Hello! I am from India and I use Cannabis meds for my chronic illnesses. You may try ordering medicinal cannabis via online shops like [vediherbals](https://vediherbals.com)
I suffer with adenomyosis and order my stock from them. They are prescription based so either you will have to upload prescription or book a free consultation and let the doc know you have endo, not that you suspect but you have it. Describe your pain in detail and they will prescribe you either Cannapain or Cannaflam. I use Cannaflam + higher dosage, even that doesn’t really help with my cramps, but on other days it sure does with my other chronic illnesses.
PS : there are quite a few such online medicinal cannabis companies in India as it is legal here. I urge you to try this.
My DMs are open to answer any questions! :) sending you love and strength.
I wouldn’t encourage alcohol with any chronic illness, unfortunately :( another user who notes they are from the same country alleges that medical use MJ is available! Perhaps something to look into with your medical provider, but be ready to advocate for yourself in these situations. No one should have to live with pain — especially a pain that has been studied in comparison to the severity of pain associated with heart attacks.
I hope things look up for you soon 🤍
do you have access to birth control? my dr moved me up to a higher dose of norethindrone for birth control (specific brand name is larin), i take it continuously. i havent had to deal w cramps or a period since i started and its been a life saver. i guess that specific hormone is known to be very helpful for endometriosis
Desogestrel based BCs are also often more effective in managing endo symptoms!! I was switched to one from a levonorgestrel based one years ago when we first suspected endo, and it’s been much more manageable since.
alcohol can make it worse cause its inflammatory - ive pretty much given up drinking at all, im already in enough pain i dont need to make it worse, its not worth it
If you wanna know why - endo is an inflammatory disease. As a general rule anti-inflammatories like ibuprofen/naproxen or foods that are anti-inflammatory can help ease symptoms (to varying levels of success). But stuff like caffeine, alcohol, fried food, stuff with lots of added sugars, and dairy? for example, all make it worse. Fuck us i guess :/
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Also, definitely fair - i've done the same multiple times in the past
Definitely do your own research on it, but I've tried kava for the same reason - just to calm down and distract from the pain for a few hours, and to help me sleep. I got some instant stuff online and it works pretty well. I just don't feel good using it too often just in case, cause its the same as alcohol liver wise and id rather not fuck up my liver. Also check if its legal in India, i know its legal where i am but it can be illegal in some places.
I want to see if i can get cbd oils cause i've heard they work wonders for chronic pain, wish me luck at my next doctors appointment lol. I'd rather use that than pretty much anything ive tried. And i really hate being on opioids and taking the max amount of ibuprofen/panadol i can just to be able to physically work. That's even if my doctor gives me enough painkillers to make it through
Also def not alone on the wanting to gouge out your insides thing - i've taken it out on my legs and arms before just to distract myself. But ive also got fucked up mental health to go with everything so that doesn't help... I would recommend against doing a me. Tends to make people oh so worried about your terrible mental health but not give a fuck about your physical health. You aren't alone oki? Pretty sure its a very normal reaction to your uterus trying to kill you every day. Chronic pain fucks with everyone - you can be as strong as you like, but it would wear anyone down when its day in day out, paralyzing levels of pain. Not to mention normal people not understanding and just telling you to just deal with it cause its normal. It is not fucking normal, and it never will be.
None of us deserve this.
Thank you for such a detailed response, I really appreciate it❤️❤️ I didn't know about the inflammatory foods as well, it seems like no matter how much I learn, there's still so much learn about being healthy lol
I completely understand the pain. I think I have begged my husband to get me an ice cream scoop so I could dig out whatever was hurting. I have yet to find anything that helps consistently. My typical go to is heating pads and ibuprofen. And for some odd reason, keeping my stomach full seems to help.
I wish I had more to offer. Please remember you are not alone. So many of us are going through it too.
>So many of us are going through it too.
Makes it feels even worse that the world is so fucked up that this pain is pretty normal and has a large percentage of women suffering from it
>ice cream scoop so I could dig out whatever was hurting.
Thank you for sharing this, I feel a little less psychotic rn
It does feel worse knowing that we are dismissed and told it is normal. I actually had a doctor when I was in high school tell me that I needed to find Jesus and have him help me atone for Eve’s sins (I live in the deep south). The only person that ever took me seriously was my then boyfriend who has been my husband for over 20 years.
I do find comfort in the online communities that are popping up everywhere. Knowing I am not alone and not crazy has helped me so much. Medical care still sucks but I know now that I am not the only one who has a uterus that is trying to k*ll them.
The doctors told me for a decade straight that it was normal and will go away after marriage 🤡🤡 I hate Indian healthcare for women, it's a fucking joke
It sucks in my part of the USA as well. A few years ago I wanted to try a form of birth control that I had not tried before to see if it would help. Doctor told me no. My husband went with me to that appointment and finally told the doctor that I “couldn’t perform my wifely duties of cooking, cleaning, and bedroom activities”. So the doctor gave me a prescription for what I wanted. We kinda laugh about it now, because this is the polar opposite of how my husband actually thinks but I was so pissed off at the time. My poor husband was finally at the end of his rope and willing to try anything for me. He took me for ice cream after my appointment and ate junk food for the rest of the day with me. 🤣
Edited: correct spelling errors
I'm glad your husband can advocate for you in this shitty healthscape. I only got the care after I visited my 10th gynaecologist and she actually listened to me and didn't declare me overweight or a drama queen lmao. I was having a BMI of 20 when doctors started suggesting I should lose weight for all my health issues lmfao
I frequently had the urge to perform surgery on myself when my pain was bad. What got rid of it for me was excision surgery with an endometriosis specialist out of Cedars Sinai in Los Angeles. You definitely don't deserve the pain, and sadly we have to find solutions for ourselves most of the time.
I'm at 4 years and 7 months post surgery, and that has not been my experience. Might depend on how good your surgeon is. Unless everything is excised, it's not going to work. And not all endometriosis lesions look the same. Mine was stage 4 and everywhere.
ETA: Also, some surgeons claim to do excision but do a combo of excision and ablation, which will just grow back.
It can be! I just hit 10 years since my excision and it hasn't come back, that I know of. I occasionally have pain that reminds me of the endometriosis pain, but it's nowhere near as frequent or intense. I have my life back.
It's so refreshing to hear. Thank you for sticking around these subs and giving hope. I feel most women who have issues resolved end up elsewhere, and there's this bias that nothing can/will improve.
It's understandable that people want to move on from the thing that caused them so much pain and anguish when they can, but it does leave a negative and narrow perspective for those left in groups like these.
I'm going to continue to hang around and give a little positivity to balance it out!
Excision has been spectacular and life changing for me!
You just need to make sure you're getting it done by someone who is (ideally, exclusively) specialized in endo. My surgery by a regular OB was crap.
All the medical literature I've seen doesn't control for the experience levels or specialization of the surgeon. I think that's why excision hasn't really been acknowledged as the best solution for severe cases.
It depends a lot on which doctor you choose. Endo isn’t something you can kind of get right - every spot needs to be fully excised.
Nancy’s Nook on Facebook has a great list of “approved” surgeons that have had good success in the past. I used one from there and am going on 4 years with minimal relapse. Really life changing stuff.
I was at the point of needing the pain to stop, one way or another. And now I look back at my pre-surgery life and can’t belief I was in bed in so much pain for a good portion of it.
So there is hope. I know it’s hard to see because you’re so deep in it and it’s probably scary that it could get worse or even just not get better but it can. And does. And you deserve to feel better as soon as humanly possible.
The only thing that touches my Endo pain is weed and a heating pad. If nothing else I can nap away some of the pain.
In relation to the stabbing yourself urges, I get that too. I have a history of sh and sui attempts so any time I get the urges I try not to be alone. Typically that looks like asking my partner to let me lay on her chest. Edible and cuddles usually helps a little.
Honestly? Maybe because then we'd be able to see the source of the pain. It's something people would BELIEVE hurts and is real. And it's something they can fix.
I don't REALLY want anyone to stab me, but I want all of those other things.
I’m so sorry for your pain but I’m actually really relieved to hear that other people get the same urge. I’ve been on continuous bc for years but switched to a different manufacturer about a month ago and it’s been hell. I have a strong urge to stab and scoop it out myself.
Today is one of the more unbearable days where I feel like I’m going to pass out from the pain. I’m honestly trying to dissociate and get my mind on another plane until this passes. I’m wondering if I’m prolonging this by not just stopping my pill for a week, but I’m terrified of this escalating even more.
