Birth Control Pills

[Rachel]

Hi Everyone,

I'm looking into starting birth control pills. Not for a contraceptive, but to see if it helps my POTS and NMH. I felt much better while I was pregnant (even before the increase in blood volume). There was a noticable difference in my health just in the first week of pregnancy (when progesterone levels rise), so I'm hoping that the hormones in a bcp will give me a bit of overall improvement.

I'll be going to my pcp early next week and will be able to ask her some questions, but I want to show up prepared. So here are some things I'm trying to get some info on before I go:

Are there any articles about dysautonomia and the benefit of birth control pills? I've searched, but haven't found anything.

Do any of you know about the risk of breast cancer associated with birth control pills? I've found conflicting reports, but would appreciate a more definitive answer.

Will the risk of blood clots be greater for me since I can't walk much?

Is a higher hormone or lower hormone pill better for POTS and NMH?

Do any of you do natural hormones? Like a progesterone cream? Do those work as well for those of us with dysautonomia?

I appreciate any answers, advice, or experiences you can share.

Thanks,

Rachel

[lavender]

Hi Rachel,

I don't know much about birth contol, and nothing about how is effects dysautonomia. But I do use progesterone cream, so I'll share my story.

Because of my illness, my periods are irregular at times, especially when I'm really sick. A few years ago my cycle stopped for a year so my GP gave me a birth control to see if it would normalize my cycle again. I used it for a month. For me, every day I was on it I was very very sick. It made me feel like I was in a awful flare up of my illness. I went off it and my cycle was still crazy. My Mom was using progesterone cream for premenopause so I decided to try it. For me, I had none of the reactions to the cream that I did to the BC. It doesn't make a huge difference in my illness though. I have less PMS with it and I sleep alot better with it. I have a LOT of trouble sleeping the week before my period, the cream makes a big difference in that. My periods have become a lot more normal using the cream, but I've also figured out some other factors that were playing into my irregular cycles. The thing with progesterone cream is, if you are still ovulating, you can't use it all the time. I use it after I know I've ovulated....or if I'm irregular...after I SHOULD ovulate. then I stop using it at my period.

For me, I've found that any form of estrogen makes my illness flare up very quickly and very bad. There are some foods, herbs and chemicals that act as estrogens in the body. I've found that these make me really sick too. So I avoid them. I'm not saying this would be the case with you or anyone else. It could be that if increasing your estrogen levels helps you, you could play with increasing foods in your diet that have phytoestrogens in them. You could also try a phytoestrogen cream.

For me I'm more comfortable with a natural form of hormone.....progesterone or estrogen, rather than synthetic.

Do you notice you feel better or worse at different times of your cycle?

[Rachel]

Lavender,

Thanks for sharing.

Which foods have phytoestrogens in them?

I do feel worse for the week before my period starts. Then I slowly start to feel better during my period. Then I have a "good" two weeks. Usually the crash before my period isn't too bad. But last time it was.

Rachel

[Dizzy Dame]

Hi Rachel,

I spoke with my OBGYN yesterday about my improvement because of the birth control, and he's actually going to put me on a higher hormone pill to see how I do. I think all pills have the same amount of progesterone, but some have more estrogen than others. Here's a link that may help you:

http://www.wdxcyber.com/ncontr13.htm

It doesn't talk about dysautonomia, but it does talk about irregular periods and which pills help what. I hope that helps a little!

Lauren

[DancingLight]

Rachel,

Actually just talked to my pharmacist a bit too about switching, and can share what I know from past stuff....but right now need to take a nap!

But, I wanted to let you know that I think I can help you out a bit on this topic....I hope I can...

Em

[Rachel]

Lauren,

Thanks for the website. It is very informative! It doesn't have all the information I'd like about dysautonomia and birth control, but when do we ever find all the information we need on dysautonomia?!

Em,

Rest up, and don't worry about posting unless you're able.

