I am 49 and have stage 4 endo and at one pt had my bowel shaved! However my daughter aged 19 has been diagnosed with deep infiltrating bowel endo that the specialist is keeping an eye on. My question is do any of you have any tips on this pain within the bowel as I don’t think my pain was as bad. She has rang me from Uni in agony and 111 told her to go to a&e! I’m assuming that the bowel movement in itself is cause this sudden on set of excruciating pain? What can she do or take to help going forward? Any tips greatly received I’ve passed on my tips but other parts of me were affected by endo.
Many thanks!
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Reddog8
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Sorry your daughter is suffering so much, definitely not easy for her with studying. I find it’s really important to go to the loo everyday as it effects pain levels. She might need some type of laxatives.
I was just looking up Endo/bowel/oestrogen on aI chat and there does end up being oestrogen in the bowel, there must be more of a link there in slowing down the bowel. There needs to be much more research
Thank you! I think you’re right going forward with emptying bowels daily! She has yet to be given any prescription pain relief but going forward I have told her she must get a good pain management plan in place too!
I am fine now only a few twinges but I know how to manage my pain! I’ve learnt a lot over the years but I think bowel endo needs to be managed slightly differently. I suspect diet might also help…. It’s so hard I feel terribly guilty passing on such a horrid disease!
She’s doing well without any medication, you’re right she needs to plan it more. I ignored the period pain apart from over the counter meds and didn’t get diagnosed until a few years ago at 51, she definitely shouldn’t ignore anything.
Glad you’ve got it under control 🙂 not easy. They say an anti inflammatory diet can help but I’ve tried all sorts and doesn’t seem to make any difference. Please don’t feel guilty you weren’t to know. They are only realising it can be hereditary in recent years, the lack of research is horrible. Hopefully current research will help women like your daughter 🤞
Oh, that's rough! I ended up in A&E twice before my endo was diagnosed. Not the best of options - but they were able to provide me with some temporary pain medication at least.
Constipation definitely made things worse for me, so might be worth looking for some gentle laxatives. Also just a constant supply of pain medication to be quite honest. Sometimes I find heat helps, but not always. I hope she gets some relief soon!
Unfortunately A&E treated it as just some round girl with period pains! Clearly the young doctor herself had never experienced bowel spasms to the point of passing out so just have her some nurofen and sent her on her way! I thought that during my 40yrs of suffering I’d see some improvement in the medical profession but we still seem to be in the Stone Age!
Ugh, that really sucks! I'm sorry you had to deal with that! It's truly ridiculous that you can be passing out and still be told, yeah, you're fine, off you go! <3
I am on day 7 after full hysterectomy, appendix removal and bowel surgery. There isn't much I don't know about bowel endo
Lifestyle is everything with bowel endo and will significantly improve systems. It won't take it all away but massively help.
I was fortunate enough to do a post a while ago for help as was so desperate. I am going to copy the responses from a lady on here who helped me so much with my journey. The doctors are baffled at home I'm healing so quickly, because I'm following alot of the lady's advice even now since coming home.
Here you go:
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
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.
Wow thank you so much, it always amazes me how the women on this forum have learned ways to help with their journeys! We are given so little support. Thank you for sharing this I shall send this on to my daughter. Thank you!
You are so so welcome. It really does make a huge difference by following the above steps. I think bowel endo is very similar to ibs. Treat it as if you ibs and it helps in turn with the endo. The difference between soluble and insoluble fibre is everything! If you need anything else, please do let me know xxx
Thank you so much. I am on day 7 and already feeling incredible than before and my bowels have dramatically changed all ready. Best team at Stoke I could have wished for. I shall keep your daughter in my thoughts xx
I’m so sorry. I have stage four deep infiltrating too including the bowel. It’s so so excruciatingly painful.
I now get pain within an hour or so of eating every day, weird as I know the door won’t have reached that area so quickly.
You’re correct that a bowel movement, before, during and often for a long time after sets the bowel into a spasm.
Gas can too and so does just exercising or moving in a way that aggravates the bowel.
I’ve been offered a stronger form of Buscopan by GP which helps the spasms quite a lot.
Also the gastroenterologist put me on a low residue/ fibre diet which helped too, gave the bowel less work to do. It’s worth investigating and doesn’t have to be forever as you can slowly reintroduce fibre but always avoid very high fibre items.
If I think of anything else I will send you a message.
The things that helped me are chia seeds soaked overnight in kefir and Almond milk - they pack SO much fibre but don't take too many to start with or they'll make you constipated. Magnesium is great. Vitamin C 1000 1 or 2 per day. Finally cut out gluten too as it's glue that makes every thing stick so without it bowel movements are much easier.
I had the same as her. I would go to the toilet up to ten times a day. I bled when I went to the toilet too and was in agony. I found only naproxen helped the pain and unfortunately a hysterctomy with tissue removal was the only thing to finally stop it. I did ask for a colonoscopy to check all was ok too but it was the endo. She could try an anti inflamatory diet too which helped me a bit. Sending love.
hun I had endo taken from bowel I would encourage your daughter to try a Mediterranean style diet and a food map diet. Which means cutting out anti inflammatory foods like wheat gluten and sugar. If have even had better success and abit less pain now that I also don’t have lactose in my diet . I had major surgery back in may and my pain levels are coming back up again. Encourage your daughter to ask her gp to ask for a referral to a pain clinic dr ask when you have a diagnosis it’s then managed more holistically via pain clinic and they can give you different medication to try . To see which one a work or not . Xx
Thank you so much ladies, I have passed this all on to my daughter and she has taken comfort from knowing she isn’t alone! She will try and incorporate some of your suggestions into her life now and fingers crossed we don’t have such a bad episode. X
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