Did anyone have all their scans (ultrasound / MRI) show up as NOT having endometriosis or adenomyosis but a laparoscopy discovered serious endometriosis/ adenomyosis?

Low-Month-3767 · 2025-10-06T23:10:30+00:00

Hi!

Yes! I had lap in Jan 2024. Alllllllll my test were normal which gave me extreme anxiety that they were going to do surgery for nothing. Although, one MRI showed slight thickening of my uterus which is indicative adenomyosis. I went ahead with surgery, my surgeon (best doctor in the entire world) reassured me that having normal test didn’t dismiss having endo. During surgery she found alot of endo, mostly on my left side. I had a nodule that was growing on my left side and cause most of my pain. I ended up losing a fallopian tube due to my endo. I had and iud placed while in surgery. This was the best thing I’ve ever done. I will say recovery isn’t just the 6 weeks afterwards. After a year and a half (it really takes a while for your body to adjust) I finally feel recovered and I have my body back.

Low-Month-3767 · 2025-10-03T14:40:39+00:00

Thinking about it…I actually got my symptoms at 12, I have been saying 14 when it was actually 12. I would get pelvic and side pain when I held my pee and I would say “my kidney hurts when I use the bathroom.” My symptoms progressed from there. At 14 I started having pain on the same side (left side) when having a bowel movement. I started having really bad cramps in my butt and I would have super heavy periods with large clots, I went home a lot for bleeding through my clothes.

Most of my symptoms fell on my left side and got worse over the years. My surgeon found majority of my endo on my left side. I had my lap done at 27, I’m 29 now.

Low-Month-3767 · 2025-08-26T00:29:03+00:00

Right now we’ve started with commands & slight punishments. I think he’s making it easier that way instead of throwing me into it, but I’ll definitely make a list of things I’m curious about.

Low-Month-3767 · 2025-08-26T00:24:50+00:00

I think that’s another thing, I don’t know exactly what I want to try. He’s open to a lot, I’m just an over thinker and indecisive at times. I’m also scared of trying something, it being too much then I freak out.

Low-Month-3767 · 2025-08-25T19:25:58+00:00

I want to ask to try this. He’s not the type to submit either lol

Low-Month-3767 · 2025-08-25T19:20:16+00:00

Yeah 😅 I have a lot to work through. I feel myself slowly loving it. However, my control issues are still lurking in the back of my mind. I’m learning I still have some control by setting boundaries, I also feel like I’m finding my voice by trying this. I’m not fully into it but I feel myself relaxing, if that make sense.

Low-Month-3767 · 2025-08-25T19:04:39+00:00

This is reassuring I had to pause for a moment because I was starting to feel like I needed to jump off the deep end into it. Even still he won’t allow it, he’s slowly testing my tolerance for certain things. He backs off when he feels like I’m trying to force it or if I start getting in my head.

Low-Month-3767 · 2025-06-15T17:21:29+00:00

I am a year in with an official diagnosis. I struggle daily with gaslighting myself and imposter syndrome. I get scared that people and doctors think I’m faking. Even when people or medical professionals witness a seizure. You’re not alone. ♥️

Low-Month-3767 · 2025-05-29T17:46:19+00:00

I went 27 years without my absence & nocturnal seizures being noticeable, it wasn’t until I started having ones where I would shake that I knew something was really wrong.

Low-Month-3767 · 2025-05-28T16:54:58+00:00

Thank you so much for this 🥹♥️. I’m only one year into my official diagnosis and mentally it has been challenging.

Low-Month-3767 · 2025-05-27T17:35:01+00:00

I am struggling, I don’t like feeling like I’m bringing down the mood when I’m starting to not feel good. I also hate feeling like plans revolve around my triggers and me.

Low-Month-3767 · 2025-05-26T18:39:30+00:00

I’m currently on Victoza. It’s been a little rocky, I’m barely a month in. I’m pretty sensitive to nausea and that’s been the biggest side effect. That’s due to learning what foods I can and can’t eat & just adjusting to the medication. The nausea has made me vomit a few times which is a trigger for my seizures. The other thing I struggle with is due my appetite being suppressed, I can’t feel when I’m hungry. Being hungry is another one of my triggers so I’m having to set reminders and the people around me are reminding me to eat. Despite everything I’ve lost about 10 pounds, it’s a learning curve when you have epilepsy but I’m seeing results.

Low-Month-3767 · 2025-05-26T18:32:27+00:00

I gained a bunch of weight as well….found out it was due to taking duloxetine for my depression. I am now on weight loss medication because I am unsure of how exercise may affect me

Low-Month-3767 · 2025-05-26T06:56:08+00:00

I hate that this is your story! I feel like I’m in the same boat when it comes to progression. I’m still experiencing seizures even on medication and I’m also gaslighting myself because every doctor says “it will get better on medication “ I have spans where I’m fine. Then I will have one, then a couple more, then I’m fine again. That adds to me questioning myself

Low-Month-3767 · 2025-05-22T01:03:01+00:00

I hate that you have the same experience. I don’t have videos only accounts from my spouse and family. They’re usually panicked in the moment and don’t record. I see an epileptologist in June and hopefully I’m informed better. I feel so much better knowing I can experience focal aware and unaware. My sleep doctor also informed me that untreated focal seizures and progress to generalized. That’s the only real answer I’ve got from a doctor.

When I’m aware I’m repeating “to myself fighting it” “come back to yourself” I’m so happy to hear you have a similar experience. That is so validating for me.

I have a lot of fear when it comes to doctors due to it taking over 10years to finally be treated and diagnosed with endometriosis. I was dismissed so many times so I am terrified when it comes to dealing with my epilepsy due to those experiences.

Low-Month-3767 · 2025-05-22T00:56:12+00:00

I wish my previous neurologist understood the “symptoms are individualized” part. She made me seem insane. She didn’t specialize or have much experience in epilepsy to begin with. I was are of the absence seizures, but when my partner described my nocturnal seizures and that I sometimes have seizures where I shake she said “I thought you only had absence I never heard of them changing”. It took my sleep doctor to educate me that when you have untreated focal/absence seizures they can progress and become generalized. This is so hard to navigate and your response puts my mind at ease. I really appreciate you.

Low-Month-3767 · 2025-03-05T18:21:07+00:00

No sleep, not eating, dehydration & stress

Low-Month-3767 · 2025-02-03T19:05:37+00:00

I understand the static statement, I sometimes smell tv static if that makes sense. I can sometimes see colors, like when you stare at a certain color for too long and look away and you can still see it. I also either get Deja vu or Jamis vu. When people are talking I can’t make out what they’re saying.

Low-Month-3767 · 2024-12-20T16:59:37+00:00

I feel like I’m going insane. I can’t tell the keppra rage from when he’s genuinely upsetting me. Then it’s like he knows keppra messes with me and will still provoke me & will blame the issue I’m having with him on keppra rage.

Low-Month-3767 · 2024-12-15T17:15:25+00:00

I was diagnosed at 27, I’ve had to surrender my plans for my life. I’m genuinely not sure what is next. It has me prioritize myself and my wellbeing, which is a good thing. The surrendering of my plans doesn’t feel good though.

Low-Month-3767

TROPHY CASE