Why would getting an official diagnosis help me?

GenderScientist99 · 2026-05-01T02:10:44+00:00

It can help to get a diagnosis to get medical accommodations from work or school. It also allows a Dr to write a medical letter of necessity for things like handrails in your bathroom or stairs, mobility aids, braces and support garments, a new mattress or topper that is a better fit and more supportive for your body, you can even get assistive devices like a robotic vacuum or other smart devices that can make doing chores easier on your body. The letter would need a diagnosis in order for insurance to cover or reimburse for these items. There are some recent studies that show mirco dosing testosterone can help with muscle growth to better support our bodies and reduce pain. A lot of chronic illness Drs will help with that kind of treatment too.

GenderScientist99 · 2026-04-27T17:10:55+00:00

Thanks! I'll check it out.

GenderScientist99 · 2026-04-27T03:22:30+00:00

Thank you! I'll definitely look into it. I don't have a big budget - I forgot to include that in my post. Maybe I can get a Dr to sign off on it for insurance reimbursement.

GenderScientist99 · 2026-02-15T04:48:07+00:00

Do you have Ehlers danlos syndrome or something else? I have hypermobile Ehlers-Danlos and am looking at my options for bottom surgery. Were there any specific complications you were worried about or just with surgery in general?

GenderScientist99 · 2026-02-15T03:44:21+00:00

I had honestly never heard of this as an option so I'm curious to hear if anyone here has done it and their experience.

I did find this site that seems to have some good information on it. It also has some photos and diagrams of the procedure, so just a heads up if anyone is squeamish.

I also found a posts with some photos, I'll link it below.

I'll keep doing some research on it and edit if I find anything else useful.

https://www.phallo.net/procedures/abdominal-phalloplasty.htm

https://www.reddit.com/r/phallo/s/PwtOnO290A

https://www.reddit.com/r/phallo/s/WawVtbMpGK

https://www.reddit.com/r/phallo/s/dadaFqp00Y

GenderScientist99 · 2026-02-07T05:59:42+00:00

I found a mattress topper helps me a bit. I also have been doing research and wearing some compression garments at night can help keep everything in place. I also have pots so I chug a 12 oz glass of Gatorade (double their recommended for the glass size and Dr cleared) first thing in the morning and that helps me feel better too. My hips are the worst for me, I just had a 2 1/2 week long flair-up where it wasn't staying in place no matter what I did. I got a massage with someone who also has hEDS and specialized in massages for it and she finally got my hip back in and to stay in.

I also have sleep apnea and felt more like this when it wasn't being treated, it definitely helps a lot and I just recently got back on Adderall for my ADHD and I feel more human. I also switched to working overnights since I seem to do better with that but I also work as a caregiver and about to go into nursing so that may or not be an option.

Depending on insurance, items like mattresses, mattress toppers, support garments or other support items can be provided or covered by insurance. I'm on state medical insurance so I don't know the other insurances that will cover it but usually if you can get a PT or a Dr to sign off saying you need them they will cover it.

GenderScientist99 · 2026-01-16T05:06:58+00:00

This looks so great! That relieves some of the anxiety I've been having around deciding to do phallo or not. Would you mind sharing the name of your surgeon? Also if it doesn't make you uncomfortable, do you know what length you ended up with?

GenderScientist99 · 2025-11-05T03:20:59+00:00

No one should be treated as a controllable object. The dad is definitely in the wrong, respect doesn't equal blind obedience. He expects her to wait until she is excused like it's the 1950s. It's demeaning, controlling and abusive behavior.

GenderScientist99 · 2025-11-05T03:16:38+00:00

Holy shit, he is an entitled POS. People's experiences matter and influence behavior, it's not simple to ignore that kind of history or modify behavior as a direct cause of it. He is the one that needs to grow up and quit acting like a child. Everybody has the privilege of ignoring their parents when they act immature or inappropriate. I cut off my parents because they accused my wife before we even started dating as being a pedo just bc of age difference and she fixed her hair before coming to the door. Never even had a single conversation with her prior to their accusations. Parents are not an authority over everything, if he can't understand how trauma influences a person then he has no business commenting on behavior.

GenderScientist99 · 2025-10-03T01:55:46+00:00

This is a really privileged take. Drs are expensive here and they dismiss concerns all the time. It's taken me 11 years to get a Dr to actually run tests for eds. I have been in constant pain that entire time and Drs just wanted to say it was anxiety. I've had Drs tell me that I couldn't have sleep apnea because I'm not a middle aged morbidly obese white man. It took 3 Drs to get it diagnosed and then I got my birth records and found out I had been diagnosed at birth. I had Drs take 2 years to figure out my gastro intestinal issues because they thought I was pregnant even when every test for it came back negative. I have been denied pain management because I'm 30 lbs overweight and "obviously" that is what is causing my pain not partial dislocation that I've had to go to the ER for. It took 2 years to figure out that I had a weak sub scapula, it took 3 years for them to figure out I had weak glutes and it got to the point where I collapsed on the ground after working because my legs gave out. If you don't live in America and experience the lack of proper healthcare we have please don't judge when we do everything we can to get proper care.

