I have deep infiltrated endo on my bowel (diagnosed via scan and mri 3 years ago) and superficial on my uterus but my bowel issues have been getting worse lately probably after all the pain medications and hormone treatment i’ve been trialling to avoid surgery!
It’s to the point now I can go a week or so with no bowel movement so end up using laxatives just to have some relief and at my recent scan to check for changes it was noted that the constipation would be causing the pain and my endo has not changed however it seemed I had hard stools needing to pass so was advised to take a daily fibre supplement and change my diet. I changed my diet a few months ago when these symptoms first started and my fluid intake yet it’s still worse. Since then I’ve been taking fibre supplements and eating more whole grain and fibre rich foods yet I still cannot go! I’ve even on top of this taken oral laxative plus suppository laxative and I am STILL struggling!
I don’t know what else to do at this point. My recent appointment ended with a follow up in 4-6 months to see if the constipation has been resolved and helped my pain symptoms.
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Karen_92
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Hi, so sorry to hear of your struggle. I too have bowel endo. Constipation makes me so feel so poorly and toxic.
I don’t know if this will help you but I have started drinking plain unflavoured kefir and taking pre/probiotics to help with healthy gut bacteria. I also drink some aloe juice and eat about 6 dried apricots a day plus plenty of fruit and veg. Fibrogel also helps sometimes. You are doing the right thing by drinking lots of water. I must admit I can sometimes overdo it with the supplements when I’m desperate to move my bowel and end up needing to stay very close to the loo all the next day and can cause increased pain flare up so please be careful and seek medical advice before trying anything new as what’s right for me may not be advisable for you.
I have been looking at probiotics for healthy gut but I’m worried I will end up the other way with my bowel movements!
I forgot to add I have stopped all pain relief and hormones to see if this helps which means I’m experiencing pain plus the constipation pain! Just want it to end!!
I take fybogel daily in the chew form and tried prunes previously which made me go small amounts but often! Maybe I will give them a go again until I’m back to being regular and off the laxative medications
hey, I could have written this post myself as I am in a very similar position. Bowel endo detected by MRI which they do want to operate on at some point (but I’ve just had a baby so not for a while!). The constipation is draining, it’s caused piles and fissures for me and I bleed every time I go to the toilet (which is like you, often once a week and absolutely agonising). I have given in to just managing it with laxatives and suppositories (the glycerin ones) and also prune juice if you can get that? It’s gross but a glass a day with ice or something might help. It’s horrible because you’re constantly worrying if I take this now am I just gonna have diarrhoea in an hour etc. but I’ve found that diet etc. doesn’t actually do much at all and my body is crying out for more help!! It sucks and I don’t think anyone realised how difficult it is. Thinking of you x
I’m sorry you’re also in the same position! It’s horrible!!
I’m going to try the prunes again and see if they help as my diet changes have done nothing but I’m worried about my body relying on laxatives just to go as that’s not how I want it to be!
I’m on the wait list for surgery but the consultant said he wouldn’t even consider touching it whilst I have issues as it will cause further complications.
I hope they look into this a bit more now endometriosis seems to be a bit more highlighted and we get some help!!!
Hey lovely. I'm glad to hear the prunes worked. That (and a strong morning coffee) would be my go to. Coffee makes me go.The other recent discovery for me is castor oil for being a laxative. It only works if I use it intermittent. I suspect because it clears me out gently until there's nothing left. I have a hot bath at night and lay then rub the castor oil into my hands and then onto my abdomen and I use it across my bum and pull away from my spine with my fingers. On your tummy you should follow your digestive system with it in a circle if its to regulate bowels but that's not why I use it. It was a happy coincidence. It makes me go the day after.
I’ve heard of caster oil so do you ingest this or does it soak into the skin? Also are there variations do you recommend a specific brand/shop?
I stopped drinking coffee (instant and nespresso) because it upset my stomach and made me feel really hungry even if I drank it after food but I drink tea and it’s never helped so I might look into trying a different coffee to try in the mornings!
Yeh I use fushi organic castor oil fresh pressed 100% pure oil. I got it from a little private high street store but Ive seen it online too.It gets rubbed on your skin. Please dont eat it.
Also check for castor oil posts on here. Other ladies who have a proper hormone cycle like yourself use castor oil on certain times in their cycle. I have a 10 week injection that makes my cycle more like 2 months long.
Coffee- proper coffee ground from beans pressed in a cafetiere or in a mocca pot is proper coffee.
I also just remembered something important about coffee! There's twoo main beans used to make coffee! One gives people sore stomachs and the other does not. arabica and robusta I think. The one in Taylor coffee is the good one I think.
Tea doesn't make me go number two. It makes me wee all day lol. The caffeine hit is spread differently somehow. I don't understand that one 😊
Because my main endometriosis is in the bowel and has gone through it meaning it’s major bowel surgery to remove that section with it in. Stoma after surgery and 6month on average recovery time and they have to attach the bowel back together and the complications are life changing (if they happen). I was told this upon diagnosis and was in complete shock and terrified so I opted out and chose to trial other methods first. I’ve been doing this for 3 years now and I am worse off so I have finally decided to go for the surgery. I have been on the wait list since April but it can be 18-24 months wait and I have a call with a nurse in 4-6 months to follow up as my recent scan was to confirm that it would be major surgery and not keyhole
Hello Karen,I too have endometriosis and thought not confirmed by scan have significant bowel symptoms. I went to a herbalist who gave me a powder and my goodness it works! I was surprised at how little I need. So happy I don't need laxatives. It may be worth a try for you. Regardless I really hope you find relief soon. Claire
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