u/Ok-Aerie-5676

Had robotic lap and have had a largely uneventful recovery. 2 week dpo pelvic exam (really uncomfortable) and finally tried lying on my stomach a bit and been doing a bit more standing, cooking light items, etc and regret it cause my incisions are now tender and my muscles are sore as hell.

Love reading your stories about “healing not being linear” because a month in and I feel more sore than even a 1 post op 😭

Anyone use them? My LTD pushed me to use them and I’m aware there’s a good reason they do this but I went with it for initial and appeal. I did much of the work compiling info, asked a ton of questions that either took forever to answer vaguely or weren’t answered and I had to follow up. The reconsideration was filed a week after denial (although I asked explicitly to hold on) and they never explained what the decision meant because I didn’t understand about vocations and not having enough info to make a decision although found disabled, they said I could adjust yada yada.

For reconsideration appeal I had a ton more records, letters of support and such and I’ve been waiting for an answer 4 months and it went to step 4 on 6/29. I hadn’t heard anything until I got an email from Allsup system asking me to fill out a questionnaire and wording was updated with my reconsideration docs deleted and new “hearing appeal” status at 0%.

So, I’m naturally bummed. I texted them asking the reason for my denial and they asked me if I received a letter from SSA. I told them I hadn’t seen it yet but saw the digital notice because the portal is reset to collect new info. They said let them know when I get a letter then texted:

“We were notified this morning. There is an appeal that was released to your Allsup account.
Thank you for your time, have a great day!”

No explanation beyond that, I had to reach out to them. That’s the energy they’ve given me for 9 months.

In any case I immediately contacted the law firm I reached out to during first appeal because I don’t trust them at ALJ. The lawyer is highly rated and nice but about her business which I like. She was honest about how hard it is to get benefits if I held a desk job and have mainly a cognitive, mental and leg weakness (from multiple sclerosis) claim. She asked me to send my neuropsych reports and said they’d only take it on if I had some records they could look at and if my current reps waived their fee. She read my reports and called me back right after an ALJ hearing for another client. She said she’s sending me a packet and looks forward to working with me.

I don’t know how any of this will work just yet with changing legal teams but I’ll be patient. I’d really like to see what the denial says and records they used - I hate that they release status without more concrete details and don’t move the step. Last unsuccessful filing it went to step 4 and 5 within 24 hours. 😕

I know it’s common but still feels horrible. I’ve had Alls**p (they are usually lurking these boards) and not happy so I’ve reached out to a lawyer but I don’t yet know if I’ll encounter roadblocks since my LTD was the one who suggested them. I know everyone gets a kickback and in bed together 🙄

I will say one question from the lawyer provided me more guidance than 8 months of having them on my case where they don’t answer questions, frame the case, provide clarification, they just tell me to upload docs into their portal.

She asked what type of work I used to do then said “do you have any issues with your hands?” Ironically I just had an EMG test to rule out ortho as a reason for my weakness, tingling and numbness. I type better on phone with one finger than on a computer. dexterity is getting worse too. I had all of this info, records, letters of support from different specialists and she asks how my hands are because if you’ve held a desk job in the last 5 years you need to prove you can even work a damn mouse - the vision convergence insufficiency, incontinence, vertigo, mNeurocog disorder (results and report written with work limitations in mind), foot drop, anxiety, depression, and fatigue from OSA and lassitude weren’t nearly enough lol

Only good thing is by the time I get to ALJ I’ll at least be 50 (not that it matters much, 55 and older is the ticket).

Someone tell you’ve successfully obtained benefits so I can ride high on your energy 😂

I’m in the appeal process for SSDI and I haven’t been doing much in public because I always feel like I’m being watched and judged for doing anything that’s remotely enjoyable.

When I got my 2nd neuropsych test done months ago, I had gone down on some of my scores from last years test. I was diagnosed with Neurocognitive Disorder. In my report recommendations the psychologist noted the importance of adding more joy to my days and cited stats for how it impacts overall wellness. She said being disabled is hard enough without making it harder by being scared to be seen out and about enjoying life. She said “disabled people deserve to engage in joyous activities without judgment”.

I’ve been so scared to do anything fun while in public for fear someone will see me and think I’m lying about my MS that I stopped living. Her guidance changed my entire perspective.

I see a lot of talk of diagnoses but not about listings but I’m curious who actually met a listing and got approved?

I’m at the reconsideration stage using “the company who shall not be named” as my advocate and they don’t answer anything unless it’s basic and has to do with document uploads.

I asked them if I met the criteria and how to frame the info for DDS but they said to just send any records I have and they’ll forward - which wasn’t helpful. I asked all of my specialists to write letters of support and they told me which listings they believed my conditions fit under. So now I’m just curious.

Since learning I have adeno I’ve been so ready to get this thing out. 2 straight years of wearing pads every day. I’ve had 2 D&Cs, 2 biopsies and a trial with the Mirena IUD in the last 9 months. I have never had so many trans vaginal exams in my life as I have this last year. I was so fed up and tired of trying everything that often yielded nothing.

