Deep infiltrated Bowel Endo

[Karen_92]

Hey warriors!

I have deep infiltrated bowel endo, mild adenomysis and a growth in my pouch of Douglas

My main issues are having extreme pain the moment I need the loo! The pain subsides about 30 minutes after I go but I also get sharp pains in my abdomen so I’m looking at the best diet/ foods to eat to lesson this as painkillers don’t help in this situation. I can’t not eat and it’s random so I can’t prepare for work etc of when it will happen but it’s agonising!

[Emmaja_ne]

I also have this and it’s the worst. So painful. really feel for you. The only thing that’s helped me is to go back on the pill. When I wasn’t on the pill I would take ibuprofen when I thought I may be due on and also laxatives so I wouldn’t have to strain as much. I also went gluten free which seemed to help with bloating slightly!

I completely sympathise with you because it’s absolute agony

[Softchoc]

I had a patch of endometriosis on the outside of my bowel and was advised to eat cabbage and fibre, but I found that if the pain persisted it was time for another course of a tablet for 6 months to shrink the endometriosis.

[Endohasme in reply to Softchoc]

Softchoc what did you take to shrink the endometriosis?

[nuttyh in reply to Endohasme]

Does Endo shrink? This is the first I have heard. I would also like to know which tablets these are as I thought the only way to get rid of Endo was to have it excised/surgery. And even then there are no guarantees it wont return. 🤷‍♀️

[Softchoc in reply to Endohasme]

I was prescribed Danazol. It might exist now or there might be better medication. Never allowed from a GP always a Consultant Gynaecologist. It shrinks back the endometriosis which is full of a fluid.

[Jem33 in reply to Softchoc]

I would also be interested in what tablet shrinks endometriosis as I have never heard of this either?

[AllthatGlitters]

I suffer with this too, it’s absolute agony going to the toilet at times.

I have tried all different kinds of foods but nothing seems to help, all I can do is take naproxen to help the pain that I get before, during and for around 30 minutes afterwards x

[miha]

hey, I also had this. It was excruciating going for a stool during my period. Nothing helped me, so I stopped eating too much food on those days so I wouldn’t poo that often. But I still had pain. The only thing that helped me was my excision surgery. I’m also on the pill now and it’s way better. I follow a strict diet with no gluten, dairy, sugar, soy, red meat and processed food. You should avoid food that causes bloating.

[nuttyh]

I found cutting out dairy and wheat and alcohol helped, basically just cut out all the joy in your life! However, my episodes of pain and shall we say 'immediate evacuation' could also be quite random and at times like this Buscopan has been a life saver. Its available over the counter without a prescription. Obviously check with your doctor but might be worth a try.

[LollieRose25]

hi

I am just commenting cause I completely sympathise with you. I myself have deep infiltrating endo on bowel. I also have IBS, I’m on mebeverine. I did try gluten free diet didn’t help at all. I am awaiting surgery to remove some of it. But would love to know what else could help,

Reading an above comment someone said they take medication to shrink the endometriosis I would love to know that

[Endolemon in reply to LollieRose25]

Prostap® or Zoladex® are gonadotrophin-releasing hormone (GnRH) agonists. They temporarily stop your ovaries from functioning and therefore stop the hormone oestrogen being produced. By temporarily reducing oestrogen levels, fibroids or endometriotic deposits can shrink over a period of time.”

Think one of this injections. I am on Prostap and it helps with my bowel pain 💛

[Thena90 in reply to LollieRose25]

Hi, there's no evidence over hormonal treatment shrinking Endo, the last publication shows it happens randomly, either you're having hormonal treatment or not. Check my other comment, there I talked about diet and supplements. Again, it's not a cure, it's just to improve symptoms. Hope you get well soon 💛

[Cocoacupid]

hun I have this too and over the years has got worse and worse mo matter what I eat need the toilet straight away. The pain is unbearable. I’m waiting for further surgery.

[Thena90]

Hi, I'm sorry to hear you're going through this. I have deep endometriosis and I used to have spasms when trying to poo, but since I started my hormonal treatment (I don't have periods) and diet I don't have them anymore. The best diet for endometriosis is non inflammatory diet and supplements that reduce inflammation like Turmeric, Omega 3, Aswghanda KSM, DIM, etc. Also, try to reduce stress. Hope you get well soon 🙏🏼

[EmB18]

It's worth keeping a food diary for a few weeks to see if you notice if any foods are making it worse. Gluten and sugar were triggers for me but we all react to different things. Adding in more anti-inflammatory foods like fruit and veg can help. If you find these hard on your digestion you could try them in soups or smoothies.