Hi everyone,
I really need to vent and be heard without anyone calling me dramatic or giving me "solutions" that would maybe help a healthy person, but are inapplicable to my situation.
My endo has made my life unliveable the past two years to the point where I've had to drop out of college, I can't work, and I really struggle with basic tasks like self-care and cleaning. Atm I am cycling through being completely bedbound and barely being able to potter around my house. It's gotten to a point where my pain is debilitating and constant, and I literally feel so horrible I can't get out of bed, let alone do things, and I'm neglecting myself to the point where I haven't been able to wash my hair in a month, and it's matted at the back of my head. My pain is so constant and so excruciating that it leaves me curled up and PRAYING to god to end my suffering, and my fatigue is so bad that I end up sleeping from anywhere from 17 to 22 hours, and in that time, I'm dead to the world, regardless of how many full-volume, full-vibration alarms I set.
At the moment, my meds are doing fuck-all for my pain and symptom management, there are eighty-four people ahead of me for the specialist private pain management short-term cancellation list, and I'm looking at a regular waiting list of 2 months long, and every minute of every hour is a struggle for me; I literally can't live like this any longer. I've spent the year getting poked and prodded at in the hospital, and I've had two surgeries and two procedures this year, and I feel like I'm constantly in and out of the hospital. I only leave my house to go to my specialist doctor's appointments and to my GP. I've been waiting for specialist pain management since September, and I've had major excision surgery since then, and I'm STILL in debilitating pain. My Endo specialist told me that a lot of the damage that was done to my insides is permanent, and they'd risk doing more damage to me if they did anything else. The constant debilitating pain has literally fried my nervous system, and I can't even stand or bathe without having terrible heart palpitations, and my mental health has never been worse. I am not myself anymore.
I really struggle with self-care and hygiene, and I will go weeks without washing my hair, and my parents (who I live with) won't let me shave it off. My hair is so dirty and matted right now that cutting it off would be a mercy. I feel disgusting and humiliated constantly as I'm stuck living in a body that's in constant debilitating excruciating pain, and that's unable to take care of itself, and I just don't feel like me. The real me likes painting, and going out with her friends, and I love having long hair, wearing cute clothes and doing fun makeup, but my body is so broken down that I literally don't have the spoons for any of that. I'm lucky if I eat once a day because I have coeliac disease and other dietary restrictions, and making food costs so many spoons because gluten and dairy are in many pre-packaged foods :(( I'm literally running on survival mode and trying to do the bare minimum to keep my body running and to not get any sicker. I love my friends, but I've seen them about 4 times this year (including when my bff visited me in the hospital), and we all live in the same city because I'm in too much pain to even handle or god forbid, enjoy going out.
I'm literally tweaking out constantly. Endo has made me into a terrible, dirty, bitter person, and I literally can't handle the impact it's had on my life. I can't even blame my old friends for dropping me bcs I can't leave my house or be an active friend anymore. I'm stuck in a bad living situation bcs I can't care for or support myself, and this is just making my terrible mental health even worse. I can't imagine living another year in this same situation. I'm 21, and it feels like endo has stripped me of my ambition and my personality. I don't have big dreams anymore. All I want is to be able to work to support myself, to be able to live without pain and to maybe be able to treat myself once in a while and be able to buy myself nice things.
I really need help with my life, but I don't know what to do or who to go to. I've applied for disability benefit to get a handle on my poor financial situation, but they denied me, and I'm waiting on the results of my appeal. My application was fully filled in and had all of my medical history and years of proof and specialist doctors' notes, so ik it wasn't an error on my part.
If anyone has been through anything similar and has any advice besides telling me to push through it (I obvs can't), lmk. My fatigue and my pain are my worst symtoms but I'm also living with severe chronic nausea, headaches and frequent utis (I have a terrible immune system). My pain is in several different organs and locations in my body, which experience different types of pain at once; it's not just regular "period cramps," it's awful. My pain is primarily in my pelvis, torso, and down my back and legs. I have everything from pelvic floor dysfunction to bladder irritation pain, to cervical cramps, bad neuropathy, lightning butt and cervical pain zaps to tugging, burning, stabbing and dull types of pain.
If anyone has any good symptom management medicines lmk especially for the fatigue and pain, because I cannot illustrate to you how much I'm suffering and how much I need help to get myself out of my current situation.
Thank you for taking the time to read this, ik it's unpleasant to read about, but I don't have any chronically ill people in my life who seem to be suffering this severely, and I really need your guidance.
From being in a similr situation for many years- i know you will have heard all the general advice so id like to offer some different ideas that i got.
-nerve blocks -pelvic wand (use weekly, especially for back of leg pain) -diazapam suppositories -exploring outside reasons for worse pain (i explored hypermobility, eds, mcas, fibromyalgia, etc) -exploring other specialists (e.g. neurosurgeon).. i had a neurosurgeon offer to give me an explorative surgery to check particular nerves in my abdomen and potentially cut (divide) the nerve.
