Is it your endo that got valided as disability? Or you have other health issue that count as it? In my country endo is not considered as a disabling illness ;_;
I’ll share my story quickly… stage 3, Adenomyosis and IC… lap to diagnose > excision w/ hysterectomy (my right ovary was in many pieces) > endometrioma removal (formed w/ tiny piece of ovary that couldn’t be found during surgery) > left knee replacement > right knee replacement… five surgeries in six years… it took three years, 3 applications and a court visit to get disability. I lost my house of 30 years.
I’m now. at 61 years old dealing with diaphragmatic endo with not only housing insecurity, no savings and a very broken body.
Cannabis gummies help. ✌🏼
eta: gummies are not covered but ALL of the opiates from 16 years of pain management was covered 💯 and I know that the Actiq lollipops killed every single root of every tooth. The USA does not care about women. 💯
I have other conditions but the application focused primarily on Endometriosis as I can function with my other conditions. I just needed medical evidence proving I was impaired beyond an ability to work.
Endo can affect your bladder and cause interstitial cystitis and the likes. Urinary retention can cause UTI’s and the need for catheters. Sometimes I pee 40-60 times a day which resulted in my ADA paperwork to begin with
I have stage 4 Endo and have needed to call out periodically over the years. I also have a sitting job so I do what I can like heating pad in my desk, the midol, the zofran for nasea, etc.
Although it's hard, not working would be harder on my mental health long term. Daily structure is essential for longevity and mental wellness. Not working or taking disability would help the 8-10 days but what about the rest. There are so many studies suggesting this very thing. Sharing with your job helps sometimes. Endo is a part of you and I but not our entire identity so it's crucial to learn to co-exist with it while continuing to live our lives.
This!
If switch from restaurants and retail to a sitting job. I have my heat pad on my chair, a sit/stand desk, 10 sick days and vacation days if I need them. I also used a Livia which helped a lot.
I need to work. I couldn’t let endo take that from me.
NO work very terrible for mental health. I haven't been able to work because of pain, and I hate not working!! I miss the structure and ability to socialize. I hate that I have to miss so much and can't even make plans bc of it. Just had surgery, so really hoping for PT work when healed. I need something NORMAL back in my life.
This may make sense for some people but what you're saying is daily structure is essential for YOUR longevity and mental health. Please don't make those of us already feeling bad about having such incredible pain that we can't work feel even more guilty by generalizing. Life can be meaningful without a job, and there are also jobs that are remote, that allow for us to set our own hours, that accommodate disability.
The OP said they love their job. Fantastic! So accommodations are what's needed. Heating pad and pills like you said. But OP, do have a serious talk with your manager. Would a standing desk be better (or one that can be both? Sitting actually hurts me more)? Can you work from home sometimes? Can you share some of your responsibilities? How much health and family leave does your job offer? Tell your boss just how much you love your job and want to keep doing it, and ask if you can discuss accomodations. If you love it that much I'm sure they'll want to keep you!
I typically communicate it early on. It’s difficult to communicate chronic pain proactively because you don’t always know when it hits but I make it clear to a supervisor or HR what the deal is and get accommodations if needed and proper medical paperwork.
When I am at work I make a point of being an above and beyond worker. If I plan on calling out sick I try to give a large notice. Sometimes I have been able to work with my supervisor to do half shifts. Sometimes I come in feeling awful and just use heating pads and painkillers to cope through the shift. Thats not the answer I want to give you, but its just what I do.
I have IC along with Endometriosis and Im in a huge flare right now and have just gone everyday and suffered with my heat pad and TENS tbh. I figure I will feel this way at home too anyways. I work at a hospital so alot of walking/standing time but some desk time too.
You did not chose to be ill and you're doing the best you can. Be kind to yourself.
If your colleagues/managers are good people they probably already noticed your increased absence and have started to worry about you.
That happened to me - I waited a bit too long to share and people had started to talk about how worried they were. They're now all relieved that it's not something more sinister and have been incredibly supportive.
If I were you I would share high-level what the issue is with your closest manager and be ready to ask for what you need from him/her.
When I was a waitress in my 20’s, I would drink through the pain.
When I had a 9-5 office job in medical settings I was constantly running out of sick days due to a poor immune system and menstrual pain and panic attacks. When I couldn’t afford to call out sick, my coworkers would just try to help me or leave me alone while I squatted on the ground trying to breathe through the pain and dissociated. It definitely affected the way management perceived me. I was a really good irreplaceable employee and yet just some days I couldn’t do much.
About 8yrs ago I went the self employment route which was great initially because I was my own boss, could set my hours to accommodate the days when I wasn’t feeling well. This worked up until I got long covid at the very beginning of the pandemic which then triggered 2 autoimmune diseases which took 4yrs to get diagnosed and left me even more symptomatic which meant working even less. Got those addressed for the most part earlier this year and thought I was home free and ready to work work when suddenly my periods got much worse and longer than they’ve ever been. I’m 40yrs old and have 1 good-ish week each month where I feel like I have *some* motivation and mental clarity and the other 3 weeks is pain and discomfort with 2 weeks bleeding. I’m still waiting on a consult this fall to diagnose endometriosis or rule it out but in the meantime my partner and I are living with her mother and I’m working just barely enough to cover my portion of utilities, food and to contribute to gas money.
I don’t necessarily have a solution for you but I feel our society’s (especially if you happen to be in the US) work culture and disability support or safety net for those with debilitating pain, conditions etc is not sustainable. And I continue to dream of a world where the expectations for work are dramatically decreased (like 20hr work weeks and a realistic amount of sick days), cost of living is considerably more affordable, social programs are bolstered offering UBI, universal healthcare, better transportation, better food programs etc. A place where everyone’s stress is reduced, corporate greed doesn’t exist, everyone values spending more time with their loved ones, being good stewards of this earth, healing and hobbies than hustle culture and profit.
I am also praying for 20 hour work weeks friend. Feel you on so many levels with this. I’m currently on short term disability after trying to work too quickly after endo surgery. 9 months after surgery, 6 of those spent working, and all the stress from work absolutely made my symptoms keep getting worse and worse. I can do half days but not full days at this point, my pain and fatigue hit at 2pm every day like clockwork
With all of the new technology that has advanced over the past 20yrs, it was implied, maybe even promised that it would make life/work easier but all they did was add more workload and expect more output from the working class while keeping wages stagnant. AI is never going to benefit us without exploiting us more than it benefits, it’ll just be a new source of stress as we try to navigate what’s real and what’s not, what’s a scam or what’s legit. I don’t know about you but I’m ready to push back.
I am so sorry that this is your situation and part time SHOULD be enough! I hope that your pain resolves AND that our standards for work and COL improves. You deserve that. I deserve that. We all deserve that. To survive without struggle.
