Hi guys I have been experiencing severe bowel and period symptoms for 10 years. Unfortunately I have had my endo diagnostic surgery cancelled twice and am still awaiting. I feel like my symptoms will never improve.
Aside from extremely heavy and painful periods I have extreme bloating (can look 9 months pregnant), constant discomfort in my abdo, constantly varying between constipation and diarrhoea, bowel symptoms are worsened by certain foods and painful bowel movements.
In my 10 years of looking for answers I’ve been tested for just about everything except endo! And have even been told the pain is all in my head
I just wanted to ask someone with bowel endo if these symptoms are what you experience. I experience severe bowel symptoms daily and they are worse when on my period. All comments appreciated, thank you x
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HoneyBee64
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Us women have all our bits in the same area that said when my period arrived my bowel seemed to go into over drive. The two combined I decided to sleep in the spare room. I had Endo scar tissue in the ascending colon. Pain varies as we are all individuals, I have a high pain threshold but can tell you that even I could not cope well without medication, so don't let anyone tell you it's in the mind
Until your surgery is re-scheduled suggest you get a phone consultation with your GP to discuss pain relief, in my case mefenamic acid was my saviour. Keep safe!
Thanks for the reply. Yes I take mefenamic acid and that helps to an extent, I also take regular buscopan and paracetamol with lots of peppermint tea in between!
I was told 6 years ago I have IBS but after spending time changing my diet and excluding food groups nothing made a difference. I eventually had a colonoscopy which revealed bowel polyps that I had removed. After that combined with the mirena coil my symptoms were almost completely gone except for when I drank alot of alcohol. Since having my coil removed and a haemorragic ovarian cyst in January I have now been left in agony for months and I am too awaiting a laparoscopy for endometriosis testing. If your all clear and havent had a colonoscopy i would ask your gp for one to check and look for any abnormalities in your bowel and colon.
Yes I’ve always been told it’s IBS when tests don’t show up anything. I had a colonoscopy in jan 2019 because doctors thought I had IBD but that came back normal. I tried the coil and that did not agree with me! So I take the pill back to back but even without periods I have bad bowel symptoms, particularly when I am meant to have a period at the end of the pill pack. I hope your laparoscopy gives you some answers!xx
No unfortunately the surgery had been cancelled twice and now because of Covid-19 it will mostly likely be at the end of the year. Do you have pain even when not on a period ??
At the moment it’s uncomfortable most of the time, pain increases if Im active, cleaning type thing, or after eating. If I limit what I eat it’s easier, equivalent of a piece of toast is sort of ok.
If I don’t take something for the bowel such as Laxido it becomes worse.
Period started last Sunday, had hoped it might help things ease off, unfortunately not yet.
I am exactly the same, by the end of the day my stomach is so distended because of being on my feet all day/eating certain foods. I take regular movicol when needed, didn’t find laxido to agree with me.
Are you having surgery to remove the endo from your bowel??x
What does movicol taste like? Hate the taste of the other, but it does work.
Have to see how Zoladex goes for the next five months. Then MRI to see what’s happening. I think he’s hoping natural menopause will kick in and reduce symptoms whilst having jabs. Mentioned in the letter further surgery could have complications. When I suggested MRI now, he said they’d only have to do one after the Zoladex anyway. I’m getting tempted by plan b and see how much it would cost.
So I follow a strict gluten free diet and have done for 8 years. High processed foods and foods high in sugar and dairy set me off as well as foods that are hard to digest such as red meat. Honestly the list is endless but the foods that agree the most with me are what I call ‘dry foods’ like rice cakes and gf porridge and green bananas are large part of my diet.
There are a few flavours of movicol but I always request the unflavoured/plain movicol and then you can mix it with squash - sooo much better than laxido! If you are in the uk GPs prefer to give you laxido because it is a cheaper brand but you could request movicol and see if it agrees with you better.
Yes same symptons & same approach...ibs, just part of period, stress etc. If i get constipation then the pain is quite bad & i end up collapsing. My symptons in bowel & bladder used to worsen during period but its now happening even when im not in my cycle...may be stress who knows?
Hope you get the treatment you need & hope medical science moves to the 21st century with this disease. Stay safe & well.
I don’t consider myself to be a stressed person but I have tried things like mindfulness because I know sometimes we don’t always ‘feel’ stressed but unfortunately this as not helped.
Oh no I hope you manage to get your symptoms under control. It’s hard to get in touch with GPs at the moment because of the pandemic and the stress of the corona virus probably doesn’t help!