Thank you so much for your reply!! You're so helpful, I'll look into those things asap!! I think some sort of nerve block would be effective for me bcs my endo has given me rlly bad neuropathy with my sciatic nerve, and it's awful to live with, and suppositories rlly do make sense as my pain is mostly located in my pelvis.
No worries :) i know how devastating it feels when its at that point. Also this is one of those stupid comments but honestly completing stopped exercise whilst sorting those other options did decrease the pain a bit too. Goodluck x
I agree with getting checked out for co morbidities. I have Endo and it’s painful but the hEDS is what makes it unbearable at times and they feed off eachother😔
What did exploring hypermobility look like for you? I’m fairly certain I have some kind of connective tissue dysfunction going on (in addition to endo, POTS, and interstitial cystitis) though probably not full on EDS as I don’t meet the beighton scale criteria. Were you able to get a diagnosis? If so, how? I managed to get a POTS diagnosis by having my GP perform a simple test that led to a referral to a dysautonomia center for more rigorous testing, but the hypermobility prospect is vexing me. I just can’t figure out what the pathway to dx looks like when so many practitioners seem to not even know what it is.
Well i thought i had hEDS, i had been to physio for years who said i was very hypermobile. I was reffered to rheumatologist for chronic pain and ruling out fibromyalgia and hypermobile conditions. By the time i saw him my body was actually alot stiffer and my joints had pain and stiffness.
My rheumatologist believed hEDS wasnt the cause of my issues though (he did think MCAS and POTS were part of it). I ended up being diagnosed with a metabolic bone disorder, an autoimmune disease, pots and potentially mcas.
Interesting, thank you!
Best of luck!
Couldn't have said it better!
I'm so sorry your quality of life is currently so poor. I think nerve blocks might be great for you and I really hope it's something you can get access to.
Also I believe that you should shave your head from a pain stand point it makes the most sense especially if it's matted.
You've got so much sensory input happening I think shaving it really is the best solution especially if your parents can't or won't take care of it for you. If it's gone it gives you one less painful and uncomfortable demand to deal with.
I feel for you, im in the same situation and i haven’t been able to upkeep my house and my hygiene the way i use to for 6 to 8 months now and im embarrassed. My family keeps telling me i just need to exercise and eat healthy… they’ve always been dismissive of health issues and how this may affect a person and it’s very unhelpful and quite upsetting. If i could i would. I saw my gyno who listened and took me seriously and we are building a plan so that gave me hope. I hope you can find a way to manage this horrible disease
I hope things get better for you soon as well<33 honestly, not being able to maintain my hygiene is one of the most humiliating and degrading things I've ever experienced. Also, your family sucks--- my family is lowkey the same. They're very "bootstrap mentality", and they just don't understand the nature of chronic illness at all. Mine act like just getting into the shower will cure me of all of my illnesses and completely fix my mental health when even getting up the stairs into the shower is difficult for me, and showering makes my dizziness, nausea and heart palpitations 10x worse, which is why my hygiene is suffering in the first place. I totally understand how you feel. I've always been hesitant to ask other people for help, and now I feel like I have to beg people for it.
I do see a specialist team of gynaecologists for my endo, and they have been really helpful and acomodating but I still feel like I'm drowning. We have the beginnings of a plan, but we still haven't gotten me any relief or pain management yet. I had excision with my specialist in October, but they couldn't do much as my endo has already done permanent damage to my body. They have referred me to several pain clinics (both public and private), but the lists are so long, the clinics here are so overcrowded, and there were problems with several of the referrals even reaching the clinics. Our appointments are so far apart too. My next appointment is in March, and I really don't think I can handle being in this amount of pain for that long. I hope life gets better for both of us.
It really is humiliating!! Omg thanx for your kind words we’ll get trough it!
What kind of permanent damage did the doctors find in your body?
I’m so sorry you are feeling like this- no one deserves such pain. Please know, you’re not alone in this- and as much as this condition sucks, this community will be here for you.
thank you so much. it's so isolating dealing with this illness, and i'm the only person with endo i know :')
Pain can be so isolating. Sending you love and solidarity.
Your pain and exhaustion and frustration are so valid, and I'm unspeakably sorry you're having to deal with all that every day 💜
thank you so much<33
Reading this we have so many similarities! I've been diagnosed since 2018. I was a newly qualified art teacher (my dream job which took 8 years of qualifications after school to get there). My health declined so much. The pain and fatigue were so bad I went down to part time and eventually quit in 2019. I've gotten progressively worse since. I did have two children which makes things extra tough. I never thought I would fall pregnant with the Endo but here we are. I've since been diagnosed with M.E., Fibromyalgia and Hypothyroidism. I use a walking stick around the house and I use a power chair when I go out of the house. I'm also in the process of applying for PIP. I have a phone call with them in a couple of days. Would you mind sharing why you were declined the benefits? My medications also don't help with my pain and fatigue. I'm always using a heat pad and tens machine on my hip. I recently had an MRI and am awaiting the results. I'm praying I need surgery! My husband struggles so much looking after us all and we are struggling financially. Mentally I struggle and if it wasn't for my kids, I don't think I'd be here. I hope you get some more advice for coping.