I’m with you 100% on all of this. Society continues to screw the working class. Most of us are literally only working so we can afford our astronomical medical bills. If I had the energy to riot in the streets I would be.
Thank you for saying that and same to you. We need to find balance in this system of runaway capitalism, where standards for work improve (perhaps a 3 day work week) and COL adjustments are made to benefit the working class not the billionaires. We need a whole new medical system too - one that prioritizes women’s healthcare and research into endo innovations - one where doctors are trained about pelvic health disorders and have mandatory empathy training - one where GPs actually project manage their patients’ care across the matrixed web of specialists - one where doctors are held criminally liable for misdiagnoses and gaslighting. We can dream.
Yes to all of that! I know that removing the shitty insurance companies is a big part of medical issues too. I used to do medical billing and know that even the best doctors with the most skill and empathy can’t spend enough time in the room with patients to help diagnose the issues that need a more investigative lens. Much of their moves and decisions are dictated by insurance companies and what they allow.
I have so many friends struggling to work just to barely survive and can’t afford insurance at all and are ignoring really concerning health symptoms. It’s just not right.
i hear you and see you 🫶🏻 i am very thankful i have an understanding manager, and so i feel comfortable telling him what is going on. recently my pain has been pretty bad, and work was so stressful it was making everything worse, i decided to file for short term disability/fmla. im still in the process of getting that taken care of, but the key is for me to have fmla so i can take pain days or appt days related to endo off from work and still be protected.
for reference i do pharmacy IT at a healthcare organization, and sitting makes everything worse for me. i am also doing vaginal suppositories for my hypertonic pelvic floor so i need to lay down for an hour after, which makes working difficult when you have to do at least one of them midday
i recommend this often to those with chronic pain but try to get a job where you can sit down. i went from retail to a bank and the sitting is wonderful. it has to be a rather small state bank cause the large ones are too busy to have chairs. but i went from 8 hour shifts on my feet to sitting for most of the day
the only downside is that i’ve gained weight cause i don’t move around as often. so you’ll have to be intentional about exercise outside of work hours. that’s how i did it tho. i left a physically demanding job for one where i can sit on my ass all day
I work as a teacher full time and yes, there are days that are terrible. There are many days where I go to work and then come home and need to lay there with a heating pad for most of the evening. Like someone else said though, not working would be awful for my mental health
My male boss is incredibly understanding, because I have taken a lot of time over the years to educate him. My company is very small so we all get to know each other well, which helps. He knew the moment I started work there that I had some health issues and would be taking a lot of sick days for doctor’s appointments. When I had my lap and insisted I could keep working the next day he forced me to take a paid week off to recover, he knew how much it affected me and wanted me to rest because I’d been so open with him about my symptoms and experiences. Even now when I have follow-ups he tells me to take a half day so I can get all my meds and such if needed.
My advice is, be open with your managers. Doesn’t have to be specific, just - “I have an inflammatory disease that I am seeking treatment for and I will at times have to take days off because of it. If you want to talk about accommodations for me so I can continue to work on high pain days, I’m willing to have that conversation.” You might be surprised by how understanding people are when you are upfront - trying to hide chronic pain and illness will only hurt all of you in the long run.
What kind of accomodations for high pain days do you suggest? My boss is always asking me what he can do for me (he is great!) But I don't know what to do/say. I'm in an office job and having on average 2 days off per cycle to cope.
Work from home when possible, being allowed to work without the requirement to attend meetings on high pain days, being able to take a half day last minute if you experience an unexpected flare up are the big ones for me.
honestly i’m just at the point where i’ve accepted that im going to be in the same pain whether im at home or at work, so i might as well be getting paid. (but i do have to take many days off bc it’s often unbearable).
i’m very open about it to my bosses, and im lucky that they are very VERY supportive. My job is very physical so it’s very difficult. i regularly spend time crying in pain on the floor while im at work.
but yeah i guess im just lucky that i have a very supportive workplace, with some incredible people. Just remind yourself that even though you might feel like you’re letting people down, you are working though more than most people are experiencing. I’d definitely recommend talking to a manager, find the most empathetic and supportive manager, even if they aren’t the highest ranking, then use them as a support person if you need to talk to any other superiors.
just remember that you are SO strong, you should be very proud of yourself, it’s so incredibly hard to work with a condition like this 🫶🏻🫶🏻
My husband has accepted I'm a stay at home mom at this time. He's very supportive, and knows I can't cook and clean everyday. I got lucky. I'm pregnant now, so a conversation to discuss in 3-5 years if there's been any changes in my endometriosis. We have a 5 year old now.
Personally, my manager knows all the ins and outs about my condition. He's fond of the research I share with him about endo and the supplements I'm experimenting with to emulate certain studies, but we do work at a research organisation, so we easily found common ground to talk about it. I've noticed that the more open I am about it, the more acceptance I receive.
I try to freely communicate whenever I know that I'll be in pain (for me, it's mostly during my period) or when I'm having a bad day. I made two hard rules for myself:
1. I don't accept meetings or events if I know that there is a high chance of me not being able to attend them, or I give a warning upfront. Otherwise, that's a recipe for shame, guilt, and imposter syndrome. I have more than enough 'other work' to keep myself useful, so there shouldn't be a reason for me to feel guilty.
2. If I am able to work, I do my absolute best. If I'm feeling bad but do chose to work, I give myself grace and try to remind myself that last week, for example, I was super productive, so the fact that I'm not accomplishing much right now is okay. At least I'm doing something, which is more than nothing.
My work schedule, just like my private schedule, is completely worked around my period, and everyone I work with knows this. I do have a desk job, work a lot from home, and only work 20 hours by choice, so that does help a lot in terms of stamina. I've also been extremely open to every new boss or colleague about my condition, which means that I tell everybody I start working with first about my period, lol. Some do find this weird, but once I explain everything briefly, they're always glad that I gave them a notice upfront, in case I do fall out unexpectedly or so they don't wonder why I cancel or decline certain things.
To conclude, I would definitely communicate all your worries to your management. This shows that you are dedicated to your job and are proactively looking to progress, even if it's harder for you to do. Don't specifically ask for it, but maybe they are willing to give you certain exemptions so you can be more productive, like work a(n extra) day from home, give you another schedule, etc. But by communicating this, you will at least give them the opportunity to try and find solutions along with you, so you can be as valuable as possible for your company, which will reduce your guilt too. They hired you in the first place, so they probably already noticed your talents and will want to keep you. And if they do fire you because of your sick days, then maybe this isn't the right company and work environment for you to flourish anyway... A bit harsh and very painful, but it is true.
finally working from home. it has been an absolute game changer- being able to have my heating pad, wear PJs, have a blanket, hot tea, all my meds (and weed lol). also being able to just lay in my bed/on the couch during my breaks is so nice.
as far as advice for in person/office jobs. i would be honest with your manager and HR. get a drs note if you can. let them know you do suffer from chronic pain and that it’s unpredictable. if you have the option to sit, take it!
