My endo is back with a vengeance. I need more surgery but I am avoiding it. I used to be on 60 mg codeine but found it unbearable due to the side effects. It affected my cognitive ability which I need as I am a senior manager. I also have 2 children and most of the responsiblity within my house so don't have the luxury of rest when I feel dizzy etc.
I suffer with horrendous fatigue and hormonal migraines (I have PCOS which I'm not sure helps). I also have nerve damage in my back and have had back surgery, which at time contributes to my pain/fatigue.
I am vegan, have tried hot water bottles, baths, lesser painkillers etc. I am not sure if anyone has used or tried anything useful before I lose my sanity?
Thanks
D
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Hi D, you poor thing! I'm suffering with fatigue myself at the moment but just wanted to show some support as I really sympathise! It's so hard with kids, you have to force yourself to stay awake and then just get even more tired
🤯Is there anyone who can take the kids to give you a break sometimes? Is there a way you could get a smaller dose of the painkiller so the side effects are less, even if it just takes the edge off? Or a different drug?
Is your diet ok? I know there are things which are inflammatory and can make things worse, there's a blog, ThisEndoLife and she has lots of great advice on diet, can't say mine is always great! I'm positive though that eating flax and other seeds has had a good effect for me. Different for everyone though isn't it. What about CBD? That's my next port of call I think.
Thanks for your reply, it is helpful. Sorry to hear you are suffering too.
I might talk to the doctor about different painkillers, I will do some research first. Just need ones with less side effects if that is possible.
Not really. My dad died last year and my mum isn't interested in the kids. My MIL has my son once a week whilst I work so generally won't do more than that. Our family won't have them even in a none covid world. My BIL is lazy and my sister doesn't like kids.
My husband just doesn't get my illness. He is 'tired too' and 'works hard'. I also work hard and have a lot of responsibility at work. He doesn't get that I am in pain 24 hours a day, that I don't sleep properly and that my energy is being sapped by my malfunctioning body. I do most the household work, walk our dog my lunch (as I am working from home). I have also been doing another qualification n my spare time (work paid so it was daft to turn down).
My diet is generally good having changed it over the years, but I will have a look. Think I need to give up caffeine though!
I have been thinking about CBD, a few people have mentioned it.
Hey D appreciate you sound as though you have a very busy lifestyle. Do you make time/ have time to get out for walks at the moment? Exercising kicks your pain receptors in and also provides energy. I find it really helps me!
Sorry you’re going through so much. Have you tried Nefopam? It’s not widely used as it’s more expensive than the others, but it’s non opiate so may not have the same side effects.Not sure if you’ve tried anything for nerve pain, I’m currently taking Amitriptyline and Pregabalin. Only been on Pregabalin a couple of weeks, but might be helping.
Sorry you're in pain and in such a difficult position. It really sounds like you're carrying your whole world on your shoulders, even without endo it would have been a lot.
In terms of food, for me gluten, refined sugar and alcohol cause more pain.
It might not be for you but I really recommend therapy. There is evidence that endo is closely associated with stress, and that chronic pain affects you emotionally and vice versa. The pain clinic at Guy's which I was referred too as part of the endo treatment is now sending people to a psychologist as a matter of course.
There is also a growing thinking amongst holistic therapists who give complementary therapy to endo that it is linked with emotional issues. I always felt the idea of therapy as something that is good for other people but not for me, but when I decided to try everything I can to minimise the pain I was ready to take that on too. I found a therapist that was right for me - both in methodology (combination of physical aspect such as feminine yoga and approaching issues through what your body is feeling) and personality. A year down the line, it changed the pain but more importantly it changed the way I think and behave around it.
I'm going to be really harsh, especially as I don't know you. Sometimes it helps seeing how your situation is understood by others. You are doing way too much and hold way too many responsibilities. I'm not blaming you, it's not your fault and there are necessities. But you're also only starting to admit to yourself that you're not in a position to hold the whole world, and that maybe you can't do it all even if it means missing on opportunities. And I'll also say, it might also be a good idea to have couple's therapy, as it sounds like your husband needs a good shake up if he can't see how you're suffering.
I hope this isn't making you feel worse. You (and most of us here) we're dealt a cruel hand with a complicated illness. You're obviously doing your best to not let it stop you - but maybe your body is saying you should stop for a minute, and listen. Big hugs.
Hi, thanks for your response. It is really helpful
Think we are similar for food, I already avoid gluten due to my lymphocytic collitis but refined sugar is harder lol.
I am really glad you are finding therapy useful. I have had a lot of stress over the last couple of years with 3 of my close family being diagnosed with terminal cancer including my dad who sadly passed away. Another family member also recently died.
I often recommend therapy in my job and deal with risk when people are unwell, so it is definitely something I see value in. It is also the reason I know I am burning out. It was never offered when I was under my gynae but I am debating asking to be referred back to him for treatment rather than suffering.
I did raise I was having a hard time with my husband and he said that it only me that is allowed to be sad. His dad died when he was younger so he 'knows how I feel'. He has apologised for this.
I know I hold a lot of responsibility. It is something I have also tried to talk to my husband about. It sounds daft but I do all the school stuff for the kids, pay nursery/bills etc too. If I take time for me it ends up like a competition. Or if I get a bath in the day, he wants a bath etc. We have had it out so many times and he thinks I am unreasonable.
Hi D, sorry to hear that you are in pain and fatigued all the time. I was reading you comments and reducing caffeine does help a lot especially as impacts hormones.
Saw that you are vegan too. Have you had your iron levels checked? When i was a veggie i had issues with my low levels of iron, vit d and vits b. All contribute to normal level of energy. Worth checking and supplementing as it changed my life and level of energy.
I hear you, our demanding jobs take so much energy and on top of that dogs partners and for you kids as well but without energy to cope with all this is tough to get through
Google “Livia Device” and see if you can get hold of one. I find it incredibly useful for my horrendous cramps and you can walk round with it on. It’s like a tens machine but specifically for period pain and endo. Not sure if they have a U.K. website, I got mine from USA and then was walloped with a big customs charge. Hope this helps if only a little.
Hi, worth asking the GP for Etoricoxib (its a painkiller for rheumatoid arthritis) I was given it for endo and it works really well. It needs to be taken with omeprazole to protect the stomach. It works really well and I've had no side effects. It can be taken every day.
Some people find a tens machine useful.
I also have done a lot of research on natural things that work. I can't post links to other websites publicly as it's against Endo UK rules. Happy to send you the info if you send me a private message.
There's no reason why they can't give it to you for endo. Its an NSAID just like naproxen, however Etoricoxib has less of an affect on the digestive system than naproxen and can also be taken daily. Hopefully it would work for you, as both arthritis and endo are inflammation issues, so Etoricoxib should work for both.
Hi.Sorry to hear about your situation. Sounds like you have it rough on many fronts. I used to have really bad fatigue and the only think that significantly helped was diet. I cut out all carbs for many months - gluten and non gluten starches, refined and natural sugars. After that I started adding in a little non-gluten carb every so often. Beforehand I took caffeine and sugar to keep me going. It was so wrong. Its nightly hard to get used to in the beginning but then just becomes a way of life. Its given me back my life. Seriously. Hope that's a bit helpful and not too depressing. Good luck!
I have a good diet generally. But I know I need to give up caffeine and my sneaky vegan chocolate munching. Although, I do worry how I will function! Thanks
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