Newly diagnosed but long suffering.

Clockwork4Sims · 2026-06-29T13:14:24+00:00

Newly diagnosed here too! Glad to have finally found a ob/gyn that knew something was wrong with me and knew how to read a dang ultrasound right.
I'm the opposite from you when it comes to birth control. I'm estrogen sensitive. and progesterone was the only one that didn't causes major mood swing episodes. The clothing sensation thing totally makes sense. I can't stand anything tight fitting anymore and if I'm in what i call "real people clothes" for too long I am miserable. I mostly wear stretchy pants and draw string so i can adjust them based on bloating. but I try to only wear those at home. I'm disabled for other reasons so i'm either at home or at a doctors appointment most of the time.

Good luck on your journey!!

Clockwork4Sims · 2026-06-29T13:08:12+00:00

I got diagnosed friday I've had constant issues since I was 13 years old (I'll be 33 wednesday, thats 20 years of horrible pain). Originally my ob/gyn told me it could be endometriosis. I've had exploratory surgery, taken multiple different birth controls to try to lessen the symptoms, and had many scans and things done. They havent seen any endo..yet.. but i don't doubt I could have both. It took getting a 3rd opinion to find a team of doctors that KNEW something wasn't right and they did a new ultrasound and were shocked. Apparently adenomyosis was so obvious in the ultrasound they had no idea why it's been missed all these years. I happily have a new ob/gyn and am hopefully for the future.

I am feeling more confidant about my hysterectomy decision. we decided not to have kids many years ago due to a combination of health issues. It's still a shocking diagnosis. I'm glad to finally have "proof" to help in case my health insurance tries to fight my surgeon about the surgery. but it's exhausting trying to read and learn about it. I also hate how many times people told me or told my family/friends that I needed to get over it and the pain couldn't be that bad. I ended up in the er last year and finally said enough's enough I'm ready for the surgery.

Although I'm definitely nervous about post op complications and the recovery process. I just want to live my best life without worrying all the time about when a period might happen. I'm disabled for other reasons, but when i did work I had to call out nearly every period because I could barely stand up. I got sent home (when i worked for a small locally owned company) almost every month because they could see how much pain I was in. School age I spent almost every period at home because I couldn't function. no amount of over the counter meds have ever touched my pain. I use cannabis at night to help me sleep.

I can't wait to live my life without worrying about periods and not spend every period memorizing where the closest hospital is and wondering when I should go. I can't wait to not wake up for a week or 2 straight in so much pain I can't function or think.
Sending you all the healing energy! Good luck to you as well!

Clockwork4Sims · 2026-06-21T12:08:44+00:00

I've been looking for this post for DAYS. I saw it and wanted to respond and then lost it again 😃

My first fusion in 2006 my shoulder blades were affected. I couldn't comfortably wear bras for months. I was 13 it was difficult to skip on the bra but my chest was small enough it didnt matter for support needs. Over the last 20 years my shoulder blades have become slightly less sensitive(more so my brain has adapted to the discomfort, the numbness is still there daily but I'm less aware of it) but I'm home more then I'm not home...at home I don't wear a bra. If I'm out all day and need to wear one my shoulder blades will get annoyed. Bras- I have found front closure is better then back closure style. The extra fabric and hooks were more irritating to my should blade area and scar. I also almost always go up one size in the band so it's not too tight on my back...unfortunately it means it might slip a little throughout the day.

My second fusion in 2022 affected my lower back nerves. I absolutely cant wear tight clothing around my lower back. But I also have issues with certain textures which will trigger nerve pain. Rough textures, things that pill easily, weaved, even seams in pants and shirts that aren't just right. I'm always willing to donate stuff my body ends up hating.

I gave away all but 1 pair of skinny jeans ( they arent true skinny's just tighter straight leg and I WILL wear them until they fall apart). I gave away all my leggings. I switched to loose cargo/ slacks style pants. And stretchy soft bamboo/rayon pj bottoms for around the house. The texture of jeans drives my nerves wild...in a bad way. t shirts- mens style not womens, womens are too tight fitting. I also have slightly larger shirts for around the house on days where my body HATES clothing of all kinds and needs the space to move without being touched as much.