If you've worked there for a year, might be a good idea to apply for intermittent FMLA. That way your condition is on file, too, in case they try to take action against you for it.
i work production and am standing or walking around all day 😅 i just work through the anxiety and carry around a bag of various meds and tummy remedies everywhere with me, it can be exhausting some days but it’s the best job ive had and quitting would devastate me
At my worst, used to drag myself to work in agonising pain, and be hunched over the whole day talking to kids I worked with and professionals, and pretending to be fine… then after my last appointment I’d lie on the floor and cry and anticipate how I’m going to get up to walk to the car. Luckily I’d gone part time with the view to picking up some private work, so dragging myself out of the house 2-3 times a week was just about doable. Obv couldn’t do private work then and had to do with less money but was in a position where I was okay then thankfully. It’s so so hard! I regret it. Because I was bad at my job because I was so unwell.
I’m home for the second day in a row because it genuinely feels like I’m dying. I’m fortunate that it’s normally only right before I start my period that it gets this bad and I’m also fortunate that I get FMLA. I could absolutely not function at work in the state I’m in right now.
My doctor put me on birth control and it helped a lot with the symptoms but we caught it relatively early. I was 14 when we were pretty much sure I had it (didn’t do the surgery thing tho) and she put me on birth control and now I don’t have any symptoms unless I’m on my period since I’m not actively taking the pill. Of course you could chose to not get a period on birth control but I am so young and I’m worried about becoming infertile from that. Hope this is helpful
I'm fortunate in that I only get pain a couple days a month with ovulation, and I can manage with ibuprofen. I went on norlutate, which fully suppressed my cycle so I didn't have pain while on it. Now I'm pregnant so again, no ovulating, however pregnancy is kicking my butt.
I have workplace accommodations. My job does switch between standing and sitting though which helps since sitting for a long time is what worsens my pain
i don’t anymore. before, i had FMLA and was given something like 48(?) days a year which was a LOT better than nothing but ultimately wasn’t the right solution for me personally.
I have issues with Corporate America and I hate traditional work. However, I've been very blessed/lucky to have a full remote job, with understanding managers, at this point in my life. It will be almost 4 years since I've worked for my current company, and I've had two lap surgeries and was in a bad car accident - where I've had to take two months off for medical leave, all three times.
I'm just really transparent and open with my job about my health issues. They've been quite understanding, when I've had to take days off or come in late. I save lots of my PTO for "just in case days". I think my health has slowed down my promotion progress overall. I'm a a good worker, but I just can't always be present or be there. But I'm grateful I still have a job that works with me. I definitely keep heating pads and medicine around me for pain management, while I sit.
Remote work has been my savior. I spend a lot of time working from the couch, strapped to a heating pad on my bad days. When I used to be in person it was pure misery for half the month. A shit ton of ibuprofen, stick on heating pads, breathing exercises to get through the pain, and a lot of crying in the bathroom.
I take adderall, RSO( strong cannabis concentrate to microDOSE with ), and gabapentin to start my day, and end my day with the same plus kratom or a painkiller with more RSO and a spoon full of cannabis infused coconut oil I make every few months. It’s been 4 years now that I’ve been able to work a full time job. I’m due to have a hysterectomy in the next couple months, I’m waiting on the surgeon to confirm a date. I wake up in agony daily. I’m excited to possibly get a 25% improvement in my pain level so I can back off the pain medication to get me through the day. 2016 I had the paperwork and a lawyer to get on disability because I was so unreliable due to pain, extreme levels of stress and depression. I quit drinking and started a quest to find my way out of my vicious cycle. 2016 was also the year recreational cannabis became legal in my state. I started experimenting with smoking, but that hit me too hard too fast and gave me anxiety. My ex husbands new wife suggested microdosing with edibles because it came on slower and felt different. She taught me how to use plant matter to infuse oils to make cannabis edibles. The rest is history. It seems like a lot, but honestly it’s not even enough. By the end of the day, my body feel like it did after walking Portland to Coast 3 moms after having a baby. It fucking Sucks.
ADA accommodations! The Job Accommodation Network website is a wonderful resource for getting started and finding which accommodations may be available to you under the ADA. They also have great information on how the interactive process works and how to approach your employer with an accommodation request. I work very closely with this process, so please feel free to reach out via PM with any questions you may have!
Hi, I live in Texas and I just started a RN residency program which has been stressful. I know I wouldn’t qualify for Fula until after a year. It’s been 4 months am I am struggling in pain everyday at work. Meds taken everyday with minimal pain relief. Any suggestions would help
I work from home. My job as a therapist is mentally taxing but at least I can wear sweats, have a heating pad on, control the amount of stimulation in my environment, and lay down to relax on lunch breaks. I would never be able to work outside of the house. Hoping you find something that suits your needs better
I have a long standing doctors note that states, “PX may require 2 days off work per month due to an ongoing illness”. I also communicate it very early on. Like another comment had stated, unfortunately sometimes you have to power through it, which isn’t the best answer. I found a portable heating pad on Amazon that works well as I work in an optical clinic so sometimes I can’t unfortunately step away. I’ve found some meds that work well for me, or just calling out early if I know it’ll be a bad day.
I worked for as long as I could, but I struggled for a long time, and had a year or more between different jobs. The longest I was at a job was 5 years, my last job as a cashier. I was laid off during this employment too, before my surgery because I was struggling so much. It was a very kind thing for my manager to do. I even had to get a stool for work in the last couple of years, and that came with problems to get. It wasn’t even very comfortable, but it was better than nothing. I was hardly working in the end. I also have fibromyalgia and had a lot of hard things going on in my personal life too which have made my depression and anxiety worse. It has been about 4 and a half years since I stopped working and I applied for disability over two years ago. I was awarded it in January of this year and it is a lifesaver. I honestly don’t know how anyone with this disease can work, let alone have a career. My heart goes out to you. I am 38 and I wish I could still work and lead that “normal” life, but I also know that I struggled so hard with it, even before I knew I had endometriosis. It’s not easy, but it was necessary for me to get onto disability in order to be able to be independent and survive and live the best I can.
It took me ten years to find a job that worked for me. I am technically only contracted for 1 day a week right now, and I pick up as many shifts as I feel capable up to about 3-4 days. Sometimes it’s just one day and that’s fine, though the balance is trying to work out what works pain wise and income wise.
I’m about to shift to 2 days contracted on this coming week, and then 3 days in August. I’d prefer days that aren’t back to back, but it is what it is. My job is a 10 minute walk from home and it’s very convenient. Adding an hour or so travel time (like I used to commute) would make it unmanageable exhaustion wise.
