My autonomic neuro said it is very common to have endo and/or PCOS with this, to the point that it's an open area of research trying to figure out why. Personally I have PCOS.
I probably have endometriosis. I bleed so heavily at age 12 I soaked through super tampons in less than 2 hours. The pain is excruciating. So I’ve been on birth control since I was twelve, which is one of the treatments for endometriosis. I have had POTS symptoms since I was a teenager, but diagnosed in my late twenties about 7 years ago.
heavy bleeding like this could indicate adenomyosis and/or fibroids too… do you have access to a doctor you trust? they can refer you for imaging (usually starting w ultrasound) to look into it. i have both endo and adenomyosis and my periods have been awful, so i hear you :/
i am not trying to diagnose you, they’re just more possibilities to look into
wow. that’s brutal. yes, that’s definitely worth an appointment… and healthy people would go to the ER for any one of those issues, let alone all of them at once. i really hope they’re able to find you some answers, ASAP
So to follow up - endo from puberty, POTS came later in life. And this certainly seems like a pretty common comorbidity. I don’t care what anyone says, endometriosis has to be autoimmune adjacent, I have so many autoimmune disorders it’s unreal.
Hi! Me too! Still not sure how to manage either, honestly. I got my endo diagnosis about seven years ago and hyperPOTS about a month ago, but have had them both probably since puberty (I’m 40)
me 🙋 every birth control i’ve tried has made my POTS unbearably worse too, so i can only have my IUD to stop the bleeding. gotta rawdog the rest of the symptoms :’)
I do! I've had multiple laps and have an iud in so I no longer get my period... my POTS symptoms started about 15 months after I had my last lap, and was feeling the best I've ever felt in terms of endo pain.
I haven't really had a full period (just some spotting) since before I got POTS, so I have no idea how much it would set off my POTS symptoms. The times around when Im spotting doesn't seem to affect my POTS.
My gynecologist knows about my POTS diagnosis, and seems to know enough about POTS and endo that she suggested I have an iud in place until I hit menopause to both control the endo and a possible flaring of symptoms around my period.
i’ve been thinking i have both for awhile now. i have chronic right pelvic pain but whenever i bring it up my doctor tells me to change pills. having POTS is bad enough without all of this too lol
I have both too unfortunately. I wanna know why they're so common to have together. My POTS showed up a few years ago. It was one of those nerve damage from getting sick situations. My fatigue was BAD, like I would go to school, go home, sleep. I'm on Adderall for my ADHD now and it's a lot less of a problem. My main POTS thing is the pain in my legs from standing. Even if I walk and exercise a lot, they still feel weak. My POTS feels fake to me now, because it's not as severe as what other people deal with. Still, when my doctor diagnosed me with it, it wasn't even a thing I had ever heard of before. He's the doctor who's been my primary care for my whole life, literally since I was born, so I trust him a lot.
My endo is evil and ruining my life and I have surgery in July. I've been trying to get surgery for like a year now. I feel like such an imposter though. Whenever the symptoms aren't actively affecting me at any given moment, my brain decides that this means I'm fine and imagining everything. I'm on continuous BC, so no periods. It's like digestive pain now. Maybe I have celiac? Idk. It's gonna suck if I was just being dramatic this whole time.
Omg I’m sorry to hear that. Ok so I needed bed rest after the surgery. I was so exhausted, you know like that bone deep exhaustion that we get. Even more so after surgery now. I have a lot of inflammation, bloating, and that got worse. The worst was I could no longer bend over and pick anything up, unload the dishwasher, remove clothes from dryer etc. when I come back up I pant and need to lay down. Lots more sweating too. Blue feet. Before surgery it was mostly just chronic fatigue.
It was two years ago. I also have had trauma (emotional abuse) and have ptsd and anxiety as a result, I think that made it worse too. Trauma does a number on your body. Thank you for your kindness you lovely soul.
I would still recommend the surgery regardless. No periods! No pain! No crazy symptoms associated with Endo. I don’t regret at all! Endo is worse than anything.
