I've unknowingly had endo for about 10 years, dismissed early on I just ignored the fact my periods sometimes felt like a miscarriage. About 3 years ago it got so bad I couldn't ignore it anymore and 2 years ago I left work. In these two years I've tried everything I could think of to change it. I can't change it, but I did learn some small things to manage it, not including medical care and I just thought I'd share...• A prepacked hospital bag 1x 2 days easy carry and 1x for a week
• Handbag- daily panty liners and spare knickers, portable first aid kit with all I use in it when its bad
• meal prep and my bedroom reorganised for having everything I need next to the bed when immobile, including as much entertainment as possible
• a spare key in case someone needs to get in to help me
• and sheer will...
Sometimes I prepare everything and it still isn't enough. I dont know if this will help anyone and I'm sure people do these and more but just in case it might help someone.
And please do share anything you've tried to help cope or deal with symptoms or even ideas you would like to try, I'd love to hear it.
I often get depressed that this is progressive, misunderstood and incurable. But any increase of quality of life gives me hope even if small.
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Amazing ideas 💖 thank youI had to hold back tears reading the meal drinks prescriptions when they know full well I've literally starved when I cant prepare any food... Often you have to already know and specifically ask for the help with the NHS.
I'm so happy I could help! Tbh the calorie drinks are not routinely prescribed so I don't think a lot of GPs etc know they are a thing, this is why it's so great to talk to other patients.
This is a link to the brand I got through the NHS - it's designed for crohn's patients so super gentle and easy to absorb. The flavours are pretty rank but I found the nicest one was berry flavour. Orange is a big no, trust me 💀 nutricia.co.uk/hcp/pim-prod...
Also, Huel sent me a bunch of chocolate flavoured drinks by mistake which I can't have due to allergies and they said I can keep them for free. If you or anyone reading this wants me to send over a few for you to try I would be happy to! My personal favourite flavour of theirs is vanilla though because when you feel sick you don't want anything too wild.
Another thing i forgot to to mention- request for an OT assessment through your GP. They can set you up with walking aids for bad pain days, and hand rails in your home if you need them. Also they can recommend other small things you can do to help during severe pain.
Were these drinks prescribed to you because you have struggled to make yourself food at times or is it for other problems or both? Also my GP only sees me when I can walk so I really don't think they believe me most of the time. Of course I dont go anywhere when I cant. Hopefully I can get an OT assessment.
Yes it was because I was too weak/in too much pain to cook and also because I was too sick to eat in general and was losing weight. But struggling to make yourself food is enough of a reason and you are def entitled to a prescription!
If your GP refuses to prescribe, there are a few things you can do. Firstly, switch GP and try someone else who might be more sympathetic. Check out GP profiles on the practice's website and look for someone with a special interest in women's health/gynaecology or pain management as they will likely have more experience with patients in our shoes.
If you can't change doctor or you run into this issue again, tell them to make a note in your medical records that you asked for this prescription and they denied it. This can be used as evidence against them later on if you make a formal complaint, so they normally get scared and make the prescription 😂
If they also refuse to do that (very rare) write to the practice manager documenting that you asked and they denied it. All letters have to be scanned onto your file by law so you will get evidence on there if you want to make a complaint later. But like I said this rarely happens!
It's so annoying that on top of navigating this illness we have to navigate dealing with unsympathetic medical professionals who block treatment for us! But there are always ways around.
Tbh I think I have asked before and they denied it, and I have been saying for two years I've literally starved because I couldn't have access to any way to get food Thank you 🥲
That is messed up I'm so sorry! You def have grounds to make a compliant via PALS about that because it's straight up medical neglect they did that to you!
Theres more than that, usually when these things were happening I was too ill to complain. The worst of times tbh. I have a better gp now but my past notes saying over and over theres nothing wrong with me doesn't help. I am working myself to ask again for all the things in my backlog and ready to complain at this stage in my life. There was an occasion I called my gp when I was having an allergic reaction (I didnt know at the time) before ending up in hospital, with very serious symptoms... you don't wanna know tbh... and luckily the hospital took me very seriously and actually saved my life. Anyway in that phone call my gp literally called me a drama queen. Another I dont see anymore. So in time, yes I'll absolutely complain. I think its just the mental distress of it is too much in the moment when you're trying to get better.
Eventually, it'll all get sorted.
But these experiences I've realised are far too common. There is no wonder they call it Endo Warriors.
Oh my god that is absolutely horrendous, I'm so sorry you went through that! That whole view of women being 'dramatic' about their symptoms is pure medical misogyny and it is so deeply dangerous and at times literally life threatening!
