshirt I sat on for the early drive home, since it happened at work, which was just a fucking nightmare.
25/
On the second day, when I got home, I immediately called the doctor's office to try to schedule an appointment. I hadn't done so at all previously, because I was going with the wait-and-see approach, and also, COVID.
On the second day, when I got home, I immediately called the doctor's office to try to schedule an appointment. I hadn't done so at all previously, because I was going with the wait-and-see approach, and also, COVID.
26/
In late January, I had my long overdue appointment, was referred to a gynecologist and had some blood tests done. Surprise! Turns out I had become anemic, which made a lot of sense actually.
In late January, I had my long overdue appointment, was referred to a gynecologist and had some blood tests done. Surprise! Turns out I had become anemic, which made a lot of sense actually.
27/
I’d been experiencing a lot of fatigue, abnormally cold hands and feet, occasionally fast heartbeat, and shortness of breath. Honestly, at the time I figured all of that was just due to pandemic stress, anxiety, and depression. You know, "pandemic fine".
I’d been experiencing a lot of fatigue, abnormally cold hands and feet, occasionally fast heartbeat, and shortness of breath. Honestly, at the time I figured all of that was just due to pandemic stress, anxiety, and depression. You know, "pandemic fine".
28/
Instead, it was iron deficiency anemia (due to menstrual blood loss). The whole time I was experiencing increasingly heavy menstruation and so many blood clots, and also feeling exhausted, it had not occurred to me that it would all be related.
Instead, it was iron deficiency anemia (due to menstrual blood loss). The whole time I was experiencing increasingly heavy menstruation and so many blood clots, and also feeling exhausted, it had not occurred to me that it would all be related.
29/
Maybe because I was not getting enough oxygen to my brain due to the anemia? Hahaha. But no, really, that is very likely.
Maybe because I was not getting enough oxygen to my brain due to the anemia? Hahaha. But no, really, that is very likely.
30/
All the webpages I’d visited trying to find any sort of at-home remedy for heavy menstruation mentioned possible anemia and I just ignored them because I wasn’t feeling dizzy or lightheaded.
All the webpages I’d visited trying to find any sort of at-home remedy for heavy menstruation mentioned possible anemia and I just ignored them because I wasn’t feeling dizzy or lightheaded.
31/
I don’t understand why I had it stuck so strongly in my head that dizziness would be THE symptom and if I didn’t have that, it couldn’t be anemia.
I don’t understand why I had it stuck so strongly in my head that dizziness would be THE symptom and if I didn’t have that, it couldn’t be anemia.
32/
After the bloodwork came back and I mentioned that I was due to start my next period (rather than having just recently finished one), my doctor prescribed iron supplements (325mg twice a day), and tranexamic acid (Lysteda) to help with the menstrual blood loss.
After the bloodwork came back and I mentioned that I was due to start my next period (rather than having just recently finished one), my doctor prescribed iron supplements (325mg twice a day), and tranexamic acid (Lysteda) to help with the menstrual blood loss.
33/
The iron supplements helped immediately. It was a stark difference. I felt like I could actually think somewhat clearly! I was (am) still tired, but it feels "regular" in comparison.
The iron supplements helped immediately. It was a stark difference. I felt like I could actually think somewhat clearly! I was (am) still tired, but it feels "regular" in comparison.
34/
Like, maybe if I can get two or three good nights of sleep in a row I might wake up feeling refreshed! Before, it felt like I was basically just doomed to feel tired and fatigued every day forever and ever.
Like, maybe if I can get two or three good nights of sleep in a row I might wake up feeling refreshed! Before, it felt like I was basically just doomed to feel tired and fatigued every day forever and ever.
35/
My gynecologist appointment was at the end of February. I had a transvaginal ultrasound first and it revealed that I had fibroids. The doctor relayed to me that the ultrasound technician couldn't distinguish how many there were, or what type they were...