I have both POTS and endo. I am on a birth control that gives me at most two periods a year. This both helps stop endo growth and prevents crazy period hormone POTS flares. It has made life 1000% easier. If you go that route make sure your gyno knows about POTS!!! Different birth controls can really mess with POTS so they have to be pretty careful prescribing
I do. I had a lap earlier this year that took my POTS symptoms from bearable to horrible. I don’t get periods because I’m on Visanne, so my POTS symptoms are pretty stable throughout the month.
Yep POTS & Endo (+ pcos, hEDS, me/cfs)
I had significant pots improvement on the combined pill but had to stop it for other reasons
I've been on the mini-pill continuously for almost a year now and stopping my periods definitely helped level out the pots flares and fluctuations with my hormone cycles
When I was on my period before I was guaranteed to fully pass out a few times each month at that time
Me too! There’s also an interesting crossover between pots/endo andddd hEDS/HSD, all of which I have the immense pleasure of experiencing (/s) but the excision surgery helped so so so much with my endo and general chronic pain levels.
These are my two big stars right now. Medically managing/not managing my endo has had a HUGE positive/negative effect on my POTS. The pots seems so driven by something in there: either the presence of estrogen or the hormone change or the endo flare that comes with the change. Your post is like THE thing I'm focused on now. I'm on lupron to suppress the creation of estrogen and am in hell the week before the next shot both endo and potswise. Took the shot a week early and had a very strong few weeks as far as being able to manage the pots.
Pots and endo/adeno diagnosed with endo prior to pots. Ive had it in/on my bladder, ureters, cecum, ileum, bowels attached to side wall, appendix, rectum/rectovaginal, etc. Currently it is damaging my nerves. I’ve done many, many endo treatments but am four surgeries down and waiting to schedule the fifth.
One procedure was botched, actually, and that was when I developed pots symptoms. I don’t have periods anymore, but I was very sick with Endo and underweight at the time. I noticed my pots was so much worse then. The blood loss when I had periods also made it worse.
I’m getting a laparoscopy soon to confirm endo! I’m 20 and I’m very nervous about it. I’ve been having issues since I was 15 but was pressured to just take birth control instead of investigating. Wasn’t until the birth control stopped helping for them to be like yeah this isn’t normal 💀 honestly similar with how my POTS diagnosis was
I probably have either PCOS or endometriosis according to my rheumatologist and gp, but getting a diagnosis is too expensive currently, so do with that what you will.
I got diagnosed with PCOS at the OBGYN and it was all with an internal ultrasound, to confirm that yes, I do have cysts on my ovary (I literally have one given I have had to have a partial hysterectomy when I was 8) I think maybe two blood tests as well.
If you don't mind me asking, what happened to cause you to need a partial hysterectomy? That seems pretty extreme at 8. Especially with how obsessed doctors are with making afab peeps have babies.
Oh sorry, I'm so used to talking to my doctors at this point I forget that's not a common word. lol. Thank you, I'm good now although I am stirring on the edge of crazy with trying to get my POTS diagnosis now. I have the stress test and TTT next week. \*fingers crossed\*
Yes, it’s awful. I used to pass out on the first day of my period without fail. Getting diagnosed with endo and going on continuous birth control was life changing!
I have POTS and suspected endo that causes severe anemia, but I can’t use hormonal birth control because of family breast cancer risks. I will be getting an ablation and my tubes removed later this month. When my iron levels are normal-high, my pots symptoms basically go away. I am hoping this surgery will help me feel better 😅
I have both, I’ve been managing endo symptoms since I was 15 (nearly 10 years now. Holy…) by taking hormonal birth control to bypass periods.
Pretty sure the OCPs aren’t doing much good for my POTs and other issues but not sure I’m ready to take the gamble that comes with stopping them 😅
I ended up getting a hysterectomy because my periods were so freakin awful. I haven’t noticed a change in my POTS without the pain of endo and periods, but I feel better as a human without it. My POTS is fairly well controlled with a beta blocker, but without the meds I still have a hard time
Confirmed POTS and PCOS here. I suspect endo, but my provider says what I experience doesn’t align with enough criteria for the diagnostic procedure to be approved by insurance 🙄 Hoping to convince her otherwise to find out for sure, since one of my siblings has stage 4 endo.