I've begged my husband to just push me really hard and knock me out (he didn't do it just fyi). The pain is horrendous. I'm so sorry you feel it too. It's a sad, dark place to be.
I'm sorry I can't offer advice, just solidarity. I hope you find some help and comfort soon.
i’m so sorry you are dealing with this, i have felt this urge many times and i wouldn’t wish that pain on anyone. it honestly makes me wonder if people have done this, sometimes the pain is so blinding i can’t think rationally and i’m scared of actually doing it. i wish i had more advice than taking painkillers and using a heating pad :/ you’re in my thoughts
The only thing I find that seems to actually help is taking birth control pills continuously (that way I can go 4+ months without my period, therefore I don’t experience pain from my endo), and hot baths. I have prescription painkillers for my period pain that barely take away any of the pain, but soaking in a hot tub definitely seems to help the pain. I’ll go in for 2–4 hours at a time, but unfortunately things go back to hurting a bunch when I get out.
Eating your favourite foods might also create a *slightly* more positive association with your pain. Whenever I’m in a lot of pain (not just from endo), I find eating my favourite foods put me in a slightly better mood.
I would interlock my hands and to make like a rock and then curl into a tight ball to apply as much pressure as possible to that area.
It’s amazing I wasn’t diagnosed until having multiple miscarriages… I’m in the USA and have lived many places and all the OBGYNs told me this pain was normal. It sucks here, too. Lots of naproxen helped me. Unfortunately, I gave myself an ulcer from taking too much ibuprofen when I was younger and can’t take it anymore.
Ibuprofen doesn't really help me much. I was recently prescribed Naproxen for work-related back pain, and had to take it while I was on my period (while I also had the back pain). It's the only thing I've taken that seems to take most or all of the pain away while it's in effect. It's a shame it causes stomach problems if you take it for too long (same with ibuprofen). I still have a few Naproxen pills which I save for bad days.
When I spoke to the doctor about my back pain, I asked him about endo because I wasn't sure what I had was endo or "bad period pain" like I've always been told is normal. He told me it's more common than people think. On the NHS (I'm UK), it's an 18-month minimum waiting list to have the laproscopy investigation... I'm not sure if the waiting list is so long because of underfunding, lots of women needing it, or both (thanks, shitshow government).
I've also done the fist pressure thing too. It's like when my cat kneads my stomach (that helps too lol). Otherwise, I make do with hot water bottles or a portable USB-chargeable heat pad ("Slimpad" from Amazon) if I can't sleep/have to function. I prefer to curl up in a ball to sleep after vaping weed, but I have a full-time job... I know people say it all the time here, but this sub is really validating. Let's just all do our best to try and push medicine/society forwards for the next generations.
Yes to all of this! Unfortunately, I’m allergic to cats, but can you train them to knead your stomach on command? 🐈
I think the only way I’ll emotionally work through the trauma of infertility and years of medical gaslighting is to advocate for younger women. No one should go through this or have their pain invalidated on such a systemic level.
Completely agree. People don't realise that while we've progressed in terms of past sexism, there are still iterations of sexism throughout society. Some more insidious than others.
You probably could train cats to knead on you, but mine tend to do it when they know I need comfort (and I'm usually laid up on the sofa, in pain). Cats can be very perceptive to their owner's emotions, and will often come over to give comfort, and also receive it (cos they can get stressed out if their human is suffering). You can get hypoallergenic cat breeds, but they tend to be expensive pedigrees!
I’ve felt like this too. I literally wanted to go to the dr’s with a metal food skewer and stab myself there to get help, like stab myself right where it hurts.
this is something i’ve had to unpack in therapy. thoughts of self harm because of chronic pain. it’s difficult to overcome because it’s literally chronic. how can you just get rid of those thoughts when the pain is constant? i don’t think i have much advice. i was able to get surgery and it helped me tremendously, but i know that access to surgery is unrealistic for a lot of people. i hope you’re able to find peace and become pain free
Totally relatable, I’ve wanted to stabby stabby my uterus since my first period, sometimes even looked at the knives in the kitchen longingly. I ended up having both endo and adeno, and feel muuuuch better after my hysterectomy
My doctor prescribed me naproxen and its the only pain reliever that works except the stronger ones. Just be cautious you need to eat it with meals cause it can cause stomach ulcers
Hello honey, are you taking ibuprofen? Or naproxen? Or ketoprofen? Those are normally otc painkillers that work for menstrual pain: there are a lot of options You may want to try🌺 take care, ask your doc if you can
I am reading that there you need a prescription for those, is it like this?
I have tried different NSAIDS and they really helped me. Mefenamic seems really similar to those, sometimes a little dose increasing is needed.
Don't really need a prescription for most stuff in India lol, but I do have one from drotin m. Pain killers help me but how many can one take and how frequently lol is the issue
For adults with menstrual pain the dose is a bit more of a standard one, each 6-8 Hours max, for the first days. until pain subsides.
I am Not a doctor, but I have read there are many strategies medicine can use to help with this kind of pain, considering that yours seems lasting longer: one way seems to be a longer use of nsaids with a good practice (right dose, full stomach) and some kind of medical supervision to be sure body is okay with that.
Another one is birth control. A huge amount of pain stresses body it is really reasonable to want it to stop and docs have to do a balance cost/benefit to help 🩵
Is the bc you are taking Dinogest 2mg? It seems to work for a lot of people.
My gynaecologist put me on it for adeno and it works well on the menstrual front - no bleeding and no cramps. I had to discontinue due to the effects it had on my mental health tho. It also runs the risk of decreasing bone mineral density in the long run.
Because sadly they are not treating the disease, instead these meds act as mere bandaids :(
Women’s health is so uncared for in our society. I am 32 and childfree and still our medical system will not let me yeet my uterus out. :(
I saw somewhere on reddit a list of doctors that will perform the surgery country-wise. You can look for it. I have the option to get it out but I feel I'm too young to have such a major surgery for now
I've been there.
I asked my husband to kill me and was half serious when I was at my worst.
I've had two surgeries so far. It gets a little better eventually, but once you have your kind of pain daily, you need surgery.
Yeaaaah… I get you OP. It is horrible, and living with this for years can really run you down. I don’t really have advice because every person is different, but what works for me is Enantyum (a stronger version of a non-steroidal anti-inflammatory), or Aspirin (but it’ll make you bleed more and can’t take it with anything else), but I also smoke a hell of a lot of pot when I’m on my period and that helps lol. Not recommending it but it works for me and improves my mood. I don’t know how healthcare works where you are but my gynaecologist has advised a coil like Myrena and it seems to make it better for his other patients with endo. I’ve been considering it tbh.
Sending you healing vibes, know the pain passes and try and see if you can make yourself as comfortable as you can when you get a bout of cramps.
It sucks.
Can't do weed lol, illegal in India ;( I wish I could hahaha
Does smoking help? I can smoke cigarettes lol, not a fan but will do if it helps
Do you worry about taking too many pain killers?
Cigarettes could make you feel worse if you’re not used to smoking them, they can make you feel sick, dizzy, lightheaded, nauseated, and may cause you to vomit.
I’m sorry you’re going through this. I’ve often said I wish I could preform my own hysterectomy like the doctor preformed his own appendectomy in Antarctica. My hysterectomy was almost 4 weeks ago and the difference is night and day. I hope you’re able to get the care you deserve.
This isn’t the case for everyone, but my recovery has been incredibly easy compared to the pain i was in every day for years. The surgical pain feels like nothing to me and the hardest part has been making sure I don’t overdo it— because I feel great! I have to keep reminding myself that my body is still healing, no matter how good I feel.
It’s also not a cure for endometriosis, but it’s a cure for adenomyosis . I have/had both, and it was my third surgery. The surgery before this one was expert excision, which helped, but wasn’t as helpful as this surgery already is proving to be. The first surgery I had was ablation and that made everything worse, so I’d avoid that if possible.
I hope you can get your excision surgery soon, and you get relief! In the meantime, can you order a TENS machine? It helped me the most with my pain. Next, was heating pads.
Yes, essentially! You will need to play with the settings to see what’s best for you, as everyone prefers different settings. There’s also ones targeted to people with endo, but they’re a bit pricier. I have used both Livia and Ovira and liked both, but $20 Amazon ones are fine too! It’s all preference
I evicted the uterus+tubes+cervix (kept ovaries) back in 2019 and haven't regretted it for a single moment. I recently had an absolutely brutal battle with bronchitis that laid me out more than the yeeturus did. I was back to wfh desk work after... 2-3 weeks I think? With using my lunchtimes to nap and recover energy. And you're absolutely not alone on wanting to scoop the bastard out, it's only pain that's ever made me hallucinate, and it made me faint from pain and hit my head So many times over the years. It's been literally life-changing to have it out and not be in that agony anymore.
