Has anyone been in so much pain that they... - Endometriosis UK

Endometriosis UK

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Has anyone been in so much pain that they find it distressing?

Hobi profile image
Hobi

I'm having a really bad endometriosis flare up at the moment and the pain is becoming so severe that I'm getting distressed.

I've taken pain meds, I've got a tens machine on, I've used aromatherapy and haven't done much today but the pain is still unbearable.

Has anyone else experienced this? And if so, what were some things that helped?

I'm at a bit of a loss of what to do

Thanks x

22 Replies

Hello. As I’m typing this, I’m very very distressed. My pain is getting gradually worse and no matter what I try, it doesn’t help.

Tens machine was a good choice! So well done for getting that.

Just letting you know you aren’t alone. Unfortunately I can’t advise you of anything that’s helped as I’m currently on a journey to find something that works for me.

Wishing you the best of luck.

Hobi profile image
Hobi in reply to Hayayaya

Thank you for the reply! It's honestly so nice to see that there are other people in my position. When I look at social media, it feels like so many people have it figured out and I honestly just feel so lost and unable to cope.Every time I talk to my GP and ask for ways to manage the symptoms, they just say there's nothing more they can do and I just have to wait for surgery.

I'd understand if you don't want to but maybe we could chat and be a good support for each other?

Hayayaya profile image
Hayayaya in reply to Hobi

Hi! Yes of course. You’ll have to send me a message tho because I don’t know how to do that. I’m new here and don’t really know how to use this properly 🤣

Also my GP is exact the same!!

Demand stronger pain killers from that useless Dr.

Hobi profile image
Hobi in reply to andrehypnotic

My doctor isn't useless, we've had lengthy conversations about pain management and tried an assortment of pain relief combinations. But we've gotten to a point now where we have tried everything and there is no stronger pain relief they can offer me without me being asleep all the time (which I declined because what kind of a life is that). I was just expressing my frustration that there is nothing else to try and that routine surgeries still aren't going ahead where I live so I don't know how long I'll be waiting.

I’m having one this week tooBleeding from both passages as well

I got stronger pain killers from the doctor and use a heat pad. But rest is the only thing but still feel rubbish.

I’m also waiting for surgery and think it’s going to be ages, so depressing 😞

Hope u yr ok xx

Hello, saw your message and had to reply. Don’t feel you’re alone. And don’t feel everyone else has it figured out. They don’t. No one has. Appearances can be hugely deceptive. Have a look at my profile. I can tell you I’ve tried to climb bedroom walls to get away from my pain, actually torn clumps of my hair out through pain, fainted numerous times on numerous bathroom floors from pain…you get the picture. I’m not preaching but switching up your diet WILL help. Lots of books out there on that. A thing called a Livia device helped me but it’s not cheap. No meds worked for me, not even liquid morphine and I’ve tried every painkiller available. In the end I took paracetamol and ibruprofen at mixed intervals and this seemed best. Everyone’s different. Be kinder to yourself. Acceptance of endometriosis is key. You’re body’s beating you up enough without you giving your mind a bashing too. Things WILL get better but you need the right advice, the right treatment and the right surgeon. You’re on a rollercoaster endo journey now, lots of ups and downs. But. Lots of people (if only) on here to support you and ride along and I’m just one. Sending a hug. Nina.

Hobi profile image
Hobi in reply to Brambledoggy

I have changed up my diet and this has helped massively with the bloating but not really the pain. I also have a Livia device, it's great but it can only do so much.. my pain is quite widespread so while it helps in the location of the patches, I still feel pain in the other areas.

I know what you mean about strong pain killers not working, I've tried so many different combinations and none seem to help when the pain gets really bad.

Thank you for making me feel less alone though, being newly diagnosed is daunting and can make you feel quite isolated.

I'm glad I found this community because it's helpful to talk to people who understand how debilitating this condition can be.

Thank you again for your reply x

Brambledoggy profile image
Brambledoggy in reply to Hobi

You might find that if and when a decent qualified and skilled surgeon cuts out ALL your lesions by deep excision surgery your pain will eventually subside. The pill only masks symptoms though can be very effective at managing pain for some women. It’s a balancing act but surgery really the only way to go. I’m 50, only diagnosed at 35 despite suffering horrendously since 17. I wish I’d had it all removed at a VERY early age but I didn’t know. I didn’t have a clue what was wrong with me. I do know. And if I can help others, I always will. Lots of support for you out there, the trick is knowing where and when to look through the “noise” and get the correct advice, management, surgery and ultimately and hopefully some good results. X

Hi

Endo is painful every day - are you sick where you have to remain close to a bowl etc.