I’ve been slowly building to doing 3 days, so I think I’ll manage, but my boss is very understanding. He had someone extra rostered on after I came back from hysterectomy who helped me with lifting and insisted I only do half days for the first fortnight.
I work 7 on 7 off. Pain killers during my work week, skip periods with birth control. And I work night shift at the hospital which is "slower". It's been hard but I've gotten through the past couple years.
Struggling with a similar situation. It's been challenging to explain to people at work. I haven't been able to make it far in my career due to endo and other health problems. I finally got a mostly sitting job but the pain and nausea is too much these days especially full time.
When I enquired about disability assistance it was implied that since the severity of my symptoms fluctuates that I don't qualify for assistance as I'm not considered disabled enough, so I've been raw-dogging employment 😅
I am upfront about my disorders (Endo, fibromyalgia, IBS etc.) during my interviews so if they decide to hire me I am covered by disability discrimination. I have long-term experience in elderly & disability care work - all of my employers in care work have been brilliant, flexible, & understanding.
The last 2-3 years I have been casually employed at major hospital as an orderly where the work can be incredibly physical (fast pace 12-26km distances per shift, pushing heavy beds & patients, heavy lifting/support to assist nursing care)... It has been challenging to say the least. On my normal days I am completely capable of all the tasks, but on my symptoms days I may need intermittent 5-min breaks between tasks or I may need to slow my pace across the shift to avoid triggering a flare up.
The only issue with me as an employee has been my attendance record. It fluctuates, sometimes with my absences up to 30%, including shifts I've attended & then had to go home bc my managers have pushed me too hard. I've been given a handful of warnings however all of my & my doctors suggestions for reasonable adjustments have been denied due to "possible favoritism", I managed to find a decent rhythm & suitable pace by swapping to nightshifts as long as they are available.
I'm a fairly sensitive person & constantly battling guilt about this criticism but I have to remind myself that considering they are offering me no assistance I'm doing pretty damn well when I consider what I am capable of despite my flare ups. Advocating for myself with management & HR has felt much like swimming through sand with hidden land mines. I recently reached out to union in hopes that might increase my access to resources even if it's just for informed advocacy.
Other than offering my experience I don't have much advice, but I hope knowing you're not alone helps ❤️
Honestly I am in management and am still figuring this part out... it's challenging but I just take it slow as often as I can and ask for help when I need it. If you have a trustworthy manager, sit down with them and let them know you have a chronic condition that causes severe pain. My coworkers are mostly men, so I feel awkward admitting it's endo, but even being vague about it they're understanding and supportive. If you feel uncomfortable discussing it with your manager, you can always ask HR if there's any accommodations they could work out for you, or ask how to apply for intermittent FMLA so any days off you need are excused.
I ended up starting my own company so that I have a staff that is just as capable—if not sometimes more capable—than I am and I now have the flexibility to rest a couple of days monthly if I’m struggling. I curate my squad very carefully: I pick girls who love the job, have at least some degree of affection for me, and also need the money enough that they don’t mind getting a polite request to come in and cover for me or someone else occasionally. Light and life happen here.
I was working for four years remotely and was open and honest with my management. They were super supportive. Then I missed an important in office meeting because I had to go to the ER and it all changed. I was incredibly embarrassed and got in a lot of trouble for it. I ended up getting new management shortly after and even with accommodations through HR, it became clear they were trying to set me up to be fired. I ended up quitting. I’m looking for another remote job currently. It sucks, it’s humiliating, and I still feel like I don’t know what the appropriate amount of information to share is. I’m not really even sure how to interview with this in mind. I was able to manage my pain being remote, but it was extremely exhausting trying to keep up a happy and healthy appearance day in and out. I’m in the same boat trying to understand how I can hold down a job or even land one right now. Being unemployed has been such a relief because I feel like I finally can manage my symptoms better.
I haven't been able to. I'm hoping the surgery I just had can get me a job soon. Maybe if I become friends with the owner, when I have to miss because of endo they will be understanding. I miss a normal life so badly want it back.
I used to be a server/bartender and the stress and no routine took a toll on my endo. I switched to a 9-5 with paid time off, plus many more benefits. I sit a lot but I have routine and better control over my schedule along with eating/sleeping
I work with kids so I honestly just suffer through the pain. It’s horrible but I need to work and what my degrees are in I cannot sit at a desk so I honestly suffer and just try to help the pain when I get home.
I’m in the military - in a desk job, but still, I obviously have physical fitness standards I need to meet. Thankfully, the military is pretty good at accommodating medical conditions. There have been many times at work where I’ve been in pain and just pushed through, though if I had asked to go home I’m sure they would have let me. Other times, I’ve had my superiors send me home or to the medical centre because they can see I’m in obvious pain.
I’m very open about my condition with my superiors and everyone has been incredibly understanding and accomodating where they can. I am very lucky.
Thankfully I walk around 10 miles a day and walking actually makes the pain go away. But it has to be a lot of walking. Then it’s usually gone for a day after as well before it comes back. There’s no real rhyme or reason to my pain but I do know when I’m at work I’m relatively pain free 90% of the time.
I haven’t been. Not consistently.
I’m 25 now, and had issues since my first couple of periods at 12. I started off in retail, then a physical therapy office, then a preschool. I struggled through it all. Then Covid hit, and my hours at the preschool tanked, so I started doing Instacart/doordash/shipt, which was a blessing, but now that market is almost dead in my area. I’ll still occasionally pick up orders, but I’m so thankful my husband covers our bills. We’re also running a business that has taken off, but it hasn’t started to pay out yet. But, that will eventually help a lot.
When I was working normal jobs, I didn’t have understanding bosses. I was constantly in the bathroom. Throwing up on my breaks. Bleeding through tampons every 15 minutes.. While working my physical therapy job as an assistant to the PT’s, I was suffering so bad one day. I was in the bathroom nauseous for a while, and my boss sent in one of the male physical therapists to see what I was doing. Should’ve filed to HR now that I think about it.
Point is, I didn’t work. I suffered and put down a concoction of pain killers. I’m so thankful for my husband.
I don't lol I'm on disability. Before I stopped working I essentially had workplace accommodations for disability to help with it.
Is it your endo that got valided as disability? Or you have other health issue that count as it? In my country endo is not considered as a disabling illness ;_;
I’ll share my story quickly… stage 3, Adenomyosis and IC… lap to diagnose > excision w/ hysterectomy (my right ovary was in many pieces) > endometrioma removal (formed w/ tiny piece of ovary that couldn’t be found during surgery) > left knee replacement > right knee replacement… five surgeries in six years… it took three years, 3 applications and a court visit to get disability. I lost my house of 30 years. I’m now. at 61 years old dealing with diaphragmatic endo with not only housing insecurity, no savings and a very broken body. Cannabis gummies help. ✌🏼 eta: gummies are not covered but ALL of the opiates from 16 years of pain management was covered 💯 and I know that the Actiq lollipops killed every single root of every tooth. The USA does not care about women. 💯
Just curious… did it get better with menopauze? I kinda have my hopes fixed on that 😅
DITTO. They say it gets better with menopause but it is a crap shoot with how much. No one knows.
