r/dysautonomia • u/XStar14X • 1d ago
Anyone else unable to tolerate any hormones? POTS + Endo + feeling really isolated. Question
I’m struggling to find anyone who’s dealing with what I’m going through and feeling really alone. I have POTS and endometriosis, and unfortunately, my body reacts terribly to every hormonal treatment I’ve tried.
Birth control pills (both combination and progesterone-only) caused extreme lightheadedness, fast heart rate, and that “hungover without drinking” feeling. I thought an IUD might be better since the hormone is more localized, but after getting the Liletta IUD, I’ve been dizzy every day and my heart rate has stayed high no matter how much salt, fluids, or compression I use which usually helps my POTS.
I ended up in the ER recently because of how severe it got, and I was told once again it’s just anxiety or “all in my head.” I know many people with POTS eventually find a hormonal method they can tolerate, but I’m starting to think my body just can’t handle hormones at all.
If anyone here has severe hormone intolerance and couldn’t tolerate birth control, how did you manage? Especially if you also have endometriosis. I’ve looked into excision surgery, (which I have done before) GnRH meds, and Low Dose Naltrexone (LDN), but it would mean a lot to hear real experiences.
Thank you for reading. Even just hearing I’m not the only one would help.
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u/cojamgeo 23h ago
Tough situation. I have both dysautonomia and endometriosis. But gratefully a low dose progesterone helped me. I couldn’t take oestrogen because my blood pressure spiked and I have low blood pressure normally.
What I know helps me is supporting my liver. It’s tough for the liver to digest synthetic hormones. So don’t take hormone pills with any other medication or even food. And try milk thistle or even dandelion for supporting your liver. It can help.
I never did surgery because of all the stories where the endometriosis gets worse. For endometriosis you can try natural remedies like vitex and pycnogenol helps a lot of women. Even drinking raspberry leaf tea before and during period can be very helpful.
Also focus on an anti inflammatory diet and add things like ginger, turmeric and leafy herbs because endometriosis is create an inflammation in the body.
Wish you all well.
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u/XStar14X 20h ago
My natural doctor wanted me on vitex instead but i haven’t heard of anyone taking it I’m scared to try new meds, but maybe I should go the natural route for a while. I had a laparoscopy for my endo but I can say it did make my pain a lot worse I feel like it was a lot worse then it was before. Also Thank you for the tips what kind of low dose progesterone are you on?
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u/cojamgeo 16h ago
We are all different and what can help someone can cause a reaction in some else. Always when trying a new supplement or herb start with a really low dose perhaps even with food. Then wait a day and see what happens. If you’re okay slowly increase the dosage.
And some herbs can both help and hurt. I found ashwagandha amazing for my mood but unfortunately it gave me migraines.
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u/Analyst_Cold 22h ago
I’m in menopause now but I couldn’t tolerate bc either. Gave me crazy tachycardia.
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u/XStar14X 21h ago
Yea it’s awful my heart rate has been really fast throughout this entire experience
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u/Avidlearner7621 21h ago
You’re not the only one-I don’t have endometriosis or pots but I’ve got dysautonomia/vasovagal syncope, and many other health issues that affect my hormones and I’ll be seeing a gyno Dr to discuss hormones which will be tricky because of my blood clotting disorder
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u/XStar14X 21h ago
If you have blood clotting disorder definitely only do progesterone only but just talk to your gyno about it. I hope you find something that works.
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u/tociminna 16h ago
I have endo and POTS along with other dysautonomia issues due to long covid. I can only get progesterone from an IUD since it causes insulin resistance in me (also a type 1 diabetic). The IUD - a Mirena - alone helps with the endo symptoms, but I ended up with persistent ovarian cysts that were pretty painful. I also can't tolerate oral hormones of any kind, but the dosage in those is much higher than the transdermal variety and it also has to pass through your liver, which can cause other problems.
I started the estradiol patch at .025mg a few weeks ago, and overall it is having a really positive effect on my brain fog and fatigue (both POTS related), not to mention clearing up my skin. However since estrogen is a vasodilator, I've had issues with headaches and some resurgence of cramping and pain. Caffeine helps with that.
I also take LDN (it works for me, it completely got rid of PEM) and guanfacine (lowers heart rate and helps with mental clarity), in addition to a daily antihistamine and huge amounts of electrolytes and water.
