Some advice needed? : I don’t know what it... - Endometriosis UK

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Some advice needed?

gabbiefawn profile image
10 Replies

I don’t know what it’s like for everyone else, but I get a flare up, dose myself up, once the pain is under control (as much as it can be) for days and days after I am so so achey, like I’ve run a marathon... I’m so exhausted from doing nothing?

I kinda know how to get through the pain... but the achey “pain hangover” is really getting to me

Does any one have any suggestions

I have hot baths/hot water bottles etc

Has anyone had massages? Or anything else?

Any advice would be great

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gabbiefawn profile image
gabbiefawn
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10 Replies
Chillier profile image
Chillier

Hi Gabbie, personally I would ensure you are taking regular pain killers when you have a flare up even if you feel a little better. Even just continuing with regular paracetamol to help the achy hangover would help. I've not long had surgery and now on prostap so no periods or flare ups anymore. Still getting some pain but also still feeling exhausted after the months and months of suffering and being in hospital. I find drinking plenty, eating regularly (even when you don't want to) and some light exercise helps. I hope you find something to help you get through these flare up. Best wishes x

gabbiefawn profile image
gabbiefawn in reply toChillier

Thankyou so much!

Alex9 profile image
Alex9 in reply toChillier

I've had some success with a multi vitamin and mineral supplement and evening primrose .

I'm having a flare up at the moment and have been in bed an hour already! Some days I'm so tired I can't wait for my son to go to bed - luckily he's having a sleepover at my mum's tonight. I work from home, which is a blessing.

It's not any easy thing to live with and I feel I've had to make a lot of allowances for this horrible condition .

Chillier profile image
Chillier in reply toAlex9

Yes I am on supplements too. I take Dmannose as I have bladder problems from the endo and also fish oil is said to be good for endo too. Do you follow the endo diet at all?

Alex9 profile image
Alex9 in reply toChillier

I have bladder problems too ! What is this stuff you take and where can I buy it ? I used to follow the endo diet but i didn't realise it at the time! I just worked out that eating much less meat / bread / cheese / processed food / caffeine made me feel much better. However now I'm a single parent working full time I just go for convenience . I am going to sort my diet out .

Stress is a big trigger for me too.

Chillier profile image
Chillier in reply toAlex9

DMannose you can buy on Amazon. It's essentially the sugars that are I'm cranberry juice that help prevent UTI's. I have a catheter through my stomach as the endo has damaged my bladder and nerves so can't empty it normally. Makes me quite prone to UTI's and I've been in hospital twice for sepsis. I also make sure I drink two litres a day of water or squash. A lot of painkillers and antidepressants also affect the bladder so a lot of my medication was changed when the urologist realised what meds I was on. X

Hannah0091 profile image
Hannah0091

To be fair I get like this too. Exhausted almost from doing nothing. I take pain killers on a reg to keep everything under control but sometimes I can fall asleep just reading 1 page of a book it’s annoying, but I try to be patient with myself cuz I know it usually will pass agin.

StefaniaJW profile image
StefaniaJW

It's chronic fatigue. The way to right it is getting rid of the pain and inflammation.

That will take at least a year of serious work. First of all, have you ever had a laparoscopy done? Are you on birth control or something of the sort? Are you following any particular dietary regime? Are you taking any supplements? Do you have a regular sleep schedule?

gabbiefawn profile image
gabbiefawn in reply toStefaniaJW

I’m waiting for my lap, just had my pre op done. No birth control (only allowed on the pill, nothing else as I have had an ectopic pregnancy) tried different pills on drs request, and later dr told me to come off them as endo was spreading to my cervix. Diet is something I do need to change, and I’m taking iron/multivitamins/evening primrose oil... not sure on anything else that would help? What do you take? And I sleep a lot, I have a physical job working with behavioural SEN children, so that knackers me ever more. I nap when I’m exhausted and still get early nights.

StefaniaJW profile image
StefaniaJW in reply togabbiefawn

1) Taking supplements is pointless if you don't follow a plant-based, nourishing diet. Unfortunately the nutrients you absorb via supplement are very little compared to the ones in foods (check out healendo.com for mind-blowing info on endo nutrition).

2) I sincerely hope you will get excision surgery with an experienced endo surgeon because I've heard countless stories of failed surgeries if you don't make sure an experienced, highly-trained specialist is operating on you.

3) There's not much else I can suggest other than these two and trying to aim at reducing stress as much as possible

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