My gynecologist appointment was at the end of February. I had a transvaginal ultrasound first and it revealed that I had fibroids. The doctor relayed to me that the ultrasound technician couldn't distinguish how many there were, or what type they were...
36/
..."it's just all fibroid in there". I was incredibly relieved to have an answer. Especially one that wasn't cancer, even though fibroids are tumors.
..."it's just all fibroid in there". I was incredibly relieved to have an answer. Especially one that wasn't cancer, even though fibroids are tumors.
37/
We discussed treatment options, and decided on Uterine Fibroid Embolization. Even though it requires less recovery time than a hysterectomy, or myomectomy, I still didn't have the time to take off work until this past week.
We discussed treatment options, and decided on Uterine Fibroid Embolization. Even though it requires less recovery time than a hysterectomy, or myomectomy, I still didn't have the time to take off work until this past week.
38/
Which was kind of terrible. I went through another 4 periods, but only had 3 periods' worth of tranexamic acid, which did help some with reducing the bleeding, and as a result I didn't have any additional surprise soak-throughs, thank goodness.
Which was kind of terrible. I went through another 4 periods, but only had 3 periods' worth of tranexamic acid, which did help some with reducing the bleeding, and as a result I didn't have any additional surprise soak-throughs, thank goodness.
39/
Each time I just had to keep reminding myself that it would be over soon. However, each time also somehow felt worse than the last? It's really overwhelming to consider now that I'm post-procedure. How did I even manage it? I honestly don't know.
Each time I just had to keep reminding myself that it would be over soon. However, each time also somehow felt worse than the last? It's really overwhelming to consider now that I'm post-procedure. How did I even manage it? I honestly don't know.
40/
Last Monday I had a pelvic MRI. The MRI was able to discern that I had 4 fibroids - 3 intramural and relatively small at 11-17mm. The fourth was large (5.3 x 3.5 x 4.1cm) and pedunculated, so it's basically just hanging out in my endometrial cavity.
Last Monday I had a pelvic MRI. The MRI was able to discern that I had 4 fibroids - 3 intramural and relatively small at 11-17mm. The fourth was large (5.3 x 3.5 x 4.1cm) and pedunculated, so it's basically just hanging out in my endometrial cavity.
41/
I went in this past Wednesday for the UFE, and beforehand the interventional radiologist came to discuss the MRI results. He started by drawing a diagram on the white board in my room, and I asked if I could see the actual MRI images. He seemed quite happy...
I went in this past Wednesday for the UFE, and beforehand the interventional radiologist came to discuss the MRI results. He started by drawing a diagram on the white board in my room, and I asked if I could see the actual MRI images. He seemed quite happy...
42/
...to go over them with me, which was nice. And to my surprise, the diagram he drew was exactly what was going on with my uterus, which was comforting to realize.
...to go over them with me, which was nice. And to my surprise, the diagram he drew was exactly what was going on with my uterus, which was comforting to realize.
43/
Seeing the large AF fibroid basically filling my entire uterus was also comforting in a way. Being able to point to something and say, "Aha! You're the culprit!" is helpful. Especially since I've felt very lost and miserable about this for so long.
Seeing the large AF fibroid basically filling my entire uterus was also comforting in a way. Being able to point to something and say, "Aha! You're the culprit!" is helpful. Especially since I've felt very lost and miserable about this for so long.
44/
I was under moderate sedation for the procedure. If I could have seen the images the doctor was using to guide the catheter through my artery to block the blood flow to the fibroid, I probably would have stayed up, but I couldn't (reasonable), so I slept through most of it.
I was under moderate sedation for the procedure. If I could have seen the images the doctor was using to guide the catheter through my artery to block the blood flow to the fibroid, I probably would have stayed up, but I couldn't (reasonable), so I slept through most of it.
45/
They did have music on, and asked if it bothered me, which it did not. Actually, it reminded me of that scene in Doctor Strange where he names the album a song is from and year it was released, and that was also comforting.
