Hormonal contraception - experiences?

[bombsh3ll]

I have decided that after a couple of vein scans this month, I am going to go back on a combined pill. (For cycle suppression & avoidance of hormonal fluctuations, not contraception).

I previously used the Nuva ring which completely stopped bleeding and hormonal ups and downs, but this has a higher clot risk than others (probably not a concern if you are mobile, but needs considering if you are not), and also doesn't stimulate the renin-aldosterone system as much as oral estrogen.

If you are female, have POTS or other dysautonomia and use hormonal contraception, I would love to hear what brand, & what is good/bad about it, particularly in relation to orthostatic intolerance & helping retain fluid.

I know there have been past threads on this but I want to hear current experiences, particularly type of pill/patch/ring and how you rate it and why.

Thanks!

B xxx 

[outofadream]

Hi Bombsh3ll, I wish I had more to offer here. My neuro really wanted me on the combined pill to try to smooth out the POTS ups and downs, and my gyno wanted me on it because I also have PMDD, where the hormone swings cause nasty recurrent bouts of depression.
Unfortunately,  I seem to be spectacularly sensitive to hormones, so I never have found one that works well for me.
For some reason, the lower dose ones all ended up being particularly bad (ones like Microgestin or LoSeasonique/Amethia Lo). I think they lowered my bp some and definitely seemed to cause worse symptoms (extreme tiredness, dizziness, brain fog…and depression, for added fun).
The really high dose one (I think it was Ortho Tri Cyclen) didn’t seem as hard on the POTS, but unfortunately wrecked my stomach and mood (was waking in the night with acute nausea, and the mood swings were intense).
I did the best on the somewhat higher estrogen, three month pills (so, like Amethia/Seasonique), although even then the lightheadedness/fog/tiredness were noticeably worse for the first month or so before leveling out. Overall, the POTS also seemed to have a decline while I was on it and for the first few months after discontinuing, but I have no idea if that had anything to do with the pill or no. 
I tried Nuvaring too..never noticed any negative effect on the POTS while on it, but no real improvement to anything either.
I would hazard a guess that overall, the higher dose ones did a better job of helping me retain fluid, although I'm not absolutely sure about that (and they have their own risks...I get migraine auras, so they were pretty nervous about having me on it).
I always seem to be on the extreme end of reactions when it comes to anything hormone-based, though. I hope you have much better luck and find something that really helps!
(PS, I wasn’t sure where you were from…the brand names are what they’re called in the US, I’m afraid I’m not sure what they would be called somewhere else) 😕

[Guest KiminOrlando]

I got the implant in my arm so the hormones stayed consistent. It helped TREMENDOUSLY and kept me working a few more years. I don't know if you have that option. I would try the pill first to see how it goes, but with no off week.

[bombsh3ll]

Thanks both of you!

I was on a low estrogen pill (Mercilon) when I developed POTS, then went up to a standard strength to see if it would help with fluid retention but no, then the ring. It is difficult to tell if there really is a difference between brands. I always took them continuously so as not to have a period. 

This time, although ideally higher dose would be better from a fluid retaining point of view, I am also concerned about the clot risk due to being over 35 and immobile. I think I will start with a lower one for that reason, probably a European one I have found with 20mcg estrogen and 0.5mg norethisterone, called Eve. 

Regarding the implant, I tried the progestin only pill Cerazette which is essentially very similar, & had to stop because joints were becoming lax which had not been before. I have a diagnosis of hypermobile EDS, & upon reading a lot of EDS patients have problems with, and are advised to avoid if possible, progestin-only preparations. It did keep me bleed free though & avoided ovulation hence natural progesterone exposure, which is a diuretic. 

B xxx