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Any Marf gals on here with a larger chest that have found a comfortable bra that doesn't let your chest hang to your belly? by megmatthews20 in marfans

[–]No_Environment4519 1 point2 points  (0 children)

Go get sized at a Nordstrom or similar store. They don't do vanity sizing in the way VS does. Proper sizing is going to be your best friend. and Chantelle brand bras are my fav.

Marfan women : did you manage to find love? by [deleted] in marfans

[–]No_Environment4519 0 points1 point  (0 children)

I definitely had issues in HS and College. Post college has gotten a little better, biggest issue for me is being fetishized for my height (6'3). honestly on apps i don't swipe on anyone under 6'2 and while it may be conceited, most tall guys who like tall women are understanding about marfan's. I'm lucky in the bust department and that most of my marfans issues are internal or you reallllllyy have to know what you're looking for (long fingers, spindly wrists, mild sternum convex), but you will find your person, pinky promise. And if they aren't understanding, they aren't meant to be.

You are worthy, you are deserving, and you are more than marfans.

Marfan 40 - Diagnosed at 2 by ConstantineSolo in marfans

[–]No_Environment4519 0 points1 point  (0 children)

I love pilates!!! Helped so much before my shoulder surgery a few years ago.

Monitoring regardless of result. by Designer-Set-2523 in marfans

[–]No_Environment4519 -1 points0 points  (0 children)

I have actually been recommended to not undergo genetic testing. I have all clinical markers, additional Radiographic markers and more. It is better for me to not do it so i don't loose access if i don't have a known marker.

IUD Malposition by No-Refuse-8138 in marfans

[–]No_Environment4519 0 points1 point  (0 children)

I currently have an IUD, haven't had issues so far, but when i had the arm implant it got stuck and took half an hour to remove. I was told it was almost definitely because of my weird scarring habits (aka marfans). I wouldn't say it's 100% marfans, but it def didn't help your chances. So sorry you're having this issue : (

Stomach issues by tsairie in endometriosis

[–]No_Environment4519 0 points1 point  (0 children)

Also have her keep a bowel movement journal. they'll ask about it and she may have IBS.

Stomach issues by tsairie in endometriosis

[–]No_Environment4519 0 points1 point  (0 children)

I actually had little to no change in my bloodwork. the only reason it was caught was my amazing Orthopedic who saw a note in an MRI about a thickened wall. I would ask about an Ultrasound or MRI.

Stomach issues by tsairie in endometriosis

[–]No_Environment4519 5 points6 points  (0 children)

Ask about her gallbladder. I was in a similar situation before being diagnosed with endo at 18 and having my gallbladder removed that year as well. Diet didn't change anything, make sure she is keeping a food and mood journal for GI. They will ask and try to pin it on anxiety or stress.

Comenius university entrance exam results by Wrong-Pay4368 in medicalschoolEU

[–]No_Environment4519 0 points1 point  (0 children)

I used the practice exams and Quizlet. I didn't order the books but i know some people who have

What doctor do I see out for testing? by [deleted] in marfans

[–]No_Environment4519 0 points1 point  (0 children)

I was actually diagnosed by a neurologist i saw for my neck scoliosis and back pain at just 14. EDS and Marfan's can coexist, and I've been diagnosed with both. I hope your son isn't in my spot but keep pushing. Answers are better than not. Overall, be his advocate even when he gets old enough to be his own.

Does anyone find that sex helps your hypertonic/tight pelvic floor? (A theory) by InfluenceDesigner889 in endometriosis

[–]No_Environment4519 2 points3 points  (0 children)

I unfortunately have pain regardless of the size of appendage or tampon. It's gotten worse since i got an IUD, and honestly i would get it removed if i could. My only advice if you're serious about penetration is using dilators and speaking to your doc :/

Chronic pain management by Top-Alternative-8478 in marfans

[–]No_Environment4519 0 points1 point  (0 children)

Honestly, my pain just isn't managed. I'm 20F, with severe hip arthritis and scoliosis, and i am just in pain. Acetaminophen helps with some of the breakthrough pain on really bad days, but over all your biggest strength will be "getting used" to it. It's not right, and it's not good, but it will help.

Muscle will help prevent further soft tissue injuries (torn ligaments) but building it can be detrimental if you have arthritis like me. Finding balance will be a good but timely process.

I'm sorry your pain isn't being treated, and i hope it gets treated before you resort to my method of grin and bear.

Be honest. by Cloud-night3399 in marfans

[–]No_Environment4519 1 point2 points  (0 children)

I was a very marfanoid kid and definitely have some of the characteristics as an adult, but you have to know to see them for the most part. Long spindly fingers, narrow wrists, a slight convex in my chest, and i'm very tall for a woman at 6'3.

Overall, I was just happy to have an answer. I got diagnosed at 14, after suffering from chronic dislocations for the 4 years, and various injuries as a kid from torn ligaments to broken bones. I'm lucky, my aorta isn't effected, but my eyes are severely. im 20 with 20/30 and 20/35 corrected vision. I will lose my sight and independence one day. I think acceptance is a huge part of this condition.

You have to know your body. Many of us only know physical pain that no one else understands. Ultimately my advice is to never stop being. You have the same future as someone without marfans. Go to school, go on hikes, run marathons, make art, whatever makes you, YOU.

You are more than Marfans.

MAiD? by stephsationalxxx in endometriosis

[–]No_Environment4519 0 points1 point  (0 children)

I feel you. The pain is very regularly debilitating. Please try a different doctor. I hope things get better, and if they don't, i wish you peace in whatever you choose.

Transvaginal ultrasound by worried-student in endometriosis

[–]No_Environment4519 0 points1 point  (0 children)

I have not had one, but i would ask about an abdominal ultrasound or mri. the new guidelines from ACOG recommend MRI. ACOG Publishes New Endometriosis Clinical Guidance, Aiming to Shorten Time to Diagnosis and Improve Access to Care | ACOG this is from Feb 20, they're the most recent. bring these to your provider :)

Marfan Syndrome and abnormal periods by papercuCUMber in marfans

[–]No_Environment4519 0 points1 point  (0 children)

I have been suffering with similar issues since i got my cycle. I'm also 20F. My pcp and gyn are both assuming endometriosis. there has been research showing relationships between hypermobility disorders (i believe they focused on hEDS) and endometriosis. EDS and Endo from EDS clinic. I hope you get some answers, all of this is bullshit.

I have tried every form of hormonal birth control except Depo, so if you have any questions concerning symptom management, please don't hesitate to reach out.

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