You know your own body, don’t let them tell you otherwise.
I suffer with my bowel and endo also. More so round my periods.
I seen a new consultant who told me to look at a low FODMAP diet, this is something they advise for IBS, now I know you don’t have IBS but by cutting out some of the things on the high list it hasn’t half helped my tummy.
I am a healthy eater and to see some of the healthy fruit and veg on the high side was surprising, lots kick off my stomach.
Different things for different people so would be trial and error for yourself but I would recommend taking a look as something you may be eating could also be irritating your bowel and anything is worth a try when you’re doubled up in pain.
I have tried every diet out there over the past 10 years! I have formulated my own diet from trying them all, I’m gluten free and avoid high sugar and fructose and that helps to a degree but still in a lot of pain/discomfort.
I hope you get your lap soon as the only way to be sure. I hope you're able to have it with an Endometriosis specialist centre that has Gynae and Gastro doctors that specialise in Endo to get the right treatment.
I had some similar symptoms and although my specialist couldn't see the endo on my bowel or colon from the MRI he did find it in my colon during my excision lap and found it was completely distended so that was causing a lot of my pain too.
It sounds like you're doing all the right things to help manage the pain in the meantime. I hope you get surgery soon for official diagnosis and treatment.
Hi, sorry to jump into this conversation. But how could the doctor find it "in" your colon during a lap?
I thought they could only see undo on your internal organs during a lap not inside internal organs? I'm only asking because I had a lap the other week and they found it all over my bladder, so bad they didn't touch it.
But they won't refer me to a specialist NHS centre because it's not "bad' enough!!!! I'm stuck in the middle. They haven't mentioned mu bowel and my bowel issues are TERRIBLE!!! Also tried loads of diets.
I'm just worried because it was a "general gyne" they have missed it and now I'm being fobbed off xx
Sorry for the confusion, they basically whatever they could see bowel related!
I found the endo specialist centre myself and got my GP to refer me there as I didn't want to go back to my local consultant that doesn't specialise in Endo.
Sorry to hear they found it so bad in your lap. I aIso have it on my bladder but we chose not to touch it at the moment as I'm lucky that I don't have major negative symptoms with my bladder. The solution for me would have been to remove the endo mass and reduce the size of my bladder which we both decided we didn't want to do at the moment so I'm going to leave it and monitor it unless I develop symptoms.
Sorry to hear about your pain, I’m having fibriods and endometriosis is attached to my bowel, it’s been hell since 2 weeks ago, no painkillers worked for it, it’s like going through labour pain, I soak myself thrice a day with Epsom salt but still no relieve and bum is like a stabbing pain can’t even sit for 5 mins, I have been off sick from work for 8 days now and it will just vanish on its on like a ghost and come back again,
I’m sorry to hear you are suffering so much! I have been told I have a fibroid around 1cm - the doctors have said this is so small they doubt it will cause my any symptoms. Did the Epsom salts usually help? I have not tried them before x
Epson salt didn’t work, but was just trying everything available, I had my fibriods done in 2014 May but the endometriosis wasn’t done because it was at the back of my uterus, so in July the pain came back again, then my former gp said that means it wasn’t the fibriods that was given me pain that it was the endometriosis, so I’m still suffering as I’m typing
Hi there, I’ve experienced extreme bowel symptoms esp during period when endo is flared up, and consultant has confirmed endo in bowel and rectum.
The key thing to helping me has been to follow a low FODMAP diet and to combine this with anti-inflammatory diet. Over a couple of months of doing this my symptoms started to much improve, and the length of time I have them for is now much reduced to just a few days during my period (26 months later) rather than for circa 2/3rds of the month. I do follow the dietary intervention stuff seriously as this has been the only thing long term that’s helped manage my endo. Whilst I’ve been on and off various pills and meds to manage things for years, they for me masked what was actually going on and I had major extensive endo removal from several places during my last endoscopy June 18.
I’ve also found yoga and incorporating regular non high impact exercise has helped a lot too.
Give the diet and lifestyle changes a try for a good few months and see if you improve.