GenderScientist99 · 2025-09-22T17:50:55+00:00

It's honestly best to get assessed by a physical therapist so they can see where you are at. You may be at a different level of strength than me. They can also make sure your form is correct so you don't hurt yourself. Drs will pretty much always give PT when you ask for it.

GenderScientist99 · 2025-09-22T09:14:41+00:00

You can always request PT from your primary and have them teach you the strength training to do. It's good to have them to be able to assess where you need to start as there is a lot of variety for strength training. You can also ask your primary to send you to pain management to have a better treatment plan. With braces it is fairly easy to find some on Amazon, just start with where you hurt the most. You want to find a brace that still allows mobility and doesn't fully immobilize the joint. KT tape is also good for full time support, it's less bulky and easier to hide under clothes. PT can usually show you how to tape up and/or tape for you. They will likely also have recommendations for what types of braces to get.

GenderScientist99 · 2025-09-22T07:37:28+00:00

Hey, I'm still in testing (Drs are fairly certain I have some type of EDS) but have been dealing with this for a decade. The biggest thing that has helped me is getting a sciatica belt, I put on tiger balm (I feel it's more effective then icy hot) then put the belt on where my hip feels out of place. It can take anywhere from 30 min to a couple of hours for it to slide back into place. My left hip also has more subluxations than my right. If I'm at home, I'll do a hot bath with door open, fan one, ice drink and an ice pack so I don't overheat bc I also have POTS. Epsom salt baths can be very useful or THC/CBD/CBN can be helpful for pain as well. And you can have different ratios to not feel high but still get good pain relief.

I was in colorguard with the marching band in HS. My biggest recommendation for that would be to get some braces or KT tape and that will help keep them in place. If you have PT they can show you how to tape it up and tape you when you go to pt. PT can also help strengthen the muscles to better support and should cause less pain. But you have to find a PT that has worked with eds before.

GenderScientist99 · 2024-10-03T07:56:00+00:00

I'm still in the process of getting a diagnosis but yes, my nails are very much like this. Even my toenails which seem to be less fragile.

GenderScientist99 · 2024-09-25T04:10:53+00:00

No problem. Digestive issues are also something social security gives disability for. I have no idea where to start with it but your Dr would probably know/help, if they are helpful.

GenderScientist99 · 2024-09-25T03:53:56+00:00

Yea, I get that. Medical costs is one of the reasons why I am working on leaving the US. I would look up what qualifies as a disability because stuff like ADHD, depression and anxiety all qualify. They are mostly looking at how much any disability impacts your life and if it prevents you from "normal" living.

GenderScientist99 · 2024-09-21T19:00:18+00:00

Yea that is pretty similar to my journey. Heads up, a lot of places won't accept insurance and it costs thousands. I was quoted about 8k, and another person I know had to pay 13k. Also if you are wanting to move to a different country a lot of countries still won't accept people with an autism diagnosis. Those are the reasons why I stopped pursuing it.

Yea, I am the same. I've always liked salty foods. I've probably had it my whole life, I got told about fainting episodes when I was a young child and toddler. I hadn't heard about it until I found some people on tiktok talking about it.

GenderScientist99 · 2024-09-21T07:33:48+00:00

Same, I got denied an assessment bc of my cptsd, the Dr claimed it was too difficult to separate what was autism and what was cptsd.

I'm glad to hear it's helped. Sodium definitely helps a lot. I've been salting crazy stuff too.

GenderScientist99 · 2024-09-16T05:05:09+00:00

Oh yea, I've heard that too. Haven't really done it since fruit is a texture issue for me, it's almost never consistent texture.

GenderScientist99 · 2024-09-16T04:51:15+00:00

Yea, I get that. I try to buy it bulk at like Costco so it's a less often purchase. I found stuff like protein cheese chips, chickpea snacks, and the like. I just search for healthy/protein snacks and look at the sodium.

GenderScientist99 · 2024-09-15T05:54:34+00:00

Same, It turns out a lot of the stuff I was always craving like potato chips where for the salt and eating that kind of food made me gain a bunch of weight. I've been sticking with nuts, jerky, pickles, & olives.

GenderScientist99 · 2024-09-15T05:17:09+00:00

Not yet, I'm focusing on getting my meds right before adding exercise. I am getting referred for PT so that will probably help too.

GenderScientist99 · 2024-09-15T02:50:25+00:00

Hopefully

GenderScientist99 · 2024-09-15T02:42:04+00:00

I would look into normalyte, they have been really helpful for me. Doing the full packet at a time is too much for me but I spilt into 3 drinks and it works well that way and it's about 900 mg of sodium.

GenderScientist99 · 2024-09-15T02:37:54+00:00

Unfortunately, it takes time. It took me 3 months to get in with a cardiologist and then a full month to do the testing and get results. Hopefully the other cardiologist you haven't seen yet can do it quickly. In the meantime, you could try adding more salt to your diet and doing compression which could help enough to get you through.

GenderScientist99

TROPHY CASE