I’m going through a hard time at the moment. I had an operation in September 2016 and removed quite a bit of endo and my specialist left some superficial spots of endo that were on my recto sigmoid. I followed this up with a DIE scan and was told it was mild- no nodules but some thing was slightly thicker requiring monitoring in the future. Also there was a small area in my pouch of Douglas with possible deep infiltrating endometriosis.
Anyway, since the bowel endo diagnosis I’ve basically cut out gluten and dairy and it has improved my symptoms a lot! However when I eat it I feel horrible and these things are in everything so at times it can be hard to just go cold turkey and cut them out 100%. I’ve really developed a bad relationship with food from this because I just see dairy and gluten as bad food now and because I restrict myself from it I end up literally binge eating whatever I can get my hands on at some point in the week. My self control is gone, I feel so out of control around food all because of this horrible disease. Who would’ve thought you would develope disordered eating from endo 😅🙄. Any tips for this?
And finally, the fatigue I’m experiencing is just annoying. I’m so tired, my energy is extremely low and it’s making me feel down which is probably making everything worse. Mind over matter hay!!
I just need some help, someone to talk to, some advice.. anything. Bowel endo sucks, it’s giving me anxiety to travel, I’m stuck on contraceptive pills because I’m scared of what will happen to me when I go off it. I just feel so stuck and alone.
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belsy
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Really really sorry to hear you’re having such a rough time. The knock on effect of this disease can be so damaging! Do you have a good relationship with your gp-they may have some ideas for support for your mental health? Perhaps some counselling to help you feel a bit more in control? Sometimes we all need someone else to help pull us out when we feel we’ve got stuck in a downward spiral, you’ve taken the first step by posting on here. You owe it to yourself to take the next step and look for more support from your medical team-that’s what they’re there for! Really hope you feel more positive soon x
Try taking vit b12 and magnesium to help with the fatigue.
I use the b12 that you dissolve under the tongue by Nu U Nutrition and magnesium spray with aloe by Severn Minerals which helps loads. You could also look at getting a good CBD oil as that is amazing. Hope this helps. X
Really really sorry to hear how much you're struggling at the moment.
Well done with cutting out gluten/dairy, as you say there's so many products that have these in them so it is difficult, however, most supermarkets these days have a 'free from' section - ambient, chilled and frozen - though in my experience they're all slightly different and some stock better than others. It's a trial and error finding which products work for you, and working out how much (if anything) you can have of products with those in them before you have problems. Have you tried cutting back on anything else to see if that helps - caffeine, red meat, alcohol? I only drink decaff coffee now and have been drink redbush tea for years. I occasionally have red meat, but tend to stick to plant based mince, chicken or just vege meals. I've also been doing a nutritional cleansing programme for just over a year now which has really helped me, happy to talk through it if you want to PM me. I would never claim that it will cure or prevent anything, but it has helped with a lot of symptoms.
Natasha Corrett's recipes books are great, they're largely vegan/vege recipes, and are super healthy and fairly easy to make. Most things can be adapted to be gluten/dairy free, you just have to find suitable substitutes, which again is a bit of trial and error.
In terms of fatigue, magnesium and b12 will help, if you have a good health food shop near you they'll be able to recommend something.
I'd speak to you gp about depression/anxiety, they can prescribe medication for you and will likely suggest talking therapies, these services are usually self-referral but will definitely be able to help you with your mental health.
A lot of managing these symptoms of ours is self-care. Yes, medics can help, but there are things you can do to help. I haven't tried it yet, but acupuncture is on my list of things to try as I know it could help my mental health and fatigue, as well as some of the other symptoms. I also find regular massages helps, it just makes me feel better generally, and I'd be no where without exercise. Yes, I have to be careful how much I do because of the demon fatigue, but if I didn't do it, I'd be a gibbering wreck and would probably have quit work by now!
Hope some of this helps you. Happy to talk in more detail outside of this post if you want to.
Sorry you are struggling so much. I understand the dietary frustrations. I've been cows milk dairy free for 18 years and I had to go gluten free a few years ago. I react really badly to both so I have to be very strict and constantly read labels. Its so hard isn't it? At times I would find myself eating whatever dark chocolate or gluten free biscuits I had around. I actually think part of the reason for this is sugar cravings. Sugar is addictive and lots of the free from foods are full of sugar. This mucks up your blood sugar causing spikes and lows. The lows can cause tiredness and cravings. Apart from the other great suggestions on here about b vitamins and magnesium I would also point out the need for chromiun. It can balance out the cravings. I started a good multivitamin that has all those in it and for me it really helped. I'm careful to avoid the high sugar gluten free products. Initially it was easier to focus on more simple meat, veg and potato based dinners. I eat porridge for breakfast and usually oat cakes with lunch as they are more filling than most free from breads. Another thing to watch is that you eat enough protein. This also helps the cravings as you don't feel hungry. I add nut butter to my breakfast and always eat protein with lunch to.
I also only drink redbush tea and decaf coffee but you may not want to cut anything else from your diet till you feel more in control again. When I finally found I could make the meals I enjoyed again I started feeling better about the whole diet. I hope at least some of that was helpful and you are able to feel more positive soon
I’ve been recently diagnosed with bowel endometriosis and I honestly love my food. The thought of cutting it out and going gluten/dairy free scares me. I’m waiting to see what the specialist has to say to me when I see him x
Hi Belsy. You are not alone because you definitely have all our support and empathy. Fatigue and exhaustion often comes along with trying to manage chronic pain and endowed, so I’m not surprised, how you feel, and it is bloody rotten for you. So firstly, here’s a big hug 🤗 to try and help you feel better. Secondly there have been some excellent suggestions on here about going back to back to GP/ Anp (advanced nurse practitioner) and the IAPT service - talking therapies. My daughter recently accessed this for help with an eating disorder. Hope that helps.
Oh one more thing, there’s s theory/tool/help called the “spoon technique “. Look that up as well. Linked to chronic fatigue syndrome.
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