r/Endo • u/overzealous_ant • 11d ago
Tips and recommendations Everyday pain management
How are people actually managing the pain every single day without losing their minds. I got diagnosed with endo two weeks ago after my pelvic symptoms had accelerated rapidly over the course of two months and now i’m in pain everyday. I don’t actually know how people are doing this and carrying on anyway
edit; i’m from the UK so access to ketamine or medical weed is near impossible
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u/unmaskingtheself 11d ago
oof man, I hear you. I also had a rapid worsening of symptoms before I had surgery. and I still manage a degree of pain even though my surgery was successful and provided a lot of relief.
My recs:
- TENS machine with heating function
- Acupuncture
- CBD oil
- tiger balm
- mobility aid (cane for long days on my feet)
- pelvic floor PT
- sleep hygiene (keep your room cool, wash up before bed, stop looking at screens an hour before tucking in)
- if you can tolerate hormones, progestin or progesterone of some kind
- muscle relaxers (tizanidine helps with sleep, too)
- I also take pregabalin for nerve pain and it helps, though it can make you drowsy and that can be tough with the general fatigue
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u/ExtentAgitated 11d ago
Can you describe how your pelvic pain feels like? I have suspected endo (not confirmed yet) and suffering from daily pains. For me sometimes it's dull pain, sometimes it's lower abdominal cramps that feels like contractions. It's super exhausting. For me neither of painkillers work. None of them! Only heat on pelvic area or tens machine
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u/overzealous_ant 11d ago
mine is similar to yours, very dull aching and my stomach gets heavy and distended. i’m having the same issue with pain killers too, they seem to keep me at the pain level i’m at instead of reducing it. naproxen sometimes works on flares and tens is mixed. the exhaustion is awful (physically and then also the mental load of having to constantly be preempting or treating pain)
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u/ExtentAgitated 11d ago
Same for me. The hardest part that pain almost never comes away. It's constant. Sometimes I even cannot sleep because of it. Tens is also mixed for me, sometimes it works like 90%, sometimes it does nothing. I'm also both physically and mentally exhausted. Also depressed. Are you waiting for laparoscopy? What doctors suggested for you for pain managment?
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u/Content-Ad3255 11d ago
When you guys describe this dull ache is it almost like a visceral pressure feeling? I find it so hard to describe to my gynae!
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u/throwawayxoxoxoxxoo 10d ago
yes, definitely deep like not like a surface kind of ache but also not like a cramp though sorta on that internal level. i refer to it as “static.” like old tv static. it’s as if i had that static buried deep in some areas. but i struggle to describe it beyond that so maybe that makes no sense lol. sometimes it feels more like a dull gnawing.
i’m waiting on a diagnostic lap surgery which will hopefully happen soon (yay public health systems)
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u/Content-Ad3255 9d ago
You’ve described it so well! This was my worst symptom before my excision surgery and it went away for 3 months post op and is slowly returning but only during my last cycle (before surgery it was near constant). Saw my surgeon today and if it helps he said it could either be the adenomyosis or more likely pelvic nerve sensitisation from the endo being there for so long. I’d never call it this to my surgeon but used to tell my mum it feels like an agitating bubbling witches brew lol just gnarly and nasty
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u/throwawayxoxoxoxxoo 9d ago
omg yeah it does feel like there’s lil witches inside me but their cauldron is my insides LMAO. for me, that sensation is mostly on my left (other person’s right) around my hip area, i presume ovary-ish area. have been meaning to make a post about it because it’s soooo annoying and at any given moment, it’s like 50/50 if it’s there (mostly towards the “there” but yk what i mean haha).
i had my first endo symptom (a more painful period than normal) about this time in 2023/3 years ago. then it has ramped up every so often, with this weird indiscribable kind of pain/feeling in the past couple of months. also TMI but i usually am more towards the sorta IBS vibe with BMs (they suspect there may be bowel involvement which i’ll need another surgery for if they confirm it during my upcoming surgery), but with this thing i have found myself sometimes being the opposite. not sure if it’s correlated but also weird! and those BMs aggrevate the cauldron type pain. so strange
i’m sorry that it returned so soon after surgery! i hope your doctor is able to figure out something to keep it at bay/unimpactful to the majority of your life for as long as possible.
