Apparently .. no endo - but adhesions .. that they don't want to touch ? Added to ongoing pain from bowel issue ( DD & related )

Last 14 months

Pain and illness that has had me bed bound several times ..

5 ultrasounds

Emergency colonoscopy & biopsies

Diagnosed with diverticulitis & diverticular disease & colitis low side of colon ( low level )

Traumatic incident when inserting new Mirena coil ( resulted in admission to hospital )

Laparoscopy ( suspected endo )

No I endo found but adhesions - some dealt with but some apparently would return so untouched

Acute pain 80% of the time , offered forced menopause medication but refused now relying on zapain & buscopan

Made changes to diet ( drastically reduced red meat ) improved a lot of bowel symptoms but still left sided pain most of the time .

Do I now have to live with this forever ?

What if the pain is coming from the adhesion they WOULDNT touch ? ... feeling frustrated !

16 Replies

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  • I understand what you are going through I have had this pain for 14plus years had a lap in 2012 2 b told I had endo had another lap as the pain was getting worse just 3 weeks ago 2 b told no endo but a lot of adhesions and a lot of that is around my bowel!! I'm so lost now cause I really don't no wot is going on 😫😫 I hope you get answers soon it's crap having to take pain relief all the time!

  • Sadly a lot of what I read on the various forums is that people have to just get on with it . Like many I just feel that my quality of life could be improved but if it turns out that the adhesions that they didn't want to touch are a root of my pain then I'm not sure what I can do !

    Obviously my bowel condition caused me some pain but not all of the time when my diet is good and I'm feeling pyshically better but with constant pain and fatigue that not a common feeling lately .

  • If they diagnosed you with diverticulitis and DD have they referred you to a gastroenterologist that specialists for these conditions. They could address your bowel symptoms

  • Hi yes , I was originally under the care of gastro, hence the colonoscopy & subsequent diagnosis . I then went under the care of gynae after going into shock when having a new Mirena cool inserted ( I have a smallish fibroid but that is not causing any major issues and it's not felt it needs to be dealt with either as it may well shrunk back now I have the new Mirena ) . Once diagnosed with DD it's kind of get on with it unless you go into flare or symptoms become worse or significant changes or go into steroids which I have refused at this stage.

  • Oh ok, the thing with adhesion is it does come back and really is painful. I do agree with GrittyReads that if you're in UK have yourself seen or referred by BSGE -Endo Specialist team if you haven't been yet. All the best to you

  • Are you in the UK? If so, you should be seeing an Endo Specialist Surgeon at a BSGE Endo Clinic - not a general gynaecologist. Contact 'Endo UK' - link at the top of the page - email link and phone numbers - and talk to them about seeing a BSGE Endo specialist.

    Also follow links and posts one here about BSGE Centres, and check out posts by Lindle.

  • Even though on my laporoscopy (3rd November ) they said no endo just adhesions ? And yes I'm in the uk x

  • Left sided pain and bowel issues are typical of endo on the uterosacral ligaments with what is called an obliterated pouch of Douglas. This is when the space between the back of the uterus and bowel become full of adhesions and general gynaecologists often view it as a adhesive process. But adhesions come from somewhere and this is typical of deep endo beneath affecting the bowel. You need referral to a specialist endo centre.

  • Thank you all I've got some new likes of enquiry from this conversation !

  • Try Serrapeptase, it is said to help with tissues like adehesions and cysts. Search about it online and see if you want to give it a try. At health unlocked some ladies tried and said it worked.

  • This is interesting , I just googled it and I'm very intrigued about it - thanks for telling me x

  • Ladies I did forget to write that last November an ultrasound identified a fibroid on the back of my uterus which was considered unrelated to my issues . However when I had a break from the Mirena coil ( they asked me to do this to see if there was any connection to my pain and symptoms ) my period returned promptly and along with it some serious pain with the cycle . When I had a new Mirena I went into a shock response and was admitted to hospital with pain and uncontrolled BP. An emergency ultrasound was done and it was noted that the fibroid has grown in 7 months from .5 to 1.7.

    When I met with the gynae consultant she looked at the scans and said that the fibroid shouldn't be any issue as it was well within the muscle .. could this be a further indicator that i have endometriosis perhaps within the muscles ?

  • I was in a similar situation after my laparoscopy, although apparently negative for diverticulitis. I had endo and bowel adhesions. The surgery did not address all the endo.

    I suffered for 4 years and was often bed-bound. I couldn't get a diagnosis, although one doctor did think I had a "mild colitis". Others offered antidepressants.

    I could not figure out what the pain was. Was it endo left behind? More adhesions? Something irritating my bowel? I had several different pains all crowded in my lower left side.

    I only managed my symptoms with a full diet change. PT did not help me in this particular regard, nor did supplements or medications. Not for these particular problems.

    I ended up seeing a doctor who highly suspected celiac, even though my blood test was normal. I had to go completely gluten free (as in scrub out your kitchen, buy new kitchen gadgets, stop processed foods, etc). I also stopped soy and dairy.

    I have to take probiotics and lots of vegetables, and limit carbs to help with small intestinal bacterial overgrowth.

    I had flirted with diet changes for years with no success, because I did not know what I needed to do.

    Now my pain is much better. It's not 100%, and I pay for weeks if I mess up. If I eat soy, I can actually feel the endo lesions burning pain. Grains and processed food cause that left sided pain too. But I'm up and about and not bed-ridden. I'm no longer in 24/7 pain.

    Some pain that I had assumed was due to adhesions regrowing on my bowel in fact disappeared with food changes.

    Gastrointestinal issues can cause sneaky nutrient deficiencies, so have your doctor keep an eye on those.

    I hope this isn't too long, because I can't say if we have the same issues, but maybe this helps.

    I too refused injections (depot Lupron) and I do feel I made the right choice.

    Please PM me if I can help.

  • Thank you for your reply - it's a god send when someone seems to speak the same language about these conditions .

    It's interesting actually as I had made some major changes to diet after my really bad spell last year and had some marked improvement - sadly my pain and fatigue beat me down and all my good work went out if the window and my appetite has been so hit and miss I just ate when I felt like it.

    I went to a natural health practitioner and she was adamant that yeast is an issue in my body and that I essentially need a full detox and reboot and honestly I think I'm ready ... the way I'm seeing it that I may have to deal with pain forever but if I can lower the intensity and frequency then I need to do this . I do still have a burning ( no pun intended ) desire to discover what is making all this stuff happen but without funds to go private in the U.K. I feel I could be chasing rainbows !!

    Thank you - you may have just reinforced what I know I need to do :)

  • I'm glad it helped! I went to a natural health practitioner too, but she sold me some supplements for "detox", and it made me terribly ill. I wouldn't go through it again for the world. The diet change was what I really needed, and no side effects.

  • I know what you mean , I described the person as that as it was easier , but basically friends of mine have a business now which essentially promotes health through choice - don't sell any supplements at all - just do cooking classes and have a cafe with all vegan food and fresh juices , mostly raw plant based menu. It really helped me get back in my feet last year when I was bad with my diverticulitis and was a great way to get my energy levels up . Is definitely helps and I even managed to get off daily painkillers for a while ... but now I need to tackle that all again I think as my mojo went ! X

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