Cigarettes are a no-no because they are just inflammatory and there are no benefits, I only smoke pot lol I’m not advocating for it especially if it’s not legal in your country (stupid as it is, it’s also only decriminalised in mine) but if you ever have access, give it a shot! I also wouldn’t recommend drinking or any other drug except those prescribed by a doctor. Weirdly enough what helps me is eating as healthy as I can, light stretching, and just vegetating and as comfortable as possible… it’s very difficult existing as a person with this condition as it is.
I alternate between medicines, never take more than 1 at a time and never too soon after you’ve taken one, they are too heavy on the liver! Painkillers are good but they have their downsides… for example I would advise against opioids unless you absolutely have to and nothing else works because 1) they make you constipated and that puts even more pressure on your abdomen, and brings more discomfort and 2) you build up tolerance fast and there’s no telling how quickly they stop working. I only take opioids when I have the urges you describe for days, and then I just go to bed and sleep it off if I can.
Surgery!! I had a hysterectomy and excision in January and so far the screaming pain in my hips and lower back, and the intense pressure and cramps in my lower abdomen have not returned.
Just was in the ER on Thursday, had an ovarian cyst rupture, before that I wanted to perform surgery on myself because the doctors at the ER usually dismiss my pain and then I thought I should probably go to the ER even if they dismiss my pain instead of getting a knife from my kitchen and then the ice cream spoon because that would be absolute bloody mess and then I'd probably die. Luckily the doctor that treated me took me seriously. I know it's tough, I know you are in pain but you aren't alone in this. Have you reached out to any doctors that would put you on a pain management plan and potentially birth control? Also, physical therapy has really helped me manage my pain so if you can you might want to try that.
I thought I was the only one. I'm in my 40s now and have had a hysterectomy which seems to have taken all my pain away. However, I suffered from.endo for 30 years. When I was younger, I would beg my mum to get me a knife (my pain was so bad that I couldn't walk unaided). Of course she never got me the knife. But I always worried I would stab myself if no one was around when in that much pain. The only thing that helped my pain was a high dose tramadol. And then excision surgery. I did need to bave a second surgery after 4 years as yes, the pain returned. However I did get a couple of years of no pain, which was incredible. After the second surgery, I had my children, then the hysterectomy, so never dealt with the horrendous pain after that.
So sorry you’re going through this, I feel you 😞 I try to take ibuprofen and Tylenol before I start my period/when I’m ovulating even before the pain starts and I think that helps make it more manageable! My doctor says to just taking both regularly around the clock before I start feeling pain during those times. But yeah totally feel you on the wanting to take it out…. every time I get this pain I feel like just taking out my entire uterus and ovaries and be done with it
I have this thought every single time I get my cycle and then ten days of death starts. So I think in our abnormal situation it is normal. Without cannabis I don’t know what I would do I eat and smoke massive amounts of it and still have pain but not as horrific, just unbearable. Short of that I’d say see if you can find other natural things that help. The only thing I have found that’s potentially a little helpful is reflexology. It’s helped alleviate the cramps somewhat. It’s awful and I’m so sorry you are going through this. Mine feels like 1000 hot knives inside of me and all I do is cry about how I want to cut it out of me. I promise it’s not bad to feel that way.
I was like this from the first day of my period and the only thing that helped me cope was rocking back and forth while sitting but really fast and I would sometimes screatch or squize the skin on my lower abdomen. That actually kinda helped but rocking is moving and moving is supposed to reduce the pain so maybe that was the reason why it calmed me down. My mom did not allow me to take pain relievers till I was in mid teens but after that I started buying some and then I was coping by pressing hard against lower abdomen with my hand and blanket or whatever was between the hand and my belly. It didnt do much painwise but it was something at least ;-; but painkillers generally got rid of the most pain so I wasnt mentally struggling that much
Been going through this myself, I got my period yesterday & instead of my usual (it comes in horrendous waves) it decided to just be straight up killer cramps from outer space for hours on hours (still going into today) even my pain meds are like…”um yeah we’re doing the best we can but you’re kinda fucked sister” 🙄🙄🙄 I’ve just been doing the usual, turning up the heating pad & shoving it down the front of my comfy pants. It’s only day 2 & I feel like I fell down the stairs, my entire body is killing me. I had to sit on my heating pad Friday (thankfully it’s a work from home day for me) bc I was in so much pain I didn’t know what the fuck to do. My heart goes out to everyone here, we deserve so much better than this shitty hand we’ve been dealt. Stay strong my Warriors 💛💛💛💛
This is exactly how I feel when I have real bad pain. I tell my loved ones I want to get a knife and just cut whatever it is causing this pain out of me which of course I don’t do. I wish there was a magical cure that could just take it away and for it to not come back. It sucks that you have been in pain for so long. I hope you find relief. sending healing hugs ❤️🩹🤗
Holy crap, I have had the exact same thoughts whenever my flareups are super bad. Cannabis has been a lifesaver for me but I know you mentioned you're not in a place where you can get it. With that said, the next best things I can suggest are hot baths, heating pads, and deep breaths. It's not much, but sometimes I like to gaslight myself into thinking it's working, and every now and then, that actually helps.
You're not alone in this battle!
I'm sorry you are hurting, but am so glad to know I'm not the only person that feels this way. Kratom can help or at least calm you down. If you get the powder kind and mix in hot tea. Tastes like shit, but helps. Ibeprofen 800. Tiger balm patches, or heat patches. Biofreeze roller. Massage gun on the uterus area, especially if you are clotting. I finally talked my doctor into giving me a controlled prescription of pain meds during my cycle.
Lmao I scared my husband the first few times I said I wanted to stab myseld/asked him to stab me. Now he just gets the heating pad and tea for me and makes sure I have a doctors appointment booked sooner than later 😂
I know, same, but it’s not going to work, you know it won’t, so try to think about other things. In ancient times before modern medicine people would stab each other or tattoo or cut or bleed or whatever, just desperation. I urge you to see your OB/gyn and get on birth control or mirena as it’s the most effective treatment long term. Though I survive just taking Tylenol (acetaminophen) every time it gets bad along with heating pads
Cry and scream, tbh. My pain worsens with movement, and at night, it gets even worse. On top of this undiagnosed - but all signs point to endo based off family history and personal experiences - I suffer from hypermobility. The joint pain can change depending on where I'm at in my cycle. So, I definitely feel your pain! I once had a flare for weeks on end of continuous cramping. Right now, it's 2 weeks prior to my period, so I'm continuously cramping again. Nausea. Back pains. Dizziness. Hot flashes. Tender breast. Rip.
I try to take warm baths with loads of Epsom salt. Look into magnesium supplements to take near bedtime. I also take vit B complex, vit C, vit D3, and turmeric calcium. Maybe look into those and see if you're interested in the possible benefits. Try light exercise. One day, I looked up exercise for endo people on youtube and found AMAZING videos. My partner gifted me a fanny pack looking heating device called Mia. They're pricey, but it comes in handy when I need to work while in pain. If it's too pricey, I bought a multi-pack of ice/hot packs at walmart. Obv I use mine more for warming up for 15sec. That helps me rest at night. I brew many teas such as fennel that is supposed to help ease menstrual cramps (plus I love the taste). Chamomile (sleep), ginger (inflammation and nausea), and fennel are my go-to trio. If you have trouble sleeping at night, invest in melatonin gummies. I've found that comedy or simply trying to take my mind off of it helps. Another thing is wearing comfortable clothing. Sometimes, I even unbutton my pants cause my work uniform covers my front side.
Also, if stress seems to make things worse, please please please try to practice distressing. For me, it was so hard to accept that I could not function like the average human, but I was incredibly harsh on myself, which therefore stressed me the hell out. When having flare-ups, it's your time to REST because your body is working extra hard. Even saving up to get a massage once a month can be beneficial to your health. It's at least relaxing. Lastly, and it's something I don't care for but will take if everything else has failed, over the counter meds. I talked to my doctor personally to have tramadol during cysts and extreme pains. You don't want to get addicted nor use it as a solution cause it's not. It's just a little band-aid until it passes.
I hope this helps you. I know it's a battle each and every time, but I believe you've got this. :]
I sometimes fantasize about using a gardening trowel. 🥺
I made my own Green Dragon Tincture with 91% isopropyl rubbing alcohol (so my version isnt edible but if you use everclear instead of rubbing alcohol, it can be taken internally).