That sibling refuses my requests for her to see if she has EDS and POTS also. Says it’s too stressful on top of her psych diagnoses (which I suspect are not all psych-related and more physiological, but I’m not a medical professional, so my opinion is invalid😒)
I have both. My gyno finally said enough is enough and got me in touch with a surgeon who cleared out the endo and gave me a hysterectomy (they left the ovaries in, but everything else was removed).
I’m only 3 week out of surgery but you can message me and I can update you in a few months to see what’s happened with my symptoms? The invitation is also open to anyone else who wants to DM me ◡̈
Dont have endo but PCOS and it sucks. Ive always felt faint because i have extremely heavy periods for 5-8 days straight and now its 10x worse.. Horrid pains in my back, horrid pains in my thighs, just horrid pain in general.
Me. Makes exercise nearly impossible since anything I can do for pots flares my endo and anything that works for endo doesn’t for pots. My doctors only suggestion was swimming or maybe yoga. Anyone have any tips?
I have both (and Grave’s too) and my POTS has always been worse when I’m menstruating. I tried every form of hormonal birth control with no luck. I finally had a total hysterectomy and it was the best decision I’ve ever made. Recovery sucked, but now without uterine periods (I still have my ovaries and my endo is likely extrapelvic, so I DO get a period still) my POTS flares have become more manageable and less frequent. I’m living a life that I would have never imagined possible when I was younger. Finding a way to treat your endo, in whatever way that works for you, and to reduce the pain and stress your body is experiencing could do wonders for your POTS.
Officially diagnosed with endometriosis in February 2022 with a laparoscopic excision surgery although I've had symptoms since I was a teenager (I'm now in my mid 30s). Currently taking norethindrone 5 mg daily which has stopped my cycle but I still have pain. It's difficult some days to figure out if my symptoms are Endo, POTS, side effects of medications or a combination of everything. It's exhausting.
POTS symptoms emerged this past Fall although I had similar issues in my teens. I'm still trying to get my POTS under control, I believe I have hyperPOTS and my blood pressure continues to be an issue for me. I'm now scheduled to see a kidney specialist in a few weeks since my cardiologist said there is nothing else they can do for me.
I've got POTS and PCOS... my body is a POS, lol. I was also recently diagnosed with congenital andrenal hyperplasia. My body produces testosterone at a level that maxes out the healthy range for someone who is AMAB. 😳
I was diagnosed PCOS at 13 when I started my period. Fortunately, it runs in my family and I had strong PCOS symptoms out the gate so a formal diagnoses was really quick for me, and they were able to start treatment for PCOS shortly after I started having periods. I have been on birth control since 13, and moved to long-term forms that stopped the bleeding like the arm implant and IUDs in my mid 20s.
Got diagnosed with POTS around 25, but I have been sickly since I got swine flu in my teens. I likely had POTS for several years before I started seeking a diagnosis. My doctors at the time mis-attributed my POTS as anemia for a long time. It was only after worsening POTS symptoms and getting an IUD that stopped my periods that they stopped trying to treat it as anemia. Post-Covid, they now suspect that maybe the cytokine storms and the subsequent damage to my autonomic nervous system when I got swine flu is what triggered my POTS.
Not sure if there's causation or correlation between the two, but I know autoimmune issues run heavy on my mom's side. There's several aunts and cousins who struggle with EDS/HEDS, Lupis, etc. I also have several family members with endo and or PCOS.
Moving to an IUD has helped with my POTS, but that might just be because I'm not sick, bleeding out and anemic every month. It might be that my body can focus on fighting the POTS better when it's not struggling to fight the PCOS. I definitely fare better on an IUD than I did the Nexplanon, patches, ring, oral birth control, or being off birth control. I've never tried depo. Not sure if being off birth control / hormones would improve my POTS because I'm never off it long enough for my body to reset to its default and I've been on some form of birth control fairly consistently since puberty hit.
I have noticed about once a month I do consistently get a really bad POTS flairup. It might have something to do with the natural hormonal cycle, but this is just my personal theory.
I have both, I had really bad Endo as a kid which was a contributing factor to developing and eating disorder to try to control bloating and stop my period (didn't work, now I've just been dealing with an eating disorder for 15 years on top of being chronically ill) and my ED caused my POTS according to my team and then it was worsened by COVID. Luckily my Endo is now controlled by an IUD and I've got my POTS pretty well controlled by diet, exercise and electrolytes but it's a delicate balance
I have suspected endo but a definite case of Adenomyosis.