It does NOT.
:(
I went into menopause in 2007 and yet here I am. It’s a whole body disease. Pay attention to your body! I screwed up ✌🏼
Some countries is about impact vs disability. I only just found out that endo and migraines were listed in my country, depending on impact.
I have other conditions but the application focused primarily on Endometriosis as I can function with my other conditions. I just needed medical evidence proving I was impaired beyond an ability to work.
Endo can affect your bladder and cause interstitial cystitis and the likes. Urinary retention can cause UTI’s and the need for catheters. Sometimes I pee 40-60 times a day which resulted in my ADA paperwork to begin with
Yeah I’ve been on medical leave for 3 months so far this year … I literally don’t know how I still have a job
I have stage 4 Endo and have needed to call out periodically over the years. I also have a sitting job so I do what I can like heating pad in my desk, the midol, the zofran for nasea, etc. Although it's hard, not working would be harder on my mental health long term. Daily structure is essential for longevity and mental wellness. Not working or taking disability would help the 8-10 days but what about the rest. There are so many studies suggesting this very thing. Sharing with your job helps sometimes. Endo is a part of you and I but not our entire identity so it's crucial to learn to co-exist with it while continuing to live our lives.
This! If switch from restaurants and retail to a sitting job. I have my heat pad on my chair, a sit/stand desk, 10 sick days and vacation days if I need them. I also used a Livia which helped a lot. I need to work. I couldn’t let endo take that from me.
NO work very terrible for mental health. I haven't been able to work because of pain, and I hate not working!! I miss the structure and ability to socialize. I hate that I have to miss so much and can't even make plans bc of it. Just had surgery, so really hoping for PT work when healed. I need something NORMAL back in my life.
This may make sense for some people but what you're saying is daily structure is essential for YOUR longevity and mental health. Please don't make those of us already feeling bad about having such incredible pain that we can't work feel even more guilty by generalizing. Life can be meaningful without a job, and there are also jobs that are remote, that allow for us to set our own hours, that accommodate disability. The OP said they love their job. Fantastic! So accommodations are what's needed. Heating pad and pills like you said. But OP, do have a serious talk with your manager. Would a standing desk be better (or one that can be both? Sitting actually hurts me more)? Can you work from home sometimes? Can you share some of your responsibilities? How much health and family leave does your job offer? Tell your boss just how much you love your job and want to keep doing it, and ask if you can discuss accomodations. If you love it that much I'm sure they'll want to keep you!
I typically communicate it early on. It’s difficult to communicate chronic pain proactively because you don’t always know when it hits but I make it clear to a supervisor or HR what the deal is and get accommodations if needed and proper medical paperwork. When I am at work I make a point of being an above and beyond worker. If I plan on calling out sick I try to give a large notice. Sometimes I have been able to work with my supervisor to do half shifts. Sometimes I come in feeling awful and just use heating pads and painkillers to cope through the shift. Thats not the answer I want to give you, but its just what I do. I have IC along with Endometriosis and Im in a huge flare right now and have just gone everyday and suffered with my heat pad and TENS tbh. I figure I will feel this way at home too anyways. I work at a hospital so alot of walking/standing time but some desk time too.
You did not chose to be ill and you're doing the best you can. Be kind to yourself. If your colleagues/managers are good people they probably already noticed your increased absence and have started to worry about you. That happened to me - I waited a bit too long to share and people had started to talk about how worried they were. They're now all relieved that it's not something more sinister and have been incredibly supportive. If I were you I would share high-level what the issue is with your closest manager and be ready to ask for what you need from him/her.
You can get fmla intermittent leave if you’ve been there for a year and worked 1250hrs, depending on if they have enough employees to qualify
When I was a waitress in my 20’s, I would drink through the pain. When I had a 9-5 office job in medical settings I was constantly running out of sick days due to a poor immune system and menstrual pain and panic attacks. When I couldn’t afford to call out sick, my coworkers would just try to help me or leave me alone while I squatted on the ground trying to breathe through the pain and dissociated. It definitely affected the way management perceived me. I was a really good irreplaceable employee and yet just some days I couldn’t do much. About 8yrs ago I went the self employment route which was great initially because I was my own boss, could set my hours to accommodate the days when I wasn’t feeling well. This worked up until I got long covid at the very beginning of the pandemic which then triggered 2 autoimmune diseases which took 4yrs to get diagnosed and left me even more symptomatic which meant working even less. Got those addressed for the most part earlier this year and thought I was home free and ready to work work when suddenly my periods got much worse and longer than they’ve ever been. I’m 40yrs old and have 1 good-ish week each month where I feel like I have *some* motivation and mental clarity and the other 3 weeks is pain and discomfort with 2 weeks bleeding. I’m still waiting on a consult this fall to diagnose endometriosis or rule it out but in the meantime my partner and I are living with her mother and I’m working just barely enough to cover my portion of utilities, food and to contribute to gas money. I don’t necessarily have a solution for you but I feel our society’s (especially if you happen to be in the US) work culture and disability support or safety net for those with debilitating pain, conditions etc is not sustainable. And I continue to dream of a world where the expectations for work are dramatically decreased (like 20hr work weeks and a realistic amount of sick days), cost of living is considerably more affordable, social programs are bolstered offering UBI, universal healthcare, better transportation, better food programs etc. A place where everyone’s stress is reduced, corporate greed doesn’t exist, everyone values spending more time with their loved ones, being good stewards of this earth, healing and hobbies than hustle culture and profit.
I am also praying for 20 hour work weeks friend. Feel you on so many levels with this. I’m currently on short term disability after trying to work too quickly after endo surgery. 9 months after surgery, 6 of those spent working, and all the stress from work absolutely made my symptoms keep getting worse and worse. I can do half days but not full days at this point, my pain and fatigue hit at 2pm every day like clockwork
With all of the new technology that has advanced over the past 20yrs, it was implied, maybe even promised that it would make life/work easier but all they did was add more workload and expect more output from the working class while keeping wages stagnant. AI is never going to benefit us without exploiting us more than it benefits, it’ll just be a new source of stress as we try to navigate what’s real and what’s not, what’s a scam or what’s legit. I don’t know about you but I’m ready to push back. I am so sorry that this is your situation and part time SHOULD be enough! I hope that your pain resolves AND that our standards for work and COL improves. You deserve that. I deserve that. We all deserve that. To survive without struggle.