Omg, a fellow artist with endo!! Congrats on the kids btw!! I dropped out of art college this year, but I had been deferring since 2024. I really couldn't handle the "always on the move, always doing something" aspect of art college, (due to my chronic pain, chronic fatigue and lack of spoons), and I found it really inaccessible trying to manage the large amounts of walking around the city, random pointless projects, and trying to manage the overwhelming, rapidly growing pile of assignments and lectures I ended up missing bcs of my illness. Also, the lack of ventilation (paint fumes, spirits, chronic nausea and headaches don't mix lol) and trying to manage my shitty immune system while in one of the most germy places ever (college), the fomo I was getting from being too sick to socialise was also really difficult for me, and I found it really hard to ask others for help as I was too overwhelmed and anxious from trying to manage my illness to properly talk to people. How did you get through it?? Genuinely, I really do want to finish my education and go back!!
The reason my benefits were originally declined was that I "didn't meet the medical criteria" (I LITERALLY DO) and that I "wasn't substantially restricted from work someone with my age and qualifications would undertake" (I LITERALLY AM)....... If I COULD get a job (I CAN'T) and KEEP that job (I CAN'T) (I'm in too much pain to do basic self-care and household tasks, let alone work the type of job available to someone with my lack of education and qualifications.) Mind you, the type of job that I would be offered based on my lack of qualifications (i.e. stacking shelves, warehouse work) would be completely inaccessible to me as I'm lit disabled, I can't lift things, bend down, or stand for too long ect., and I literally cannot stand travelling or being in the car, due to my violent chronic nausea from my endo, I can't drive or opperate any machinery due to the meds I'm on, and as my flares are unpredictable which means that I wouldn't be a good or reliable worker so I'd be unable to keep said job anyway (?) so idrk what they're on about tbh. :')
Even my doctors think it's bullshit.....I really don't think they would've provided so many notes and filled out the form if they thought they were having to lie about my condition. Everyone I've had (including a few of my doctors) look at my application, and look at the letter they sent back, thinks I'm being discriminated against bcs of my young age (21) or my main condition (endometriosis) due to all of the misinformation spread online abt it. I'm really hoping my appeal works out for me, bcs I'm skint and dependent on my parents, who hold it against me, and the lack of stability in my life is making my mental health issues sm worse. I really do get how you feel like a financial burden to your family, as I'm in the same boat. It's really difficult to deal with. I really thought that at this age, I'd be the type of person who helps people, but now I'm the type of person who needs to be helped. It's really hard for me to reconcile the future I wanted for myself with my current reality.
I hope your phonecall goes well!!
I don’t have much to offer because removing one of my ovaries temporarily eased the pain. However, just know you are never alone in this! Please reach out to all of us fellow endo-sufferers if you just need to talk through things. You are worthy of answers, as well as rescue from pain 💜
thank you so much!!
Check your iron/ferritin and see if that is low if you have heavy bleeding. Also what had helped me was progestin only birth control but I couldn’t continue bc it was causing insomnia and hair loss as a side effect. I might be trying other bc soon. I’m not sure if you have tried BC… sry if I missed it in your post. I’m still dealing with mine atm.
I've checked everything, but I'm definitely due another blood test soon to monitor my deficiencies because I have coeliac disease, and that would make me more prone to that kind of thing. Also, so true, I love birth control!! And I've tried almost every kind, but none of them decreases my pain. I've had three iuds and they decrease my bleeding sm which is great, but my pain is still unbearable :(
Also idk if you live in the US but if so disability will usually deny you 3 times. If you appeal their decision with an attorney that may help get things rolling. However, if you only appeal yourself you’ll probably be applying 2 more times unfortunately.
I wonder if Gabapentin might be useful in your case for the pain, particularly the nerve stuff. I took it for six months and it helped to breaks one of the cycles of the nerve pain.
I’ve been through this at the height of my Crohn’s Disease and also, with endo.
I’m so sorry you’re going through it. I know exactly what you mean by just praying for your suffering to end.
