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I haven’t been diagnosed but I’m pretty sure I have endo

I haven’t been diagnosed but I’m pretty sure I have endometriosis. I have excruciating cramps and not just during my period it could be at any point like the last few days I’ve been cramping it feels like someone slowly stabbing me and I’m no where near my period actually I just got off like a week and a half ago maybe a little longer. TMI but it’s also very painful when I’m going #2. I really thought I was crazy because I knew deep deep down that SOMETHING wasn’t right I knew there were different diseases and things that could make periods worse but not specifics when I told my doctor this and explained the excruciating pain she told me to take alieve... yup and guess what. It does nothing. I still take it though I guess it makes me feel like it might be doing something even though I still have to cancel any plans for the day because I can’t move from my heat pad unless. It’s curled in a ball rocking back and forth. Then I took a trip to the ER because I was in more pain than ever but I sat in a room for 2 hours my guess. Just a girl on her period all females get them she’ll be fine. When I finally found out about endo from a close family friend who was in med school and told me about It after I had expressed some symptoms I looked it up in more detail and found some videos. The stories I heard girls feeling crazy and then 5 years later being diagnosed the symptoms the pain. I lost it. I started crying because I felt like I wasn’t alone. Like I wasn’t going crazy. My grandma was also diagnosed and I know it’s hereditary. The thing that terrifies me? Infertility. I’ve always always dreamed of being a mom. Most kids had imaginary friends. I had imaginary kids. I want children so badly and I know there’s adoption which I’m very open to and had thought about even before finding all of this out. But I’ve always wanted the experience. Yes even the morning sickness and swollen ankles. I want to feel them move I want to go to that first OB appointment and hear their heartbeat for the first time. And figuring out that it’s possible I’ll never have that. Well it broke me and all I could do was cry to my boyfriend. And I know I’m getting ahead of myself because I haven’t even been diagnosed and I’m only 18 and I’ve only had my period for 7 years and I’ve only been experiencing these symptoms for the last 2 years or so. But it’s all so very terrifying and finding it all out in one day. That’s a lot for anyone. I’m scared to find out the truth. I don’t want one of my worst fears to come true. I do not want to be told I’ll never be able to carry my own children... how do you process all of this?

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Raine14's picture
Oct 10

Hey Lex, welcome to our endo group :)
Whew! Your last question is a hefty one. For me, it involved a lot of crying and begging -- usually for someone to please remove this d*** uterus! I can relate to so many of the things you've said: cramps at all times of the month, excruciating cramps during the period, excruciatingly painful bowel movements, ER trips with dismissive doctors... Yep! Sounds like endo to me.
First off, talk to your doctor, even if it's just your regular doctor, about getting a prescription-strength NSAID. NSAIDs work best for cramps because they actually halt the production of the cramp-inducing hormone in addition to easing the pain and inflammation.
Secondly, breathe. Endometriosis might be the leading cause of infertility, but most women with endo can and do still get pregnant. I think the stats are like 60-70% of women with endo will go on to have children. Surgical removal of endometriosis increases your chances too. But in all honesty, yeah, I had a few moments after I learned I had endo where I felt like I'd been punched in the gut (figuratively and literally, lol). I ended up talking a lot with a counselor to figure out the whole emotional mess.
And just to point out, your grandma couldn't be your grandma without having a kid, even though she had endo. In my family, my aunt, cousin, and sister all have endo. Of them, only my aunt (who didn't get married until she was almost 40 anyways) had infertility. My cousin even had twins, which I don't envy. Sounds a little too crowded in the uterus for me.
Have you looked into seeing a specialist? This was kind of the big thing for me. Mine not only knew the latest and greatest about endo treatment, but also was so kind and compassionate. I started crying in her office during my first visit because she so quickly believed me -- I had come super prepared with charts and timelines, lol, and she didn't even need to look at them. Major support system right there, and after we get told so many times that "period pain is normal" or "take an ibuprofen and get on with it", that support system is needed.
Sending lots of *hugs*

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Oct 23

Thanks for that. It’s just scary and a difficult thing to process I’ve been trying to get into the doctor but my insurance absolutely sucks and money is tight. The other thing that has been scary is what if I go in to the doctor and they don’t believe me I’ve heard the statistic is like an average of 10-11 years before actually being diagnosed. I know not all doctors are so dismissive I just hope the one I see isn’t.

Raine14's picture
Oct 25

It is scary, especially going it alone. Try to take someone with you who can be your advocate and stand up to the doctor if need be or just hold your hand as you go through this. *hugs*
My first gynecologist didn't believe me. She told me it was either gastro-related or all in my head (she was so condescending and dismissive, that if I hadn't been drugged to the gills on pain meds, which was making the room spin, I would have been tempted to punch her), and then sent me off to a gastroenterologist. The gastro wasn't a complete waste of time, because I found out my gallbladder was about to die on me, but in the end I stopped the various tests, Google searched for an endometriosis specialist, found one 5 hours away AND on insurance, and booked an appointment. Don't give up looking.
The statistics are based on when you start showing symptoms, not how long you bounce between doctors looking for a diagnosis. For instance, it took me about 7 years from showing symptoms to actually getting a diagnosis, but about 2 years of doctor hopping before finding one who was willing to look inside. A good portion of that time is women ignoring the pain, GI problems, excessive bleeding, etc. because we've all been told for so long that "periods are supposed to hurt" or "some women get cramps, just take an advil." It isn't until we end up in the ER that we finally realize that this can't be normal.

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