35 weeks pregnant and worried about EDS.
I am 35, have well-controlled lupus (SLE) and am set to have my baby within a month or so. The pregnancy has gone fine so far, other than some gnarly aches and pains.
I was born with ASD and VSD, but never had to have open heart surgery. The holes mostly closed up and I was totally discharged from the cardiologist at 5 years old. I am actually scheduled to see a cardiologist/vein specialist in a couple months as I requested it. Just feel like I need a check up, especially after having baby.
I have seen a Maternal Fetal Medicine Specialist (high risk OB), no concerns found. Also had an echo done on baby by a pediatric cardiologist, also nothing found.
I recently started reading about EDS and can't help but be concerned. From what I can tell, lupus and EDS are somewhat common to be seen together. I am absolutely terrified about the possibility of VEDS and what it could mean for myself and baby. I have read about uterine prolapse, hemorrhaging, etc.
I have various symptoms which seem like they could overlap with a few different type types of EDS. I have some large spider veins on my legs, some started appearing when I was in my early 20's. I have been told I have venous insufficiency by a PCP who was not concerned. I lost 85 pounds a few years back and most of the swelling in my legs actually dissappeared, but it's back now that I'm pregnant (no preeclampsia). I had an echo done several years ago which identified mild mitral valve regurgitation, but the doc was not concerned. I have a lot of joint pain, mainly my heels, ankles, and back. Not much flexibility in my joints from what I can tell. I bruise easily. I have visible veins. I have never broken or sublocated a bone. No family history of EDS.
I'm sure I'm forgetting some things. I realize a lot of my symptoms are vague and can be related to my lupus. I have pretty major health anxiety. But I am just worried.
I have asked my rheumatologist if she would order testing and she refused. Said I would need to get a referral for a geneticist through my PCP. But I know those wait lists are awful. So I am going the cardiologist route first. I am hoping to discuss a lot of this with the cardiologist in August who can hopefully rule out some things.
I don't really know what I'm looking for here. Just kind of getting my thoughts out because it's been weighing heavy on my mind. I considered ordering genetic testing myself via the web to at least rule out some types of EDS (specifically VEDS), but it seems like most of these companies are scammy and I'm afraid results won't be reliable.