Forums » Smalltalk » AMA - Living with Endometriosis

Hello everyone!

This is something that I have been dealing with for 10 years now, through teen years until young adulthood.

Endometriosis awareness is something that I'm becoming quite passionate about, and want to do my part to get more information out there. Too many girls/women deal with it, and no one talks about it.

Feel free to ask me anything, or just comment for community! Sometimes its just nice to meet other people that understand your struggle.

What is Endometriosis?

And what methods do you use to cope with it?

To put it simply, it is a female condition where the inside lining of the uterus grows outside of the uterus. It causes irritation and pain. The level of pain varies from person to person, and how bad they have it, but can range from slightly more painful cramps, to chronic pain all the time.

I have spent 10 years fighting this, with some good years but mostly unpleasant. Some triggers that cause the pain are due to a specific hormone in the body, so hormone treatments are what have worked best for me, but are not a long term solution. I am actually preparing for an excision surgery, where my surgeon will scrape tissue from the pelvic bowl, to remove the harmful tissue. I'll be able to report on that later.

Thank you for explaining this. And my best hopes for the best possible solution for you.

You're welcome!

And just to note, no one is excluded from messaging in this thread. Just because it is a female issue, does not mean anyone that identifies differently can not join in. I feel everyone should be made aware of this, so that future female partners or children can be heard and understood. Far too many doctors write this off as not an issue, as in our heads, and it is not true.

both my niece and I have this it was a long time before I was diagnosed I am not able to have children now (42 now and now is no longer my wish) how are my chances of conceiving? I apologize this is a sensitive topic

endo gang yeehaw. i don't actually have any questions, just wanted to awkwardly stand around in the thread for support. i got diagnosed reaaally early (14-15) and have been on hormonal treatment ever since. sucks to be on hormones for your entire life, but much like most people with endo, going hormone-less means permanent pain and a scene reminiscent of the blood hallways from the shining

just curious...if there were no sociological barriers in the way,(i.e discrimination from doctors: too young, might change your mind, but what about baybeees?), would you consider a oophorectomy or hysterectomy? because i totally would, loool. yeet that sucker into orbit

Can I ask exactly how you were diagnosed? How you convinced your doctors to proceed with further testing and to take you seriously, etc? How you knew that your pain wasn't the 'normal' menstrual pain? I personally get pretty painful cramps during shark week, enough to where I can lay in bed in a fetal position all day just to ease some of the pain and ibuprofen rarely tends to work. But I've never been able to determine whether or not it was the norm. I'm almost 25 and have never had a pap because I identify as trans/nb (hello dysphoria) and the idea just terrifies me.

No apologies needed. Unfortunately on the topic of conceiving there is not a lot I can say. I am not a doctor, so I don't want to give any wrong information.

There is a chance it can lower your fertility, but there is always a chance you're infertile without endometriosis. I would recommend speaking with a doctor for your specific chances.

I know plenty of women who have had no problem conceiving, but also a couple that have had issues.

Hey, support is needed! I welcome all here. And I totally understand. I dealt with it from 13-16 before figuring it out, and those years were chronic pain all day that nothing would help. After hormone treatments its down to just debilitating cramps a couple days during shark week.

I have gone back and forth with that question for a while. It was getting to the point where even though I want kids, I was ready to give up.

However, as I have met with a specialist and gotten a lot more correct information.. a hysterectomy will not solve endometriosis. Because the issue lies outside of the uterus, simply removing that does not fix it. If the problem tissue still exists, it will continue to feed off the hormones present in the body. A hysterectomy may alleviate some of the symptoms, but is not an end all fix.

The idea of a pap also terrifies me, I have not yet had one although I probably should.

My story to get this started is a bit... complicated. I got my first period at thirteen in the middle of dealing with valley fever. I had what I thought was just a stomach ache for a couple weeks, but then it increasingly got more and more painful.

It got to the point where I couldn't move without more pain, but couldn't lay still without just as much. Heat wouldn't work, ibuprofen, menstrual cramp pills, nothing.

Thankfully I had a pediatrician who believed me and did what she could to figure it out. I went to a GI doctor and did a lot of stuff there, got tested for food allergies, the whole 9 yards. Nothing was working.

Eventually the topic of hormones and endometriosis was brought up, and she sent me to a GYN. I was 16 when I met her. Unfortunately my first meeting with her she told me "there is no way it is Endometriosis, girls your age don't deal with pain like this".

BUT. She was willing to check. She started me on birth control to see if balanced hormones would help anything. They solved a flow issue, but not pain. So she moved to Lupron which is a very strong hormone treatment shot designed just for endometriosis and early development.

Within the first three months I was out of pain for the first time in three years. And that's how we figured it out. The rest of my story is a lot of back and forth, but I am willing to keep sharing if anyone wants to hear it.

And macetheace, I would day get yourself checked. Cramps that interfere with your life are/should not be normal. I suggest finding a GYN that specializes in Endometriosis if you can, they are more understanding and knowledgeable than a regular GYN.

To my knowledge a pap smear is not needed to test for this. But instead of jumping straight into hormones they may want to do a explorative laproscopic surgery to check for evidence of the rogue tissue and take biopsies. I wish my first GYN had started with that.

huh. TIL. i'd always been under the assumption that if the uterus is removed, there wouldn't be any more uterine lining to cause issues. didn't actually know that wasn't the case, interesting.

That's what I had been told as well. But the theory is that as we develop in the embryo the tissue that forms the uterus leaves breadcrumbs up tissue in the pelvic bowl. So they are already present, but just not active until either first period, or something wakes them up. The more you know!

Has care for this condition improved in recent years, or does it feel like it's the same old?

I don't know much about what the care was like more than about 6 years ago, but from what I do know it seems to have remained consistently the same.

Unfortunately most women go years before receiving a real diagnosis or any treatment, because it gets dismissed so easily by way too many people. Then the default care seems to be contraceptives and hormone treatment.

There are still a lot of unknowns around this disease, even though it has been around for a long time. They are still trying to determine what triggers might be, how it develops, progresses, ect. They are actually finding a lot of ties to autoimmune issues now as well, per my specialist.