As a temporary (or long term) pain solution, I have to ask: have you tried weed? I started using it in college to help with my Crohn’s pain and inability to eat. Then again for endo. It literally saved my life. Moreover, there are studies that show it reduces inflammation, promotes stem cell activity, and potentially speeds up tissue repair. As someone who is now in remission for Their Crohn’s and used it as one of their primary methods of pain relief + healing, I can anecdotally claim that, for me at least, it worked. I’ve known many others with chronic pain who it helped, too. If it’s legal in your state, get some that is high in CBD. If it isn’t, I suggest either getting what you can from a very trusted source or driving to state where it is legal if possible.
For anyone who is going to tell me these things are illegal, risky, whatever… Don’t underestimate what chronic pain does to your body in mind.
As far as long term solutions, I know you didn’t ask for them, but I would feel irresponsible not mentioning this. I don’t know where you’re located, but there are a couple of Endo specialists that I would suggest over others. People travel to these surgeons all the time because of how incredible they are. Additionally, they work with other types of surgeons so that if you have complications (with nerves, for example), they’re able to figure it out together. If you want the names of the surgeons, I’m more than happy to give them to you if you message me. There is still a wait, but they deal with the most complicated cases, and the wait is worth it.
I really wish I could tolerate weed :( that sounds incredible for you. Very jealous.
hey💙 i just wanted to say that i understand and that you're never alone in this. We all go through so much and so much neglect.. when i read that they denied you the help i got MAD as fuck. This system is broken. I wish i could make things better but i don't know how ;( Just know that i would be happy to help you shower and braid your hair, u deserve to feel clean always. And also if shaving will make things easier, go for it girl, i bet u'll look amazing with that buzzcut. Sending you hugs and i hope that the pain can stop soon :( keep fighting queen 🫂
I too have endometriosis and PCOS. I know some of your pain and mental anguish. At the end of your post you mentioned bladder irritation and pelvic floor dysfunction. Have you ever heard of interstitial cystitis? I was diagnosed with IC about 10 years ago and it can be brutal. The burning cramping and pain that radiates to your butt. You’re basically walking upright and fine and then pain will come and the next minute you’re hunched over and having to lay on your belly bc to even think about sitting regularly hurts so much. For some reason when the pain comes it makes me extremely bloated. So it makes passing gas intensely painful. But also necessary. Anyways that is from IC. If you have IC which it sounds like maybe you do. The lining of our bladders becomes inflamed and terribly irritated. The way I was diagnosed is my gyno done exploratory surgery for endo and then also explored my bladder and found it to be very much affected by inflammation and some spots had ulcered. I have to get medicine treatments that go in through a very small catheter into my bladder where the medicine is distributed. I then have to hold this medicine inside of me for a couple of hours. I can leave the doctor’s office after the instillation. Just not pee until two hours is up. The medicine has helped some although I still have pain. However the pain is nothing like it was before. I was getting instillations once a week. That unfortunately is not feasible when your doctor’s office is almost a hour away. So now it’s monthly. I’m guessing from getting this medicine for so long it doesn’t matter that I’ve gone down to once a month. Bc it does help a lot! But weekly instillation at first was definitely a necessity. I hope this information helps. And I’m praying for you and will continue to pray for you. The kind of pain that you’re experiencing is not for the weak. I experienced only some of that and when I did I too thought this is not life. But just know that it does get better. And you might not care but I think you’re a STRONG ASS CHIC! It takes a lot from you dealing with this crap. Do you see a therapist or psychiatrist? Also are you type ll diabetic? Good luck chic I hope you get some type of relief from this taxing debilitating disease soon and get back to living.
When my pain was absolutely unbearable I would keep baby wipes by my bed for the important parts (the pits and bits haha) so that I felt somewhat clean. I tried cannabis and it made it so I could at least walk during those times. Regardless, try not to be so hard on yourself. This is a debilitating disease. It eats away at your insides. You are completely valid in how you feel, and you are not alone here. Sending love ❤️
I’m so sorry. I know how isolating this can be. Please know that you are not alone.
My deepest excision surgery with Dr Nezhat helped a lot, but the past few years it’s been getting worse.
My doctor is making me try an iud before a hysterectomy. I know it’s not a solution or cure but I know it will give me some of my life back. My sister had one earlier this year and she’s so happy she did it.
In the meantime (take it with a grain of salt), I’m using a red light and drinking herbal tea blends and (occasionally) feeling sorry for myself. I have found consistency of drinking tea will help with symptoms. I’ve been using Goddess tea blend from Avery Apothecary and adding extra rose hips or oat straw.
Aww hun, I hear you. Where in the world are you? I'm UK and I'm just getting my medicinal canabis licence so that I can use out and about.
Im at the stage where pain relief doesn't work well. I'm looking at the alternative medicine of mind altering drug therapies as there is some emerging evidence that it can reset our pain signal pathway. Psilocybin/Ayahuasca is my next hope
So sorry your going through this I myself going through the exact same things that you’re dealing with i pray that you get the help you need quickly this as impact my mental health my every day quality of life in a negative way I have very little interest in doing thing that I use to enjoy.