11:47 pm - 08/18/2011

Best birth control for endometriosis?

Hey VPers!

I just had my laparoscopy yesterday morning for a rather large left ovarian cyst which turned out to be an endometrioma. My surgeon also found some spots of endometriosis and cleaned those up.

Anyway, he said that it would be a good idea to get on birth control to stop menstruation so that this won't happen again.

I'm just curious as to the types of birth control those of you who have endometriosis have used and what you like the best?

I didn't really WANT to do birth control as I've purposely stayed away from birth control for many years just to be more natural and healthy, but if this is something I have to do, then I have to.

Also, what are the safer forms of birth control? And are there certain tests I should have done before getting on birth control, like testing for blood clotting, etc.? As I do have high cholesterol and am afraid of this happening while on the pill.

Thanks so much!
shyshutterbug 19th-Aug-2011 03:57 am (UTC)
Regardless of why you're taking it, HBC is something that's very much dependent on personal experience - what works well for you might not work well for another person. I have endo and have used multiple pills over the years with varying degrees of success, but my experience with specific pills (or HBC in general, for that matter!) should not be used as a barometer for how you as an individual will do on them. As far as "safety" is concerned, that's another term with a widely variable definition - all forms of combined HBC (meaning it has both estrogen and progesterone in it) will present small risks in more or less the same percentages. The take-home message is that no form of HBC is inherently superior to another - it's all dependent on individual body chemistry.

There are no specific tests necessary for starting HBC.
kaberett 19th-Aug-2011 05:13 am (UTC)
Be aware that if you get migraine with aura you should not have oestrogen-containing pills. That said: here is the list of stuff I've tried or am otherwise aware of.

Good luck with finding a management plan that works for you.
kaberett 19th-Aug-2011 05:14 am (UTC)
(Also? "Natural" isn't the same thing as "healthy" - many of us are much healthier on drugs, including HBC, than we are off them!)
paraxeni 19th-Aug-2011 03:45 pm (UTC)
High-five for Kaberett!

Me off drugs = dead
Me + drugs = nothealthybutnotdead

For those of us that need drugs to stay alive, hearing things like "I avoid all drugs and medication because it's unnatural" often sounds judgemental.

Funnily enough I require not one, but two forms of hormonal BC to be alive. It's hilarious because I don't have sex that could get me pregnant, and I'm also about three types of infertile!

The absolute best thing in terms of suppressing my evil endo has been my Mirena IUS. Like many endo sufferers I find that oestrogen makes things worse. Progestin only methods like certain pills (POP/mini pill) and Implanon/Nexplanon can reduce bleeding and suppress the activity in deposits around the body. I'd avoid the depo shot if I were you, purely because there's no way of getting rid of it once it's in you, and if you have a bad reaction that means you're stuck until it wears off.
disturbedme 19th-Aug-2011 04:18 pm (UTC)
I'm sorry. I didn't mean to sound judgemental; that was not my intention at all.

It's just that I take enough medication for other health issues that I hate that I'll have to take more for another health concern on top of the ones I already have.

And with my health concerns, having to get on birth control kind of scares me. But I know that's something to talk with the doctor about.
paraxeni 19th-Aug-2011 05:12 pm (UTC)
Honestly? Just focus on the fact that the medications are helping you, rather than considering how many you need to take. It's very easy to get caught up in "I need to take X amount of pills a day", but if they're helping you then the amount is not worth worrying about. It only adds to the stress already present in your life from being ill! Or do what I do. Every time I go past another multiple of 10 I get a "poorly present". Yeah, I might be chugging down tons of pills but I have a new distraction in the form of a cute pill case or new wig.

The hormones in BC already exist in your body. The only difference is that you're using the BC to override your existing ones. I've got various autoimmune, neurological, digestive and other physical health problems and the hormones have only ever helped. My endometriosis was going to end in one of two ways, finding a successful treatment, or me killing myself. 25 days of agony a month was unbearable and ruining my life. Then on came a wonderful doc and his idea to put in a mirena. Five years down the line I'm on my second and it's been a literal lifesaver. It only emits a tiny amount of levonorgestrel every day, and can be removed easily by a nurse or doctor if it causes problems.

*hugs* you're not alone in here.
disturbedme 19th-Aug-2011 04:20 pm (UTC)
If I try a birth control pill, I will probably want it to be a mini pill, but I'd also like to stop having a period... but I read that not all mini pills will stop ovulation and thus some will still have a period while on it?
paraxeni 19th-Aug-2011 05:16 pm (UTC)
You're right. That's why progestin only methods like implants or the mirena tend to work better for endo suppression, as the level of hormones is constant.