GP can only give advice - Know its hard love try to do something that does not cause

more a walk,small trips outside- being alone with the pain is bad.

Have you a partner- try to keep mobile - looks like you have tried different methods

of pain relief -natural items better for you than tablets.

My journey with this affect not good but bearable - pain emotion affects us all

especially now.

Look after yourself - find something to distract you during the worse times

which hopefully help- try looking into more herbal books online with things

that you can use.

Lots of kind wishes

I am so very sorry that this is unbearable pain for you right now. Sending love.

Call your GP surgery now as this is becoming an emergency!

The box breath - is going to help straight away - look on You Tube and have a go.

Sending love and all the best - let us know how you get on x x x x

Hobi profile image
Hobi in reply to 635703

Thank you for your reply! I'll definitely have a look at the box breath x

I could not walk past this post. No one has it figured out, and you are not alone in having awful days, it does not help the pain sadly but I hope it helps and gives that mental strength to deal with it!

I have been doing yoga before a lot, but weren’t able to do much of it or any exercise in the last few months, but I have realised the state of mind I get with yoga helps me cope with it, is I’ve started to try meditating with Headspace and there is even a module on pain management specifically. I understand meditation is not for everyone, you could also try walking, crafts or any other activity that gives you that relaxed and focused kind in the moments when you feel better and it will help when you don’t feel so good.

I’d like to learn more about how diet can affect it but I’m only starting to read up on it now, so cannot recommend much myself. Hopefully someone more knowledgeable from comments above could share some specific books or resources.

Sending you many hugs 🤗

Hobi profile image
Hobi in reply to st07

Thank you for your suggestions. I've recently started doing meditation specifically for pain management but I can't say whether it's helping as I find it difficult to slow my mind down, I'll definitely keep trying though.

I have actually changed my diet a lot and this has helped massively with the bloating but not so much with the pain.

Do you have any suggestions for types of yoga or even videos to follow which would help? I've tried yoga in the past but I can find some positions quite uncomfortable, but maybe there are routines aimed specifically towards people with our condition?

Thanks x

635703 profile image
635703 in reply to Hobi

m.youtube.com/watch?v=6op_I...

There’s 5 videos x x x

Everybody is different and so finding what works for you is the best way. Lots of trial and error.....some days it’s great and others days but so much x

st07 profile image
st07 in reply to Hobi

Meditation is one of those things you won't know immediately if it is helping but will most certainly pay back over the long run, I hope it will work for you!

It's good to know about the diet, I am yet to try anything at all. I am a week post-surgery and now reflecting on my diet I realise it's the last two years of the most awful lifestyle I have ever had that coincided with worsening of my symptoms. Of course, it is never a guarantee these are related but motivates me to try, maybe pain when it comes will be as intense but there will be fewer flare ups? I'd love someone with experience with moving to such diets to give some feedback.. I have been eyeing up some books on endometriosis and diet, but have not bought them yet.

When it comes to yoga, I have noticed with my pain mostly focussing around ovaries it's deeper involving pelvis that I am not always comfortable doing, but I just skip those. Recently, I have not been able to summon any energy to do even simple sequences though, but on better days I have been turning a lot to Yin yoga (it's deep stretching with some use of muscles), but especially would recommend trying restorative yoga. This one focuses on releasing tension and stretching fascias which is the casing around muscles, it's very low activity: you are mostly on the mad propped by cushions and blankets stretching by being in a single pose for long periods of time, in this sense, it's like a good nap-type activity with some physical and mental benefits. It still is very strong when it comes to a stretch so I would say be gentle and start easy as you may not even notice it's a bit too much until you try and move after! I just tend to find those on youtube (have not found a good channel dedicated to this type yet), but if you are keen to try a class with a teacher I really recommend Kate Walker (katewalkeryoga.com/classes), I have done yoga with her both off and online and she is just such lovely and understanding person. She has pre-recorded restorative classes you could try (paid for) and also live restorative classes once a week, these ones are particularly good as she asks for the camera to be on and she does give you feedback on your postures and any recommendations if you are limited in any way. It takes a bit of getting used to having a camera on when working out at home but I think it's better value for money rather than doing something that you might be doing wrong or might be harming you. I have not yet tried any videos specific for endo but glad 635703 has shared some below, I will try those :)

Apologies for so much text!

