Management Advice Endo & Adeno stage4

[Serenechaos]

Hi everyone, I am new to this but many years of experience. Endo stage 3, diagnosis at 19, several operations, Adeno diagnosis at 42 am now 53. I want to let you know how I have managed.

Bowel

Learn about the difference between soluable and insoluble fibre. You need Soluable fibre oats and inulin are my essential. I make breakfast muffins with both. Inulin is chicory root and is very sweet. Add to greek yogurt and banana if you don't want muffins

Laxatives are usually too strong Dulcosate simply keeps the stools hydrated which makes it easier to pass. Check with Dr but I take 5 tablets daily until I am no longer constipated. Always drink 300 ml water with these tablets and I drink 3 litres a day.

Stay away anything that causes wind for me beans, are no go just before and through a period. Again oats are your friend.

Bladder.

Take your time. Don't have a quick wee. Learn about double, triple voiding. Which basically means empty, relax, breathe in make sure your tummy goes out when you breathe in, then try again. Also try different positions, ie. bending forward .

Pelvic floor.

Ask to be referred to a pelvic floor clinic, in the meantime try to do pelvic floor exercises whichever you can manage. Being able to relax the pelvic floor when you need, emptying bladder bowel and for intimate relations.

Pain relief.

Mirena coil with surgery has been a lifesaver for me. But it was not an easy ride. Had coil fitted 6 months before surgery and a year after I still, at times wanted to rip it out because of pain. But I trusted my consultant surgeon and I am now coming up to 10 years and it has made a massive difference, especially for Adeno uterus back pain, sciatica.

Medication

no medication will cover the pain if you start to take on the day of period. I started full dose paracetamol and naproxen from ovulation until end of period. I also take a low dose of Diazopam 2.5 mg max 2 tablets at start of period. Take all t 3 meds at same time they work better. Diazopam is relaxant so will relax uterus, but they will not prescribe it as pain relief I had it for anxiety. Because I use such a low dose and only in extreme pain it still works at a very low dose for me and go ok with prescribing it

Pregabalin has also helped with back pain especially nerve pain.

Supplement

Vitamin d is essential.

Magnesium is a relaxant but had to absorb, best way is through the skin, so salts in the bath spray oil or simply soaking feet in epsom salts magnesium flakes.

Probiotics, the best you can afford. Symprove is a good one to start.

I hope this helps, I am a bit of technophobe, so don't check this often, if you think this post will help on another thread please let them know.

It is a horrible disease which has meant my life has been completely dictated by my monthly death/ cycle, but I have managed to do a lot of amazing things. Acceptance and management for me is as good as it gets, hopefully things will change for the next generation. Good luck in finding your balance

[Nickyaa]

Hello!

I am so grateful for this post. I'm very similar to yourself with research and trying to support my body the best I can.

I'm currently on the urgent list for hysterectomy, bowel and bladder resection.

I am on sustained morphine which helps the pain but making bowels worse, clearly.

Could I trouble you with a list of the types of food you eat, in particular the soluble fibre? I'm awful with Greek yoghurt but absolutely fine on other dairy fats.

My problem is that due to the endo on rectum, I struggle to pass my stools even with high fibre, 3 litres water etc. I've only just learnt about soluble and insolubl3 fibre (I never really paid attention to it before!).

If you could give me some examples of what you eat I would be so grateful.

Xxx

[Serenechaos in reply to Nickyaa]

Hi, yes I fell into the high fibre trap too, they don't make it clear soluable fibr is what u need, oats, pearl barley, quinoa and buckwheat are my staples and low carb veg. I start with breakfast muffins, I use half oats, and ground almond, eggs, cottage cheese, bananas, inulin, baking powder, that's the basic ingredients I different flavours in season fruit. I batch cook these and freeze.

Also Sourdough and eggs, or peanut butter and apples.

Meals again lots of batch cooking, shepherd/ cottage pie perfect for when on period everything is better with mash potatoe.