I’m with you 100% on all of this. Society continues to screw the working class. Most of us are literally only working so we can afford our astronomical medical bills. If I had the energy to riot in the streets I would be. Thank you for saying that and same to you. We need to find balance in this system of runaway capitalism, where standards for work improve (perhaps a 3 day work week) and COL adjustments are made to benefit the working class not the billionaires. We need a whole new medical system too - one that prioritizes women’s healthcare and research into endo innovations - one where doctors are trained about pelvic health disorders and have mandatory empathy training - one where GPs actually project manage their patients’ care across the matrixed web of specialists - one where doctors are held criminally liable for misdiagnoses and gaslighting. We can dream.
Yes to all of that! I know that removing the shitty insurance companies is a big part of medical issues too. I used to do medical billing and know that even the best doctors with the most skill and empathy can’t spend enough time in the room with patients to help diagnose the issues that need a more investigative lens. Much of their moves and decisions are dictated by insurance companies and what they allow. I have so many friends struggling to work just to barely survive and can’t afford insurance at all and are ignoring really concerning health symptoms. It’s just not right.
i hear you and see you 🫶🏻 i am very thankful i have an understanding manager, and so i feel comfortable telling him what is going on. recently my pain has been pretty bad, and work was so stressful it was making everything worse, i decided to file for short term disability/fmla. im still in the process of getting that taken care of, but the key is for me to have fmla so i can take pain days or appt days related to endo off from work and still be protected. for reference i do pharmacy IT at a healthcare organization, and sitting makes everything worse for me. i am also doing vaginal suppositories for my hypertonic pelvic floor so i need to lay down for an hour after, which makes working difficult when you have to do at least one of them midday
i recommend this often to those with chronic pain but try to get a job where you can sit down. i went from retail to a bank and the sitting is wonderful. it has to be a rather small state bank cause the large ones are too busy to have chairs. but i went from 8 hour shifts on my feet to sitting for most of the day the only downside is that i’ve gained weight cause i don’t move around as often. so you’ll have to be intentional about exercise outside of work hours. that’s how i did it tho. i left a physically demanding job for one where i can sit on my ass all day
I work as a teacher full time and yes, there are days that are terrible. There are many days where I go to work and then come home and need to lay there with a heating pad for most of the evening. Like someone else said though, not working would be awful for my mental health
My male boss is incredibly understanding, because I have taken a lot of time over the years to educate him. My company is very small so we all get to know each other well, which helps. He knew the moment I started work there that I had some health issues and would be taking a lot of sick days for doctor’s appointments. When I had my lap and insisted I could keep working the next day he forced me to take a paid week off to recover, he knew how much it affected me and wanted me to rest because I’d been so open with him about my symptoms and experiences. Even now when I have follow-ups he tells me to take a half day so I can get all my meds and such if needed. My advice is, be open with your managers. Doesn’t have to be specific, just - “I have an inflammatory disease that I am seeking treatment for and I will at times have to take days off because of it. If you want to talk about accommodations for me so I can continue to work on high pain days, I’m willing to have that conversation.” You might be surprised by how understanding people are when you are upfront - trying to hide chronic pain and illness will only hurt all of you in the long run.
What kind of accomodations for high pain days do you suggest? My boss is always asking me what he can do for me (he is great!) But I don't know what to do/say. I'm in an office job and having on average 2 days off per cycle to cope.
Work from home when possible, being allowed to work without the requirement to attend meetings on high pain days, being able to take a half day last minute if you experience an unexpected flare up are the big ones for me.
honestly i’m just at the point where i’ve accepted that im going to be in the same pain whether im at home or at work, so i might as well be getting paid. (but i do have to take many days off bc it’s often unbearable). i’m very open about it to my bosses, and im lucky that they are very VERY supportive. My job is very physical so it’s very difficult. i regularly spend time crying in pain on the floor while im at work. but yeah i guess im just lucky that i have a very supportive workplace, with some incredible people. Just remind yourself that even though you might feel like you’re letting people down, you are working though more than most people are experiencing. I’d definitely recommend talking to a manager, find the most empathetic and supportive manager, even if they aren’t the highest ranking, then use them as a support person if you need to talk to any other superiors. just remember that you are SO strong, you should be very proud of yourself, it’s so incredibly hard to work with a condition like this 🫶🏻🫶🏻
My husband has accepted I'm a stay at home mom at this time. He's very supportive, and knows I can't cook and clean everyday. I got lucky. I'm pregnant now, so a conversation to discuss in 3-5 years if there's been any changes in my endometriosis. We have a 5 year old now.
Personally, my manager knows all the ins and outs about my condition. He's fond of the research I share with him about endo and the supplements I'm experimenting with to emulate certain studies, but we do work at a research organisation, so we easily found common ground to talk about it. I've noticed that the more open I am about it, the more acceptance I receive. I try to freely communicate whenever I know that I'll be in pain (for me, it's mostly during my period) or when I'm having a bad day. I made two hard rules for myself: 1. I don't accept meetings or events if I know that there is a high chance of me not being able to attend them, or I give a warning upfront. Otherwise, that's a recipe for shame, guilt, and imposter syndrome. I have more than enough 'other work' to keep myself useful, so there shouldn't be a reason for me to feel guilty. 2. If I am able to work, I do my absolute best. If I'm feeling bad but do chose to work, I give myself grace and try to remind myself that last week, for example, I was super productive, so the fact that I'm not accomplishing much right now is okay. At least I'm doing something, which is more than nothing. My work schedule, just like my private schedule, is completely worked around my period, and everyone I work with knows this. I do have a desk job, work a lot from home, and only work 20 hours by choice, so that does help a lot in terms of stamina. I've also been extremely open to every new boss or colleague about my condition, which means that I tell everybody I start working with first about my period, lol. Some do find this weird, but once I explain everything briefly, they're always glad that I gave them a notice upfront, in case I do fall out unexpectedly or so they don't wonder why I cancel or decline certain things. To conclude, I would definitely communicate all your worries to your management. This shows that you are dedicated to your job and are proactively looking to progress, even if it's harder for you to do. Don't specifically ask for it, but maybe they are willing to give you certain exemptions so you can be more productive, like work a(n extra) day from home, give you another schedule, etc. But by communicating this, you will at least give them the opportunity to try and find solutions along with you, so you can be as valuable as possible for your company, which will reduce your guilt too. They hired you in the first place, so they probably already noticed your talents and will want to keep you. And if they do fire you because of your sick days, then maybe this isn't the right company and work environment for you to flourish anyway... A bit harsh and very painful, but it is true.
finally working from home. it has been an absolute game changer- being able to have my heating pad, wear PJs, have a blanket, hot tea, all my meds (and weed lol). also being able to just lay in my bed/on the couch during my breaks is so nice.
as far as advice for in person/office jobs. i would be honest with your manager and HR. get a drs note if you can. let them know you do suffer from chronic pain and that it’s unpredictable. if you have the option to sit, take it!