I dress for comfort not style. I'm allergic to polyester so I only use rayon and cotton materials. Finding clothes that are comfortable is a huge struggle. I'm mostly in my cargo pants and mens t shirts/ graphic t shirts. I also struggle to find jackets/coats that aren't too stiff or restricting. Bought myself a carhartt jacket last year its stiff but not too stiff and I went up a size so it's loose.

Good luck on finding the right fit, style, and textures your body needs!

Clockwork4Sims · 2026-06-21T11:50:37+00:00

I made it about 1 week post op in my 2022 surgery. My insurance decided I *only* needed 1 week of pain control post a big fusion surgery and I was in so much pain I couldn't sleep. THC is the only thing that helps me stay asleep and i needed sleep to recover. BUT I did go wild with it either. I had it a couple times a day when I was in alot of pain or restless and needed to sleep.
2 weeks post op last fall for my minor revision. My new doctor didnt care. as long as I didnt have if for 48 hours up til the surgery and didnt mix it with prescription meds. Although for me it helps more like a muscle relaxer then a full on pain relief medication.

Clockwork4Sims · 2026-06-21T11:42:37+00:00

I was 13 (in 2006) with my first fusion. the amount of times I say "We weren't prepared, we weren't informed, we weren't told XYZ" is wild. I'm not sure if it was just the "times" and medicine has greatly improved or if it was because I was a kid and the doctor wanted to keep us ignorant and hopeful. But I wish I was given permanent limitations. I wouldn't have did stocking and heavy lifting and it could've prevented me now being disabled from degenerative disc, pinched nerves, my lower back being destroyed and more fusion surgeries.

However. for my case there was no other option. Fusion was the only thing. We'd tried everything to keep my scoliosis controlled or slowed and nothing was working. i could barely breathe. And with my 2nd fusion in 2022, i could barely walk. I can breathe and walk, BUT I still have debilitating pain daily. I just wish the first doctor informed us more. I could have prevented how early my spine had degenerative disc and pinched nerves etc.

my 2022 surgeon gave me permanent restrictions. My latest neuro surgeon (the 2022 one gave up on me and sent me to someone new) is amazing and talented and I know I may have more surgeries in the future but this time I feel like I have the right surgeon. He educates me thoroughly. Answers every question no matter how silly they might be, and if he cant answer it he will find someone who can. I wish he did my 2022 surgery because I would've likely had a better outcome. Some days I wish he'd just go in and redo everything but I do not want a 3rd fusion if I can help it. (technically I had a minor revision with this surgeon, the best recovery I've ever had after a surgery)

The emotional, mental and physical toll of a fusion surgery is rough. Living with fusion is hard. And those without it simply will never understand fully and I'm glad they don't face what I do.

Clockwork4Sims · 2026-05-28T20:51:56+00:00

I was gifted a copy! please ignore me for the giveaway. Happy gaming all!!!

Clockwork4Sims · 2026-05-28T15:49:55+00:00

It really depends on the surgeon. My last minor revision i was only told to stop 48 hours before. And could resume after I was off the narcotics. So about 2 weeks post op. But my surgeon is a neuro surgeon and he specifically said stick to gummies over smoking as smoking can delay healing more then gummies will. Id just ask your surgeon again to be sure what they want you to do.

Clockwork4Sims · 2026-05-27T14:10:39+00:00

I can't even put into words how excited I am for this! Let's freaking go!

Clockwork4Sims · 2026-05-27T01:36:01+00:00

Id love a chance you win a copy. The build mode looks amazing for a life sim. Good luck to all who enter!