If your doctor is willing to give you a d&c prior to getting something like a mirena then (purely anecdotally from my experiences and that of friends with endo) it seems to increase the chance that bleeding will not recur past the initial settling in period.
knittinggoddess 19th-Aug-2011 05:34 am (UTC)
If you want to have as low a dose of hormones as possible, I recommend looking at the Mirena IUD. It's also used for endo treatments. Here's the first non-commercial hit for "endometriosis and mirena", a page from endometriosis.org.
baronvonbiron 19th-Aug-2011 06:06 pm (UTC)
I agree with this. I'm only just past the first month of my Mirena, and while I'm still in the "when is this period going to END, AGH" phase, it's already beginning to help with some of my pain.

Its possible downsides are really very minimal in comparison to other forms of HBC.

What I will say is that if you DO plan on trying the Mirena, make sure you get your pain meds refilled the same day. The post-insertion cramps were NO JOKE.

Other than that, I <3 my Mirena so far.

Good luck finding the best option for you, OP!
baronvonbiron 19th-Aug-2011 06:09 pm (UTC)
Oh, and you should totes check out endometriosis. There's a bunch of tags you can scroll through and see others' experiences with various forms of HBC.
baronvonbiron 19th-Aug-2011 06:18 pm (UTC)
Ohohoh, SORRY. One more warning: most HBC will take a bit to start doing the trick, even if it's right for you. I had a really crummy 3 weeks with the Mirena at first, but things got significantly better from there.

Again, I hope you find something that works wonderfully for you.

And uh, apologies for multiple comments. I always forget things. ;)
emptysthemepark 19th-Aug-2011 07:29 am (UTC)
In my research into endometrial ablations recently, I ran into a lot of women with endometriosis online. I don't have it - just nasty, bad periods - but many women with it have had ablations done to avoid hysterectomy.

If you want to try something lower in hormones or if you have migraine with aura as mentioned above, the Mirena IUD is a good option. It doesn't work for all women, or sometimes works to a point then stops, but it's less invasive than surgery, no estrogen and lasts up to five years. I had a lot of side effects sadly (weight gain a big one) but my periods did go away for almost the entire five years, and a lot of women are very happy with it.

If fertility isn't an issue, you can consider Novasure or other methods of endometrial ablation, which is an outpatient surgery that burns out/removes the uterine lining, the goal being that with no cells there, no monthly lining grows, nothing is shed. I'm sure your doctor is going with the least invasive and easiest treatments first (hence HBC) but if that doesn't work out, it's something to keep in mind to ask about. If you want to try a pill, maybe something classed as low - eg Ortho-Tricyclen-Lo - could be good for what you want?
paraxeni 19th-Aug-2011 03:50 pm (UTC)
Just a quick note to add to this, although Mirena will work as a contraceptive for five years, for endo suppression it's common to rotate devices out every three. I found going past three to be horrific, and it allowed a lot of new deposits to form.

Also, if fertility is an issue then a d&c combined with an insertion can make bleeding disappear until the mirena is removed.
emptysthemepark 19th-Aug-2011 05:38 pm (UTC)
Thank you! Like I said, I don't have it, but a lot of ablation folk with endo had previously tried a Mirena. I had an ablation and Paragard insert at once and I know one woman with endo had ablation and then a Mirena trying to avoid hysterectomy.
inmeggsyoutrust 19th-Aug-2011 01:03 pm (UTC)
I had a similar situation as yours, 19 cm ovary that ended up being an endometrioma, doctors removed that and a smaller one on the other side.

They recommended Seasonique or Lupron. I opted for Lupron without doing any research, and I had all the crazy symptoms, but when I went back for my 6 & 12 month post surgery ulatrsounds, they found nothing.

I was on Lupron for almost 9 months, but only had 1- 3 month shot and 2- 1 month shots.
disturbedme 12th-Sep-2011 12:22 am (UTC)
What have you been on for your endometriosis since then (after the Lupron)? Nothing?

Or are you on a type of birth control now?
inmeggsyoutrust 12th-Sep-2011 12:51 am (UTC)
Nothing since the lupron. It's almost like the endo just went away. Lol. I never even knew I had it until I had the surgery. They thought the 17cm growth was cancerous. Super glad it wasn't. :-)
Hailey Cook Lupron22nd-Jul-2013 06:04 pm (UTC)
I've had/have (really can't cure endo)and that the surgery to remove it from my vaginal wall and then went on the Lupron for 6 months after. My doctor told me that the endo could indeed come back after 6 months or 6 years depending on your body. I went on LoEstren fe 24 and had light spotting at the end of my pack which would count as my period. My family doctor switched my pills to something else which I forgot the name and I only get my period once every 3 weeks. It helps with my pain and my headaches. Really to be honest through all the research and talking with my doctors, having a child makes the pain easier to deal with. I don't know why but that's what I've come to find out. I've also read that having a kid could also kick start endo as well. You could have it and it could be dormant until you have a couple kids and it could start up. Its really all confusing but I know after I try to have kids, I'm just having it all taken out because dealing with ovarian cysts is not fun and I'm just over all it.
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