[Kathy_Ireland]

Hi Everyone . I just logged onto tonight wondering about this very issue (Ie. would the pill possily help my POTS) . I feel much better during the last 2 weeks of my cycle. Even if I do get some PMS, physically I definitely feel stronger and my symptoms are less severe. I can do things without as much payback which is great! I find things start improving around day 14 and I feel my best around day 23-28. This is the complete opposite to how I was before I became ill with POTS. Its so distinct that if I plan an outting or a visit from friends I tend to pick these dates because I know I'll be at my best. Then conversely my worst days are day 3 - day 15 of my cycle. Im always flat out sick during this time. Its been a very noticable pattern for the 5years I've been ill. Has anyone else noticed this ? Has the pill helped anyone else ? Thanks for reading

[lthomas521]

In a large case-control study published in the New England Journal of Medicine, there was no evidence that use of birth control pills increased the risk of breast cancer, not even among women who started using them early or who had a family history of breast cancer. The risk did not increase even among the women who used the Pill for a long time or in high doses.

http://content.nejm.org/cgi/content/abstract/346/26/2025

Estrogen can increase the risk of blood clots, but the risk of blood clots is also low in otherwise healthy women. Theoretically, a lower dosage would be safer. The following is a Web site that gives some information about the different progestin components of an oral contraceptive and who should not take oral contraceptives. The same basic advice would apply to other hormonal contraceptives, such as the patch and the vaginal ring.

http://www.fhi.org/en/RH/Pubs/Network/v16_2/nt16212.htm

Recently, there were some evidence that the birth control patch could put you at relatively increased risk for blood clots, because the estrogen dose is so high. http://money.cnn.com/2005/11/11/news/fortune500/patch/

If you want the lowest and most consistent estrogen exposure, use the vaginal ring.

There's no evidence that "natural" hormones are any more effective or safer than the synthetic versions. If you want the "natural" hormones for some reason, it might be better to get them in a manufactured product than in a custom compounded product, because the quality control is better in the manufactured product. http://www.mayoclinic.com/health/bioidenti...ormones/AN01133

If you wear pressure stockings, that should decrease your risk of blood clots in the leg somewhat.

[yogini]

Hi Rachel,

At my last exam, my doctor told me that the risk of blood clots in healthy,non-smoking females under 35 is pretty low - something like 1 in 10,000 and birth control pills double this risk, but even then it is still pretty low. (I may be off on the statistics, but you get the picture.)

I personally opted for a low dose BCP because I wasn't sure how I'd react to it and whether it'd worsen my POTS. At the time, I really wanted to try an SSRI, but I heard that there was an adjustment period and didn't want to deal with this while working. I actually didn't have any side effects when starting the birth control the first time around, but I am having some now after stopping and re-starting. The beneficial effects were so gradual and mild that I didn't even realize them until I had stopped taking the pill. I do think every little bit helps.

You may also want to do a search on this topic, as it seems to come up a lot.

-Rita

[Foxyblue]

Hey,

I have been on birth control since the birth of my son two and a half years ago. I have not felt an improvement in my POTS. POTS started for me when I was pregnant. If anything, it has gotten worse. Whether or not that has anything to do with birth control.....I don't know. But it definitely did not help.

Bri

[DancingLight]

Okay, here goes!

I hope I can help you out a little, although I really can't answer your questions for certain...remember I just love this stuff, but need a lot of brushing up!

As for breast cancer risk, I wasn't sure about that one. You can read the article lthomas sited and double check with your doctor. For the most part, the pill actually lowers our risk for other cancers, particularly endometrial and ovarian, by a HUGE percentage depending on how many years you take the pill. Each time we ovulate, researchers believe that can trigger cell changes that can lead to cancer. So, no ovulation, less cancer risk. (Years ago, women spent many more years of their lives pregnant than we do now, so in a sense avoided as many possibilities for cell changes from ovulation).

Basically with the pill you are just simulating pregnancy. So, it would be great if it would help you to feel better! I know that I cannot be without it. I actually supress completely and you may have read that having a period in December knocked me for a loop.

I would agree with Rita about the risk of blood clots--they increase with age and smoking. Also, higher dose pills. For instance, you might remember how revolutionary the patch seemed and how excited folks were about it. Then, they realized it had higher incidences of strokes and blood clots than other pills b/c it was releasing more hormones into the body than they had previously understood it to be. However, they still told women that if it meant they would comply with that method over another, the risk might be worth it if they did not want to get pregnant! So, even though the risk was higher, the risk is still very small. Some people are more prone to clots and it would be impossible to know if we'd be one of the unlucky ones I guess. But, as for risk factors...you are young and don't smoke.