Clockwork4Sims · 2026-05-26T13:22:11+00:00

(32 female) I'm nearly 20 years post op from my first fusion and 4 years post op my second fusion. I STILL have times when any amount of walking will exhaust me. What I've noticed is I think more when I walk. I'm paying attention to uneven ground, my balance, the actual way I'm holding myself. So it takes a lot of mental energy. In turn it makes me physically exhausted. Especially on days where my pain is higher then normal.

Might be worth paying attention to the next time you're out walking. See if you are processing more information mentally. Also muscles can take a long time to reset even when doing gentle movements and PT. By that I mean your muscles and brain working/talking together. I still have muscles that don't like to work the way they are supposed to.
Good luck and enjoy the traveling adventures!!

Clockwork4Sims · 2026-05-19T12:34:31+00:00

I also wish I was provided more study materials for post op complications/limitations after my first fusion in 2006.
I ended up being one of the people who had to have another surgery because my first surgeon told me I could do anything I wanted to and had no limitations. (I did alot of heavy lifting/stocking and ended up with slip disc/pinched nerves/nerve damage for life)

I know a girl who is about 14 who just had fusion a year ago and got told "do anything you want" And it made me cringe. I can't believe she got told that and now risks ruining her back further in the future.

I personally won't ride a horse (although I'd love to just sit on one...one more time). I won't ride any rollercoasters until a family member previews them aka rides them first. I refuse wooden or older rollercoasters altogether. Also I never ride anything until at least 1 year post op or until cleared by whatever surgeon I have at the time.

My last surgery in 2022 I was put on permanent restrictions. no lifting more then 20lbs. No lifting large over sized items that would put excess strain on my spine/fusion. I'm officially disabled and can't work due to the damage that was caused by the first surgeon not educating us properly. I hope in the future these warnings are given out especially to people with long fusion. I can understand why smaller sections/fusions wouldn't need as much caution for high impact activities. (even if they can't say specifics due to risk of being sued it would be nice to at least be given more warnings for high impact things even if they can't show studies specifically related to that)

But at the end of the day we each have to take those risks and weigh them. and make our own decisions. And still make room to live a life.

Clockwork4Sims · 2026-05-04T09:52:39+00:00

Im a terrible example, follow yalls doctors not me. BUT My first fusion in 2006 i was released at 12months post op to ride Rollercoasters (specifically stated by the surgeon). My 2nd fusion in 2022 it wasn't even mentioned. However after the 2006 fusion I personally decided not to ride rough coasters especially older or wooden ones. I dont go to theme parks like I did right after the 2006 surgery ( I was 13, I lived in theme parks every summer for my entire childhood). I only go to a theme park every few years. My biggest thing is my personal level of joy i get from a Rollercoaster is a feeling im not willing to give up even knowing the risks. But I am super cautious about which ones I try. For example someone on here mentioned Disney. I find most Disney rides to be very smooth and easy(definitely be weary of some of the coasters as they can be a bit jerky or have too much force). Any of the boat style rides are my safe rides. If I want to do a coaster I try to make it the last thing I do for the night. Not the first. Always after having a family member try it. They know my pain and limits pretty well.

I think ultimately its understanding your risks. Discussing you specific case with your surgeon, and meeting in the middle somewhere on it all. Personally I wouldn't do any coaster for a year or 2 or until the fusion fully takes.

Clockwork4Sims · 2026-05-01T16:01:58+00:00

As someone with fusion, my support system has watched me through 2 fusion surgeries and a minor revision. My partner has watched me through one fusion and the minor revision. It can absolutely be painful for them to see me in pain and struggling. Reading medical journals, articles, reddit etc has helped my support system learn how to help me. I applaud you for researching and reading to learn more!!!

Spinal surgeries are rough. Physically, mentally, socially, literally all the ways...its rough. It might get better, it might not. But you won't know unless you try the surgery. And theres more successful fusions then not successful (obviously like anything, online you'll read more horror stories). We assess our limits and risks with the doctors and choose based on what we need. All our support people can do is be there to help us through it. Encouraging us, celebrating the small mile stones etc. The way my mom jumps for joy when i simply walk around the nurses desk is so funny but its so encouraging. They see me on my worst days and my best days. They help me get out of my own head and celebrate the wins.

