I'm still waiting a dx, despite a hysterectomy a year ago.One symptom I have had, since it all flared up 3 years ago is I will suddenly get severe cramping it my stomach, have really awful diarhea and then be in agony after. It feels like my insides are on fire. Is this an Endo symptom?
Thank you x
I get attacks like this. It feels like a twisting in my stomach and I’m in agony / feel like I might throw up. It lasts average 20 mins of me on the loo and then either I’m fine after, or still in pain. It’s painful in my lower back as well.
I'm sorry to hear you suffer with this too. I am still in pain now. I get it in my lower back too and legs. Nightmare 😭
Hi, I suffer with this sometimes. I have endo on my bowel but also have SIBO. I followed the low fodmap diet alongside support from gastro to figure out triggers, the worst for me being onions. I'm now under colorectal who've put me on pro & pre biotics, peppermint capsules & ginger tea. I'm currently on HRT for PMDD & it can still flare up despite not eating trigger foods, so it's also hormone driven for me. I'm hoping for antibiotics at my next colorectal appointment, & am waiting on endo excision & hysterectomy. Hope that's helpful.
I think mine is definitely hormonal driven too. Thank you for all of your helpful advice x
Loriiim how in the heck did you get gastro to support you with sibo?
I’ve had sibo for about a year, I was with a naturopath and we threw everything at it, pulsing oregano, zinc/magnesium to break down the biofilm ontop of it, iodine and as orbit acid! I’ve been on low fodmap, dairy free, sugar free, gluten free etc at one point I literally only ate meat for a couple weeks because it just kept coming back!! She said it was the worst case sibo she’d ever encountered and she’d been treating people with it for decades! I’ve kept a foot diary for over 6months and can’t find any trigger foods it’s driving me nuts and I’m terrified to eat anything!!
Anyway I’ve fiiiinally got a gastro appointment next week and so far whenever I’ve mentioned sibo to my dr I’ve been looked at as if I’m making something up!! So I’m loathed to mention it to them and from what I can see online it’s not really recognised here in the medical field so I’m amazed to read youve got gastro on your side with it!!!
I don’t have endo diagnosis (yet) but I’m pretty sure everything’s linked and the reason my sibo won’t go away is because of the endo! Either that or there is something scarily/seriously wrong with my lower bowel and gi tract!!
Hi, unfortunately gastro weren't much help with it. They told me that the NHS don't really test for it because the tests are inaccurate & that they like to try diet changes first, but also that it's treatable with antibiotics. I got referred to colorectal by the endo clinic due to worsening bowel symptoms for further investigation prior to my next surgery. Luckily for me the colorectal surgeon had just moved back to the UK from Australia where they have a much more holistic approach to healthcare (& SIBO is recognised), but still had to pay privately for the SIBO test through an NHS referral. I've been under their care for a year already & they've wanted to try fixing it via diet first, so still haven't had any antibiotics. I've been told SIBO die off is not pleasant to go through & it can still come back so not convinced there's an easy solution, but hoping I'll be prescribed them at my next appointment. But yeah there is a link between SIBO & endo, & IBS & endo. Rebecca Mallick posted some stats about a small study on her Instagram a year or 2 ago, which was what made me start asking about it. & Yes very difficult to work out triggers, I definitely have days/weeks/months where anything & everything triggers it, & other times it's better. Sorry you're also having such a hard time with it. I'd suggest requesting a referral to colorectal if you can, just based on bowel symptoms/dysfunction rather than going through gastro!
Loriiim
Thanks for getting back to me..hmm yes gastro have been pretty crap so far, my doctor ‘emergency’ referred me last July and I’ve only just got an appointment at the end of the month!! I was sent for an endoscopy despite me saying all my pain and issues are in the lower part of my abdomen!
It’s so frustrating about the sibo..infact it’s all bloody frustrating! Thankfully because I went to the naturopath I’ve now got 8months of dietary changes and food tracking etc with absolutely no link so they hopefully can’t slap me with an ibs diagnosis or tell me to go away and make dietary changes and ‘see what happens’! I don’t know why they don’t recognise sibo or infact any gut health disbiome problems etc you’re so lucky you got the right specialist!
I hadn’t even heard of colorectal but yes if my gastro isn’t successful I will request colorectal! I don’t have endo diagnosis (yet) and I’m not going to mention it incase they try and fob me off to gynae I’m just going to show them the excruciating pain I’ve been in the past year and that they need to check everything is working correctly/not something sinister before I’ll back down and go to different department!
The ‘sibo’ if it is that has been horrific..I can almost tell when it’s back or building back up and so that’s when I take oregano which seems to kill it off quite quickly but I’m still not sure if it is sibo or linked to cycle/endo etc would you mind if I private message you and discuss some of our symptoms? So I can possibly work out if I am right with my self diagnosis! And swap dietary/supplement tips?
Hi sorry for the delayed response. I'm quite unwell so not sure I have capacity for private messaging, but happy to share on here.
