Bowel endo

Hi all, was wondering if anyone has had endo on their bowel and what they do to get rid of it. I have it on my pouch of Douglas but since having a laparoscopy the pain hasn't changed at all. My gynae has now discharged me and said he has done all he can and referred me to pain management clinic. He has diagnosed me with chronic pelvic pain syndrome for no obvious cause as my biopsy was clear of endo. I have seen the pictures and something is there, I don't understand how this is possible to have a diagnosis like this and told to just put up with it :( It's now 10 months I've been in constant daily pain and I don't no what to do anymore, I feel like maybe I have it in my bowel as I get shooting stabbing pains in my rectum ( sorry ) when I have a period but they won't do anymore tests xx

5 Replies

  • Hi Georgie just seen your post. I had a diagnostic Laproscopy and Hysteroscopy done of fri and I was told very briefly for all of 10 mins by my consultant gynie while feeling pants and drained from anesthetic and in pain that I had stage 4 severe endo which had compacted and fused around my reproductive organs, bladder and bowel I am waiting to see him on 2nd June for post op consultation other than that I don't know 100% what was found.I also have had severe pain in pelvic area and abdomen and also severe sharp stabbing pains in my rectum and have pain when expressing my bowels and also other things like heavy painful periods etc. I have asked my consultants secretary yesterday for a full copy of report of findings. I need to know before seeing him exactly what is going on so I can make a clear decsion along with questions as to the next stages of my health is. He mentioned that a hysterectomy was in order and to have this done in around 3-4 months....I tell you what I nearly passed out there and then WHATTTTT!!!! I have had some amazing advice and looked at a number of posts from a godsend of a lady called lindle. I so feel you pain I'm sorry I really can't be of much help to you at this moment in time :( there are some amazing people on here who will help you, you have certainly come to the right place, it can be addictive. Do not my love suffer in silence this is a serious condition and as ladies suffering from this horrendous condition need to be heard and not fobbed off...keep ya chin up and believe me hopefully there will be light at the end of the tunnel. Take Care and look after yourself xxx

  • It is your right and your choice of which consultant you see...

    Was you seen at a endometriosis treatment centre?

    If not that is your next step where abouts do you live and I'll look up your nearest centre. X

  • Hi - please click on my user name and read my posts, especially on Pouch of Douglas endo and how to find a specialist x

  • Hi Georgia

    That is terrible. You definitely need to be referred somewhere. Has your GP not been more supportive?

    The endo isn't going to go away so surely you need better help than just pain management which is helpful but not in the long-term. I have endo on my bowel too and totally feel for you.

    All the best, Penny x

  • Hi, I had Bowel Endo, I had Endo everywhere. I know how you feel. I was in agony day and night, evey minute of the day. No pain meds worked for me. I went to pain management and they gave me TENs machine to use which didn't help at all. I was at my lowest point in life. Non doctor would do anything to help me. I tried ending my life because I couldn't cope with the pains and was told its all in my head.

    My hubby took me to see a private doctor and he did some scans and found Endo and adhiesions stuck together everywhere. I was happy that he found something and said he could help me.

    I had keyhole surgery to remove all Endo and adhiesions from everywhere and now I'm recovering nicely. The only pain I have now is due to the operation I had.

    I'm so glad I went private, although it cost a fortune and had to take out a loan As I couldn't afford the operation. But it was worth it I'm getting my life back had so many operations and non of them helped me until I went to the private doctor.


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