Endo diet and bowel symptoms

I'm currently trying to deal with a return of bowel symptoms which most like seem to be due to bowel endo (I have a RV lesion plus a second nodule on the bowel). I've had a hysterectomy and oophorectomy and have already had excision. I had an MRI earlier this year which showed adhesions between the rectum and vaginal cuff, and I have a lot of scarring from earlier surgeries.

I've been sent to a gastro who specialises in helping women with bowel endo manage their symptoms and pain - about a year ago (after having covid) I started having unpredictable bouts of very painful diarrhoea as well as the constipation I've been dealing with pretty much forever :/

She suggested that I go on the endo diet. I've been on it before and had found it helpful. She also recommended peppermint oil, and then gave me nortryptiline to try if that didn't work. I've cut out dairy so far, added the peppermint, and I also added a probiotic to see if that would help. But TBH after a few days of initially feeling better, I feel now like the diarrhoea is getting worse. I've had 2 bouts in the last 5 days whereas before I could go maybe 10-14 days. Although there was nothing sinister in the MRI she recommended a colonoscopy, which I'm in the process of arranging.

I remember the endo diet helping before, but it was years ago, and I've never tried peppermint. Should I be expecting things to get worse before they get better (due to changes in gut bacteria)? I'm so desperate for it to stop, it's starting to really limit my life, especially as it seems to be triggered by stress and if I go anywhere far from home I'm terrified of having an attack. I don't know what to do.

[Hibiscus99]

Hi! I have literally the same problems as you with my bowel, it’s like a circle of symptoms then creates anxiety and then the anxiety/stress causes more symptoms! I did have a colonoscopy a few weeks ago and I am awaiting the results but unfortunately my gastro and Gynae consultants don’t communicate, therefore gastro says can’t help with Gynae and Gynae say can’t help with gastro. I personally think speaking to a endo specialist would be helpful as know one really knows as it’s just process of elimination xxx

[bunmum2 in reply to Hibiscus99]

Elimination being the word!

[Behind_Hazel_Eyes]

Hi Pickles25, Sorry that you are suffering like this. I also have endo in my bowel and stage 4. I have found an anti-inflammatory diet helps (No gluten, no dairy, no alcohol, no caffeine, no processed foods, no sugar). Always making sure that your plate is half vegatables, quarter carbs and quarter protein. Trying to drink 2 litres of water daily. Walking daily for a couple of miles. I have been on mine for the last month and a half and have noticed a real improvement in my symptoms. My last period was no where near as rough as usual and the diarrohea I used to experience has gone. I generally feel a lot better as well. I would also suggest you listen to a podcast by the Glucose Goddess. Following her advice has also helped.

[bunmum2]

I'd def. follow Behind Hazel Eyes advice plus try not having the probiotic, I have tried live yoghurt, probiotics and prebiotics in all forms, and it was only when I cut them out that my bloated belly calmed down and bowel movements also became more normal. I only have "gut friendly bacteria" when constipated as a last resort now.

[Hidden in reply to bunmum2]

I will cut the probiotic and see what that does. I've got 3 docs all suggesting different things, so I do feel a bit all over the place. I've also been told to cut the oestrogen dose of my HRT. I added it b/c I had 4 lots of antibiotics for UTI's last year and wondered if that had partly contributed to the diarrhoea.

[ccfd9]

Hi

It all depends on what you understand by an endo diet. There are various, many people use the FODMAP diet, which is not anti inflammatory and you need to be on an anti inflammatory diet. Also with you bowel involvement you need to discover the foods that upset you most. Have you read Dian Shepperson Mills’ book “Endometriosis: a key to healing and fertility through nutrition” ? This may help.

[Hidden in reply to ccfd9]

Doc said specifically to cut dairy and gluten. I'm already alcohol and caffeine free and don't eat processed food.

[ccfd9 in reply to Hidden]

Good, you may be okay with goats or ewes dairy. Bovine dairy has an inflammatory protein while goats, ewes, and buffalo dairy is anti-inflammatory, You also need to check any drugs you are on as often they may have gluten or dairy as an excipient. You may also be effected with some red wines as if they are barrelled in oak then they use a wheat based glue to seal the barrels. Madness I know. Good luck

[becca88]

Hi, I feel your pain, I have stage 4 endo with it affecting my bowel, I’ve been suffering for years with bowel symptoms affecting my daily life, my gynie sent me over to gastro and they are working together, gastro has referred me to a specialist gastro dietitian and I’m currently on the FODMAP diet, I’m 3 weeks in, to my surprise I feel so much better, a lot less symptoms (just got to find out my trigger food) due my next appointments soon, I still struggle with bowel symptoms around my period and ovulation time, but compared to before when it was 24/7 I take that as a win.

The diet is hard but when you feel the benefits it keeps you going hope you find something that helps, good luck

[EmB18]

I don't know what changes you made when you went back on the endo diet, but if your bowel is sensitive, it's best to do things slowly and gradually. The endo diet often includes lots of fruit and veg, which is great for endo and really anti-inflammatory, but it may be too much for your bowel if you suddenly increased your intake. I'd take it slow and make the changes gradually to see if that help.