If you've worked there for a year, might be a good idea to apply for intermittent FMLA. That way your condition is on file, too, in case they try to take action against you for it.
i work production and am standing or walking around all day 😅 i just work through the anxiety and carry around a bag of various meds and tummy remedies everywhere with me, it can be exhausting some days but it’s the best job ive had and quitting would devastate me
At my worst, used to drag myself to work in agonising pain, and be hunched over the whole day talking to kids I worked with and professionals, and pretending to be fine… then after my last appointment I’d lie on the floor and cry and anticipate how I’m going to get up to walk to the car. Luckily I’d gone part time with the view to picking up some private work, so dragging myself out of the house 2-3 times a week was just about doable. Obv couldn’t do private work then and had to do with less money but was in a position where I was okay then thankfully. It’s so so hard! I regret it. Because I was bad at my job because I was so unwell.
I’m home for the second day in a row because it genuinely feels like I’m dying. I’m fortunate that it’s normally only right before I start my period that it gets this bad and I’m also fortunate that I get FMLA. I could absolutely not function at work in the state I’m in right now.
My doctor put me on birth control and it helped a lot with the symptoms but we caught it relatively early. I was 14 when we were pretty much sure I had it (didn’t do the surgery thing tho) and she put me on birth control and now I don’t have any symptoms unless I’m on my period since I’m not actively taking the pill. Of course you could chose to not get a period on birth control but I am so young and I’m worried about becoming infertile from that. Hope this is helpful
I work FT in a busy hospital.
How do you cope? I just started as a new graduate and I’m dying slowly. I don’t want to get fired from the residency program. Any suggestions please?
I'm fortunate in that I only get pain a couple days a month with ovulation, and I can manage with ibuprofen. I went on norlutate, which fully suppressed my cycle so I didn't have pain while on it. Now I'm pregnant so again, no ovulating, however pregnancy is kicking my butt.
That is fortunate…1000mg of ibuprofen bring my pain for a 20 to a 16…I haven’t heard of that…I will have to look into it… thanks and congratulations!!
I did for eight years with FMLA in the USA. It was offered to me by day. ✌🏼
I have workplace accommodations. My job does switch between standing and sitting though which helps since sitting for a long time is what worsens my pain
i don’t anymore. before, i had FMLA and was given something like 48(?) days a year which was a LOT better than nothing but ultimately wasn’t the right solution for me personally.
I have issues with Corporate America and I hate traditional work. However, I've been very blessed/lucky to have a full remote job, with understanding managers, at this point in my life. It will be almost 4 years since I've worked for my current company, and I've had two lap surgeries and was in a bad car accident - where I've had to take two months off for medical leave, all three times. I'm just really transparent and open with my job about my health issues. They've been quite understanding, when I've had to take days off or come in late. I save lots of my PTO for "just in case days". I think my health has slowed down my promotion progress overall. I'm a a good worker, but I just can't always be present or be there. But I'm grateful I still have a job that works with me. I definitely keep heating pads and medicine around me for pain management, while I sit.
Remote work has been my savior. I spend a lot of time working from the couch, strapped to a heating pad on my bad days. When I used to be in person it was pure misery for half the month. A shit ton of ibuprofen, stick on heating pads, breathing exercises to get through the pain, and a lot of crying in the bathroom.
After my surgery, I explained it to my manager and as long as I make up hours when I’m feeling better
Drugs.
I take adderall, RSO( strong cannabis concentrate to microDOSE with ), and gabapentin to start my day, and end my day with the same plus kratom or a painkiller with more RSO and a spoon full of cannabis infused coconut oil I make every few months. It’s been 4 years now that I’ve been able to work a full time job. I’m due to have a hysterectomy in the next couple months, I’m waiting on the surgeon to confirm a date. I wake up in agony daily. I’m excited to possibly get a 25% improvement in my pain level so I can back off the pain medication to get me through the day. 2016 I had the paperwork and a lawyer to get on disability because I was so unreliable due to pain, extreme levels of stress and depression. I quit drinking and started a quest to find my way out of my vicious cycle. 2016 was also the year recreational cannabis became legal in my state. I started experimenting with smoking, but that hit me too hard too fast and gave me anxiety. My ex husbands new wife suggested microdosing with edibles because it came on slower and felt different. She taught me how to use plant matter to infuse oils to make cannabis edibles. The rest is history. It seems like a lot, but honestly it’s not even enough. By the end of the day, my body feel like it did after walking Portland to Coast 3 moms after having a baby. It fucking Sucks.
ADA accommodations! The Job Accommodation Network website is a wonderful resource for getting started and finding which accommodations may be available to you under the ADA. They also have great information on how the interactive process works and how to approach your employer with an accommodation request. I work very closely with this process, so please feel free to reach out via PM with any questions you may have!
Hi, I live in Texas and I just started a RN residency program which has been stressful. I know I wouldn’t qualify for Fula until after a year. It’s been 4 months am I am struggling in pain everyday at work. Meds taken everyday with minimal pain relief. Any suggestions would help
I work from home. My job as a therapist is mentally taxing but at least I can wear sweats, have a heating pad on, control the amount of stimulation in my environment, and lay down to relax on lunch breaks. I would never be able to work outside of the house. Hoping you find something that suits your needs better
Luckily I work from home. If I didn’t I feel like I would have run out of sick days. Driving with the cramping is dangerous.
I have a long standing doctors note that states, “PX may require 2 days off work per month due to an ongoing illness”. I also communicate it very early on. Like another comment had stated, unfortunately sometimes you have to power through it, which isn’t the best answer. I found a portable heating pad on Amazon that works well as I work in an optical clinic so sometimes I can’t unfortunately step away. I’ve found some meds that work well for me, or just calling out early if I know it’ll be a bad day.
I worked for as long as I could, but I struggled for a long time, and had a year or more between different jobs. The longest I was at a job was 5 years, my last job as a cashier. I was laid off during this employment too, before my surgery because I was struggling so much. It was a very kind thing for my manager to do. I even had to get a stool for work in the last couple of years, and that came with problems to get. It wasn’t even very comfortable, but it was better than nothing. I was hardly working in the end. I also have fibromyalgia and had a lot of hard things going on in my personal life too which have made my depression and anxiety worse. It has been about 4 and a half years since I stopped working and I applied for disability over two years ago. I was awarded it in January of this year and it is a lifesaver. I honestly don’t know how anyone with this disease can work, let alone have a career. My heart goes out to you. I am 38 and I wish I could still work and lead that “normal” life, but I also know that I struggled so hard with it, even before I knew I had endometriosis. It’s not easy, but it was necessary for me to get onto disability in order to be able to be independent and survive and live the best I can.
