u/moonxmochi

Before you judge me, you should probably know why I feel this way. I had my excision surgery 6 months ago. The year leading up to my surgery was one of the most traumatic times of my life. I was abused by my family members for being sick. I don’t want to go into details but they would completely break my mind and spirit. They told me I was worthless for being so ill and threatened to stop paying for all medical care if I was “disobedient.” They are also misogynists and far-right, you can imagine how they act towards a daughter with endo. I think this trauma changed me permanently. I feel like I have some trauma response to the extreme pain and medical mistreatment I endured as well; whenever I think about it I feel scared and hopeless and alone. I really don’t want to have to recount my endo journey to the PT and remember my pain. I don’t want to talk about my pelvic symptoms and my surgery. Even if it’s for treatment and getting better.

Even typing this, my mind is going foggy like I can’t think straight. Like my brain is trying to create some barrier. I did have pelvic floor PT for a few months before surgery and they were great. Unfortunately it’s also associated with abuse as well bc this was before I moved out for college and that’s when my parents were the most horrible for me. My father would scream at me in the car on the way to pelvic PT and I would be bawling and I would arrive at the appointment trying not to cry. Which obviously created a negative association. But I really do need help with hypertonic pelvic floor, as I have EDS as well which could be a contributing factor. I have no problem with going to PT twice a week for EDS, I just really don’t want pelvic PT in particular. What should I do?

For some reason, the vast majority of the people I see with EDS (generally, for a variety of types) are white. I rarely rarely see other Asians with EDS. I’m first gen Korean American- I was born in Korea and then moved to the United States when I was young. Is there anyone else in this sub with Asian heritage and also EDS?

Does the endometriosis have to infiltrate all the layers of the bowel down to the mucosa (so that it’s visible on a colonoscopy) to cause rectal bleeding? I was wondering about this.

I was officially diagnosed with hypermobile EDS this spring and unfortunately I have learned online that there is an extremely negative stereotype of EDS patients online. I feel like this is unwarranted and most likely ableist. There is an influx of medical professionals on reddit complaining about people self diagnosing themselves with various conditions and I’m just thinking this can’t be happening in the way they’re claiming it is…

I did not self diagnose with this condition at all, I was evaluated by a major hospital where they reviewed all my medical and developmental history, assessed me based on the 2017 hEDS criteria (not just the beighton scale, obviously) and eventually it led to a diagnosis of hEDS. Me and my doctor both agreed on the diagnosis and decided not to pursue genetic testing, since I didn’t have the extreme skin fragility or aortopathy that would warrant investigations for classical or vascular types of EDS. Never once in this process, or after my diagnosis, was I dismissed or mistreated by medical professionals regarding my EDS diagnosis. (I did experience awful mistreatment and gaslighting regarding some of my other unrelated illnesses in the past but that’s not the point.)

I also can’t fathom why some medical professionals think EDS is psychosomatic or not real… while hEDS does not have an official gene mutation discovered yet, it is well established in the literature as a heritable connective tissue disorder. hEDS shares many specific characteristics with genetically confirmed forms of EDS like hypermobility, dislocations/subluxations, pelvic organ prolapse, mitral valve prolapse, abnormalities of the eye, spine, feet or hips, aortic root dilatation, hernias, etc. (Although severity is obviously different in each subtype.) The fact that someone would call hEDS made up or fake is just inconceivable to me, and frankly screams uneducated.

So all of this made me wonder, are people actually self diagnosing themselves with Ehlers Danlos syndromes based on what they saw on tiktok? I don’t understand why anyone would do that, like saying to their doctor that they diagnosed themselves? Is this something that is actually happening at a concerning rate, or just an ableist overgeneralization? By the way I’ve never had tiktok or been on there, so I don’t know what tiktok is like.

So I have EDS, a history of severe endometriosis (successful excision surgery) and interstitial cystitis. I was diagnosed with IC after I continued experiencing bladder issues even after they removed endo from my bladder and unglued my bladder from my uterus, cervix, rectum, and colon mesentery. It was a mess in my insides and I’m doing so much better but I was still peeing very frequently.