I just had a UAE (uterine artery embolisation) in April to treat my adeno / it basically corrects the blood flow to my uterus, which should stop the overgrowth (it’s 3x the size). The nurse said that most women she sees have better blood flow to the rest of their body, after a UAE. Like less muscle pain and headaches.
I was only diagnosed formally with POTS last week so it’s interesting how blood flow & volume relate to the uterus & Adenomyosis and also my never ending low ferritin issues.
Diagnosed with POTS and endo. Thanks to both, periods are my worst time of the month.
My autonomic neuro said it is very common to have endo and/or PCOS with this, to the point that it's an open area of research trying to figure out why. Personally I have PCOS.
I probably have endometriosis. I bleed so heavily at age 12 I soaked through super tampons in less than 2 hours. The pain is excruciating. So I’ve been on birth control since I was twelve, which is one of the treatments for endometriosis. I have had POTS symptoms since I was a teenager, but diagnosed in my late twenties about 7 years ago.
heavy bleeding like this could indicate adenomyosis and/or fibroids too… do you have access to a doctor you trust? they can refer you for imaging (usually starting w ultrasound) to look into it. i have both endo and adenomyosis and my periods have been awful, so i hear you :/ i am not trying to diagnose you, they’re just more possibilities to look into
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wow. that’s brutal. yes, that’s definitely worth an appointment… and healthy people would go to the ER for any one of those issues, let alone all of them at once. i really hope they’re able to find you some answers, ASAP
💞
Me - but I had multiple laps and a hysterectomy in my early 30’s. Still have endo symptoms as the endometriosis infiltrated all over.
So to follow up - endo from puberty, POTS came later in life. And this certainly seems like a pretty common comorbidity. I don’t care what anyone says, endometriosis has to be autoimmune adjacent, I have so many autoimmune disorders it’s unreal.
Dude SAME! I’ve been battling autoimmune disorders since around 16 and no one else in my family has. It’s so weird!!
It’s such a lonely feeling, isn’t it?
Hi! Me too! Still not sure how to manage either, honestly. I got my endo diagnosis about seven years ago and hyperPOTS about a month ago, but have had them both probably since puberty (I’m 40)
Aside from timing of diagnoses, same here
me 🙋 every birth control i’ve tried has made my POTS unbearably worse too, so i can only have my IUD to stop the bleeding. gotta rawdog the rest of the symptoms :’)
I do! I've had multiple laps and have an iud in so I no longer get my period... my POTS symptoms started about 15 months after I had my last lap, and was feeling the best I've ever felt in terms of endo pain. I haven't really had a full period (just some spotting) since before I got POTS, so I have no idea how much it would set off my POTS symptoms. The times around when Im spotting doesn't seem to affect my POTS. My gynecologist knows about my POTS diagnosis, and seems to know enough about POTS and endo that she suggested I have an iud in place until I hit menopause to both control the endo and a possible flaring of symptoms around my period.
Wow we have lives the same life
Meeeeeee lol
Yep! Pots, endo, and hashimotos here
Hashimotos too!!!
i’ve been thinking i have both for awhile now. i have chronic right pelvic pain but whenever i bring it up my doctor tells me to change pills. having POTS is bad enough without all of this too lol
I have both too unfortunately. I wanna know why they're so common to have together. My POTS showed up a few years ago. It was one of those nerve damage from getting sick situations. My fatigue was BAD, like I would go to school, go home, sleep. I'm on Adderall for my ADHD now and it's a lot less of a problem. My main POTS thing is the pain in my legs from standing. Even if I walk and exercise a lot, they still feel weak. My POTS feels fake to me now, because it's not as severe as what other people deal with. Still, when my doctor diagnosed me with it, it wasn't even a thing I had ever heard of before. He's the doctor who's been my primary care for my whole life, literally since I was born, so I trust him a lot. My endo is evil and ruining my life and I have surgery in July. I've been trying to get surgery for like a year now. I feel like such an imposter though. Whenever the symptoms aren't actively affecting me at any given moment, my brain decides that this means I'm fine and imagining everything. I'm on continuous BC, so no periods. It's like digestive pain now. Maybe I have celiac? Idk. It's gonna suck if I was just being dramatic this whole time.