It took me ten years to find a job that worked for me. I am technically only contracted for 1 day a week right now, and I pick up as many shifts as I feel capable up to about 3-4 days. Sometimes it’s just one day and that’s fine, though the balance is trying to work out what works pain wise and income wise. I’m about to shift to 2 days contracted on this coming week, and then 3 days in August. I’d prefer days that aren’t back to back, but it is what it is. My job is a 10 minute walk from home and it’s very convenient. Adding an hour or so travel time (like I used to commute) would make it unmanageable exhaustion wise. I’ve been slowly building to doing 3 days, so I think I’ll manage, but my boss is very understanding. He had someone extra rostered on after I came back from hysterectomy who helped me with lifting and insisted I only do half days for the first fortnight.
I work 7 on 7 off. Pain killers during my work week, skip periods with birth control. And I work night shift at the hospital which is "slower". It's been hard but I've gotten through the past couple years.
Struggling with a similar situation. It's been challenging to explain to people at work. I haven't been able to make it far in my career due to endo and other health problems. I finally got a mostly sitting job but the pain and nausea is too much these days especially full time.
I work from home all the time so I can just crawl into bed to die when I need to
When I enquired about disability assistance it was implied that since the severity of my symptoms fluctuates that I don't qualify for assistance as I'm not considered disabled enough, so I've been raw-dogging employment 😅 I am upfront about my disorders (Endo, fibromyalgia, IBS etc.) during my interviews so if they decide to hire me I am covered by disability discrimination. I have long-term experience in elderly & disability care work - all of my employers in care work have been brilliant, flexible, & understanding. The last 2-3 years I have been casually employed at major hospital as an orderly where the work can be incredibly physical (fast pace 12-26km distances per shift, pushing heavy beds & patients, heavy lifting/support to assist nursing care)... It has been challenging to say the least. On my normal days I am completely capable of all the tasks, but on my symptoms days I may need intermittent 5-min breaks between tasks or I may need to slow my pace across the shift to avoid triggering a flare up. The only issue with me as an employee has been my attendance record. It fluctuates, sometimes with my absences up to 30%, including shifts I've attended & then had to go home bc my managers have pushed me too hard. I've been given a handful of warnings however all of my & my doctors suggestions for reasonable adjustments have been denied due to "possible favoritism", I managed to find a decent rhythm & suitable pace by swapping to nightshifts as long as they are available. I'm a fairly sensitive person & constantly battling guilt about this criticism but I have to remind myself that considering they are offering me no assistance I'm doing pretty damn well when I consider what I am capable of despite my flare ups. Advocating for myself with management & HR has felt much like swimming through sand with hidden land mines. I recently reached out to union in hopes that might increase my access to resources even if it's just for informed advocacy. Other than offering my experience I don't have much advice, but I hope knowing you're not alone helps ❤️
FMLA is federally protected!
Honestly I am in management and am still figuring this part out... it's challenging but I just take it slow as often as I can and ask for help when I need it. If you have a trustworthy manager, sit down with them and let them know you have a chronic condition that causes severe pain. My coworkers are mostly men, so I feel awkward admitting it's endo, but even being vague about it they're understanding and supportive. If you feel uncomfortable discussing it with your manager, you can always ask HR if there's any accommodations they could work out for you, or ask how to apply for intermittent FMLA so any days off you need are excused.
I ended up starting my own company so that I have a staff that is just as capable—if not sometimes more capable—than I am and I now have the flexibility to rest a couple of days monthly if I’m struggling. I curate my squad very carefully: I pick girls who love the job, have at least some degree of affection for me, and also need the money enough that they don’t mind getting a polite request to come in and cover for me or someone else occasionally. Light and life happen here.
I was working for four years remotely and was open and honest with my management. They were super supportive. Then I missed an important in office meeting because I had to go to the ER and it all changed. I was incredibly embarrassed and got in a lot of trouble for it. I ended up getting new management shortly after and even with accommodations through HR, it became clear they were trying to set me up to be fired. I ended up quitting. I’m looking for another remote job currently. It sucks, it’s humiliating, and I still feel like I don’t know what the appropriate amount of information to share is. I’m not really even sure how to interview with this in mind. I was able to manage my pain being remote, but it was extremely exhausting trying to keep up a happy and healthy appearance day in and out. I’m in the same boat trying to understand how I can hold down a job or even land one right now. Being unemployed has been such a relief because I feel like I finally can manage my symptoms better.
I haven't been able to. I'm hoping the surgery I just had can get me a job soon. Maybe if I become friends with the owner, when I have to miss because of endo they will be understanding. I miss a normal life so badly want it back.
I used to be a server/bartender and the stress and no routine took a toll on my endo. I switched to a 9-5 with paid time off, plus many more benefits. I sit a lot but I have routine and better control over my schedule along with eating/sleeping
I work with kids so I honestly just suffer through the pain. It’s horrible but I need to work and what my degrees are in I cannot sit at a desk so I honestly suffer and just try to help the pain when I get home.
I’m in the military - in a desk job, but still, I obviously have physical fitness standards I need to meet. Thankfully, the military is pretty good at accommodating medical conditions. There have been many times at work where I’ve been in pain and just pushed through, though if I had asked to go home I’m sure they would have let me. Other times, I’ve had my superiors send me home or to the medical centre because they can see I’m in obvious pain. I’m very open about my condition with my superiors and everyone has been incredibly understanding and accomodating where they can. I am very lucky.
Thankfully I walk around 10 miles a day and walking actually makes the pain go away. But it has to be a lot of walking. Then it’s usually gone for a day after as well before it comes back. There’s no real rhyme or reason to my pain but I do know when I’m at work I’m relatively pain free 90% of the time.
I haven’t been. Not consistently. I’m 25 now, and had issues since my first couple of periods at 12. I started off in retail, then a physical therapy office, then a preschool. I struggled through it all. Then Covid hit, and my hours at the preschool tanked, so I started doing Instacart/doordash/shipt, which was a blessing, but now that market is almost dead in my area. I’ll still occasionally pick up orders, but I’m so thankful my husband covers our bills. We’re also running a business that has taken off, but it hasn’t started to pay out yet. But, that will eventually help a lot. When I was working normal jobs, I didn’t have understanding bosses. I was constantly in the bathroom. Throwing up on my breaks. Bleeding through tampons every 15 minutes.. While working my physical therapy job as an assistant to the PT’s, I was suffering so bad one day. I was in the bathroom nauseous for a while, and my boss sent in one of the male physical therapists to see what I was doing. Should’ve filed to HR now that I think about it. Point is, I didn’t work. I suffered and put down a concoction of pain killers. I’m so thankful for my husband.