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Needing Advise from anyone with Endometriosis.....

I was recently diagnosed with Endometriosis last month during my womans annual exam, along with two ovarian cysts.  I underwent a Laproscopy Surgery two weeks ago to remove the cysts and the endometriosis, but unfortunately when they went in there, the dr. said I was a mess, they were able to get most of it but couldn't get all of the endometriosis that was near some of the organs. She did say my female organs were still in great condition though. On Monday, I went in for my post-op appointment and to find out my options for treatment.  The options my dr. gave me were birth control pills, a birth control shot Depo Provera, or a strong treatment shot Depot Lupron, and of course, just leaving it be without any treatment, which would most likely result in another surgery within a year or so and risk damage to my female organs.

My question for anyone who suffers from Endometriosis, how bad was your situation and what route did you take to treat it?  I am aware that this condition is not curable, and if not treated it can cause a lot of health issues down the road, one particular, infertility, which is my biggest concern.

I am 31 years old, just got married last October, and very much want to have a family in the future.  My husband and I wanted to wait another year or two before trying to conceive.  Now we are faced with this Endometriosis situation, and i'm trying to figure out my best route to treating it.

The first option my dr. suggested was the Depot Lupron Shot, basically because I still have the Endometriosis still there even after surgery.  I did some research and reviews on this drug, and I have to say I am really scared and nervous about all of the side effects that would come along with it.  I was told it would be two treatments, one every 3 months, and then after that I would go on birth control pills until we are ready to try and conceive.   I just can't see going through all of the menopausal symptoms along with other side effects from add-back therapy.  Has anyone been through this treatment?

 Would also like some feedback on using birth control, either by pill or shot, as I have never been on birth control in my life.  Just looking for some advise in trying to make this important decision.  Thanks.


Re: Needing Advise from anyone with Endometriosis.....

  • Oh sweetie! My mom had Endo, so if you'd like I can put you into contact with her for the first-hand experience, but I can tell you that she was in a lot of pain before her eventual hysterectomy. There's still hope, though. It may be a tough road ahead of you, but you will get through it. Your female organs are still in good shape, so that really does bode well.

    As for BC, I do have some experience with that. I've been on it since I was a freshman in high school because my doc didn't want me to experience the things my mom did if at all possible. I've been on the patch and also the pill. I use Seasonique now. I've been thinking of doing the shot, but the biggest concern I've heard with that is weight gain. Either way you choose to go, the hormones should help in the long run to preserve your ability to have children. Before I started BC, I had horribly painful and heavy periods that lasted all week, but now they last five days and are slightly uncomfortable--nothing a Pamprin won't fix.

    I really hope this helped a little bit. Seriously, though, if you'd like I will let my mom know and you guys can talk.

  • I never post here, but I have stage 3 endo. I've had endo ever since I was 14. I took/ take the Lupron injections, and those do seem to help. I have taken 1 depo provera shot in the past, and will never take it again.

    If you are scared to take the Lupron injections, have you loooked into an herbal route?


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  • I have stage 1 endo.  I don't want to scare you, but I'm probably going to... sorry.  My stage 1 endo is what we blame for our inability to have children.  We tried for six years and it never happened.  That said, my advice for you, if you really want children is to try as soon as possible.  Obviously I don't know your business, and there may be very good reasons you want to wait, but if they aren't SUPER good reasons, you should know that you'll be most fertile for 3-6 months after this lap surgery.  Also, endo is different for everyone.  I've know people with stage 4 who get pregnant multiple times with no trouble, and then there's me... you just never know.

    I'm on birth control now, Yaz, and it's ok.  I still have cramps every month.  The one thing that really helped me was diet changes.  I started eating LOTS of greens and cut gluten out of my diet.  When I quit eating gluten my whole life changed and my endo pain went from all month long to just a few days a month and was much less painful. 

    As for Lupron, I would stay away from that if I could.  I never went on it because what it did scared me, and the side effects sounded worse!  I couldn't set myself up for osteoporosis in my 20s... the people I did know who went on it said it was the devil.

    Feel free to ask if you have more questions, I hope things get better for you!

    TTC #1 since 10/2006 Lap shows stage 1 Endo
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