In May I was referred to a robotic surgeon at the gynecology practice I go to and she cleared me for surgery. 2 weeks ago I did it, evicted the ute!

This Reddit has been such a great resource, thank you all for sharing, the comments and shares helped me make my decision easier. Been perimenopausal for about 7 years and I’ll be 50 in September. I was tired of waiting for this thing to finally stop working so I sped the process along.

I am excited to be leaving this chapter and community behind to reclaim my life. Much luck to everyone working to find the best solutions for their adeno.

I’ve been through a lot with this cootie of mine, multiple D&Cs, surgeries, biopsies without anesthetic, etc. I thought after this hysterectomy I’d be done but no. I know she’d do a pelvic exam and I thought I was ready for it but was not LOL

Uncomfortable, took several tries to relax, I could feel her fingers at the cuff seam, and I thought I was healing without much pain until she started poking around. My body said, “Ooooo yeah we are still tender lady!” 😂

Anyway, she told me to start pulling off the glue from my skin incisions, stop bending so much, and come back in 4 weeks. Uneventful and for that I’m glad.

How are you all doing at the 2-4 week mark?

I had robotic assist and been feeling ok with pain, incisions healing nicely and skin glue still hanging on.

I haven’t been out the house to walk because I have MS and a gait which means I trip regularly so I can’t risk a trip or fall outside right now. I do light chores, make my own meals, fold clothes, have bent over to pick up things I’ve dropped, or have to reach. It’s been going as expected but yesterday I hit a figurative wall…

I can now feel every sore muscle, tight ligament and stretched tendon. I feel like I haven’t been doing much but apparently maybe I have?

The gas is still the most uncomfortable part of this healing. My guts never stop gurgling and moving. I want to introduce more fiber at some point but that leads to more gas too.

My follow up appt is coming up Tuesday and I have to drive myself but I haven’t sat in a car yet so I’m concerned how the belt will hit across my stomach and stitches.

What do they do at follow up? Internal exam with speculum?

I’ve literally been wearing a menstrual pad almost daily since Fall 2024 due to the constant bleeding. Now though it’s odd not to see blood or be worried about it seeping through my clothes with unexpected heavy flow moments.

Anyone else still hesitant to go pad free after their hysterectomy? With my weak bladder it also helped with those small accidents and not wearing anything feels so odd.

Ironic, all I wanted was to get rid of this thing for the last 2 years and now I’m holding on like it’s a security blanket 😮‍💨

I’ve had 2 c sections, a hernia repair and a cyst ovary removal years ago. All of those surgeries were open and the recoveries were hard. Husband was there for each but I pushed through without needing too much (that’s not anything to brag about, I realize how dumb it was NOW)

Been perimenopausal and bleeding with little break in between for 2 straight years, had a D&C last June without IUD (was hesitant) and that didn’t calm the bleeding. Had another D&C in February plus and this time tried the IUD. Months went by without improvement.

Went back to doc and they added suspected adenomyosis to my list of issues. Finally got the green light to do hysterectomy and got that done Tuesday. Had a robotic hysterectomy and feel pretty good, moving around, making breakfast, etc. I’m trying not to do too much given I feel ok and my husband is so used to seeing my push through he’s like “you’re ok, you don’t seem that bad, walk more!”

I just had my 1st BM after being constipated a week, my MS fatigue is creeping back up and I can now fully feel the soreness on my insides . I know from past experience how easy it is to forget a major surgery just happened so I’m choose to lie down…which leads to questions about why I don’t walk around. The house is a rancher and only so big, I get up to make drinks, food, have done dishes, made breakfast, etc.

Like dude, leave me tf alone. How much are yall who had lap or robotic surgeries, walking 2-3 days post op??

Been reading your stories the last few months and they’ve been helpful in preparing me so thank you all for sharing! I’ve been bleeding for the last 2 years daily with little breaks. Got two D&Cs, an IUD and finally got what I’ve been asking for from the start. My gynecologist said unfortunately her experience with insurers meant we had to show we tried everything before getting the hysterectomy approved (isn’t that crazy?? Gotta love US healthcare)

Just finished my surgery yesterday. Didn’t know what to expect with this robotic method but I’m so used to abdominal surgeries I didn’t care either way. Turns out I had a lot of dense scar tissue from past surgeries, bowel adhesions and hernias they addressed while in there. It added 30 min to the surgery time. I was diagnosed with adenomyosis during my latest doc visit but they can really only make that diagnosis once they take it all out so I’m curious what they find.

Are most hysterectomies performed with this assistive robot these days? I’m almost 50 and have been sliced open for C sections, hernias, and ovary removals in the past and always had hard post op recoveries because of how long and deep my abdominal cuts were. For this surgery I’m surprised the post op pain isn’t nearly as bad and getting up out of lying positions is a lot easier.

