Endo and constipation

Hi all, I'm new to this forum. I've been doing lots of reading though posts on this site and on others trying to find someone similar to me (if that exists). I think it's common knowledge that endo and GI issues come hand in hand but what I want to know is it possible to have chronic GI disturbances that don't fluctuate with menstruation? I was diagnosed with endo in 2015 by lap. I mistakenly didn't see an endo specialist just an ordinary gynae who lasered off my endo which I now know doesn't really even do anything. Ive just been to see a professor who specialises in endo who confirmed that yes, ablation is ineffective and excision surgery is in fact the gold standard... anyway, the point to my post is my real issue is the chronic constipation I suffer from. I never had this problem until about 3 years ago. I had some IBS-type issues for about a year and then went on the pill to help with my period pain and from the moment I had a severe reaction to it (extreme bloating, nausea and constipation). I discontinued after about a week and the symptoms instantly subsided. A couple of weeks later the bloating and severe constipation returned and then never went away. The op report from the lap in 2015 noted moderate endo in pelvic cavity and on left ovary but specifically noted that nothing was seen on the bowel. All the research I've done says it's common to have GI issues that fluctuate due to your cycle but min don't seem to fluctuate. I'd just like to hear from anyone that has any similar symptoms to my own, or anyone that can give me any insight xxx

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  • I have the same problem, doesn't matter if I have my period or not I am forever constipated, I bloat so much I look heavily pregnant and few gas issues "tmi but I get extreme mucus from backside" but I did have rather bad endo on the bowel, my GP has been saying IBS for years but after I tried all the meds for IBS he basically said it's my endo. Hard to say if you have endo on the bowel. Maybe your consultant could help you. Sorry I'm not that helpful.

  • Hi Lovisa, no that's great, thanks so much for responding. I'm basically looking for some hope that this could possibly by the cause! Im sick of being in the dark, no one seems to be able to give me any answers. did your surgeon remove the endo from your bowel? I'm thinking it's possible I have endo on the bowel as I don't think my gynae really knew what he was looking for.., could be wrong but think it's definitely possible.

  • Mine did get removed but I have all the same symptoms again minus the bowel bleed. Were you on hormones when they did your lap? because being on the pill etc while having a lap could make the endo smaller and a lot harder to see. Have you thought about going to a BSGE clinic? They're far more experienced with endo than a normal gyno.

  • Did the constipation ever subside after the endo was removed? Even for a little bit? I haven't been to a BSGE (I actually don't know what that is!) but I am now seeing a professor that specialises in excision surgery. He seems very knowledgeable and I have good faith in him but have to wait another 12 months until my insurance company will cover the op

  • My constipation did subside as well as the bloating and bowel movement pains. I actually remember being excited I could poop like a normal human. 12months! wow :((

  • Oh wow, sounds like it was definitely the endo then. How interesting, I feel like there are a fair few people that share the same experience but don't talk about it in detail too much which is a shame. If I had known prior to my first op I would have been more diligent with the doctor I chose. Btw I was on the pill when I had my lap, I haven't wanted to touch birth control pills after the initial bad reaction I had to them :( I hope you can have your problems resolved soon. Did ur doc insert the mirena during ur lap? That's what mine wants to do. He believes the mirena will really hinder the endo regrowth

  • I had the copper coil inserted first as my body cant tolerate hormones but after 5 years of even worse pain I ended up going on mirena which only lasted roughly 15months as it agree with me. The mirena is meant to be really good but some people are just really sensitive to hormones, I did have high hopes for it but soon as my periods stopped so did my sex drive and I was constantly angry and emotionally unstable.

  • I also had chronic constipation and passing mucus from the bowel - I was diagnosed with severe rectovaginal endo and the consultant said the nodule was pressing on the bowel, and that the bowel was also pulled out of position and this was causing the constipation.

  • How is ur constipation and pain now? Have you found any relief from the surgery? It seriously sucks to be a woman sometimes!

  • Yes I'm exactly the same except mine for 100% worse after excision surgery. But I do have other symptoms such as blood an mucous.. My bowels where involved, not with endo but adhesions .. My fallopian tube was wrapped around my bowel and my ovary and endometrioma was stuck under it. They aligned all that, but the obstructions/impactions/constipation did not go away .. I'm now under another colorectal surgeon .. If it doesn't subside you should ask to see a specialist .. IBS can only be diagnosed once all the serious GI issues have been ruled out, and for that you need a colonoscopy!

  • Oh my gosh you poor thing! You must have been experiencing some pretty horrific pain if and when you did manage to make a bowel movement? I have seen numerous gastro doctors before seeing gynae's/endo specialists who have either diagnosed me with IBS or chronic slow transit constipation. Both of these diagnoses mean nothing to me particularly IBS as basically anyone with any type of stomach/bowel issue with an unidentifiable cause qualifies and all that means to me is that there is another true cause for the problems that doctors just don't have enough knowledge about. How do you try and treat something if you don't know the cause? I've also had colonoscopies, CT scans, transit studies which come back normal so I would think that if I had adhesions wrapped around my bowel it would have shown, but I really don't know whether that's the case. The whole thing is a bloody nightmare! At very least I am hoping my new doc will relieve me of the endo pain :(

  • Adhesions don't really show on any imaging .. My dad was diagnosed for years with 'cyclical sickness syndrome' which is like IBS but effects mainly the top end of the digestive tract. (He'd previously had major major surgery for oesophageal cancer). He had tasting, bloods, scans the works hence CSS diagnosis, until one day he had a strangulated bowel from adhesions. Then the GP admitted it was them all along. I have terrible pain/sickness/fatigue but the colorectal guy has said just by looking at me that my bowels are inflamed, not just full like the Drs trying to make out! No diagnosis but I dont want the IBS, like you I believe the same! There's something wrong and it isn't IBS!

  • The things that have helped me cope so far though are cutting back on veg .. especially broccoli and raw fruits .. I have all veg well cooked .. Apple juice has been amazing .. really helped .. far more than the laxitives that Doctors fobbed me off with, and walking! Seeing as no doubt whether we're diagnosed with something or not, it's going to be a chronic thing we will have to manage. My ideas may not work for you, and believe me it's no cure, I still have says I feel like I'm dying, put just putting some food for thought into you! Good luck!

  • I had the same the issue with constipation and bloating. I had a lap 4 weeks ago and 6 weeks ago had to start iron tablets for anaemia. I am quite a healthy eater but now even more to combat the constipation so lots of fibre: fruit, vegs, prunes, i make myself chia puddings with water, raspberries, dried apricots (whatever I like) and also take spirulina tablets (around 8-10 a day) dhals, etc. I haven't had any issues with constipation in the past 5 weeks which is a relief. So eating habits play a big part. I'm eating all the things I like and if I have a big meal which is definitely not ideal I make sure i rebalance my diet quickly. Someone suggested to me a gluten free diet. but in my experience cutting down wheat, specially found in processed food is so helpful. I digest homemade bread very well. But having cereals for breakfast, sandwich at lunch and pasta or pizza for dinner, not so good.

    Sad thing though is I've had my second period after the lap and it has been horribly heavy and a bit frustrated that it is not helping with my ferritin levels...

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