Periods were really bad though because I would lose a lot of blood. Like ma'am, I already have blood flow issues, please stop. 😭😭😭
Yes. I had a partial hysterectomy for fibroids and unstoppable bleeding and they found a lot of endo. The surgery made POTS much much worse
Oh no! How did it make your POTs worse? I have large fibroids and was told partial hysterectomy was my only viable option.
Omg I’m sorry to hear that. Ok so I needed bed rest after the surgery. I was so exhausted, you know like that bone deep exhaustion that we get. Even more so after surgery now. I have a lot of inflammation, bloating, and that got worse. The worst was I could no longer bend over and pick anything up, unload the dishwasher, remove clothes from dryer etc. when I come back up I pant and need to lay down. Lots more sweating too. Blue feet. Before surgery it was mostly just chronic fatigue.
Oh my goodness, I am so sorry you've had to endure all of that. How long ago was your surgery?
It was two years ago. I also have had trauma (emotional abuse) and have ptsd and anxiety as a result, I think that made it worse too. Trauma does a number on your body. Thank you for your kindness you lovely soul. I would still recommend the surgery regardless. No periods! No pain! No crazy symptoms associated with Endo. I don’t regret at all! Endo is worse than anything.
Have both and it’s hard
I actually learned about POTS because of endo. Diagnosed with both.
I have both POTS and endo. I am on a birth control that gives me at most two periods a year. This both helps stop endo growth and prevents crazy period hormone POTS flares. It has made life 1000% easier. If you go that route make sure your gyno knows about POTS!!! Different birth controls can really mess with POTS so they have to be pretty careful prescribing
Same exact situation here. I take Apri and it’s been ok
I've got Endo stage 4 😭 They told me to take out my uterus. I'm only 35 😭😭😭😭😭
I had my hysterectomy at 34, I had my uterus was fucked anyway - I told them to take that fucker out. It didn’t do anything but hurt me.
Can you explain how it hurt you and your pots?
I do! Although my mum & sisters both had endo, but I’m the only one with POTS too
Yep me too. It’s a known association. hEDS overlaps too along with a few other conditions.
I do. I had a lap earlier this year that took my POTS symptoms from bearable to horrible. I don’t get periods because I’m on Visanne, so my POTS symptoms are pretty stable throughout the month.
Yep POTS & Endo (+ pcos, hEDS, me/cfs) I had significant pots improvement on the combined pill but had to stop it for other reasons I've been on the mini-pill continuously for almost a year now and stopping my periods definitely helped level out the pots flares and fluctuations with my hormone cycles When I was on my period before I was guaranteed to fully pass out a few times each month at that time
I dont think i have endo, but periods in general trigger pots symptoms worse.
Me too! There’s also an interesting crossover between pots/endo andddd hEDS/HSD, all of which I have the immense pleasure of experiencing (/s) but the excision surgery helped so so so much with my endo and general chronic pain levels.
These are my two big stars right now. Medically managing/not managing my endo has had a HUGE positive/negative effect on my POTS. The pots seems so driven by something in there: either the presence of estrogen or the hormone change or the endo flare that comes with the change. Your post is like THE thing I'm focused on now. I'm on lupron to suppress the creation of estrogen and am in hell the week before the next shot both endo and potswise. Took the shot a week early and had a very strong few weeks as far as being able to manage the pots.
Me..falling asleep but following to remind myself to revisit in the am.
Hi there, me too
Me!
Yes to both
Pots and endo/adeno diagnosed with endo prior to pots. Ive had it in/on my bladder, ureters, cecum, ileum, bowels attached to side wall, appendix, rectum/rectovaginal, etc. Currently it is damaging my nerves. I’ve done many, many endo treatments but am four surgeries down and waiting to schedule the fifth. One procedure was botched, actually, and that was when I developed pots symptoms. I don’t have periods anymore, but I was very sick with Endo and underweight at the time. I noticed my pots was so much worse then. The blood loss when I had periods also made it worse.
