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Old 03-16-2009, 01:36 PM   #1
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Going off of the Pill: Endo Sufferers?

Does anyone who has been diagnosed with or battled endometriosis have any insight into going OFF of the pill?

My Dr has told me for years that I "need" to be on the pill to ward off endo, however, I had my first surgery for endo I have clearly had for a long time back in 2007, then, just recently this year, had another lap to remove endo again. I was on the pill the entire time. Almost the entire time- I did take two months OFF of the pill back in 2006 and I had never felt better at the time. I find it hard to believe all of the positive things about the pill when none of them have applied to me. This is the third brand I have tried in 8 years. The rest of the time, other than the two months I took off, I was on the pill continously, barely missing 1 day ever.

I have found over the years that these symptoms-some of which I was born with or had already, have worsened since using the pill:

*Allergies, worse than ever
* Painful BM's/"IBS"
*Reflux developed to the point I can't breath and gag up food-even had endscopy done and some corrections done but it did NOT help. I never even had heartburn until a year or so ago and all of this progressed rapidly.
*Terrible painful headaches
*Numbness in fingers and toes, mostly fingers-This happend on Yasmin a few years back and that is when I switched to the pill I was on.
*Also COLD all the time. I have always had poor circulation and am prone to being cold, even if I exercise, however, recently on the pill within the past few months I freeze as soon as I take it and my fingers go WHITE.


I am not planning on taking it anymore (Apri is what I've been on these past few years). I am planning to take some time OFF of the pill, its Ok if I get pregnant, but, I know my dr wants me to only stay off of hormones for a short while, he says, due to the endo, and has suggested using progesterone to help stabalize my cycle/avoid endo.

Up until very recently, until he told me so I would not have thought to research this topic, I did not know, but apparently one can still ovulate on low dose pills (what I was on prior to Apri) and thus, the endo would NOT go away if that is the case. Dr says its rare, but makes me wonder if that is why mine (endo) never went away.


Bottom line...its my body and I'm afraid to be on these hormones all the time. However, I don't really want to go back to the way I was before the pill. One good thing about it is my cycle is definitely shorter, but cramps weren't relaly going away entirely. That is another thing; I cramp at odd times, in between cycles and after sex. Probably was due to the endo but I still get that NOW and I just had my surgery for the endo! So frustrating!

I guess I want to know if anyone who has had endo has actually gotten OFF the pill and if so how did you fare? How long did it take before symptoms got bad again? When I was off for 2 months when I switched from Yasmin to Apri in the Summer of 2006 I felt GREAT. Skin was clear, sex drive was back, got my cycle regularly and it wasn't even painful like it was before the pill. I am sure in time, the bad periods would have come back BUT for those two months I had NO problems and it sure seems like since I've been on hormones I've had far more problems than plusses. Other than make the cycle shorter/periods a bit more regular (it isn't like I was skipping before, just had a ridiculously long flow like as in 2 weeks or more...gahh) that is all it seems to be doing for me.
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Old 03-18-2009, 03:20 PM   #2
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Re: Going off of the Pill: Endo Sufferers?

Don't know if your still around, but I was treated for endo first with several months of lupron, about 14 years ago, and then went on the pill for the next 14 years (except for two more pregnancies). I'm currently on YAZ---I love it. I had been on yasmine, and suddenly got a bout of yeast infections, went off for 3 months, and then started to feel a flare, so I went back on.

I've been pretty much symptom free for all those years.

 
Old 03-19-2009, 02:05 PM   #3
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Re: Going off of the Pill: Endo Sufferers?

Yep, I'm still around.

Is Yaz a monophasic pill (3 weeks on, 1 week off)? I have been doing some reading on possibly going all natural to see if I can be off of pills. Not really something any dr will support, but something does tell me it can be done.

When you say that you had flare ups, do you mean the endo came back?
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Old 03-20-2009, 10:53 AM   #4
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Re: Going off of the Pill: Endo Sufferers?

Yes, I had burning lower abdominal pain---which was how I finally got diagnosed after I gave birth to my first----that pain returned when I was off around 3 months, going into the 4th. I've also had this return one other time when I had a urinary tract infection years ago. My gyno. says it can flare from things like infections.

I don't think I ever got rid of it, I just got rid of the pain/symptoms with the lupron and then the pill, I'm sure it's there just dormant which is why I occasionally feel it.

Yaz is a newer version of Yasmine---same company, I think a bit different chemically, but basically the same---I think you take the last pill on wed, then go back on Sunday.

In terms of trying something natural, go for it, however you might want to stick to the medical stuff until you have your babies---my endo didn't effect fertility, however, I felt great when I was pregnant---and then I went straight to the pill and didn't have any pain in between.

 
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