I worry, like you do, about blood clots. For some reason I am terrified of them in an absolutely unrealistic sense. But, the reality is that they are very rare. I think the lower dose pill you take, the lower your risk. How much lower, I don't know. You said you don't walk 'much'--but do you get up to go to the bathroom a few times a day? Or get up to get a bite to eat? Draw the alphabet with your legs while lying in bed? I am a bit obsessive about doing a bit of these in-bed exercises as much as possible. You're not lying totally still and not moving AT all. This is a legitimate concern though and our inactivity could increase our risk, so it may be worth getting some reassurance from your doc.

For me, I don't see another option, so I take the risk. And my doctors--gyn and ANS doc--do not seem concerned.

Which brings me to articles on the connection b/w the pill and NMH, etc. All I know is that so many women get relief from taking the hormones. I don't think I've come across an article, but perhaps someone else has. I have seen both Dr. Grubb and my current specialist and both have certainly encouraged the use of the pill for controlling symptoms. So, even though there may be no published article or study, it is certainly a treatment often used to relieve symptoms surrounding those 'two weeks' of the month.

As for higher vs. lower dose pills. I would take the lowest dose pill possible that WORKED for me. Right now I take Avianne/Alesse. (Why they named a pill after the bird flu I do not know!). What we have learned over the years is that women need much less hormones to do the job, than we thought. When the pill came out years ago the amoutn of estrogen in them was HUGE compared to what we use now, even in our higher dose pills. If you find that you have too much break-through bleeding or such, then you could go to a higher dose pill. But, in general the trend is to go for lower dose pills for less side effects, etc. Why take more hormones than you need to? Ya know? Also, if you find you feel great on the pill, and still lousy during the week of your period, you can opt to take your pill for three months without a break and have just four periods a year. This is FDA approved, unlike what I am doing by suppressing constantly!

Basically, it's hard these days to argue against taking the pill. Not to mention it's great birth control when used properly and no more messing with barrier methods.

So many articles are constantly in women's magazines saying 'more reasons to take the pill'....and the latest one I saw said it was safe to take it for more than 20 years!

The perks listed were: lower cancer risk, clearer skin, lighter, less painful periods, pms relief, endometriosis relief, polycystic ovarian syndrome relief, fewer periods (if you take the option to go four periods a year).

When choosing which pill to take (you will have to see how up on the different pills your PCP is and see if you'd rather see a gyn instead) is what you need the most relief from. i.e. different pills have different forms/levels of progesterone and estrogen and would be more effective for breast tenderness (mircette) vs. bloating (yasmin).

Let me know if you have more questions or if this even helps at all! It's gotten late! And the Ambien is kicking in!

Let us know what you decide with your PCP and what you learn that I need to brush up on! There are sooo many choices out there now, that we have to remember that part of the process can be finding the RIGHT pill for each of us.

Later alligator!

Emily

[Rachel]

Thanks everyone for your replies and input.

lthomas, thank you for the links. That was helpful.

Em, Wow! Thank you for taking the time to type all of that out! I really apprecaite it.

I'll be seeing my pcp next week, so I'll talk to her about all of this and we'll see what we can do.

Rachel

[DancingLight]

Rachel!

I forgot to add (which I think someone already said)--since you wear compression hose every day that should help lessen the risk of blood clots since they do at least help to keep blood from pooling and help keep it moving!

Also, sometimes docs pick a pill and pick it b/c it's what's popular or it's what they have samples of. So, don't hesitate to ask WHY this pill? WHY is this pill good for ME? Also, you can see if the doc things a monophasic (same level of hormones all month long) vs. triphasic pill (three levels of hormones and then the placebo weed) would be good for you. Also, some of the pills have iron in the placebo week and others don't....

Oh, and you're welcome! I felt like it was SOMETHING I could do in return for you!

Later alligator!

Em

[Tanzanite]

When I was on the pill some time ago it did wonders for general health. Oestrogen increases blood volume. Unfortunatley they wont let me have it again due to lack of mobility.