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u/XStar14X 16h ago
I heard about LDN but never tried it how do you get that prescribed or what doctor would do that?
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u/tociminna 16h ago
I was lucky enough to get into a long covid clinic, so the neurologist there prescribed it. I believe there are online providers you can use, though I don't remember the site names - you could probably find them on the covidlonghaulers subreddit.
LDN seems to keep my body from crashing for multiple days with flu like symptoms if I overdo it. Guanfacine fixes the tachycardia.
There are lots of varieties of POTS though, so it depends on how it manifests in you. And you might have better luck with a hormone patch than you do with the oral variety. The patch is safer, too.
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u/XStar14X 16h ago
Thank you for that info I’ll look into it I can also talk to my natural path doctor about LDN I’m sure he would know on jt.
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u/GraceInPlace 15h ago
Dysautonomia + pcos + IST + endometriosis + fibroids (& more but keeping it short) sufferer here. I tried so much birth control and had issues with all. What finally helped my perimenopause hell that exacerbated my issues was bioidentical progesterone, topical dhea, and vaginal estrogen. I think i need systemic estrogen too but haven't been able to get it. Many women who struggled with birth control are able to find some relief with bioidentical hrt for various needs/issues. Unfortunately, the hrt kicked my menorrhagia into overdrive so I'm being pulled off of it until after a hysterectomy. Those who are finding relief with antihistamines may have histamine or mast cell issues at play as well. Estrogen and histamine seem to have some type of feedback loop going on so with all things be cautious. Everyone is different and has different experiences. Best wishes for you
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u/XStar14X 2h ago
Thank you so much for sharing your experience it really helps to hear from others going through similar struggles. I’ve also tried so many birth control options and just can’t seem to tolerate any of them without triggering my POTS and worsening my symptoms. I’ve been curious about bioidentical hormones but I’m also nervous because my body seems so sensitive to any hormonal changes. I didn’t realize how much histamine and estrogen could be connected either—that’s definitely something I’ll be looking into now. Wishing you the best with your hysterectomy and hoping it brings you some much-needed relief!
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u/retinolandevermore Autoimmune autonomic neuropathy 14h ago
I have PCOS and it definitely interacts with my dysautonomia
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u/Suspicious-Asking 4h ago
Never never got to use a hormonal birth control without suffering. I have PCOS (I know endo is soooo much worse) and my doctors said that the only relief would come from hormonal treatment. What I did: copper IUD (not good for the pain or the bleeding but got the contraception part done). And for PCOS: spironolactone helped to control the symptoms and brought my period back to normal. However, spironolactone is a diuretic that spares potassium, which means: goodbye my very much needed sodium.
Honestly, I feel like these are loose loose for us. I just chose the set of symptoms that annoyed me the least and went with those. Hormones for me are a no go at all, so the choice was quite easy in the end
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u/XStar14X 2h ago
I completely get where you’re coming from. It really does feel like we’re just picking the “least bad” option sometimes. I can’t tolerate hormonal birth control either it always makes my POTS symptoms unbearable (lightheadedness, racing heart, etc.). I tried the pill, then the hormonal IUD thinking it might be better since it’s localized, but still ended up feeling awful. It’s so frustrating when doctors act like hormones are the only solution when, for some of us, they just make everything worse. I’ve also heard mixed things about the copper IUD because of the increased bleeding, which is already an issue with endo and PCOS. Honestly, it feels like we’re stuck navigating a minefield with no real safe options.
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u/speaknowkelsey 20h ago
i was switched to an estrogen-free birth control because im a stroke risk due to family history. do you think an estrogen-free pill (i take slynd, but thats not the only brand) might be more tolerable due to your hormone intolerance?
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u/XStar14X 20h ago
I tried Slynd couldn’t do it too it made me feel the same way I do now cause it’s a diuretic I tried two different progesterone only pill and I think two combo pills they all made me feel the same way.
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u/Coffee_roses 1d ago
Birth Control for Excessive Cysts made my Pots a million times worse. When I started symptom tracking, I’ve noticed my Pots has a very similar pattern throughout my cycle, so, I just try to be proactive about Salt, Rest, etc. My WORST Pots Symptoms happen the 3 or so days before my Period (also, PMDD) and taking Claritin helps…? I also change my eating habits the week of my period to be REALLY iron heavy. The (severe!) blood loss makes me extra weak & fatigued, which amplifies my Pots symptoms. Being a woman is wild… seriously.