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A MyEndometriosisTeam Member asked a question 💭
Dover, OH

I am fairly new to this and I just got put on birth control for the next six months to stop the pain. And I’m just wondering if you don’t take birth control and then if you don’t have surgery to remove it and you do nothing with it what happens? I know that the stuff grows and spreads so if you don’t get taken care of, like what will happen? have people died from this? I’m just really not sure what to think about this right now I guess. Very uneducated on endo and very stressed. But thankful to… read more

October 17, 2017
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A MyEndometriosisTeam Member

Ive always struggled with side effects from birth control (ive tried the pill and nuva ring) Ive been off of hormones for about 6 years, and maybe it caused my Endo to spread more rapidly, but ive never been told that out right. I personally try to help level out my hormones naturally, with vitamins. I take a women's daily , turmeric and primrose oil. I think you need to do your research and see what sounds best for you. what works for someone might not work for you. I had surgery ( laparoscopic excision) done in feb and the endo came back in about 3 months, I honestly don't believe it was bc I chose not to take Birth control. Having the right surgery done by the right surgeon makes a huge difference. I'm now seeking out a specialist for my next surgery. Here are a few books I read that I found extremely helpful: "Stop Endometriosis and Pelvic Pain" By: Dr. Andrew Cook , "The Doctor will see you now: By:Dr. Tamer Seckin, and "Endometriosis: A key to healing and Fertility through Nutrition" By : Dian Shepperson and Michael Vernon.
Hope that helps!

October 18, 2017
A MyEndometriosisTeam Member

I don't really know the answer but I can tell you that I was just diagnosed this August when I went in for a hysterectomy. I can tell you that all my organs were fused together and they could not identify them. I can also tell you that I had some damage to my rectum and bladder because of this. I am very luck all my parts are still working at this time. What I have read says no you don't die from this but what my doctor said was I was lucky I did the surgery now and that I survived it. I have stage 4 and they could not identify my uterus or ovaries there was so much scaring. I know everyone's stories are different. I just glad I know now and now I can get treatment I need. Sorry I was not more help. I am also new to this and just trying to take it one day at a time. I have to be cleared by GI and Urinary before they will do anything more for the Endo.

October 17, 2017
A MyEndometriosisTeam Member

I am new to this as well, I was diagnosed less than a month ago. But from what I have been reading it can be dangerous. It's rare, and you usually have to have it for a LONG time before it gets bad, but it can become life threatening. In stage 4 the endo breaks off and attaches to other organs. It's not the endo itself that's the issue but rather the effect it has once its attached to other things. I've been reading stories of endo attaching to the bowels and people wind up having to have bowel resections because parts of their bowel were so over taken with endo that there was almost nothing left of the bowel section once the endo was removed. The life threatening part comes when it attaches to the heart or your lungs, complications from that could kill you (heart arithmeas and what not).
Having said that you should know that those are VERY rare cases. Based on symptoms I've been living with endometriosis for over 10 years and am now at stage 3. It's very painful right now, and I doubt I could get pregnant if I wanted to (right now my uterus is completely adhered to the back of my pelvis, not flexible at all). Since I was born I am also the type that gets the rare versions of whatever issue I get.
Everyone is different. There are people who have had endo longer and are still only at stage 1 or 2, everyone is different. I don't what what I wrote above to scare you, but if you're asking there is a chance of severe issues there is, but it's far from the norm.

October 25, 2017
A MyEndometriosisTeam Member

Yes !!! Dr. Seckin is renound. But unfortunately his surgery costs 20k without insurance.

October 24, 2017
A MyEndometriosisTeam Member

Wow that is insane!!! I am very glad to hear that it has worked out that way and everything works properly for you. You are very lucky. It did help. I know there’s a lot of unknowns about endo but this helps me decide what my next step should be. Thank you!

October 17, 2017

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