Hormonal Birth Control Use Survey (Options For Those Who Don't Use)

[Lethargic Smiles]

I'm finding there isn't a ton of research out there on the long term effects of its use which is concerning to me, and it is making me think about taking the plunge and switching over to a non hormonal contraceptive option.

Let me know if you'd like any options changed/added!

[Ctat333]

I use Paragard, the copper IUD. I am extremely sensitive to the extra hormones in bc. I experience horrible side effects, so Paragard is what works best for me. I used hormonal birth control in my teens and early twenties, and that was when my dysautonomia symptoms started, but I never attributed any of my symptoms to birth control.

I will be interested to see other responses!

[hholmes13]

I'm a big fan of NuvaRing. I was on the pill for many years but once I hit my early twenties I would throw up from them every month. I started the pill when I was 16 for ovarian cysts and horrible menstrual symptoms. Now, Nuvaring is the only thing I've found with no side effects and makes my cycle tolerable.

[KareBear]

I have never been on birth control pills/hormones. Ever.

[Lethargic Smiles]

Hormones are so important to how our body functions. I'm wondering if hormonal birth control could have played a part in creating the perfect storm, allowing dysautonomia to take over my body. This would in addition to a genetic predisposition, inadequete medical attention to symptoms, nasty case of mono, high stress levels, and hectic low-rest schedule.

I was a late bloomer and I used to get my period so frequently, I became anemic. No amount of iron supplementation seem to help. (As I type this, I wonder now if not responding to iron supplements could at all be related to low blood volume?) After 2 years of this, I went on the pill. 2-3 years after that, is when my decine began. My full out rock bottom was about 5 years after starting. I've been on hormonal oral contraception for about 7-8 years. I currently take Seasonale and do really enjoy only having a period every 3 months. I'm just thinking, everything is already so messed up with my body having dysautonomia, could I be messing it up more? I'm a bit scared to go off it after so long, but I think I'm going to take the plunge.

I also find it strange how doctors discuss/ask me about all of my medications, in depth... except birth control. It is never mentioned. I suppose this is because it is personal, but I don't think it is that far out there to suggest perhaps the hormones aren't ideal for someone whose body is already out of whack.

Ctat, I've had my eye on the copper IUD. I don't know that I am a fan of how it works -- by causing "localized asymptomatic inflammation" -- but its probably closer to natural for my body than hormones made in a lab... Or my body constantly being in a fake hormone induced state. I also like its high efficacy level. Have you had children?

Hholmes, I've considered the Nuva Ring. What an awful experience you went through throwing up each month with the pill. I wonder why that happened? A con of the ring (to me) is it is still hormonal. However, at least it is supposedly localized and also, it doesn't have estrogen. My sister (who had POTS for about a decade and recovered) responded well to it while she still had POTS, so that's probably something I should think about.

MedicGirl, I wish I'd never taken them! Not because I'm convinced they've made me sick, but because I've put manmade, unnecessary hormones into my body nearly each day for 7 years. That can't be good! My body has enough to deal with! Looking back, I wish after a year or so the doctor would have suggested going off of it to see if my cycle became more regular.

[KareBear]

I have the same thoughts about using hormones! I always thought, "why would I do that unless absolutely necessary?" I'm actually glad I never used them. I even had years of painful ovarian cysts that docs said being on BCP's would possibly help but I chose to let my body take care of them naturally. They eventually stopped. I can see why some people need to get on hormones but If I had to I would only use them for a short period and then see if things were better. Sure seems like they could affect lots of things. Maybe with the seasonale you could stop for 7 days at the end of each month first to give your body normal monthly cycles first and then over time stop them completely? This is what a friends doc suggested once for her so maybe you could ask your doc about it.

[Katybug]

My body doesn't do well on its own and I can't tolerate any of the BC that has estrogen in it. So I am on depo provera shots. I tried going off of them a few years ago and my periods over the course of 8 months went back to being extremely heavy and painful. I tried nuvaring at that time but the estrogen just makes my dysautonomia worse.

