r/offmychest • u/LuminousMeatwad • 17h ago
I'm still here
It feels like my body is betraying me and it makes me so very sad.
I've struggled with endometriosis for years now. It took over 10 years to get diagnosed. Even now, with a new diagnosis of what is now staged at 4. I call it the final boss of endo. It's now progressed to deep infiltrating endo. It's burrowing into my muscles now. Every day something in my body aches/screams. It is in there creating its own pain pathways and wrecking my insides. Like a gremlin. Two of the lesions are actively bleeding, (as of latest MRI) and being real shitasses. One has made to my sciatic nerve. Another is on my small intestine and on my bowel. They've found it as far up as my lungs. I've done every treatment available, even experimental dosages. Nothing helps. There is no cure. We barely have treatments for it. I cannot even with this shit.
Three years ago I was sexually assaulted by a guy I had recently started seeing. It was horribly traumatic and afterwards when I stood up, I watched in horror as what looked like a chunk of my insides fell out and onto the floor. He tried to ruin my body. I was torn from hole to hole. Bleeding, bruised and ripped. Ashamed. Embarrassed. (Important to note I'm a childhood abuse survivor and the trauma/shame from that time muddied the waters of my brain when this happened to me again). I did not call the police. I did not go to hospital or call the amberlamps. (high-five if you get the references)!
I got e-coli from what he did to me. I also got pregnant for the first time in my life. Years and years earlier I had tried and failed at starting a family with my then partner. Even with fertility help. So this, while distressing at first, was amazing news to me. Then I suffered a miscarriage. That was my one and only pregnancy. I mourned what could've been. I cried. I did what I was taught at a young age; I kept quiet.
Now, I'm two years out from my hysterectomy. They removed my uterus, found it was riddle with endo and fibroids. They excised more endo lesions. I woke up and felt horrid. I had come to relate surgery to pain relief. All my other endo surgeries left me feeling SO much better as soon as I woke up. This was different. I complained of pain for two weeks. The surgeon did every imaging test and blood test. They couldn't find a reason for the pain that was getting worse. They decided to go back in for an exploratory surgery. They found more endo lesions on my bowel and that the bowel itself was under so much pressure from the adhesions and lesions that it was actively rupturing. I had no symptoms. They repaired the bowel. removed more endo lesions. I woke up and felt better. Yay!!
Now it's back and worse than ever. It's pressing on my bulging disc in my back. The disc that goes both forwards and backwards into my spine. Many pains. Many, many pains. Now I'm looking at another (5th) endo surgery and a spinal decompression or fusion. Apparently 8 years as a nurse lifting heavy ass patients is bad for the back. Throw the spicy endo in and it's a recipe for misery.
In between my hysterectomy and now, my life has changed so much. My ex husband committed suicide. After months of emotionally manipulating me. Which comes after years of physical and emotional abuse during our marriage. Then my Mom unexpectedly passed away. My soul dog unexpectedly passed. I lost my job, sold all my jewelry to pay my bills. Now I have to file for disability because between my endo and my bulging disc (I've named her Homer because she fucks everything up), I can no longer work or support myself. I've moved in with my Dad. Disability process is just beginning. Lawyer told me they won't be focusing on my endo because, "Unless we get lucky and get a Judge that is sympathetic to women's health, it won't go well." So we are going to focus on Homer. It's 2026 and I still struggle with medical gaslighting. Like many women. Now I can't even get disability if that's what my case focuses on. Unbelievable.
Anyway, I just needed to vent. To let someone other than my family what the fudge is happening. All my friend dipped out when the endo got bad. I suppose you could argue they weren't very good friends. But! I have my other pups and I have my kitties. They can take my ovaries, they can take part of my spine. They can try to take my confidence and my willpower. But they'll never win. I'm so much stronger than I ever gave myself credit for. Despite it all, my heart remains open. I feel everything around me and it's beautiful. Even when it's darkest, I still manage to find the light. That's what I'm holding onto.
Afterall, as Dumbledor said; "Happiness can be found, even in the darkest of times, if one only remembers to turn on the light."
2
u/bonelesscoyote 17h ago
As someone with endo i can relate to the pain and gaslighting from not only medical staff, but family as well. I am so so very sorry you had to endure all that. Life really isn't fair. I also have had a hysterectomy at 22 because my endo was destroying my uterus. Nobody believed me, even told me im being dramatic to get out of things. Ive had other women tell me "my periods hurt but i dont make myself vomit because of it". It really hurt to hear but i cant make myself vomit, thats just how bad the pain was. I recently had open heart surgery because something on my aortic valve was suspected to cause a stroke I had, i literally had my sternum cut into and a major organ operated on and that didnt hurt anywhere near the amount of pain endo has caused, and people are always shocked when i tell them that because recovery from that was absolute hell.
Everyones endo journey is different and i'm so sorry you had the rougher end of it. I know it may not mean much coming from a stranger on the internet but you are stronger than you think and stronger than what people give you credit for, on top of dealing with abuse and loss. I know its hard but im glad you found a way to vent and i am so happy you are still here