Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Jessye 10/27/2013

So, I have done a lot of thinking about this. I just had my lap at the end of August, found out my Endo is now Stage 4, but at least they removed adhesions from my uterus, bowel, cul-de-sac area, ovaries & around my tubes. BUT, half the point of me having surgery was to fix my blocked fallopian tube, which they did not do because my insurance is a joke. Anyways, I know that having a blocked fallopian tube can cause some infertilely (keeping in mind I have another tube on the other side that is fine). I also know that when I had that Lupron Challenge test done, which basically checks to see how your ovaries produce eggs, my results (in simple terms) showed that my ovaries produce "dead eggs". So pretty much nothing works, & even if I wanted to get pregnant I couldn't (I don't want to get pregnant). Well, since nothing works anyway, why should I be taking my BC pills? I took a month break from them & I felt so much more normal. I know that I am taking them to slow the growth of Endo, but why not give my body a break from the high amounts of Progestrone? (I am taking 40mg of Megestrol once a day right now) I mean, eventually someone is going to go back in there to take that tube & I would guess at the same time remove any new Endo they see. I am going to make an apt with my gyno this week to discuss getting it the hell out. It f-ing hurts! I was just wondering what everyone's thoughts were on this? I am seriously considering just getting off anything that is birth control & just giving it a rest for a while. Please help me make the right decision!! Thank you!

hotchocolate 10/27/2013

I have no answers for you, but I totally get where you are coming from! I feel like after years of being on these hormones, I don't even know what "normal" is anymore, emotionally speaking. I've been tempted to go off, too.

I guess my question would be your periods. My periods are horrendous off of bc. Would yours get worse?

Alana3 10/28/2013

I personally wouldn't because of my.periods being off bc makes it.worse for me

Jessye 10/28/2013

Thanks for the relpies!! Hotchocolate-Normal...good point. I'm not even sure if I know what I am talking about when it comes to 'normal'. Lol. As for peroids, I am not sure. When I first started having periods, before I EVER took birth control, they were only two days, but those two days were AWFUL. (Looking back I can see that I have probably had Endo forever). After I started birth control, I wasn't off of it until I found out I had Endo, and I have had some very awful periods since then, but mostly they were the first period after a lap, so of course they will be awful. But I am curious to find out what happens. I would imangine I would have to wait & have a few periods to see what really happens once my body regulates itself & detoxs from the hormones. Then & again, I would imagine that my periods would be bad, considering how f'ed up my bosy has become. IDK-do you think it is worth a shot?

Alana3-Again, I am not sure excatly how my 'real' periods would be, but I am still debating the pros & cons. Such a big decision!!

Alana3 10/28/2013

Birth control is only.effective after 23 hours it wouldnt take several months for your body to detox...

Jessye 10/28/2013

Well when I was on the high amount of Progestrone before my last lap it took me at least a few weeks to get rid of it...or at least that is what it felt like. Because I am taking about 10xs more than what someone would take just for birth control purposes (someone without all these Endo issues). So at least for me the 'normal' ish feeling didn't happen overnight. Plus the way my peroids are, it always takes months after stopping any birth control for them to become normalish again. But my periods have always been pretty wacko. So IDK..

whyme123 10/28/2013

Jess, I know how you feel I've been on Seasonique for so long that I don't even remember what year but think it was between my 4th & 5th. Endo is such a strange and unpredictable beast that I would suggest your body would react quickly to you not taking the pills. I say try ketting one period come without taking pills and see how you feel and then take it day by day to see how you feel. Dont wait until you run out of pills and then can't get anymore. So give it a try before you get everything removed because that may or may not end your pain.

kDeezy 10/28/2013

Alana, birth control does stay in your system for quite a while. It's not effective against pregnancy when you stop taking it but it still messes with your hormone levels and can sometimes take months to completely clear your system.

Jessye, obviously this is your decision, but if you are okay with the (albeit slight) chance of getting pregnant, I can't see the harm in trying. Worst case: your pain gets worse and you go back on the pill.

VallyWillis27 10/28/2013

Some birth controls will actually store themselves in your fat. There have been people who have taken depo for instance and it took a very long time for their periods to come back to normal. Also, in a very small percentage of people it can cause the ovaries to stop ovulating permanently.
Jessye, I think you are so brave (honestly) to come off your birth control I fear my period like I fear the plague. I say, in my opinion, if you want off then take a trial period off of them. You can always go back on them if your period gets to be too much. I often can't wait until I can come off all these hormones (which I will when we decide it is time to try to have a baby).
Good luck with your decision!

deleted_user 10/29/2013

I agree with the other ladies, if your periods are horrible, I wouldn't stop the pill. I have been on it continual for 10+ years. I went off for a year and a half to try for a family and each month, it got worse and worse pain wise. I feel for us endo girls, bleeding is bad. I do really well on the pill so I"m a huge proponent of it, I know some others don't do so hot on it so it's all personal but my two cents is for those with endo, bleeding is bad, it's like food for the endo, just causes more problems when we have a bleed so I"m very anti bleeding and my treatment plan is the pill continual, I never stop and just deal with the breakthru when I get it every so often until it goes away.

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