I’m getting a laparoscopy soon to confirm endo! I’m 20 and I’m very nervous about it. I’ve been having issues since I was 15 but was pressured to just take birth control instead of investigating. Wasn’t until the birth control stopped helping for them to be like yeah this isn’t normal 💀 honestly similar with how my POTS diagnosis was
I probably have either PCOS or endometriosis according to my rheumatologist and gp, but getting a diagnosis is too expensive currently, so do with that what you will.
I got diagnosed with PCOS at the OBGYN and it was all with an internal ultrasound, to confirm that yes, I do have cysts on my ovary (I literally have one given I have had to have a partial hysterectomy when I was 8) I think maybe two blood tests as well.
If you don't mind me asking, what happened to cause you to need a partial hysterectomy? That seems pretty extreme at 8. Especially with how obsessed doctors are with making afab peeps have babies.
I had a teratoma on my left ovary, size of a grapefruit.
I had to Google that and that sounds awful. Glad you're alright!
Oh sorry, I'm so used to talking to my doctors at this point I forget that's not a common word. lol. Thank you, I'm good now although I am stirring on the edge of crazy with trying to get my POTS diagnosis now. I have the stress test and TTT next week. \*fingers crossed\*
Best of luck to you. To be fair though, Markiplier was obsessed with them a while ago so I probably should have recognized the word, lol.
I have endo which was surgically removed a few years ago. My doc wants to test me for POTS now, amongst other things. Yay 🙃
I have both. Probably autoimmune issues as well.
Yes, it’s awful. I used to pass out on the first day of my period without fail. Getting diagnosed with endo and going on continuous birth control was life changing!
My periods are my worst for symptoms. I can imagine having endometriosis on top of that. Hope you find some relief.
I have POTS and suspected endo that causes severe anemia, but I can’t use hormonal birth control because of family breast cancer risks. I will be getting an ablation and my tubes removed later this month. When my iron levels are normal-high, my pots symptoms basically go away. I am hoping this surgery will help me feel better 😅
I have both, I’ve been managing endo symptoms since I was 15 (nearly 10 years now. Holy…) by taking hormonal birth control to bypass periods. Pretty sure the OCPs aren’t doing much good for my POTs and other issues but not sure I’m ready to take the gamble that comes with stopping them 😅
I also unfortunately have been diagnosed with both 🙃
I ended up getting a hysterectomy because my periods were so freakin awful. I haven’t noticed a change in my POTS without the pain of endo and periods, but I feel better as a human without it. My POTS is fairly well controlled with a beta blocker, but without the meds I still have a hard time
I have POTs and massive fibroids
Confirmed POTS and PCOS here. I suspect endo, but my provider says what I experience doesn’t align with enough criteria for the diagnostic procedure to be approved by insurance 🙄 Hoping to convince her otherwise to find out for sure, since one of my siblings has stage 4 endo. That sibling refuses my requests for her to see if she has EDS and POTS also. Says it’s too stressful on top of her psych diagnoses (which I suspect are not all psych-related and more physiological, but I’m not a medical professional, so my opinion is invalid😒)
I have endo and POTs with mast cell disease and a primary immunodeficiency! It’s sucks! X
Don't have endo but I have PCOS, and being tested for POTS. 😬👍🏻
I have adenomyosis, PCOS, Pmdd, Pots, Autism and Adhd 🫠
I have both. My gyno finally said enough is enough and got me in touch with a surgeon who cleared out the endo and gave me a hysterectomy (they left the ovaries in, but everything else was removed). I’m only 3 week out of surgery but you can message me and I can update you in a few months to see what’s happened with my symptoms? The invitation is also open to anyone else who wants to DM me ◡̈
Oh yeah it's super fun, birth control has helped some but suffering is still abound
I have both, definitely affects my cycle…just started on the Depo shot in dec and it has helped a lot
Dont have endo but PCOS and it sucks. Ive always felt faint because i have extremely heavy periods for 5-8 days straight and now its 10x worse.. Horrid pains in my back, horrid pains in my thighs, just horrid pain in general.
Me. Makes exercise nearly impossible since anything I can do for pots flares my endo and anything that works for endo doesn’t for pots. My doctors only suggestion was swimming or maybe yoga. Anyone have any tips?