I will say my vaginal discharge is weirder after this surgery. Not much blood but a weird yellow tinged discharge just like when I had my IUD in a few months after my last D&C in February. I’m hopeful the healing goes as planned and really glad I don’t work due to being on disability because there’s zero stressing about going back to a job. One less thing to make my recovery a bit easier.

I try hard to have compassion with undiagnosed people who are scared and anxious over symptoms they believe may be MS because I remember looking for answers everywhere online 15+ yrs ago. The symptoms were so general and varied that I was doing more harm than good by wasting time wondering instead of going to a doc to start the diagnosis process.

For anyone lurking and looking for answers to “Is this MS?”, please do yourself a favor and start the diagnosis process if you haven’t already - get a referral to a neurologist, even if first appt isn’t for 6-9 months, get on the books then ask to be placed on the waiting list. (If you have a primary care provider, ask them for an urgent referral, they can label the referral as urgent if they want to.)

Continue to eat well, hydrate, don’t take on too much stress and make sure you’re taking the right vitamins (get your bloodwork done so you’ll know if you’re deficient). It’s almost Summer so if you’re already concerned about symptoms, be mindful and keep your body cool - because your first significant event could be fueled by overheating. Understand that NO ONE on the internet can diagnose you because MS has a list of symptoms but early on in the disease it can present itself very differently in each case.

Use the energy you’re using to ask questions of strangers and go get seen. You’re increasing anxiety by going to Google, using fresh water for ChatGPT Q&A sessions and infiltrating patient safe spaces by sharing a story that may or may not even lead to MS. Your nervous system doesn’t need the added stress.

I’ve been having eye pain and strain the last year and tested for optic neuritis which I don’t have - but do have Dry Eye which has been causing irritation.

Also noticed my gaze has been drifting to the right and I can’t focus properly when something is close up on me so I’m having issues reading and judging distance when driving. I had to call this out to my neuro because the main thing they look for with vision issues is neuritis, if you don’t have it they don’t concern themselves much with your eyes. I was referred to a neuro ophthalmologist and he confirmed I have Convergence Insufficiency present as well as ocular-motility dysfunctions (related to the eye-brain connection and coordination.)

They referred me out to an optometrist with a neuro specialty to undergo a “binocular vision eval” and therapy - unsure how helpful this may be though and this therapy is all self pay 😩

I have a note out to my doc but I’ve been helping my dad plan my grandmother’s 90th bday celebration for the last year. It’s an event being hosted in a hall with decor, dj, catering, full agenda and everything.

I have to fly there 6/4 thru 6/7 but recently found out I have adenomyosis and need a complete hysterectomy - which I need to do before my insurance converts to COBRA and deductible restarts end of July. In order to have time for surgery and post op care, I only have a small window to do this so I scheduled it for 6/9.

I got my last infusion end of March so I’m in between infusions and my immune system is suppressed. I scheduled the June dates for surgery thinking I could go to Texas then come back and prepare for surgery days later.

I asked my doctor their thoughts but my gut is saying to cancel and wish my grandma well from afar to ensure I’m healthy enough for the surgery.

Tell me I’m not being paranoid thinking travel isn’t the brightest idea before major surgery.

I am on Long Term Disability (LTD) in the U.S. specifically for cognitive issues with some mobility limitations. It was my manager who tried training me for a new role for 6 months who noticed my issues and it was actually a helpful document and catalyst to take a leave of absence and file to better understand what was going on. (So if you’re still working and going through symptoms, see if your manager has noticed and it’s been noted anywhere in your file.)

I was having issues with brain fog, memory, recall, attention, severe fatigue, processing and pace. Knowing this is harder to see and prove my neurologist referred me out for neuropsychological testing and that assessment became my baseline and a valuable document to strengthen my LTD and now SSDI case. Insurance paid for it but I felt while the report was good at identifying and validating my issues, the recommendations lacked teeth and I didn’t feel like I had an opportunity to sit with the psychologist and ask for wording that disability likes to see. So the result was a document that noted limitations and could be shown to employers if I needed ADA accommodations. For SSDI this doc said to them, yes she has limitations but they aren’t severe and she could potentially do other work if the psychologists recommendations were followed.

In that report the psych said to repeat the testing and this time I chose a neuropsych with high reviews and only accepted self pay. This experience has been markedly different! She’s taken more than 20+ hours meeting with me, doing the assessment, reviewing her report, using the SSDI listing language as a guide, updating the report to include stronger language after we met and I sent her updated records from my psychotherapist. Her recommendations (and referrals to other providers) were to help ME thrive vs focusing on how the employer could accommodate me.

If you are dealing with cognitive issues limiting your ability to work a consistent schedule daily, know it’s time to leave the workforce because of it, and want to file for disability, get a neuropsych assessment and if you can, find either an insurance based provider who is supportive of SSDI and willing to take time to report the findings in a way that will strengthen your case OR find a self pay provider who spends more time with you to ensure the report speaks SSDI language. It is pricey, up to $2K or more depending on where you live but worth it if your biggest limitation is based on your cognitive function.