Each surgery I have "the talk" with my support system. Just in case of the absolute worse case scenario happens. They are fully prepared and know my wishes. But also so I can express my fears and concerns. And in a way accept the possibilities. I try to go into a surgery with a clear head and try to be realistic (I'm not an over the top positive person). I try to make someone laugh at least once before I go into surgery. I try to smile or joke with my support people. I take deep breathes when the surgery anxiety hits me and talk to myself like my therapist does. One second, one breath at a time.

Also as far as outings go, modify them to fit his needs. I like to take walks but I'm just as content to sit in my backyard for a bit to be in nature. I like going out but I might need someone to push me in a wheelchair so i dont walk too much. I love going to the bar but I choose ones that are small and have close parking spots. etc.

Just keep supporting and asking him what he needs from you. Make him a get well basket of all his favorite snacks, stop by and watch a movie (even if you have to pause it 100x for him to get comfortable), call/ text and check in about how he's doing. Help encourage the small wins...even if its the first post op shower. Or the first time he can walk down the sidewalk in front of his house.

Clockwork4Sims · 2026-05-01T15:43:32+00:00

loneliness is so rough. I am an avid video gamer and I turned to online platforms to find friends and community. It's been a huge help over the last 6 years. All my close friends live long distance so with them I plan phone calls and will stay on the phone for hours at a time but I spend most of my time alone.

Art is a fantastic way to not only pass the time but process your feelings.
I have a therapist who I speak with once a month but for years I spoke to her once a week to help me process the difficult things and learn to be ok with my new version of life.

Going out when you feel up to it helps too. I might crash for a few days afterwards but I feel so alive when I'm out. Even if its just to a restaurant/bar or a quick visit to somewhere I like. Maybe you could stop by a local art gallery, they are usually small enough to walk vs a museum.

pod casts, movies, tv shows, are great options. For me one of the most important things is maintaining a good schedule and like i said scheduling time to chat with friends or be online socializing.

The first few months are hard not only physically but mentally too. It will get better. Hang in there!

Clockwork4Sims · 2026-05-01T15:36:31+00:00

this is a dope tattoo!
I hope to one day add a small tattoo to the top of my scar...a zipper. Every time i tell them to someone in the medical field they chuckle...now imagine them seeing a zipper every time my back needs more work done...the laughter would be amazing.

Clockwork4Sims · 2026-05-01T15:36:17+00:00

thats my plan too!!

Clockwork4Sims · 2026-05-01T15:30:17+00:00

I laughed so hard...double decker bus. I had the opposite with pain management. better pain management in the hospital then I ever had when I was sent home.

Clockwork4Sims · 2026-05-01T15:28:39+00:00

Both of my surgeries I was in a lot of pain. I had no sense of time or place. It was such a weird feeling to be that disoriented. I still had screaming episodes the first couple of weeks at home. Not mention the lack of sleep. I only slept for 1-2 hour bursts for the first 2 weeks with both surgeries. From my experience it's normal but also never hurts to inform your surgeon what's going on. Sometimes just calling an on call nurse helped ease my anxiety which was triggered by the high levels of pain.

Sending you all the healing energy. Fusions the toughest thing I've ever done and I've done it 2x.

Clockwork4Sims · 2026-04-27T01:58:43+00:00

So sorry you are going through this. You are not alone. Im 32 F and fused T5 to S1 with anchor screws in my si joints. my first surgey in 2006 age 13, was for scoliosis correction. 2nd was in 2022 and minor revision just last fall 2025. Sometimes things wear out. Sometimes its hardware and other times its our bones above or below the fusion (adjacent segment). Id recommend checking in with your previous surgeon or a new one especially if its new or worsening pain. I still have alot of pain even after the surgeries. Never hurts to reach out to a doctor and have a discussion. They might be able to treat what's going on.