Hobi profile image
Hobi in reply to st07

Thank you so much for all the information! At least I know where to start now

In terms of diet, I read up about anti-inflammatory foods and which foods are beneficial for endometriosis and which are recommended to avoid. Being a university student of a science subject, I was able to access academic research and there was some really insightful stuff! First of all, significantly increase your amount of antioxidants, and make sure you are eating a wide varieties of coloured fruits and vegetables (eat the rainbow as they say) Apparently, the brighter the colour, the more antioxidants. Try to eat a lot of iron from greens, rather than from red meat, and try to eat more omega 3. Obviously a great way to do this is by eating oily fish, I personally like flaxseed. I've read mixed things about flaxseed though, some research says that the high levels of phytoestrogen should be avoided but some research says the high levels of zinc and omega 3 make it beneficial. So, make up your own mind about that one.

Then we come on to triggers. Personally, mine are milk, white flour, garlic and tomatoes (that I'm aware of) but like any ibs, everyone's can be very different. I recommend keeping a food diary and writing down what you ate and how it made you feel, usually you begin to see a pattern form. Sometimes, if you're having trouble identifying a trigger, you can try eliminating a food for a couple of weeks and seeing how your body responds when you reintroduce it. Another way to go this is with guidance from a nutritionist or dietitian and trying the fodmap diet, which is a diagnostic tool and not a diet you should do forever.

I hope this helps, feel free to let me know if you have any questions xx

st07 profile image
st07 in reply to Hobi

Thanks Hobi these are all valid points! I haven’t yet discovered what my triggers are, but I have some prime suspects.

When it comes to keeping a food diary I found MySymptoms Food Diary app by skygazer labs very useful, I think I might have paid like £4 for it, but there is also a free version: you can log meals (including a library of ready made products you buy in the uk) and your symptoms (and create your own symptoms). It’s meant to overtime try and find a correlation between symptoms and foods but even without it I find it useful for keeping an organised log, hope one day it’ll help me figure it out :)

Just sending good thoughts your way and letting you know you’re not alone. I get unbearable pain during my period. I’m past my period for this month now but I also have joint pain too from Sjögren’s syndrome so it’s like I never get a break from some type of pain. Right now it’s my feet and it was difficult to walk into work this morning. Since my body never gets a break I have to try harder to do things to help myself. The hard part sometimes is advocating for me. My husband has recently witnessed me writhing in pain so he is just starting to get it a little. But for years he was unsupportive and would just tell me to lose some weight and I’d feel better. Lol. As if! I just got a hot water bottle, a heating pad, and a tens and they do help. Ibuprofen and Tylenol. Rest. Next I’m going to try diet as another post suggested. I see a Nutritionist in June who specializes in helping folks with autoimmune issues. Fingers crossed (I’m worried she will tell me to give up wine lol. ) I had robotic davinci surgery to remove endo 7 years ago. With the best surgeon. But pain resumed within a month after surgery. I’m contemplating getting another surgery but it didn’t seem to help so I’m not sure what to do. So I’m willing to try the diet thing. Wish me luck. Again just wanted you to know you are not alone. Social media is not an accurate representation for the most part. But I know I can come on this site for folks who will tell it like it is. And it is a struggle BUT one we can get through with support and the right help. It is a journey for sure. Hang in there 💜

She might actually recommend getting rid of wine love, not to be a buzz kill lol I gave up all alcohol a few months ago when I saw it can aggrevate endo, I did notice I could only manage a couple and the next day it would cripple me worse than any hangover. So yeah, they may say to give up wine but I guess it would depend on if it actually effects you negatively xx

I know, it saddens me. Love my vino. But I also want to be better, so may need to dial it back first, then eliminate altogether. I think I will save a lot of money too😀

I was the same, I really enjoyed having a glass of wine at night after a long day. I usually had a full bottle every weekend lol but like you I just wanted to feel better so cut it out completely after a while. Xxx

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