Hi Honeybee. I agree with Mimi555. Like her, I have put myself on an exclusion diet as I have been left without medical support after investigative lap and my symptoms considerably worsened. So, since May 2019, I am free from :gluten, dairy, soya, caffeine, chocolate (these are the major culprits that bring in a lot of oestrogen, bloating and pain), also apple, brown rice, and due to associated IC, tomato purée and hot spices. I also complement with magnesium glycenate, vitamin D, iron. It helps a lot, it's worth trying and reintroduce one food back after 1 month to see if your tummy reacts. The GPs are useless in helping. I was also told at a London hospital that 50% of women with endo will have IBS. So, it's definitely not in your head. My meals are also incorporated in the family meals so that psychologically I don't feel excluded, ie when I cook mashed potatoes for them, I will cook a mix of normal potatoes with sweet potatoes, add a bit of almond or coconut milk, and the stocks of gluten free pasta have not been depleted in the shops 😊Stay safe and I hope you find what works for you. x
Hi, I was just wondering are u on any contraception? I know it sounds a bit stupid! but I have stage 4 endo everything is stuck together and it's on my bowel and maybe in my bowel too, I've suffered with a lot of pain but at the minute I've found that 1 naproxen 2 times a day, 2 codeine 4 times a day, 2 paracetamol 4 times a day and Morphine (when needed) and having the deo injection (contraception) has helped as at the mo I dont have periods 👍some days are still very crap and the pain is still there but a lot more manageable. Hope this has helped but these lovely ladies have already given u lots of good advice, good luck and hope u get some answers xx
Hi, yes I take the pill back to back for as long as I can before spotting so I don’t have a period but still experience pain. I think I definitely need to look into some extra pain relief! GPs are so reluctant to give out stronger pain relief x
Hi. I follow a similar diet to Anastasia17 - no wheat, no gluten, no dairy, no soya, no caffeine, no alcohol, low sugar which includes limiting fruit intake. I also make sure any meat is grass fed, organic, never corn fed! and fish is wild rather than farmed. I try and stick to the Clean 15/Dirty Dozen lists and eat plenty of dark green leafy veg, and cruciferous veg - these contain DIM and this helps your liver process excess estrogens from your body. Generally the Auto Immune Paleo diet has worked best for me, in conjunction with seeing a kineseologist who also does scar tissue release therapy. I also found the book 'Body Belief' by Aimee Raupp extremely helpful as it taught me week by week about the elimination diet, and what to look out for. It also helped me to think about what might be causing or triggering my symptoms. I saw an Endo specialist last March with chronic symptoms. He said I would need a Lap and bowel disection. In the 13 months since I have implemented all of the above and my symptoms are now hugely improved. The last 2 months I haven't even taken paracetamol! I know it sounds like a lot of work, but it's definitely worth it. If you have Netflicks you could also watch the programme called 'Heal'. It made me realise just how much you can do for yourself and how the medical profession have a very distinct way of looking at these things.
Good luck my lovely. I hope you get sorted as I know how horrible it is to be pacing around in pain, not knowing what to do for the best x x
I had a sigmoidoscopy in January and was due to see the Gynaecologist and the General Surgeon together in May but that has now been cancelled. I'm hoping they might do another MRI before they schedule the surgery as I really don't want the bowel dissection with a risk of stoma bag 😔
The difficulty is.. they don't think we can improve our symptoms without them. However I'm determined to prove them wrong.
I forgot to mention earlier... also reduce your exposure to chemicals in beauty products, cleaning products, scented candles, air freshers etc. Every little bit gives your body the chance to rebalance itself 😉
Hi 👋🏼 I hope you are well. I just wondered if I could pick your brains regarding the AIP diet as I find it very conflicting. In the respect that most women (50%) with endo also have IBS - like me. Anyone struggling with IBS knows foods high in FODMAPS are one of the biggest no-no’s . After doing some research on the AIP diet ( I was really keen to give it a go ) I noticed the majority of foods ‘to eat’ are all the high FODMAP foods? I just wondered if you knew anymore about the science behind it. As the though of eating primarily ( and not much else ) of meat and all of the high FODMAPS would just have my guts , bowls and Endo in an absolute tizzy. How have you found it? Xx
I ham sorry to hear you are suffering. I had endo that had infiltrated my bowel wall. I ended up having a resection as the pain was unbearable. I went the toilet a lot, and it hurt when I did. During my period I was going about 10 times a day. I again have issues with my bowel (I think my endo is flaring again) but they think I also have IBS and microscopic colitis. I am vegan and eat generally healthily, eating fried food etc makes me ill. I hope you get some answers
Yes, I was a lot better. I had my resection in 2016 and was pain free (from my endo) for a few years. I still feel loads better than I did, it is just slowly getting worse - mainly my pelvic pain x
Hello 👋🏼 just wanted to assure you , you’re not alone!!