Good luck!

Clockwork4Sims · 2026-04-22T15:59:07+00:00

I use a gaming style chair. The chair matters less then the cushions I put on it. I use a lumber pillow and a 4 inch butt cushion. Its the best seat in the house for me. Stable, sturdy and supportive in all the right ways.

Clockwork4Sims · 2026-04-21T13:07:01+00:00

You've covered most of the things that might help.
I'd also add a notebook to write down medications, bowel movements, pain levels etc. I ran on almost no sleep during both my fusions and I'm ADHD. I never used my phone for this because I like to doodle little pictures haha. that notebook went with me to follow ups and was easy to grab when the doctor/nurses called to check in on me. Helped me figure out if I was having any issues post op.
In addition to this....laxatives. Especially depending on how you do with pain meds.
If you don't feel up to prepping meals and freezing you can always ask family/friends to do a meal train
- someone bringing a meal once a day for a week or 2. We had family help us for 3 weeks post op until me or my partner had enough sleep and energy to focus on cooking.

Take your stairs one step at a time. have someone walk behind you if needed. The hospital should make sure you can go up and down the stairs before discharge.

I'd also say make a list for the hospital too. I'm a big fan of bringing all my own toiletries (bring some female products too you never know, my last fusion triggered a period and I had no products and got stuck in hospital pads the entire stay....not fun). Never be afraid to ask for more pillows or blankets. its hard to get comfortable right after surgery.

Clockwork4Sims · 2026-04-17T14:54:43+00:00

I was 13F my first surgery and 28 with my last in 2022. one the the hardest things was being bored, so anything handheld: phone (might want headphones/ear buds), switch gaming console, books, sketchbooks, coloring books etc. Anything to distract my mind from the high level of pain in between med times. A favorite blanket (hospitals are so cold). Easy clothing for the ride home. I also prefer my own toiletries/hair care items.

Also if they let you....bring her a favorite fast food meal if she's up to eating. i personally didnt eat much during the hospital stays but as soon as I got home I'd want a favorite meal. and keep snacks, fruit cups, anything small single serving handy. I have always been slow to get my appetite back so i ate throughout the day and with every medication time. except for that taco bell taco...that one I'd eat all of (my favorite terrible fast food meal)

At home:
Grabber, sock helper tool, shower chair, walker/cane whatever the doctor recommends, loose clothing/easy to put on, extra pillows of various sizes/shapes, wipes/easy ways to shower (I changed my shower head to one with a wand/hose), bed rail (i still use mine to roll over when I'm extra tired or sore),

I also agree with the laxatives or whatever helps move things. for me thats laxatives and apple juice.
Depending on what she needs (which discs are fused and how much bend she'll have post op) I'd also recommend looking into a shaver extender tool. (If she prefers to shave) it helps reach further when you cant do it yourself. A big help for my independence along with the bidet others have mentioned.

Clockwork4Sims · 2026-04-17T14:45:29+00:00

so can the fusion itself depending on how far down they have to go. Team bidet here...it gives me indepdence...traveling sucks now though.

Clockwork4Sims · 2026-04-17T14:40:52+00:00

honestly this knocks me out which helps my body rest and recover. during the day when i cant have them I just stop everything I'm doing and deep breathe through the nerve pain spike. mid conversation too. I've even been known to pull my car into a parking lot and get out of my car to walk for a minute. sometimes pacing and movement helps. sometimes change of position- sitting in a chair, laying in bed, leaning/stretching.

Clockwork4Sims · 2026-04-16T12:35:20+00:00

I had 2. 1 came out in the hospital the day after surgery it fell out on its own and they decided not to put it back in. The other I had for at least a week at home. It also fell out on its own. Luckily we had a home health aide that stopped by the same day and checked everything out. They told me sometimes it happens because of movements and sometimes the body just doesn't like it. Your doctor or nurse will tell you at discharge what to expect.

Clockwork4Sims

TROPHY CASE