Moussaka, chillie curry fish pie I am not a big fan of pasta but will occasionally have a mix of lentil and buckwheat pasta tomatoes basil and mozzarella, or prawn broccoli. I batch cook a curry sauce in small portions and then just add whatever type of protein veg Im in the mood for. I love Thai food so a beef massam curry is a must, I cook freeze the curry with 🐝 and sweet potato but add veg when I eat it green beans broccoli or whatever you like

Last meal is a mix of a fast 500 shake and oats, the shakes are high protein and fibre ( inulin) essential nutrients no UPS , I need this to take my evening medication ( pregabalin) protect stomach from acid reflux.

I have a fruit and veg box delivered from local farms, I only eat good quality meat which is expensive but I have reduced the amount I eat. Frozen fish seafood, lots of veg, add red lentils and grains like quinoa buckwheat pearl barley into any sauce like the mince for moussaka or soups. I batch cook so make one dish for each of the weeks and mix with vegetarian meals.

I have also learnt you need different nutrients at different time of cycle,

1 st week, start of period: meat

2nd week vegetarian, cheese and beans eggs

3 wks seafood fish

4 wk chicken fish

Lots of veg whatever is in season .

Cottage cheese might be a alternative to greek yogurt or whipped feta coconut yoghurt might also work. Just stay away from any yoghurt with added sugar, inulin is very sweet, start with half teaspoon and build up your tolerance.

my bowel gets kinnked so temp blockage, this ends in a 4 hour battle to empty bowel. This means I get extreme pain and almost violent need for expulsion but can't pass anything, sweating passing out and throwing up bile. What I have learnt is that this is a reaction of the vagus nerve. Put some ice at back of neck,

stand up and use the ' I lUV U' massage technique details in YouTube. I use one of those sonic facial massager in my hand, to help things to move especially in the area of blockage.

Then with urge move to try to align the bowel and rectum, including manual manipulation if needed. The uterus can move your small bowel at different time of cycle. The docusate helps to keep the fecal matter hydrated, and therefore easier to pass.

I hope that helps, obviously you know morphine is terrible for constipation, I had to stop all opioid meds just can't tolerate them anymore. I was lucky with my consultant and bowel surgeon were brilliant and managed to release uterus from bowel removal of adhesions without the need of a stoma, she has retired now, surgery 10 years ago. I hope you all the best.

[Nickyaa in reply to Serenechaos]

Hello!

You have so been sent to me I can't thank you enough.

I started pulling back big time on insoluble fibre since you messaged. I didn't pass my bowels yesterday (I go daily which is such a horrific ordeal). I went this morning and it was a different experience. Yes not fun at all and alot more cramps however, the faeces passed through much better as not as big and softer. I don't know if it is a one off but my goodness, much better.

I also eat incredibly well but have been so fearful of oats as they have caused such terrible bloating and wind and also cause blood sugar spikes. However, I don't know if I should try again and maybe try organic oat bran?

I'm a firm believer in good high quality fat as it naturally makes stools softer and easier to come out. I use spelt flour and homemaker goods and only eat sourdough a slice at the weekend.

Eggs seem to bung me up which is such a shame as they are a powerhouse of a food.

Could you please tell me more about the 500 Shake? I googled but wasn't sure.

I bought the inulin from my local health shop yesterday and going to make muffins today. Do you use it in any other meals? I would be so grateful if you have any receipes.

I'm in a catch 22 with meds as for 2 years was total zero no meds. However I kept getting admitted this year (5 times so far) and I've finally given in to 10mg twice a day of zomorph. I am suffering terribly with reflux since starting it and popping a Rennie here and there. I fasted daily but now the gp is saying that I need to eat little and often but I don't know what snacks to have so if uou have any suggestions I would be grateful. I stay away from fruit unless berries and apples again terrible bloat and wind.

I am due my big op in the near future and want to be in the best mind set and physically ready also. I'm such a natural person with food and medicine so this is something I'm trying to go with the flow with.