[Bigskyfam]

Im 35,I've had a tubal ligation and have taken ocp off and on since 18. I was diagnosed with menorrhagia last year, d &c in January, Mirena iud in march... Diagnosed with pots last month. Symptoms for a while but intensified September. Any experiences appreciated. We are struggling with pulling it to see if sx get better and starting ocp to manage menorrhagia

[Ctat333]

Jackie,

I have 2 children, and had Paragard put in after the birth of my youngest. I believe I had it done at my 6 week postpartum checkup. I am a huge fan of Paragard. The inflammation that occurs with the Paragard is relegated to your uterus. The first year after insertion is when you have the most/biggest side effects. Hopefully not TMI, but I'm always very forthcoming about Paragard. I bled VERY heavily my first year with it (I have now had it for going on 3 years). My normal period would last 5 days or so, now it's closer to 10. I also have more heavy flow then medium/light flow days. I also experienced break through bleeding during cycles. When my period was already 10 days long, with the break through bleeding, some months it seemed like the cycle never ended lol! You can also get pretty heavy cramping with Paragard. Cramps are the worst the first few weeks after insertion. They do settle down though.

I believe the pros are well worth the few months of excessive bleeding and cramping. It is highly effective, and no worries about birth control for 10 years! The hubby and I really like that

I have been on every birth control under the sun. My mom is a NP who specializes in women's reproductive health, so she's tried them all out on me lol! I can honestly say that Paragard works the best for me. I don't feel like it has any affect on my symptoms at all.

~ Alison ~

[abbyw]

I took hormonal birth control pills on and off for years before I had POTS with no problem. Since I have developed POTS, I tried the Nuvaring, which had worked for me before POTS and had a relapse of symptoms even though my POTS had been totally under control. It took me weeks until I realized that my relapse coincided with the birth control. Now I tried another pill, and again, within two days, I felt awful.

I was searching this forum see if anyone had a similar experience and came across this post. I was wondering if there was any point in trying to tough it out. Will my body get used to it? I tried an IUD, but the doctor messed up on insertion (fun!) and I passed out from the pain, so I didn't want to go there again. Any ideas?

Thanks,

Abby

[kayjay]

Timely topic for me. Yaz birth control made my dysautomonia so bad that I finally got a proper diagnosis.

I was put on Kariva by Mayo clinic in 2009 and had no problems with it. I also have endometriosis. I stopped taking it last month to see how I did without it- I can tell you I'm absolutely going back to it. It's a generic of mircette? Not sure how it's spelled.

mayo had me use Kariva also to suppress my period. I'd toss out the inactive pills for 3 months and begin a new pack.

Edit to add- for me it's not birth control. I take it as a medication. I'm totally going back on this Sunday.

[sideofsalt]

Good questions and it's good to examine the use of hormones. I used OCPs for a few years on and off years to control PMS pain and suffering before POTS ever came into the picture but they eventually gave me migraines. I did very well on them otherwise. Fast forward a few years and migraines became a monthly occurrence again in my 30s but not a big deal. After I had a baby and after weaning, I developed migraines once again and developed POTS. I figured out that POTS was most obvious around my cycle so I tried NuvaRing but developed severe migraines and high blood pressure a few months into it. I did great for a couple of months and hardly had POTS, but it seems like I can't win with hormonal contraceptives. I'm currently not taking hormonal contraceptives and found that after my thyroid was low earlier last year, my menstrual (and therefore POTS) symptoms became worse and improved after I got my thyroid to normal levels again. It's worth checking out the thyroid route because hormonal contraceptives can change your thyroid function. I too wonder if I altered my chemistry too much with OCPs early on and deep inside I feel that no synthetic hormone therapy is right for me. I hope you can find balance/relief whatever you decide!

[cbear1591]

I used to be on the pill. I hated having to take hormones and I didn't like the uncertainty of the long term effects,but I have horrific cramping. Within 4 years, I had been switched between 5 or 6 different pills. Now, I am off the pill for good. I did have a recent visit with Cardiologist and he said that a lot of birth control pills have diuretics in them that can make POTS worse...I thought that was pretty interesting.