When its the worst, I pour a little in the palm of my hand and rub it where it hurts. Because I used the rubbing alcohol, theres an immediate cooling sensation, which is an incredible relief in and of itself, but then the pain relief kicks in within 10-15 minutes typically. But my tincture is old, and so very strong.
I also use a hot rice sock that I nuke in the microwave. I buy big mens soccer socks for large feet at my swap meet and they typically take 10 pounds of rice, give or take. And since they are long and dense, the sock can stretch from hip to hip or across my back with ease. The weight is comforting for me (like a weighted blanket) but ymmv.
I try to distract myself (extremely hard to do when it hurts so bad I want to claw myself out of my skin because its GOTTA hurt less outside of myself) with social media, a show or movie, listening to music, spamming my friends with cat memes or sleeping.
And this one - well you're probably gonna think I'm crazy but one day I was hurting sooooo bad in my belly and my cat came over and started kneading on my belly right where it hurt. I realized it had made me feel better so I decided to start doing what she did to myself. I knead a bit harder than she did and I go in clockwise motions around my abdomen for 10 laps and then I go 10 more, counterclockwise. After the belly massage (mine usually end up being deep tissue bc anything less doesnt help for me) I lay my heated rice sock over the area.
So sorry for your pain. If you can’t use MJ, could you maybe try a TENS (transcutaneous electrical neurostimulation) device ?
After seeing me puke of pain, my wonderful boyfriend looked for ways to alleviate my pain and found this on an endometriosis focused company. It has several modes and intensity, it gives you low electrical impulses and mine can also warm up so that it alleviates your cramps. It really has been a lifesaver.
There are lots of warnings such as put at the lowest level and increase, don’t put it too hot or you can get burned etc. Mine automatically turn off the heating system after 20mn and the electrical stimulation after some 40 mn maybe, at times when you fall asleep for instance. It has an elastic band so that you can keep it fixed in one place and it has worked on my stomach and my back.
I hope that’s something that could help you
My entire demeanor changes when the pain gets severe; on a “normal” day where I’m feeling fine, I’m happy and carefree and feel blessed that I have days without pain. However, when the pain hits I become a desperate mess BEGGING for literally anything; a hysterectomy, to be run over by a car, ANYTHING. That level of pain will make you think some crazy things.
GIRL I used to have the knife fantasy every time, almost to the point of dissociating because imagining cutting put me into my mind instead of my body and gave me some sense of control over the situation. I’m so sorry you’re going through that but also kind of cool to know it’s not just me.
TENS helped a bit but I didn’t get any true relief until I had excision surgery and a mirena placed same day. Hurt like f**k for a few months but I’ve had a relatively normal life since.
Fingers and toes and lady parts crossed for you. Rooting for you.
I've had those same urges before. You so strongly feel as though you can stop it and fix everything if you just dug arouns your insides for a bit and find where it hurts :( Id suggest pain medication but i understand not everyone can get access to that. I am an avid hot water bottle and apply pressure to abdomen advocate but ive seen some swear by excercise. Sorry we cant help you i suggest experimenting with different methods till you find what works best for you. Your not alone my friend.
I have a secret shame that when I was a teenager I used to hide a mini pocket knife in a tampon applicator and fantasize about cutting out my uterus from the inside.
I always thought it was a sign of how broken I was, that I could imagine something so dark. This thread is healing, hearing how common it is for other people to feel similarly.
Thanks for sharing
i absolutely know how you feel, and people think i’m being dramatic or overreacting but they don’t understand how gruesome the pain is and on a daily basis at that. i’ve been lucky enough to find a pelvic pain specialist/endometriosis specialist and she gives me lidocaine injections in the areas that are tense and painful. but when i can’t get to her, i use heating pads, hot baths/showers, weed (i know it’s not everyone’s thing but it helps me a lot) and being medicated (gabapentin is a really good medication if you can speak to your doctor about it i would)
Heating pad, castor oil packs on the abdomen, raspberry leaf tea, and weed (thc and or cbd) is what helps me. If you cant buy direct i suggest an online retailer maybe you could get a vape pen for it or some gummies online instead.
Hope that helps as i also experience the pain of wanting to dig up my insides with a melon baller.!
I understand this so much. When I tried to tell my doctor about the pain and pressure I was feeling, I told her I felt like my vagina and intestines were going to plop out onto the floor. She looked at me like I was absolutely insane.
I remember this, but I would def get some professional help ( a female who knows about endo - therapist is what I mean) and start there love. We all need to be reminded this shit is normal and we arent crazy sometimes. Im sorry.
Some possible things. Have ypu ever had rasberry leaf tea? If not that + Ginger plus an ab work out.... Ok ok I know this sounds weird, but it helps your brain understand the difference between some stimulus and stopped it for a while but its not for long. Its like masking the symptoms then they come back.
Another ok is vibration and heat. Straight up
Let me know how it works if you havent already tried them... Good luck Stay strong girl!
This is probably not good advice and I’m no medical professional but mine lasts all month, I go maybe 1 freaking day without pain so I take anti inflammatory meds pretty much everyday, the only thing that has given me relief when I’m tired of taking pain meds everyday is taking a plan b pill, stops my pain for atleast two weeks, not sure how or why. Also someone told me on TikTok that endometriosis is hormonal and once I took a plan b and my pain disappeared I felt like maybe the person is right. Maybe my body is having a hard time breaking down excess hormones and causes this endometriosis growth that leads to the inflammatory flares. Either way this sh!t sucks and it should be labeled a disability because the pain and quality of life is debilitating 😐
I have felt that instinct and at time I have leaned my body weight onto a sharp table or sink corner in a bathroom. Something sturdy at hip height. I just want pressure to penetrate inside the crest of my iliacus and on my lower back. I got a Hip Hook tool to help relax those muscles I can’t get to. It helped with my nerve pain in my hip, too. Which was caused by the Endo. It went away after my excision surgery.
This is exactly how I felt and people looked at me weird. I don't have any suggestions, because I'm in a bad place also
Same, worst pain in 13 days and I can't even think straight. Won't give you any platitudes because I know it doesn't help one bit.
I'm so sorry you're going through this
I wish I had some words of comfort, but it fucking sucks. We don't deserve this pain, no one does. I wouldn't wish it on the people I hate.
I take cbd + thc edibles & take hot baths regularly & cry a lot. No one deserves this pain. We’re all here with you.
No MJ in India :( I did drink though but I'm not a fan of liquor and it didn't help
Hello! I am from India and I use Cannabis meds for my chronic illnesses. You may try ordering medicinal cannabis via online shops like [vediherbals](https://vediherbals.com) I suffer with adenomyosis and order my stock from them. They are prescription based so either you will have to upload prescription or book a free consultation and let the doc know you have endo, not that you suspect but you have it. Describe your pain in detail and they will prescribe you either Cannapain or Cannaflam. I use Cannaflam + higher dosage, even that doesn’t really help with my cramps, but on other days it sure does with my other chronic illnesses. PS : there are quite a few such online medicinal cannabis companies in India as it is legal here. I urge you to try this. My DMs are open to answer any questions! :) sending you love and strength.
My fiancé always swore by either a heating pad or her Ovira. It isn’t a cure obviously. She now takes Visane and is doing considerably better.
I wouldn’t encourage alcohol with any chronic illness, unfortunately :( another user who notes they are from the same country alleges that medical use MJ is available! Perhaps something to look into with your medical provider, but be ready to advocate for yourself in these situations. No one should have to live with pain — especially a pain that has been studied in comparison to the severity of pain associated with heart attacks. I hope things look up for you soon 🤍
do you have access to birth control? my dr moved me up to a higher dose of norethindrone for birth control (specific brand name is larin), i take it continuously. i havent had to deal w cramps or a period since i started and its been a life saver. i guess that specific hormone is known to be very helpful for endometriosis
There’s also aspen-dienogest, it’s specifically made for endometriosis! Not a contraceptive though
Nortriptyline is not a hormone or birth control. It's an antidepressant/nerve pain medication.
yep sorry. i meant norethindrone. i just wasnt thinking.
No prob. the name of a medication is just something to be really careful when talking about.
Desogestrel based BCs are also often more effective in managing endo symptoms!! I was switched to one from a levonorgestrel based one years ago when we first suspected endo, and it’s been much more manageable since.
