Tuesday, April 13, 2010

need your endo/medicine information!

Everyone pays better attention to medical information than I do. So I need your excellent memories and detail-oriented minds. Here's the sitch.

My baby sister (25) is not married, and currently living (for most of the year) in Germany. She has a rather odd menstrual history - when she was a teenager, she got her period every two weeks. And they put her on the pill. I was opposed to that, but it wasn't my call. I got my endo diagnosis after that. She went off the pill a couple of years ago when she became uninsured, and was more or less fine. Just recently, she has started getting her period about every three weeks, and apparently it's been really bad. She heard from other women on a runner's forum she's on that this could be a sign of endometriosis. (Not that I'm aware of, but maybe in conjunction with running?)

Obviously endo can only be diagnosed by cutting you open, and she is not interested in having that procedure performed in Germany. She's not planning to return to the States until August, and when she does, she will only be able to get medical care through her school's doctors (I assume that does not include a NaPro option). I will try to get her in to a Catholic OB/GYN then if I can, but there are more immediate problems. She does not know that she has endo, and right now she wants to normalize her period. She's not sexually active, not interested in lupron or danazol (I would never recommend them anyway), and not interested in becoming pregnant as a therapeutic matter.

She agrees that, if possible, she should take something that will not exacerbate endometriosis, on the chance that she has it. I asked her about the three-month pill, and she said she has heard it can cause pulmonary embolism. She is considering taking a low-dose, progesterone-only birth control pill. That sounds like a rational option to me - if it doesn't contain estrogen, it shouldn't make the endo worse; and we're all being handed progesterone like candy - it's not bad for you, right? She said she could even overlap the monthly dosage patterns so that she wouldn't menstruate (I think that means avoiding the progesterone withdrawal bleeding by skipping the placebo pills, but I'm not 100% sure). I told her that anything that avoids menstruating will mean the endo is in remission. Am I right?

And will that work? Is there something else she should take? For purposes of this question, you should assume that no NaPro doctor is available whom her insurance will cover (unless you actually know to the contrary, in which case, by all means let me know), she will not postpone treatment until she can fly back to the States, and she has no objection to taking the pill just because it gives money to the contraceptive industry. (I have boycotted the pill for that reason, but I'm not going to argue that she should if her health is at stake. I understand that a lot of IFers are so gung-ho on NaPro that they won't support any treatment option that is not NaPro, but that is not an option she has; I understand that optimal care might be something else, and that's fine for the future, but for now, I just want her not to get sicker.)

I would appreciate any little bit of wisdom you have, and wouldn't turn down prayers for her health! Thanks in advance, O Wise Blogosphere, for all the help you've given me, and which I'm sure I will continue to ask for many more times.


  1. My dr. recommended my little sister take natural progesterone cream last fall when she had endo symptoms and had it confirmed (as much as you can w/out surgery) by my obgyn. Check out this link: http://www.endo101.com/dose.htm
    She's had real improvement in her pain, and her cycles - she used to bleed for 7-12 days straight. It's not a long-time thing - they recommend taking it for 4-6 months.

  2. I'm afraid the only treatment other than surgery I've heard of for endo is birth control. I wish I had other answers.

  3. I'm sorry that I don't have any clear advice, but I wouldn't discount Lupron completely. I was on it for 6 months and although it made me a bit crazier than usual, it really helped me. The fact that I had NO PAIN for three months was a blessing in itself. I know that it's against the Napro philosophy, but my surgeon wasn't a Napro surgeon (since shelling out $10 000 out of my pocket when I could have FREE healthcare wasn't an option for us) he used a different protocol.

    I'll shoot prayers your way. Hopefully your sis finds some relief soon!

  4. I am going to have to look at my most recent paperwork from my RE because at my last consult with him (in February) he told me that he no longer does surgery to remove endo. They have come up with a 2 pill combination that you take for 3 months which dissolves and removes the endo. I don't remember the name of the meds off the top of my head, but I will try to find my paperwork and let you know.

    It that is not an option, I would say the progesterone only birth control would be the next best thing.

    I will definitely be praying for her health!