Your post is almost identical to my everyday sufferings and as with a lot of us my IBS has always been to blame.
But in my case about 9 months after being diagnosed with stage 2 endo in my pelvis , I was finally diagnosed with severe endo in my bowel which has attached my womb to rectum. Now obviously I’m not saying that’s what is happening with you, but please know no one would take me seriously and I do suffer with every single aliment you’re suffering with.
Again as with a lot of us I had finally been referred to an endo specialist as once in your bowel or bladder you’re considered at severe stage and can be under an Endometriosis specialist but with Covid-19 this appointment was cancelled 😞 !!!!!!!!!!!
I’m under the understanding once everything gets back up and running bowel surgery is the likely route.
I too am pretty much 100% gluten free all day every day but I won’t lie as you know it’s incredibly restrictive so every now and again I do have wheat products but I’m very inconsistent , one day I could be fine eating like this...the next day not , or I can have something totally clean , gluten free , low FODMAP , low sugar etc and have a massive flare up?!??! So , I feel you 🙋🏽♀️
If you ever want to chat , please feel free to DM me. It’s actually comforting now I’m finally at a ‘knowing’ stage to talk to share my journey and also nice to have someone to share symptoms which I think are genuinely un-acknowledged ...... but they are CRAP, really life ruiningly crap!!
Not to mention that being a woman ... makes life for a very very self-conscious one x
Honestly the past 10 years I have been made to feel like I am crazy so to know there are people out there that experience the same things as me is so reassuring.
I was meant to have my diagnostic surgery in March, I was gowned up ready for theatre and consented by the endo specialist but they cancelled last minute because of staffing. And because of Covid-19 it has been cancelled again understandably. But I have been told by the specialist I am a priority was this has settled down.
Yes!! I can even eat nothing all day and bam I look 9 months pregnant. Some days you can do all you can to prevent a flare up but nothing will stop it.
That would be great thank you, it has stopped me from doing so much but I can’t let it stop me anymore.
I can’t say 100% that it’s on my bowel that’s why I’m waiting for a lap and started this post to see if my symptoms are similar to bowel endo patients.
I have seen an endo specialist and they are convinced it’s on my bowel just have to have surgery to confirm.
If you have bowel endo they should have seen in during surgery. Do you know if they took any photos in your surgery ?? Could ask to see them x
My reply was to K-Endo, sorry. I have endo on my bladder they saw that. But they won't refer me to a specialist to deal with it. I can only get a referral if its DIE. and theres an MRI for that but I'm struggling to get it. I'm convinced I have it on or in my bowel but I'm not sure they were that thorough in my operation as it was just a general gyne that done it x
Hi HoneyBee64. I'm in a very similar position to yourself. I am 23 and have suffered since about the age of 12 with severe bowel symptoms: abdominal pain and cramping, on/off constipation and diarrhea (worse at time of period), shooting pains in my rectum during period (and now during ovulation too), painful sexual intercourse. Severe bloating is the worst symptom I experience. I was given a pregnancy test at the doctors at the tender age of 12 because my stomach looked just about ready to pop! Needless to say I was not even sexually active!!!! My doctors agreed to finally do some food tests (all negative). It was dismissed as IBS, since
I have since switched doctors and, whilst being treated for depression, was able to discuss the pain and discomfort I feel as a result of these symptoms and how they impact my mental health. I recently had an ultrasound and they found fluid filled cysts on my ovaries and fluid in the pouch of Douglas. I am due a laparoscopy to confirm endo as soon as the coronavirus situation is sorted out.
Please don't feel like you are alone and know that the pain and what you're experiencing is absolutely not in your head! Keep fighting and eventually you will find a medical professional who is willing to take you seriously and find out what is wrong. Good luck and best wishes xxxx
Yes I’ve had 5 surgeries so far but still not much relief from the pain unfortunately. Mine seems to spread to more organs every time they open me up x
Hi! I know this post is a bit old but just came across this now! Hope you are feeling better. Have you had your surgery? I have similar symptoms to what you have described. Couple of years ago I was diagnosed with endo and they told me I also had a lot in my intestines. I suffer with constipation and diarrhoea. Sometimes both at the same time! It got better after my lap but a year later now and it is starting to feel bad again. Gp told me I have ibs but I’m convinced everything has to do with endo. Laxido did not help me at all but now I have aloe Vera capsules and they help when I’m constipated or bloated. It’s very frustrating at times so totally understand you! Take care
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hopefully you eventually can have surgery for your endo?? Hope the pain eases for you x
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