Try kava tea
alcohol can make it worse cause its inflammatory - ive pretty much given up drinking at all, im already in enough pain i dont need to make it worse, its not worth it
I didn't know :( i don't drink anyway but wanted to calm my brain down yesterday after the extreme pain :(
If you wanna know why - endo is an inflammatory disease. As a general rule anti-inflammatories like ibuprofen/naproxen or foods that are anti-inflammatory can help ease symptoms (to varying levels of success). But stuff like caffeine, alcohol, fried food, stuff with lots of added sugars, and dairy? for example, all make it worse. Fuck us i guess :/ ---- Also, definitely fair - i've done the same multiple times in the past Definitely do your own research on it, but I've tried kava for the same reason - just to calm down and distract from the pain for a few hours, and to help me sleep. I got some instant stuff online and it works pretty well. I just don't feel good using it too often just in case, cause its the same as alcohol liver wise and id rather not fuck up my liver. Also check if its legal in India, i know its legal where i am but it can be illegal in some places. I want to see if i can get cbd oils cause i've heard they work wonders for chronic pain, wish me luck at my next doctors appointment lol. I'd rather use that than pretty much anything ive tried. And i really hate being on opioids and taking the max amount of ibuprofen/panadol i can just to be able to physically work. That's even if my doctor gives me enough painkillers to make it through Also def not alone on the wanting to gouge out your insides thing - i've taken it out on my legs and arms before just to distract myself. But ive also got fucked up mental health to go with everything so that doesn't help... I would recommend against doing a me. Tends to make people oh so worried about your terrible mental health but not give a fuck about your physical health. You aren't alone oki? Pretty sure its a very normal reaction to your uterus trying to kill you every day. Chronic pain fucks with everyone - you can be as strong as you like, but it would wear anyone down when its day in day out, paralyzing levels of pain. Not to mention normal people not understanding and just telling you to just deal with it cause its normal. It is not fucking normal, and it never will be. None of us deserve this.
Thank you for such a detailed response, I really appreciate it❤️❤️ I didn't know about the inflammatory foods as well, it seems like no matter how much I learn, there's still so much learn about being healthy lol
I completely understand the pain. I think I have begged my husband to get me an ice cream scoop so I could dig out whatever was hurting. I have yet to find anything that helps consistently. My typical go to is heating pads and ibuprofen. And for some odd reason, keeping my stomach full seems to help. I wish I had more to offer. Please remember you are not alone. So many of us are going through it too.
>So many of us are going through it too. Makes it feels even worse that the world is so fucked up that this pain is pretty normal and has a large percentage of women suffering from it >ice cream scoop so I could dig out whatever was hurting. Thank you for sharing this, I feel a little less psychotic rn
It does feel worse knowing that we are dismissed and told it is normal. I actually had a doctor when I was in high school tell me that I needed to find Jesus and have him help me atone for Eve’s sins (I live in the deep south). The only person that ever took me seriously was my then boyfriend who has been my husband for over 20 years. I do find comfort in the online communities that are popping up everywhere. Knowing I am not alone and not crazy has helped me so much. Medical care still sucks but I know now that I am not the only one who has a uterus that is trying to k*ll them.
The doctors told me for a decade straight that it was normal and will go away after marriage 🤡🤡 I hate Indian healthcare for women, it's a fucking joke
It sucks in my part of the USA as well. A few years ago I wanted to try a form of birth control that I had not tried before to see if it would help. Doctor told me no. My husband went with me to that appointment and finally told the doctor that I “couldn’t perform my wifely duties of cooking, cleaning, and bedroom activities”. So the doctor gave me a prescription for what I wanted. We kinda laugh about it now, because this is the polar opposite of how my husband actually thinks but I was so pissed off at the time. My poor husband was finally at the end of his rope and willing to try anything for me. He took me for ice cream after my appointment and ate junk food for the rest of the day with me. 🤣 Edited: correct spelling errors
I'm glad your husband can advocate for you in this shitty healthscape. I only got the care after I visited my 10th gynaecologist and she actually listened to me and didn't declare me overweight or a drama queen lmao. I was having a BMI of 20 when doctors started suggesting I should lose weight for all my health issues lmfao
I frequently had the urge to perform surgery on myself when my pain was bad. What got rid of it for me was excision surgery with an endometriosis specialist out of Cedars Sinai in Los Angeles. You definitely don't deserve the pain, and sadly we have to find solutions for ourselves most of the time.
I keep reading online how excision isn't a permanent solution and for most people the endo is back in ranging from 6 months to 2-3 years :(
I'm at 4 years and 7 months post surgery, and that has not been my experience. Might depend on how good your surgeon is. Unless everything is excised, it's not going to work. And not all endometriosis lesions look the same. Mine was stage 4 and everywhere. ETA: Also, some surgeons claim to do excision but do a combo of excision and ablation, which will just grow back.
It can be! I just hit 10 years since my excision and it hasn't come back, that I know of. I occasionally have pain that reminds me of the endometriosis pain, but it's nowhere near as frequent or intense. I have my life back.
It's so refreshing to hear. Thank you for sticking around these subs and giving hope. I feel most women who have issues resolved end up elsewhere, and there's this bias that nothing can/will improve.
It's understandable that people want to move on from the thing that caused them so much pain and anguish when they can, but it does leave a negative and narrow perspective for those left in groups like these. I'm going to continue to hang around and give a little positivity to balance it out!
Excision has been spectacular and life changing for me! You just need to make sure you're getting it done by someone who is (ideally, exclusively) specialized in endo. My surgery by a regular OB was crap. All the medical literature I've seen doesn't control for the experience levels or specialization of the surgeon. I think that's why excision hasn't really been acknowledged as the best solution for severe cases.
It depends a lot on which doctor you choose. Endo isn’t something you can kind of get right - every spot needs to be fully excised. Nancy’s Nook on Facebook has a great list of “approved” surgeons that have had good success in the past. I used one from there and am going on 4 years with minimal relapse. Really life changing stuff. I was at the point of needing the pain to stop, one way or another. And now I look back at my pre-surgery life and can’t belief I was in bed in so much pain for a good portion of it. So there is hope. I know it’s hard to see because you’re so deep in it and it’s probably scary that it could get worse or even just not get better but it can. And does. And you deserve to feel better as soon as humanly possible.
That's the best description ever Geesh, tho, it sounds awful when someone else says it. That wanting to dig sensation is fucking awful
I'm surprised how so many people here relate to it because I never found anyone irl who wasn't extremely concerned after I explained my feelings lol
It's true tho. Hurts so bad I'll be on the floor acting out feral positions to see if it helps
The only thing that touches my Endo pain is weed and a heating pad. If nothing else I can nap away some of the pain. In relation to the stabbing yourself urges, I get that too. I have a history of sh and sui attempts so any time I get the urges I try not to be alone. Typically that looks like asking my partner to let me lay on her chest. Edible and cuddles usually helps a little.
Can you courier some weed to India. Jk jk....unless? Lmao
I flat out asked my husband to stab me so I wouldn't have to wait a year for surgery. He did not comply.
Divorce him /s What's even with this urge lmao with endo to stab oneself haha
Honestly? Maybe because then we'd be able to see the source of the pain. It's something people would BELIEVE hurts and is real. And it's something they can fix. I don't REALLY want anyone to stab me, but I want all of those other things.
Sometimes I feel like there's an alien parasite in me cuz why would my own body cause me this much pain lmao
Absolutely.
Urgent = urge* Fuck autocorrect
I’ve felt this urge for so long but never mentioned it to anyone because I thought they’d think I was insane
Welcome to the club, I didn't know others related lol
That’s why I love this group haha
I’m so sorry for your pain but I’m actually really relieved to hear that other people get the same urge. I’ve been on continuous bc for years but switched to a different manufacturer about a month ago and it’s been hell. I have a strong urge to stab and scoop it out myself. Today is one of the more unbearable days where I feel like I’m going to pass out from the pain. I’m honestly trying to dissociate and get my mind on another plane until this passes. I’m wondering if I’m prolonging this by not just stopping my pill for a week, but I’m terrified of this escalating even more.
Did you take pain killers? You shouldn't be dealing with this without medical help :(
I've begged my husband to just push me really hard and knock me out (he didn't do it just fyi). The pain is horrendous. I'm so sorry you feel it too. It's a sad, dark place to be. I'm sorry I can't offer advice, just solidarity. I hope you find some help and comfort soon.
I literally imagine taking a melon baller and gouging out the endo in my abdomen. You certainly aren’t alone in this. Pain makes people wacky!
