Endometriosis on the bowel: Hi, I'm... - Endometriosis UK

Endometriosis UK

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Endometriosis on the bowel

Lululemon98 profile image

Hi, I'm wondering if anyone is willing to share their experience with endometriosis on the bowel? do you experience different symptoms to others and are periods affected the same? I know every endo experience is different I'm just interested and researching different types of endo.

17 Replies

My symptoms are horrendous stabbing pains, off the scale. Lots of digestive problems, diarrhoea, problems with eating, weight loss etc. Also all the same problems with periods. I was fobbed off with the IBS incorrect diagnosis for years. I've had extensive excision surgery which hasn't cured my problems. I also get emso belly and can look about 7 months pregnant. I feel full after eating very little.

I hope this is of use.

Take care xx

Endo belly that should read sorry

I have stage 4 bowel orientated Endo (although other types too). Suffered with extreme bloating (looking heavily pregnant) for a long time, constipation, pain when going to the loo (sharp stabbing) and I also can’t run anymore because the lesions cause bleeding in my bowel from all of the impact. Let me know if I can help you with any other info xxx

Hi,I have chronic diarrhea then live on Imodium and have awful constipation.

Lots of pains in my stomach,flatulence,heartburn and back ache.

If i eat i then have 2/3 days of stomach problems and don't eat.I lost 4 stone.but my tummy is big!

I just live on tablets.

I'm waiting for surgery

Has anyone else had surgery?

Thanks,

xx

Hope you don’t mind me asking but how do you begin to cope with this at work? I have adhesion on my bowel. My stomach has always been all over the place but the last year and half it’s been dreadful. I get so bloated too. Returning to the office soon and feel so panicked about it

Drs have always put it down to anxiety and i think that’s half the problem. Definitely a vicious cycle. How do you not get anxious about that?

Hi,I take Imodium. Which probably isn't the answer but it stops me going to the toilet. I'm also very careful what I eat and tend to not eat in the day.

Its no way to live is it! But my surgery is just not happening and I cant seem to get any answers of when it will be.

Anxiety probably doesn't help your bowels but its a catch 22 situation isn't it.

xx

Really sorry to hear you have to structure your day around it, it’s so unfair. Thank you for getting back to me

I have stage 4 endometriosis in the bowel, for years the gp said I had ibs that was flared by my hormones when I was on my period. I get terrible bloated and griping pain throughout my bowels. I too can often look heavily pregnant, especially when I'm on my period. I also suffer with constipation! I am going in for a hysterectomy this week and possibly will have to have some of my bowel removed due to lesions. I'm hoping this will give me some relief Xx

Claircoops profile image
Claircoops in reply to Kelmwest

That's good you are having surgery,can I ask where you are in the country?Good Luck I hope this is the start for you to being well.

Take Care

xx

Kelmwest profile image
Kelmwest in reply to Claircoops

Thank you xxI'm in Staffordshire

Thank you all for your replies. I have experienced these kinds of symptoms from the age of 14 and I'm 21 now. I have never been diagnosed with anything at all. My GP only ever recommends the pill and never listens to me. I have been back and forth to the hospital and I have had a few scans but they have always come back clear. During my most recent A&E visit, I was told that I may have endometriosis or cysts, but they aren't willing to do anything as apparently the operations for endo don't work and cysts always come back. I've recently been to see a private endo specialist and she was great, she gave me antibiotics in case of any infection I finished that course 2 weeks ago and my pains are still there. She recommends I get a scan and if nothing showing then to proceed with a lap but to pay for them privately is so expensive, and she doesn't work with NHS so she cannot give me a recommendation which means I have to go through my GP again. Hopefully, my GP may actually listen to me 🤞 with her advice, but the waiting times are awful.

Good luck to everyone on this horrible journey and good luck

🤞

Ahh I’m so sorry to hear this, I don’t understand why it would be a blanket no to an investigating this, at least via MRI. My ultrasound showed evidence of cystic areas but was my MRI that revealed the extent of this and my adhesion.

I know it’s exhausting but please keep pushing. I had to swap GPs in the end. It genuinely seems to be luck of the draw when it comes to GPs and their attitudes towards womens health.

Good luck

It really knocked my confidence to speak out with how I am feeling because I felt like I was wrong to ask him, but I think it takes the right person to believe you. I am in the process of changing gp's so fingers crossed.

I hope everything goes ok with you starting back at your work, do you have a lot of pain around your abdomen? I have been recommended heating pads that you can stick to your abdomen / wherever hurts and you can't see them through your clothes. I haven't tried them before but it may give you some relief if that's the problem. good luck xxx

My specialist is both private and NHS so it might be worth doing some good old fashioned online searching and find one who is BSGE registered and has an NHS practice. You may need to travel a little, but it would be worth it for a proper specialist. I'm travelling from Bradford to Wakefield after being messed around for 10 years. Xxx

I have just been reading about endometriosis diet plans, they may help with bloating and apparently helps with pain.

Dogmad6 profile image
Dogmad6 in reply to Lululemon98

I have been on the low fodmap diet for a few years. It's not easy but is the only thing that has ever helped me apart from not eating at all which I've resorted to often enough in the past lol. However, nothing works entirely. Eating very little very often also helps.

Endometriosis is horrible, has to be said and I'm sorry for anyone struggling with it and to get treatment right now. Good luck xx

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