The urogyn who diagnosed me was very kind, validated my pain, and explained things well. Which is why I feel even more hurt by what happened yesterday. So I was getting my third bladder instillation. To those who don’t know what that is, a bladder instillation is when they put medicine into your urethra after obviously numbing it with lidocaine jelly. I failed to see an improvement in my symptoms after the 1st and 2nd instill, and I wanted to try a third one after deciding maybe this treatment is not for me.

Let me just say that I am not a stranger to invasive medical procedures. Due to my endometriosis, I have had to endure vaginal ultrasounds, internal exams, internal gel MRIs, rectal exams, pelvic floor PT, etc. Ever since I was 17. They were all painful, but I had to endure it because I wanted answers. (And yes, a pelvic exam and the MRI did reveal that my organs were adhered together before surgery.) But this one was different. It was a level of extreme pain I never experienced before during a procedure.

A nurse entered the room and put lidocaine on that area. When the doctor came in tried to put the catheter in my urethra, it was so agonizingly painful. Something was very wrong. My legs were wide open in the stirrups, exposed and I screamed and howled at the top of my lungs and my doctor didn’t stop. I was screaming and screaming. I’m sure everyone in the clinic could hear me scream. I had to beg her to take it out and then I burst out crying, unable to speak. It was like my urethra was being torn in half. She tried putting in more lidocaine and left the room and waited for like 20 minutes. After that she asked me if I wanted to continue and I said yes and when the catheter tried going inside again I screamed again. The nurse tried to touch me without permission and I told her don’t and swatted her hand away in fear and she backed away. It was finally done and I felt numb, like I couldn’t even process my own terror. On the bus ride home, I check the mychart appointment notes and it says “patient tolerated procedure” ??? Tolerated procedure my ass. I screamed and screamed in pure agony.

It’s been a whole day and I lowkey feel scared when I remember what happened yesterday. I hate that I’m a girl. I’m terrified. I’m not okay right now. And I don’t know how I’ll be okay.

I’m a 18 year old girl and I have EDS, a history of severe endometriosis (successful surgery) and interstitial cystitis. I was diagnosed with IC after I continued experiencing bladder issues even after they removed endo from my bladder and unglued my bladder from my uterus, cervix, rectum, and colon mesentery. It was a mess in my insides and I’m doing so much better but I was still peeing very frequently.

The urogyn who diagnosed me was very kind, validated my pain, and explained things well. Which is why I feel even more hurt by what happened yesterday. So I was getting my third bladder instillation. To those who don’t know what that is, a bladder instillation is when they put medicine into your urethra after obviously numbing it with lidocaine jelly. I failed to see an improvement in my symptoms after the 1st and 2nd instill, and I wanted to try a third one after deciding maybe this treatment is not for me.

Let me just say that I am not a stranger to invasive medical procedures. Due to my endometriosis, I have had to endure vaginal ultrasounds, internal exams, internal gel MRIs, rectal exams, pelvic floor PT, etc. Ever since I was 17. They were all painful, but I had to endure it because I wanted answers. (And yes, a pelvic exam and the MRI did reveal that my organs were adhered together before surgery.) But this one was different. It was a level of extreme pain I never experienced before during a procedure.

A nurse entered the room and put lidocaine on that area. When the doctor came in tried to put the catheter in my urethra, it was so agonizingly painful. Something was very wrong. My legs were wide open in the stirrups, exposed and I screamed and howled at the top of my lungs and my doctor didn’t stop. I was screaming and screaming. I’m sure everyone in the clinic could hear me scream. I had to beg her to take it out and then I burst out crying, unable to speak. It was like my urethra was being torn in half. She tried putting in more lidocaine and left the room and waited for like 20 minutes. After that she asked me if I wanted to continue and I said yes and when the catheter tried going inside again I screamed again. The nurse tried to touch me without permission and I told her don’t and swatted her hand away in fear and she backed away. It was finally done and I felt numb, like I couldn’t even process my own terror. On the bus ride home, I check the mychart appointment notes and it says “patient tolerated procedure” ??? Tolerated procedure my ass. I screamed and screamed in pure agony.

It’s been a whole day and I lowkey feel scared when I remember what happened yesterday. I hate that I’m a girl. It hurts just thinking about it. I feel like my body doesn’t even belong to me. Why did I have to be born a girl with medical issues? Just why?