Not diagnosed yet, but got severe issues, something needs to be done

Hi, I have never been diagnosed with endometriosis, as I declined a laparoscopy years ago, and have been surviving on monthly NSAIDS ever since. Now, I've got severe bowel issues recently, went to A&E twice last week because of blood in my stools and heavy cramps. This is happening in between my periods, so I didn't make the connection immediately, but there may be a connection. Can you get blood in your stool with endometriosis? I will be getting a colonoscopy some time soon, and wonder what that will show. My second question is, how to treat my severe period pain with anything else apart from NSAIDS? I think you really shouldnt take NSAIDS if your bowel is severely upset. Ah and third question: where do I go from here? Should my GP refer me to a gynecologyst?

I hope they will, eventually. Have been asking for a year now!

12 Replies

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  • I can't take NSIDs as I have a hiatus hernia, I I use a hot water bottle lame as it sounds it is my best pain relief, even in the hot weather we have at the mo. I also have bad bowel issues just pain and cramping all the time all month and the hot water bottle does seem to sooth it a tiny bit also I take magnesium citrate seems to help with the cramping I try to take some at night. If you are in the UK I think I'm sure someone can correct me if I'm wrong but if you go to the GP three times with the same thing they have to refer you to a specialist though maybe take a look at the NHS guidelines so you clear before you go about referrals although once you've had your colonoscopy you might be a bit clearer on what the problem is/ isn't. They might refer you to gyne if they think is endo maybe ?? I not sure as who can refer you for what and why and how quick seems to change all the time :) Hope this helps a little hope you having an ok day :)

  • Hi I am new to the forum and also waiting for a confirmed endo diagnosis as well. However, I have had multiple surgeries, colon graphs, scans, tests and been handed back and forth to gastro surgeons and gynaecologists over the last 3 years. I am positively drained with it all. What I do know is that you have to persist and get as many tests completed as you can. My new gynae consultant has been amazing and is actually gathering medical info on me from last 8 years to try and join up all of the dots and find a permanent solution to my pain and distention (which is constant). She believes I have had endo all along and been misdiagnosed. I have also been admitted with bowel issues so it can all be connected. I have adhesions sticking my bowel and bladder to other tissue resulting in constant pain and issues. To help with pain management I have been taking amitriptaline at bed time for the last 2 years. It s non addictive and has really helped so may be worth discussing with your consultant? You never said why you decided not to have the laparoscopic surgery which I understand is one of the only firm ways of diagnosis?

  • Hi I was not convinced I wanted laparoscopy as I was overwhelmed at that time with my disabling neuro-muscular condition and a chronic depression. NSAIDS were good enough as I only had pain 1-2 days a month. It's only now that I'm getting bowel issues.

  • May I ask who is your consultant and where are you based?

  • Depression is also a symptom of endo for some people so there could be a link there. You need to find your nearest BSGE clinic and ask for a referral there - you are entitled to go where you want on the NHS. Find Lindle's posts on here and the treatment pathway for how to do that.

    We can't name consultants and hospitals on this forum - its a charity :-)

  • Hello, I had blood in my urine when I had bladder endometriosis so it is possible you could get bleeding from your bowel if you have bowel endometriosis. Also, I work as a medical secretary and there are various reasons that many people get blood in their stools including haemorrhoids (piles), polyps (which for most people are benign so non-cancerous) and diverticular disease. Your hospital consultant can also refer you to gynaecology if they feel it is appropriate so if asking your GP to refer you fails then you could wait to see what the results of your investigations are. Best of luck.

  • Hi thanks. Blood from piles is bright red though, not dark and huge blood clots I got the other day. My problem now is that Im loosing too much blood every day and nobody seems to be willing to do anything about it.

  • My mom was prescribed NSAIDS and the side effects are outrageous. There are studies showing a natural enzyme therapy called wobenzym N is equally as effective as NSAIDS and NO SIDE EFFECTS since it's made from natural enzymes. If you are dealing with cysts or endo it is especially effective in healing and breaking down these unwanted tissues in the body. Truly amazing stuff I've taken it for 3 years now. A 7cm cyst in my ovary is no longer found! Also the tie between our bowels and reproductive system is HUGE they effect each other so much. Most women with Endo seem to be lactose intolerant or have celiac disease or both (me) when you stop eating these things the strain on the bowels is relived and it makes a huge impact on your period pains. It eliminated so much for me. Also if your allergic to wheat and eat it anyway it causes inflammation. Which causes pressure and bloating and much pain and discomfort. When I eat wheat I swell up so much I look 6 months preg. when I stopped I lost 35lbs... It flares up cysts and endo too. It's so awful. We have so much shoved into a tiny area 50ft of intestines, bladder, reproductive organs, they all effect one another. Also I've read if you have allergies to food (signs are heartburn diahhrea cramps gas, no these things are NOT NORMAL) and if you keep eating them it can cause infections in the bowels which can cause adhesions. Always be careful of what meds you take AlWAYS read side effects.. and pay attention to what you eat and how you feel after. if you don't feel good and energized after a meal. Your body isn't liking what you are eating.. these are the things that have helped me I hope they help you take care!

  • Hi thanks for taking your time to reply! You address a lot of issues. I'm at a loss atm as no diagnostics have been done yet, and I'm loosing blood and getting weaker. How is wobenzym N working? Is it an effective painkiller?

  • No thanks, that wobenzym N sounds like loads of bull*. I know Germans make good cars, and a few other things, but I will stay clear of that one.

  • I don't think you should call something a load of bull if you haven't even tried it and I've got better things to do than to sit on this site recommending things that don't work.

  • I hope you do 😊 I know better things to spend my money on.

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