They did have music on, and asked if it bothered me, which it did not. Actually, it reminded me of that scene in Doctor Strange where he names the album a song is from and year it was released, and that was also comforting.
46/
And there was a nursing student shadowing my nurse during the procedure, which was also helpful since they were discussing things that I might not have otherwise been privy to. Everyone involved felt very competent and comforting.
And there was a nursing student shadowing my nurse during the procedure, which was also helpful since they were discussing things that I might not have otherwise been privy to. Everyone involved felt very competent and comforting.
47/
I was away from my room for about an hour and a half, which included all the prep, the procedure, and then post procedure stuff (like holding the closure for 5 minutes before putting on the dressing).
I was away from my room for about an hour and a half, which included all the prep, the procedure, and then post procedure stuff (like holding the closure for 5 minutes before putting on the dressing).
48/
Because the doctor accessed my artery through my groin, I had to lay straight and not move my leg or lift my head for 2 hours afterward. The nurse tilted my bed so I was technically not breaking the rule, but could also eat and drink.
Because the doctor accessed my artery through my groin, I had to lay straight and not move my leg or lift my head for 2 hours afterward. The nurse tilted my bed so I was technically not breaking the rule, but could also eat and drink.
49/
My fella graciously fed me a Caesar salad and helped me with sips of water, which were glorious (having not been able to drink anything since the night before).
My fella graciously fed me a Caesar salad and helped me with sips of water, which were glorious (having not been able to drink anything since the night before).
50/
The doctor came in to show us the pictures of the procedure. The fibroid showed high vascularity, which made sense with regard to all of the bleeding. He was able to block off the blood flow on both sides, so it should shrink and my symptoms will ideally disappear over time.
The doctor came in to show us the pictures of the procedure. The fibroid showed high vascularity, which made sense with regard to all of the bleeding. He was able to block off the blood flow on both sides, so it should shrink and my symptoms will ideally disappear over time.
51/
About 3.5 hours after the procedure, I was able to go home. We picked up my prescriptions (some heavy duty painkillers, anti-nausea medicine and an anti-inflammatory) and I've mostly just been sleeping the last few days.
About 3.5 hours after the procedure, I was able to go home. We picked up my prescriptions (some heavy duty painkillers, anti-nausea medicine and an anti-inflammatory) and I've mostly just been sleeping the last few days.
52/
I'm not experiencing a ton of pain, and Kyle's been absolutely fantastic in making sure I have everything I need. Walking hurts most, but is also recommended to ease back into normal activities. I took the dressing off yesterday and the puncture site is miniscule!
I'm not experiencing a ton of pain, and Kyle's been absolutely fantastic in making sure I have everything I need. Walking hurts most, but is also recommended to ease back into normal activities. I took the dressing off yesterday and the puncture site is miniscule!
53/
Of course, since I'm in the United States, this is costing a lot of money and will use up all of my deductible/out-of-pocket costs this year. The silver lining I suppose is that I'll be able to avail myself of other wellness visits this year and my insurance will cover it.
Of course, since I'm in the United States, this is costing a lot of money and will use up all of my deductible/out-of-pocket costs this year. The silver lining I suppose is that I'll be able to avail myself of other wellness visits this year and my insurance will cover it.
54/
I plan on adding more information to this thread as my next periods happen, hopefully they will be manageable and not the elevator doors from The Shining.
I plan on adding more information to this thread as my next periods happen, hopefully they will be manageable and not the elevator doors from The Shining.
55/
And here are some hashtags for the thread as a whole: #Fibroids #UterineFibroidEmbolization #UFE #Menstruation #PeriodClots #M4A #MedicareForAll
And here are some hashtags for the thread as a whole: #Fibroids #UterineFibroidEmbolization #UFE #Menstruation #PeriodClots #M4A #MedicareForAll
56/
Also, since this was long AF, @threadreaderapp unroll
Also, since this was long AF, @threadreaderapp unroll
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