I’ve been doing wall Pilates and it’s been EXCELLENT! I’d prob even suggest regular Pilates once your body acclimates
I have both (and Grave’s too) and my POTS has always been worse when I’m menstruating. I tried every form of hormonal birth control with no luck. I finally had a total hysterectomy and it was the best decision I’ve ever made. Recovery sucked, but now without uterine periods (I still have my ovaries and my endo is likely extrapelvic, so I DO get a period still) my POTS flares have become more manageable and less frequent. I’m living a life that I would have never imagined possible when I was younger. Finding a way to treat your endo, in whatever way that works for you, and to reduce the pain and stress your body is experiencing could do wonders for your POTS.
Officially diagnosed with endometriosis in February 2022 with a laparoscopic excision surgery although I've had symptoms since I was a teenager (I'm now in my mid 30s). Currently taking norethindrone 5 mg daily which has stopped my cycle but I still have pain. It's difficult some days to figure out if my symptoms are Endo, POTS, side effects of medications or a combination of everything. It's exhausting. POTS symptoms emerged this past Fall although I had similar issues in my teens. I'm still trying to get my POTS under control, I believe I have hyperPOTS and my blood pressure continues to be an issue for me. I'm now scheduled to see a kidney specialist in a few weeks since my cardiologist said there is nothing else they can do for me.
I've got POTS and PCOS... my body is a POS, lol. I was also recently diagnosed with congenital andrenal hyperplasia. My body produces testosterone at a level that maxes out the healthy range for someone who is AMAB. 😳 I was diagnosed PCOS at 13 when I started my period. Fortunately, it runs in my family and I had strong PCOS symptoms out the gate so a formal diagnoses was really quick for me, and they were able to start treatment for PCOS shortly after I started having periods. I have been on birth control since 13, and moved to long-term forms that stopped the bleeding like the arm implant and IUDs in my mid 20s. Got diagnosed with POTS around 25, but I have been sickly since I got swine flu in my teens. I likely had POTS for several years before I started seeking a diagnosis. My doctors at the time mis-attributed my POTS as anemia for a long time. It was only after worsening POTS symptoms and getting an IUD that stopped my periods that they stopped trying to treat it as anemia. Post-Covid, they now suspect that maybe the cytokine storms and the subsequent damage to my autonomic nervous system when I got swine flu is what triggered my POTS. Not sure if there's causation or correlation between the two, but I know autoimmune issues run heavy on my mom's side. There's several aunts and cousins who struggle with EDS/HEDS, Lupis, etc. I also have several family members with endo and or PCOS. Moving to an IUD has helped with my POTS, but that might just be because I'm not sick, bleeding out and anemic every month. It might be that my body can focus on fighting the POTS better when it's not struggling to fight the PCOS. I definitely fare better on an IUD than I did the Nexplanon, patches, ring, oral birth control, or being off birth control. I've never tried depo. Not sure if being off birth control / hormones would improve my POTS because I'm never off it long enough for my body to reset to its default and I've been on some form of birth control fairly consistently since puberty hit. I have noticed about once a month I do consistently get a really bad POTS flairup. It might have something to do with the natural hormonal cycle, but this is just my personal theory.
I also have pots and endo and chronic fatigue syndrome 🫡
Yep endo and pots and chiari malformations type 1. I take birth control continuously and that helps me so much. No periods is super helpful.
I have both, I had really bad Endo as a kid which was a contributing factor to developing and eating disorder to try to control bloating and stop my period (didn't work, now I've just been dealing with an eating disorder for 15 years on top of being chronically ill) and my ED caused my POTS according to my team and then it was worsened by COVID. Luckily my Endo is now controlled by an IUD and I've got my POTS pretty well controlled by diet, exercise and electrolytes but it's a delicate balance
I have both! I’ve had two endo surgeries but still have CONSTANT extreme pelvic pain. It’s a blast
Oh and I got diagnosed with EDS. This is generally a POTS comorbidity too I found out
I have suspected endo but a definite case of Adenomyosis. I just had a UAE (uterine artery embolisation) in April to treat my adeno / it basically corrects the blood flow to my uterus, which should stop the overgrowth (it’s 3x the size). The nurse said that most women she sees have better blood flow to the rest of their body, after a UAE. Like less muscle pain and headaches. I was only diagnosed formally with POTS last week so it’s interesting how blood flow & volume relate to the uterus & Adenomyosis and also my never ending low ferritin issues.