Again, thank you so much for your advice. I cannot express how much less of an ordeal passing my bowels was. Would you suggest only having soluble fibre or a mix of both?

Sorry for all of the questions but you have been such a great help and I really appreciate it xxx

[Serenechaos]

I am glad to hear the advice is helping, I genuinely believe if you keep at it will help .

Right answers to your questions, shakes are from the Micheal Mosley website not sure what is allowed on here which is why I wrote Fast 500 it's the 5;2 guy. It has really good protein bars .

Oats, I would try them again am surprised they have an impact on your blood glucose as they recommended for diabetics. The muffins will be a good way to introduce again. I get organic oats from Aldi.

Muffin recipe. I really don't have a recipe as I cook by eye. But as a rough estimate 1 banana 2 eggs 1 cup cottage cheese, blend then add 1 cup oats leave for 15 mins then add 1 cup ground almonds and a tap if baking powder a 2 tbsp inulin and some blueberries or other berries add milk or water to make consistancy is normal cake batter.

Docusate, you really need to get some from GP, it will make a massive difference start with 1 tablet I take 5 because I have nerve damage. They are not laxatives so don't impact the bowel with long-term use. I can't recommend these enough am surprised you have not been prescribed them. The cramps etc is because the bowel sucks the water out of the food as it passes through your gut the longer it is in there the harder it will become, this medication keeps some of the water in the matter, I drink 500 ml when I take it.

Chia seeds, have a similar effect, always mix seeds with water to make the gel the add to muffins shakes. People make the mistake of just adding dry, they will then absorb liquid in gut and can cause blockage if there is enough liquid. I learnt that in Peru it's how they eat them.

Don't forget the massage I LU do it a couple of times a day it helps to keep things moving.

Reflux unfortunately meds and constipation will cause reflux you could try a PPI from GP but be warned they completely destroy your gut biome.

Eggs on there own can bung you up but if you eat with sourdough/ spinach and mushroom it should help. You could make egg muffins fry some courgette onions mushrooms spinach whisk some eggs add into muffin tray. Bake in oven, freeze a good snack with a salad.

Fruit, always eat at beginning of meal, as it is easier to digest so you want that to go through first. I always eat an apple a day as it is another source of soluble fibre . Try with peanut butter

I am a big fan of good fats too, avocado, olive oil, butter, ghee, absolutely no trans fats.

Insoluble/ Soluble fibre, if you get the bloating stay away from the insoluble until things ease. I eat both wholegrain rice etc buckwheat flour is good.

Probiotics is absolute must, they help with the bloating and so much more. I use to get a bladder infection after every period since taking probiotics I have not had another infection for 15 years. I would highly recommend Symprove as a 12 wk reset and the see how you get on. If any food causes bloating tr a smaller quantity next time and maybe try with some form of protein.

Definitely try smaller meals through the day it should help.

Am really sorry to hear about surgery, it is definitely worth giving these tweaks a go as anything you can do to try to take control will help your mindset.

Let me know how you get on.

[Nickyaa in reply to Serenechaos]

Hello!

I am so sorry, I didn't see this come through.

I am on inulin now and that has been brilliant. I'm still on half a teaspoon but will increase next week. Sourdough with natural peanut butter and inulin on top is an absolute must and my favourite ever!

I have been following most of what you recommend. I still haven't introduced oats yet but will.

My bowels I simply cannot keep up with. I go everyday but some days, they pass so easily and no pain and most days they ate huge and initially struggle to pass then fine. The odd thing is I analyse what I did the day before etc and there is no trend to what I eat etc. It blows my mind.

I desperately want to come off the morphine but it genuine does ease my endo pain. They are trying to increase to 20mg twice a day but I refuse. They really don't agree with my mental health but massively help with the pain so it is a catch 22. I am pondering on stopping the morning dose and see what happens.

Hope you are well xxx

[Simo7]

Thanks Serenechaos, definitely going to try some of your suggestions xx