is it possible to suffer with endometriosis of the bowel 3 years after a full hystorectomy?

[bibatten]

I had a full hystorectomy 3 years ago after many investigations starting with endoscopy and laproscopy which resulted in being diagnosed with IBS. Still suffering was send to gynocologist who diagnosed endometriosis and we agreed for me to have a full hystorectomy to basically cure me. 3 years on I still have the bowel problems and have noticed they are worse once a month with additional symptoms of painful sex, severe tiredness and very low mood almost like PMS. could I be suffering with it in the bowel and if so how do I persuade my GP that it's not just another symptom of IBS?

[Annmarie16]

Hi I I'm also suffering after having full hysterocomty 2 years ago the doc have basicaly told me there's no more they can do for me as it adeshions scar tissue which they won't touch I have stage 4 I'm sitting here with tears running down my face for all us poor woman who are left alone to deal with this terrible illness it is also on my bowel it damage my left ovorielegyno told me once you get hysteractomy the endo can't grow back but I'm suffering everyday in pain I'm on fentilin patches and tremadol for pain I'm same sex painfully painful bowel movement always feeling so down if I was you I would go for a second opion as endo never leaves the body so yes I think it endo which is causing you this pain xx

[bibatten in reply to Annmarie16]

Yes I was told it can't grow back but I have had a week of bowel problems, my stomach has ballooned last 2 days, I have lower back pain and feel very tired and emotional just like I was pre menstral.

[Shellbell84]

Hi guys, so sorry to hear you're still suffering when you think you've done the best thing by having hysterectomy. Google "total pelvic peritoneal excision" and it will explain things better than I can. Unfortunately the nhs do not do this procedure, which is bonkers when you think how much money they would save not having to do op after op to remove the endo. Xx

[Jac19810]

Sorry to hear. I'm 32 (no kids as yet... More due to only finding not so nice 'gentlemen'), now single - so this makes decisions so hard!

I've really been through it more so this last year.

We discussed hysterectomy but I have been told that if they do it, they would still expect me to have pain and IBS symptoms - this being because they found endo on both my bowel and bladder (as well as right ovary, cervix, womb), and unless they 'cut out' those affected bits too, the pain had already been put there, regardless of hysterectomy.

I've tried a low fodmap diet (this helps the endo). I've never heard of the endo diet that's discussed on here before (I'm new to this forum). If you would like me to share details of the low fodmap - please let me know (it's quite difficult but when it helps - it really helps - although it doesn't work 100% of the time for me).

At the moment, I'm trying to work out the best treatment. Was back at hosp last Monday and it's injections or coil (scared of both if I'm honest) but in absence of hysterectomy, it's all that's left.

My laparoscopy was only a year a go so they don't want to go back in already! Saying that I saw someone who works 'with' my consultant and I'm pretty sure she thought I was putting it on, where as - the male gyno I have... I've found to be amazing and understanding.

I'm really sorry I don't have an answer, but I hope sharing the reasons they gave me against the hysterectomy may at least reassure possible reasons why.

Xx

[jane39]

Hi, I had a hysterectomy 10 years ago because I was told it would stop the endo, but the pain returned. I thought I was the only one who had the symptoms of periods ie mood swings, tiredness, tender boobs, bloating, painful sex and problems with the bowel. I had an mri scan done in september and when i went to see my gyne i got told there was nothing wrong with me even though i get all the symptoms. I felt like he thought I was making it up. Im going back to my gp on wednesday to ask for a second opinion, so hopefully will be taken seriously. Just keep pushing your gp for a second opinion, you know your body better than anyone.

Hope you get some help from the drs soon

Kim xx