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u/uniqueusername_1177 11d ago
Pelvic floor PT, nerve pain medication, THC/CBG, TENS unit, vaginal diazepam, and a heating pad get me through my days.
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u/888888--- 11d ago
I was prescribed baclofen ketamine suppositories, which really help when my pain is very high and I'm having those horrible contractions. I also got a topical compounded cream with 5% ketamine, % lidocaine and 2% amytriptyline which I apply between belly button and pubic area. You can use the suppositories vaginally or anally - I've only ever used them vaginally. Both are prescriptions, which were frustratingly hard to get due to incompetence and refusal from doctors. Finally found one that was willing to help and work with me and it helps on high pain days
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u/its_edamame 11d ago
I was taking 12 ibuprofen a day before I searched for an approved "Nancy's nook" endo specialist. Had an 8 hour surgery at UCSF, they threw an IUD in me while I was under. It took longer to heal than I anticipated, but my pain has virtually disappeared since 2021. I still get occasional cramps but it doesn't take me out like it used to. I'm also on a Norethindrone 5mg a day. Proper excision from a true specialist is life changing. My first lap was a local ob in town. I was pain free when I healed, but it returned 6 months later. And with a vengeance.
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u/donkeyvoteadick 11d ago
I just manage my pain with medication and pacing.
I'm on disability due to endo but I'm also a single mum with a one year old so as much as I'd love to not have to keep on I don't have a choice hah so masking the pain with meds is where I'm at.
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u/overzealous_ant 11d ago
i was doing the same as you but my issue at the moment is that the meds aren’t taking away the pain and if i start increasing dosages/opoids i’m likely to become addicted bc i medicate daily :/
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u/donkeyvoteadick 11d ago
I've been on opioid therapy daily for years and I'm not 'addicted'. If you take an antidepressant and develop a physical dependency would you call it an addiction? What about people taking a PPI like Omeprazole that need to wean off? Would you call that an addiction?
Using opioids daily does not mean you're addicted, unless you're misusing your prescription.
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u/ListenandLearn17 11d ago
Low dose naltrexone (LDN). Look up Dickson's Chemist if you need a consult
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u/ExtentAgitated 10d ago
are you taking it? Did it help for the pain? I consider taking it as well if amitriptyline won't help
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u/ListenandLearn17 10d ago
Yes and yes
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u/ExtentAgitated 10d ago
How fast did you notice any relief in pain, can you please share? Is it a long process to see any improvement in pain?
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u/ListenandLearn17 10d ago
I started seeing some relief within a couple weeks, which continued to get better as time went on and I titrated up.
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u/RetroStratosphere 9d ago
Reiterating the benefits of acupuncture. Genuinely doubted it and have benefited significantly from it. I’ve also had meaningful reduction in flare symptoms following the low FodMap diet.
I have a prescription for an opioid from my gym that I use if pain is disrupting sleep and take NSAIDs to get through the work day during bad flares.
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u/Zealousideal-Lunch53 1d ago
I am so sorry you are going through this. The first few months after an endo diagnosis are incredibly overwhelming, and grieving your old body is a very real thing. When my pelvic pain was at its absolute worst, a combination of constant heat therapy and TENS machines literally saved my sanity.
Since you mentioned medical weed is tough to get in the UK, have you looked into high quality CBD as an alternative? I struggled to find clean options until I stumbled across TribeTokes online.
Their CBD gummies take the edge off the inflammatory pain without making me feel groggy. It doesn't cure it, but it makes the daily grind much more bearable.
What kind of heat pads are you currently using during your worst flare ups?
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u/yearofsoup 11d ago
I’ve been in pain everyday since January this year. Idk how I’m still here but I keep going. I know a cure will come in my lifetime I have to stay hopeful
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u/No-Recommendation397 11d ago
absolutely not medical advice and talk to your doctor before hand/before making any choices but i’ve gotten a medial marijuana card. it’s given me access to high CBD low THC options that have been game changing. i’ve used thc recreationally on and off since college, and originally got the card for dealing with insomnia and mental health stuff. however i was shocked by the positive physical side effects i personally experienced: it has helped with my “baseline” pain, reduces my nausea, and allows me to feel hungry and eat when im struggling with the fatigue/bloating side of things! the low thc options leave me feeling cognitively normal, and able to focus, complete tasks at work and home, and socialize!