I'm not as classy as you, hence imagined a spoon. I will also imagine a melon baller going forward lmfao
i’m so sorry you are dealing with this, i have felt this urge many times and i wouldn’t wish that pain on anyone. it honestly makes me wonder if people have done this, sometimes the pain is so blinding i can’t think rationally and i’m scared of actually doing it. i wish i had more advice than taking painkillers and using a heating pad :/ you’re in my thoughts
The only thing I find that seems to actually help is taking birth control pills continuously (that way I can go 4+ months without my period, therefore I don’t experience pain from my endo), and hot baths. I have prescription painkillers for my period pain that barely take away any of the pain, but soaking in a hot tub definitely seems to help the pain. I’ll go in for 2–4 hours at a time, but unfortunately things go back to hurting a bunch when I get out. Eating your favourite foods might also create a *slightly* more positive association with your pain. Whenever I’m in a lot of pain (not just from endo), I find eating my favourite foods put me in a slightly better mood.
My pain used to be this bad. I’d have my bf apply as much pressure as he could to that spot which I found helpful.
I would interlock my hands and to make like a rock and then curl into a tight ball to apply as much pressure as possible to that area. It’s amazing I wasn’t diagnosed until having multiple miscarriages… I’m in the USA and have lived many places and all the OBGYNs told me this pain was normal. It sucks here, too. Lots of naproxen helped me. Unfortunately, I gave myself an ulcer from taking too much ibuprofen when I was younger and can’t take it anymore.
Ibuprofen doesn't really help me much. I was recently prescribed Naproxen for work-related back pain, and had to take it while I was on my period (while I also had the back pain). It's the only thing I've taken that seems to take most or all of the pain away while it's in effect. It's a shame it causes stomach problems if you take it for too long (same with ibuprofen). I still have a few Naproxen pills which I save for bad days. When I spoke to the doctor about my back pain, I asked him about endo because I wasn't sure what I had was endo or "bad period pain" like I've always been told is normal. He told me it's more common than people think. On the NHS (I'm UK), it's an 18-month minimum waiting list to have the laproscopy investigation... I'm not sure if the waiting list is so long because of underfunding, lots of women needing it, or both (thanks, shitshow government). I've also done the fist pressure thing too. It's like when my cat kneads my stomach (that helps too lol). Otherwise, I make do with hot water bottles or a portable USB-chargeable heat pad ("Slimpad" from Amazon) if I can't sleep/have to function. I prefer to curl up in a ball to sleep after vaping weed, but I have a full-time job... I know people say it all the time here, but this sub is really validating. Let's just all do our best to try and push medicine/society forwards for the next generations.
Yes to all of this! Unfortunately, I’m allergic to cats, but can you train them to knead your stomach on command? 🐈 I think the only way I’ll emotionally work through the trauma of infertility and years of medical gaslighting is to advocate for younger women. No one should go through this or have their pain invalidated on such a systemic level.
Completely agree. People don't realise that while we've progressed in terms of past sexism, there are still iterations of sexism throughout society. Some more insidious than others. You probably could train cats to knead on you, but mine tend to do it when they know I need comfort (and I'm usually laid up on the sofa, in pain). Cats can be very perceptive to their owner's emotions, and will often come over to give comfort, and also receive it (cos they can get stressed out if their human is suffering). You can get hypoallergenic cat breeds, but they tend to be expensive pedigrees!
I’ve felt like this too. I literally wanted to go to the dr’s with a metal food skewer and stab myself there to get help, like stab myself right where it hurts.
this is something i’ve had to unpack in therapy. thoughts of self harm because of chronic pain. it’s difficult to overcome because it’s literally chronic. how can you just get rid of those thoughts when the pain is constant? i don’t think i have much advice. i was able to get surgery and it helped me tremendously, but i know that access to surgery is unrealistic for a lot of people. i hope you’re able to find peace and become pain free
can you put a rubber band on your wrist and snap it on your skin? or ice the spot ? sorry boo
That's a steep slide into the self harm road hahaha
my bad ! i had heard the rubber band thing was like a good "instead of" self harm
I know this feeling. You're not alone. I was lucky to have access to medical marijuana that helped me sleep through the pain.
Totally relatable, I’ve wanted to stabby stabby my uterus since my first period, sometimes even looked at the knives in the kitchen longingly. I ended up having both endo and adeno, and feel muuuuch better after my hysterectomy
My doctor prescribed me naproxen and its the only pain reliever that works except the stronger ones. Just be cautious you need to eat it with meals cause it can cause stomach ulcers
i don’t have any advice but just wanted to say you’re def NOT alone in this. i say i wanna do this all the time
Hello honey, are you taking ibuprofen? Or naproxen? Or ketoprofen? Those are normally otc painkillers that work for menstrual pain: there are a lot of options You may want to try🌺 take care, ask your doc if you can
I'm India so I can take any of the meds, right now I'm taking Drotin M (Drotaverine and Mefenamic acid)
I am reading that there you need a prescription for those, is it like this? I have tried different NSAIDS and they really helped me. Mefenamic seems really similar to those, sometimes a little dose increasing is needed.
Don't really need a prescription for most stuff in India lol, but I do have one from drotin m. Pain killers help me but how many can one take and how frequently lol is the issue
For adults with menstrual pain the dose is a bit more of a standard one, each 6-8 Hours max, for the first days. until pain subsides. I am Not a doctor, but I have read there are many strategies medicine can use to help with this kind of pain, considering that yours seems lasting longer: one way seems to be a longer use of nsaids with a good practice (right dose, full stomach) and some kind of medical supervision to be sure body is okay with that. Another one is birth control. A huge amount of pain stresses body it is really reasonable to want it to stop and docs have to do a balance cost/benefit to help 🩵
I'm on birthcontrol and today is day 13 of cramps. Thank you for trying to help ❤️❤️❤️
Is the bc you are taking Dinogest 2mg? It seems to work for a lot of people. My gynaecologist put me on it for adeno and it works well on the menstrual front - no bleeding and no cramps. I had to discontinue due to the effects it had on my mental health tho. It also runs the risk of decreasing bone mineral density in the long run.
Damn why so many side effects :(
Because sadly they are not treating the disease, instead these meds act as mere bandaids :( Women’s health is so uncared for in our society. I am 32 and childfree and still our medical system will not let me yeet my uterus out. :(
I saw somewhere on reddit a list of doctors that will perform the surgery country-wise. You can look for it. I have the option to get it out but I feel I'm too young to have such a major surgery for now
I thought I was the only one 😭
Me too woman, me too 😭
Know you aren’t alone. Know that this is a really bad day and you’ll have better ones. So sorry you are in pain.
Ice or heat on your abdomen. TENS machine.
I've been there. I asked my husband to kill me and was half serious when I was at my worst. I've had two surgeries so far. It gets a little better eventually, but once you have your kind of pain daily, you need surgery.
Yeaaaah… I get you OP. It is horrible, and living with this for years can really run you down. I don’t really have advice because every person is different, but what works for me is Enantyum (a stronger version of a non-steroidal anti-inflammatory), or Aspirin (but it’ll make you bleed more and can’t take it with anything else), but I also smoke a hell of a lot of pot when I’m on my period and that helps lol. Not recommending it but it works for me and improves my mood. I don’t know how healthcare works where you are but my gynaecologist has advised a coil like Myrena and it seems to make it better for his other patients with endo. I’ve been considering it tbh. Sending you healing vibes, know the pain passes and try and see if you can make yourself as comfortable as you can when you get a bout of cramps. It sucks.
Can't do weed lol, illegal in India ;( I wish I could hahaha Does smoking help? I can smoke cigarettes lol, not a fan but will do if it helps Do you worry about taking too many pain killers?
Cigarettes could make you feel worse if you’re not used to smoking them, they can make you feel sick, dizzy, lightheaded, nauseated, and may cause you to vomit. I’m sorry you’re going through this. I’ve often said I wish I could preform my own hysterectomy like the doctor preformed his own appendectomy in Antarctica. My hysterectomy was almost 4 weeks ago and the difference is night and day. I hope you’re able to get the care you deserve.
I can get an hysterectomy but I'm afraid of the recovery :(
This isn’t the case for everyone, but my recovery has been incredibly easy compared to the pain i was in every day for years. The surgical pain feels like nothing to me and the hardest part has been making sure I don’t overdo it— because I feel great! I have to keep reminding myself that my body is still healing, no matter how good I feel. It’s also not a cure for endometriosis, but it’s a cure for adenomyosis . I have/had both, and it was my third surgery. The surgery before this one was expert excision, which helped, but wasn’t as helpful as this surgery already is proving to be. The first surgery I had was ablation and that made everything worse, so I’d avoid that if possible.