I totally get what you mean- I am also so exhausted and drained by managing symptoms/navigating this whole situation that I find it overwhelming to make complaints too. I literally have an email in my drafts rn that I wrote but was too scared to send! We have our whole lives to sort back through this stuff when we are ready. I just wanted you to know that that treatment is not ok, and that there are tools to help you complain whenever you are ready. right now, taking care of yourself is the most important thing x
Imma find this cbd thing my friend discovered recently and send all the details here so others can find it too, the ones I've had so far aren't the best apparently and they've found much better for much cheaper 🙂
Another American one for oils, also legal, your mobile data probably won't work with this site but WiFi will.
These should give you an idea of the products so you can explore other sites if you wanted to and know what sort of thing you're looking for, there's an ocean of cbd businesses lol can be a bit overwhelming to choose from
Sorry you went through that, hopefully one day women will be taken seriously in these struggles.The oil is based on my concentration im not sure exactly but the higher the stronger. You just put a few drops under your tongue and hold it there for a bit.
I've also just topically applied it to strengthen the cbd balm I have and I've rubbed it on my foot soles as its very absorbant skin.
I think it gets into your blood stream but I'm not sure lol! It really helps reduce the inflammation for me, especially long term daily use. I usually find it at discounted prices at holland&barrets or on first time buys on online cbd shops as it can be expensive. You can also get cbd 'tea's which is a bit cheaper than the oil and smokable, it won't get you high but it'll make you slightly sleepy. It helped me eat when meds gave me gastritis. But I'm an ex smoker so I avoid any smoking now 😊
What made my life easier is a vegan diet. Red meat is super inflammatory as is dairy. This was the first big thing, I recently also started gluten free. These are early days of gf, but I already see a difference in bloating. Life just got a little bit better. I also stoped any caffeine - now I take only decaf coffee and decaf green tea (which apparently also is super helpful), well and all the herbal teas. I read a small study about seaweed and pineapple reducing the symptoms as well, so I incorporated them in my daily routine (pineapple in smoothies and seaweed in veggie broth). I am not sure which thing exactly made it for me, but I feel so much better now. I think it also has a psychological factor, as I feel more in control of it all.Oh! And the newest addition to my anti-endo arsenal is a SlimPal. It is a small, portable, rechargeable heating pad. I just ordered it a week or so ago and it is already my favourite thing.
Hey 🙂 I was vegan for 5 years and am already on the journey transitioning back again, (nearly all the way atm) but because of allergies and unemployment I can do it to the extent of affordability. I never eat red meat and dairy anyway, just far too inflammatory and bad for so much lol
Food is always a top priority for me in terms of health. I've always loved herbal teas and I have used supplements for a long time before I got ill.I used to run, do yoga, dance, pilates and strength training all of which Ive had to learn with a lot of heartbreak I cant really do any anymore. My doc recommended swimming but I would struggle to travel there, I will if I can walk there lol. I still try to do yoga but its so painful and the doc said dont push past pain, so I keep trying things and being frustrated at having to lower the intensity level everytime... I probably shouldve mentioned all this in the post but I've kind of trained myself out of talking about it.
I think too many people have not wanted to hear it from me so I've learned to keep it to myself.
Its a slow and painful process but one day, hopefully something will click. I really believe at this point the best hope for me is physiotherapy types of exercises specifically designed for tendons, joints, nerves and all of that stuff at this point...
But yeah I totally agree a plant based whole foods diet or as close as you can get to it is the best thing for most health problems, especially inflammatory. I try to tell loved ones all the time but they don't listen lol
My illness was actually caused by a medical professional where I'm only seeing the full effects/consequences a decade later, sometimes I think maybe if it was my own body doing it I would've had more joy in my lifestyle habits... but I try not to think about it too much.
Thank you so much for your message and advice, I really appreciate it but sadly I'm already with you on those ones! 💕💖
Oh dear, I am so sorry to hear about your struggles. I am here if you ever need to vent or just a listening ear, ok?I also thought that whole foods are expensive until I found a way to get them cheap - I bulk buy dried lentils, beans and peas. They cost pennies and get themselves ready in a slow cooker. It was a game changer for me. Rather than gluten free bread, I get oats for breakfast. A lazy one without even cooking. It all adds up and makes it affordable.
I ma sorry I couldn't add anything extra to the conversation, you are obviously way more experienced with this all than I am. I will keep looking though and keep you posted. 🤍
I'm sorry, I didn't mean to make you feel like that. Ofc you were adding to it, I shouldve said more in the post tbh its my bad. I agree the best we can do for ourselves is diet.
I wrote something else but my memory has been funny from pain meds this week so ill leave it out.
Sorry if I made you feel a type of way, maybe I'm off today. Have a good night x
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I'm sorry, I didn't mean to make you feel like that. Ofc you were adding to it, I shouldve said more in the post tbh its my bad. I agree the best we can do for ourselves is diet.
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