Suffering with my bowel and losing weight.

[Endo8701]

Does anyone have endo in their bowel? Suffer with Diarrhea whenever they're on their period, bleed through their bowel like a period too. Also just generally have random pain and Diarrhea anytime of the month? I've been bad for a while now, I have lost so much weight. I had a baby last Nov and I most of my weight I gained was water anyway. So I got back into shape straight away. I was 9 stone 7 for a good couple of months. Then down to 9 stone 3. Then it jumped to 8 stone 10 then to 8 stone 4 now I'm 8 stone. Family members can see I'm losing it fast and are worried.

I am due to see an Endo specialist 15th Oct and I'm hoping he will put me forward for surgery. I've had it once before but not with an endo surgeon unfortunately and I had my endo burned off! My left said of my pelvis was all stuck together, tubes twisted around my ovary. Which the surgeon apparently untwisted and put back together. She did mention I had some spots of endo In my bowel and burned them off. This was 2018!

2 months after this surgery I was back to square one in agony. Here I am years later suffering with pain, Diarrhea and weight loss. I was on the pill for 6months after my period came back after having to baby. And it made me so ill, I was constantly nauseous and I could go to work and I was constantly in pain and had Diarrhea daily.

I literally can't wait for this app as it's been so hard looking after a baby and suffering with all of this. Any help or suggestions welcome. X

[635703]

I’m so pleased you have an appointment soon because this all sounds absolutely unbearable. I bet you’re totally exhausted. I am so sorry this is happening.

Here are my thoughts:

Ablation is an inferior way to get rid of Endo in my understanding, as it can cause adhesions and regrowth the of Endo quite quickly afterwards. The other option is excision where they cut the Endo out instead of ablation as this burns it off. Excision is known to be better but has a longer recovery time.

Here is a practical list of stuff I would do - only my opinion.

1) Go to BGSE website search for your hospital to ensure that it is a specialist Endo Centre. Also search on BGSE website for your surgeon to ensure that they are an Endo specialist Gynecologist.

Reasons for this are you need a skilled and experienced surgeon to excise the Endo and if there is bowel involvement any surgery will need say a colorectal surgeon, as an example. If you have the wrong surgeon, your risk another surgery. The less surgeries the better and so getting the right professional from day 1 is vital.

If you’re struggling with the BGSE searches call the endometriosis.uk helpline but search their opening hours first as they are staffed by brilliant volunteers who know their stuff and are kind and lovely ☺️

2) “You’ve gut this” is a FB group for people with IBS but Endo people with bowel involvement get support there too 👍🏻

I have rectal bleeding, IBS - D and IBS-C and am waiting to have a sigmoidoscopy by a Colorectal surgeon and see a specialist Gyne-urinary bladder nurse too.

I have similar issues to you but not quite the same.

Hope this helps 💗

[Endo8701]

Thank you for replying to my message.I have moved hospitals and the one I am at is a BGSE Centre for Endo. I will not stand got any nonsense again. I've done my research and know what I need. All I can do is wait until next Fridays app and see what they suggest (surgery) hopefully. I didn't mention in my last message but I have coeliac disease, was diagnosed in 2014 so I am already on a strict GF diet plus I don't eat dairy, red meat, or have caffeine in my diet.