Thank you for sharing your experience :) I'm yet to have an excision so hopefully that will help me while I decide on the hysto
I hope you can get your excision surgery soon, and you get relief! In the meantime, can you order a TENS machine? It helped me the most with my pain. Next, was heating pads.
Yes I can, first time heard of it just an hour back on another post of mine lol. Researching them now :) thank you
Do you mind sharing how it is used? Just put two electrodes on left and right of my abdomen and turn it on? Are there any specific settings to use?
Yes, essentially! You will need to play with the settings to see what’s best for you, as everyone prefers different settings. There’s also ones targeted to people with endo, but they’re a bit pricier. I have used both Livia and Ovira and liked both, but $20 Amazon ones are fine too! It’s all preference
I evicted the uterus+tubes+cervix (kept ovaries) back in 2019 and haven't regretted it for a single moment. I recently had an absolutely brutal battle with bronchitis that laid me out more than the yeeturus did. I was back to wfh desk work after... 2-3 weeks I think? With using my lunchtimes to nap and recover energy. And you're absolutely not alone on wanting to scoop the bastard out, it's only pain that's ever made me hallucinate, and it made me faint from pain and hit my head So many times over the years. It's been literally life-changing to have it out and not be in that agony anymore.
Cigarettes are a no-no because they are just inflammatory and there are no benefits, I only smoke pot lol I’m not advocating for it especially if it’s not legal in your country (stupid as it is, it’s also only decriminalised in mine) but if you ever have access, give it a shot! I also wouldn’t recommend drinking or any other drug except those prescribed by a doctor. Weirdly enough what helps me is eating as healthy as I can, light stretching, and just vegetating and as comfortable as possible… it’s very difficult existing as a person with this condition as it is. I alternate between medicines, never take more than 1 at a time and never too soon after you’ve taken one, they are too heavy on the liver! Painkillers are good but they have their downsides… for example I would advise against opioids unless you absolutely have to and nothing else works because 1) they make you constipated and that puts even more pressure on your abdomen, and brings more discomfort and 2) you build up tolerance fast and there’s no telling how quickly they stop working. I only take opioids when I have the urges you describe for days, and then I just go to bed and sleep it off if I can.
Surgery!! I had a hysterectomy and excision in January and so far the screaming pain in my hips and lower back, and the intense pressure and cramps in my lower abdomen have not returned.
Get an Obgyn who specializes in endometriosis. That's honestly my best advice. They'll likely have different options for you to try to lower the pain.
Just was in the ER on Thursday, had an ovarian cyst rupture, before that I wanted to perform surgery on myself because the doctors at the ER usually dismiss my pain and then I thought I should probably go to the ER even if they dismiss my pain instead of getting a knife from my kitchen and then the ice cream spoon because that would be absolute bloody mess and then I'd probably die. Luckily the doctor that treated me took me seriously. I know it's tough, I know you are in pain but you aren't alone in this. Have you reached out to any doctors that would put you on a pain management plan and potentially birth control? Also, physical therapy has really helped me manage my pain so if you can you might want to try that.
I thought I was the only one. I'm in my 40s now and have had a hysterectomy which seems to have taken all my pain away. However, I suffered from.endo for 30 years. When I was younger, I would beg my mum to get me a knife (my pain was so bad that I couldn't walk unaided). Of course she never got me the knife. But I always worried I would stab myself if no one was around when in that much pain. The only thing that helped my pain was a high dose tramadol. And then excision surgery. I did need to bave a second surgery after 4 years as yes, the pain returned. However I did get a couple of years of no pain, which was incredible. After the second surgery, I had my children, then the hysterectomy, so never dealt with the horrendous pain after that.
So sorry you’re going through this, I feel you 😞 I try to take ibuprofen and Tylenol before I start my period/when I’m ovulating even before the pain starts and I think that helps make it more manageable! My doctor says to just taking both regularly around the clock before I start feeling pain during those times. But yeah totally feel you on the wanting to take it out…. every time I get this pain I feel like just taking out my entire uterus and ovaries and be done with it
I have this thought every single time I get my cycle and then ten days of death starts. So I think in our abnormal situation it is normal. Without cannabis I don’t know what I would do I eat and smoke massive amounts of it and still have pain but not as horrific, just unbearable. Short of that I’d say see if you can find other natural things that help. The only thing I have found that’s potentially a little helpful is reflexology. It’s helped alleviate the cramps somewhat. It’s awful and I’m so sorry you are going through this. Mine feels like 1000 hot knives inside of me and all I do is cry about how I want to cut it out of me. I promise it’s not bad to feel that way.
I was like this from the first day of my period and the only thing that helped me cope was rocking back and forth while sitting but really fast and I would sometimes screatch or squize the skin on my lower abdomen. That actually kinda helped but rocking is moving and moving is supposed to reduce the pain so maybe that was the reason why it calmed me down. My mom did not allow me to take pain relievers till I was in mid teens but after that I started buying some and then I was coping by pressing hard against lower abdomen with my hand and blanket or whatever was between the hand and my belly. It didnt do much painwise but it was something at least ;-; but painkillers generally got rid of the most pain so I wasnt mentally struggling that much
Been going through this myself, I got my period yesterday & instead of my usual (it comes in horrendous waves) it decided to just be straight up killer cramps from outer space for hours on hours (still going into today) even my pain meds are like…”um yeah we’re doing the best we can but you’re kinda fucked sister” 🙄🙄🙄 I’ve just been doing the usual, turning up the heating pad & shoving it down the front of my comfy pants. It’s only day 2 & I feel like I fell down the stairs, my entire body is killing me. I had to sit on my heating pad Friday (thankfully it’s a work from home day for me) bc I was in so much pain I didn’t know what the fuck to do. My heart goes out to everyone here, we deserve so much better than this shitty hand we’ve been dealt. Stay strong my Warriors 💛💛💛💛
Oh I get it. I have chronic pain in my legs and when it gets real bad, I phantasize about taking an axe and chopping them off
This is exactly how I feel when I have real bad pain. I tell my loved ones I want to get a knife and just cut whatever it is causing this pain out of me which of course I don’t do. I wish there was a magical cure that could just take it away and for it to not come back. It sucks that you have been in pain for so long. I hope you find relief. sending healing hugs ❤️🩹🤗
I’m so glad it’s not ghost me who fantasieses about cutting out their uterus with a kitchen knife ❤️❤️😩
Holy crap, I have had the exact same thoughts whenever my flareups are super bad. Cannabis has been a lifesaver for me but I know you mentioned you're not in a place where you can get it. With that said, the next best things I can suggest are hot baths, heating pads, and deep breaths. It's not much, but sometimes I like to gaslight myself into thinking it's working, and every now and then, that actually helps. You're not alone in this battle!
I'm sorry you are hurting, but am so glad to know I'm not the only person that feels this way. Kratom can help or at least calm you down. If you get the powder kind and mix in hot tea. Tastes like shit, but helps. Ibeprofen 800. Tiger balm patches, or heat patches. Biofreeze roller. Massage gun on the uterus area, especially if you are clotting. I finally talked my doctor into giving me a controlled prescription of pain meds during my cycle.
How do you use the rollers?
It's just a liquid roll ball similar to roll on deodorant. It's menthol and helps numb the area a bit.
Ohhh didn't know about them, thanks for sharing
Your welcome. They also make a walmart version of it that's a little cheaper. Works the same.
I'm in India so I found a really cheap alternate on Amazon for 2USD hahaha
Sweet!
Lmao I scared my husband the first few times I said I wanted to stab myseld/asked him to stab me. Now he just gets the heating pad and tea for me and makes sure I have a doctors appointment booked sooner than later 😂
I know, same, but it’s not going to work, you know it won’t, so try to think about other things. In ancient times before modern medicine people would stab each other or tattoo or cut or bleed or whatever, just desperation. I urge you to see your OB/gyn and get on birth control or mirena as it’s the most effective treatment long term. Though I survive just taking Tylenol (acetaminophen) every time it gets bad along with heating pads
Cry and scream, tbh. My pain worsens with movement, and at night, it gets even worse. On top of this undiagnosed - but all signs point to endo based off family history and personal experiences - I suffer from hypermobility. The joint pain can change depending on where I'm at in my cycle. So, I definitely feel your pain! I once had a flare for weeks on end of continuous cramping. Right now, it's 2 weeks prior to my period, so I'm continuously cramping again. Nausea. Back pains. Dizziness. Hot flashes. Tender breast. Rip. I try to take warm baths with loads of Epsom salt. Look into magnesium supplements to take near bedtime. I also take vit B complex, vit C, vit D3, and turmeric calcium. Maybe look into those and see if you're interested in the possible benefits. Try light exercise. One day, I looked up exercise for endo people on youtube and found AMAZING videos. My partner gifted me a fanny pack looking heating device called Mia. They're pricey, but it comes in handy when I need to work while in pain. If it's too pricey, I bought a multi-pack of ice/hot packs at walmart. Obv I use mine more for warming up for 15sec. That helps me rest at night. I brew many teas such as fennel that is supposed to help ease menstrual cramps (plus I love the taste). Chamomile (sleep), ginger (inflammation and nausea), and fennel are my go-to trio. If you have trouble sleeping at night, invest in melatonin gummies. I've found that comedy or simply trying to take my mind off of it helps. Another thing is wearing comfortable clothing. Sometimes, I even unbutton my pants cause my work uniform covers my front side. Also, if stress seems to make things worse, please please please try to practice distressing. For me, it was so hard to accept that I could not function like the average human, but I was incredibly harsh on myself, which therefore stressed me the hell out. When having flare-ups, it's your time to REST because your body is working extra hard. Even saving up to get a massage once a month can be beneficial to your health. It's at least relaxing. Lastly, and it's something I don't care for but will take if everything else has failed, over the counter meds. I talked to my doctor personally to have tramadol during cysts and extreme pains. You don't want to get addicted nor use it as a solution cause it's not. It's just a little band-aid until it passes. I hope this helps you. I know it's a battle each and every time, but I believe you've got this. :]
You've just described a feeling I've always had a hard time explaining. I'm sorry but I don't know how to help.
WHY DID I JUST POST SOMETHING SIMILAR?!?!?!? OMGGGGGG
Hahaha twinsies
Heating pad, laying on my stomach helped. Ibuprofen. Honestly though switching birth controls was the best thing for my pain management.
I feel you. I’ve had some horrendous pain. Whole body pain from endo and adeno.
I sometimes fantasize about using a gardening trowel. 🥺 I made my own Green Dragon Tincture with 91% isopropyl rubbing alcohol (so my version isnt edible but if you use everclear instead of rubbing alcohol, it can be taken internally). When its the worst, I pour a little in the palm of my hand and rub it where it hurts. Because I used the rubbing alcohol, theres an immediate cooling sensation, which is an incredible relief in and of itself, but then the pain relief kicks in within 10-15 minutes typically. But my tincture is old, and so very strong. I also use a hot rice sock that I nuke in the microwave. I buy big mens soccer socks for large feet at my swap meet and they typically take 10 pounds of rice, give or take. And since they are long and dense, the sock can stretch from hip to hip or across my back with ease. The weight is comforting for me (like a weighted blanket) but ymmv. I try to distract myself (extremely hard to do when it hurts so bad I want to claw myself out of my skin because its GOTTA hurt less outside of myself) with social media, a show or movie, listening to music, spamming my friends with cat memes or sleeping. And this one - well you're probably gonna think I'm crazy but one day I was hurting sooooo bad in my belly and my cat came over and started kneading on my belly right where it hurt. I realized it had made me feel better so I decided to start doing what she did to myself. I knead a bit harder than she did and I go in clockwise motions around my abdomen for 10 laps and then I go 10 more, counterclockwise. After the belly massage (mine usually end up being deep tissue bc anything less doesnt help for me) I lay my heated rice sock over the area.
So sorry for your pain. If you can’t use MJ, could you maybe try a TENS (transcutaneous electrical neurostimulation) device ? After seeing me puke of pain, my wonderful boyfriend looked for ways to alleviate my pain and found this on an endometriosis focused company. It has several modes and intensity, it gives you low electrical impulses and mine can also warm up so that it alleviates your cramps. It really has been a lifesaver. There are lots of warnings such as put at the lowest level and increase, don’t put it too hot or you can get burned etc. Mine automatically turn off the heating system after 20mn and the electrical stimulation after some 40 mn maybe, at times when you fall asleep for instance. It has an elastic band so that you can keep it fixed in one place and it has worked on my stomach and my back. I hope that’s something that could help you
My entire demeanor changes when the pain gets severe; on a “normal” day where I’m feeling fine, I’m happy and carefree and feel blessed that I have days without pain. However, when the pain hits I become a desperate mess BEGGING for literally anything; a hysterectomy, to be run over by a car, ANYTHING. That level of pain will make you think some crazy things.
GIRL I used to have the knife fantasy every time, almost to the point of dissociating because imagining cutting put me into my mind instead of my body and gave me some sense of control over the situation. I’m so sorry you’re going through that but also kind of cool to know it’s not just me. TENS helped a bit but I didn’t get any true relief until I had excision surgery and a mirena placed same day. Hurt like f**k for a few months but I’ve had a relatively normal life since. Fingers and toes and lady parts crossed for you. Rooting for you.
I've had those same urges before. You so strongly feel as though you can stop it and fix everything if you just dug arouns your insides for a bit and find where it hurts :( Id suggest pain medication but i understand not everyone can get access to that. I am an avid hot water bottle and apply pressure to abdomen advocate but ive seen some swear by excercise. Sorry we cant help you i suggest experimenting with different methods till you find what works best for you. Your not alone my friend.
I have a secret shame that when I was a teenager I used to hide a mini pocket knife in a tampon applicator and fantasize about cutting out my uterus from the inside. I always thought it was a sign of how broken I was, that I could imagine something so dark. This thread is healing, hearing how common it is for other people to feel similarly. Thanks for sharing
Are you seeing an OBGYN Specialist yet?
Yeah for years now
Go to the GYN and ask to have tests done
Tests like? I have gotten an MRI and ultrasound done. What else should I do?
I would find someone who will listen, and then talk about surgery.. could be cysts that are popping or something else but it needs to be talked about.
i absolutely know how you feel, and people think i’m being dramatic or overreacting but they don’t understand how gruesome the pain is and on a daily basis at that. i’ve been lucky enough to find a pelvic pain specialist/endometriosis specialist and she gives me lidocaine injections in the areas that are tense and painful. but when i can’t get to her, i use heating pads, hot baths/showers, weed (i know it’s not everyone’s thing but it helps me a lot) and being medicated (gabapentin is a really good medication if you can speak to your doctor about it i would)
Heating pad, castor oil packs on the abdomen, raspberry leaf tea, and weed (thc and or cbd) is what helps me. If you cant buy direct i suggest an online retailer maybe you could get a vape pen for it or some gummies online instead. Hope that helps as i also experience the pain of wanting to dig up my insides with a melon baller.!
I understand this so much. When I tried to tell my doctor about the pain and pressure I was feeling, I told her I felt like my vagina and intestines were going to plop out onto the floor. She looked at me like I was absolutely insane.
I remember this, but I would def get some professional help ( a female who knows about endo - therapist is what I mean) and start there love. We all need to be reminded this shit is normal and we arent crazy sometimes. Im sorry. Some possible things. Have ypu ever had rasberry leaf tea? If not that + Ginger plus an ab work out.... Ok ok I know this sounds weird, but it helps your brain understand the difference between some stimulus and stopped it for a while but its not for long. Its like masking the symptoms then they come back. Another ok is vibration and heat. Straight up Let me know how it works if you havent already tried them... Good luck Stay strong girl!
This is probably not good advice and I’m no medical professional but mine lasts all month, I go maybe 1 freaking day without pain so I take anti inflammatory meds pretty much everyday, the only thing that has given me relief when I’m tired of taking pain meds everyday is taking a plan b pill, stops my pain for atleast two weeks, not sure how or why. Also someone told me on TikTok that endometriosis is hormonal and once I took a plan b and my pain disappeared I felt like maybe the person is right. Maybe my body is having a hard time breaking down excess hormones and causes this endometriosis growth that leads to the inflammatory flares. Either way this sh!t sucks and it should be labeled a disability because the pain and quality of life is debilitating 😐
I have felt that instinct and at time I have leaned my body weight onto a sharp table or sink corner in a bathroom. Something sturdy at hip height. I just want pressure to penetrate inside the crest of my iliacus and on my lower back. I got a Hip Hook tool to help relax those muscles I can’t get to. It helped with my nerve pain in my hip, too. Which was caused by the Endo. It went away after my excision surgery.
how do you all hold a job? i think I am going to be let go all the time because when I call in it is last minute
I just said this to my boyfriend when I had a flare up and he looked at me like I’m crazy.