Yeah unfortunately waiting times are huge. It took a long time for me to see colorectal after my referral & appointments are 6 months apart, hence still no treatment a year after I was first seen! I hope you have some luck with gastro. They were useful in explaining that bowel tissue & the uterus are the same/similar, which is why it reacts to hormones. & At least you're going in having tried all the diets, which gives you a bit of a head start - hopefully that means they won't fob you off. Their next option for me was some CBT though 😅 Going down the colorectal route would be helpful for also checking functional testing.
Symptom wise it's quite difficult, because there's an overlap with endo & also dysfunctional/overly tight pelvic floor which I've been told is a pain response.
I have bloating which is constant & can be very uncomfortable. I suffer with cramps, shooting/stabbing pains, pressure/pain pushing into my lower back, hips & down my legs, which can make standing/walking extremely uncomfortable & can make me nauseous. I can also suffer with constipation, loose stool, sudden urgency, incomplete emptying, going multiple times a day, severe cramping before, during or after going or sharp pain up my bum when going. I also get lightning bolt pain up both my bum & vagina, which can happen at anytime, & get very bloated after sex. Sometimes during a bad flare I get pain that is absolutely paralysing & have been told this is likely due to my colon inflating with excess gas. I also suffer badly with chronic fatigue, chronic migraine, acne & have currently been off work for 3.5 years. Oddly I'm not particularly windy/gassy. I was previously only getting bowel symptoms on the lead up to/during my period, after having the mirena coil removed, but they became constant after my diagnostic endo op 2 years ago. I did get them back "under control" (affecting 2 weeks of every month) but everything has flared again since starting HRT for PMDD in September. I also had IBS symptoms previously in my early 20s (I'm 38 now) but a gluten free diet for 2 years temporarily resolved this, although found I didn't really react to gluten during the fodmap diet & had retried a gluten/dairy free diet prior to trying low fodmap.
Supplement wise I take Holland & Barrett peppermint capsules after lunch & dinner, their probiotics with a low fodmap breakfast, Invivo Pre Me prebiotic (recommended by colorectal) prior to breakfast, ginger tea, vit d, iron, vit b complex & magnesium glycinate (I find citrate makes my bowel symptoms worse). I also regularly eat kimchi & sauerkraut as directed by colorectal, & avoid foods that do make symptoms worse. I haven't heard of oregano being helpful though so will definitely look into that, thanks! Is there anything else you take that I don't?
When you do eventually see gynae for endo it's definitely worth mentioning any bowel symptoms. Obviously they can be caused by endo on the bowel but can also be present if no endo is on the bowel, due to general inflammation/excess estrogen. I hope you make some progress accessing the right care & things start to improve for you 🤞
Hello lovely, So sorry you're experiencing this.
I've had my hysterectomy in August last year and sadly they were not able to remove the rectovaginal and bowel endo. After my surgery things have not been right in the bowel movement department, and 6 months into my recovery I started getting these flare ups too. With me they last a few days but usually the worst pain is day 2 and then I also get bleeding with bowel movements.
I'm currently on hrt and looking at my diet trying to reduce gluten, diary and lactose as well as gentle movement. But still it happens.
At times it affects my lower back too and occasionally the back of my leg.
I'm so sorry you're going through this too, it certainly isn't fun 😑xx
Thank you your message. I'm so sorry you are struggling too 😔 I have very similar symptoms to you. I don't have a diagnosis, which is so frustrating as everything is pointing to endo and I have text book symptoms. Have they offered you any treatment for the endo that was left?
You're welcome lovely, just sorry we're all going through this. So very sorry you're still waiting for diagnosis. I guess it makes it a bit easier once you have it. With me because I've had a hysterectomy my gyne specialist is trying to adjust the hrt with hope that it will stop activating endo too much so now I'm on a lower dose of tibolone and we may try testosterone. Failing that the only other option is another surgery though this one would be quite involved with the bowel so I'm trying to avoid if I can.
Are you looking to see someone to get your endo diagnosis? Sending strength your way xx
Thank you. I just know once I get a diagnosis it will help, as you are constantly doubting yourself.I hope the adjusted hrt helps and you can avoid surgery 🙏 I was on Tibilone but I was still in pain and it did nothing for my menopausal symptoms.
I've been referred to a bsge specialist. I'm just so worried they won't find anything 🥹 xx
I get the feeling my insides are on fire too…or about to explode!! I’ve never had tummy issues before, but things got a bit tender a couple years back when I came of contraception for the first time in decades and then things have progressively got worse over the past 18months, particularly the last 6months!!
The pains sometimes relieved with bowel movements (not very exciting ones), other times it’s not! It’s very random and frustrating with no trigger or warning and it can wake me up in the night!
Does yours coincide with bloating?
I don’t have an endo diagnosis so I’m always wondering what In the heck is going on in my insides and whether I need to go to hospital! My partners wanted to take me on multiple occasions due to the pain I’ve been in but the one time I did go I got completely dismissed and was told nothing was wrong with me and I was essentially wasting the a&es time!! So I just sit about in pain, fretting and worrying, telling myself it passed last time and hopefully it will pass this time soon!!
Your symptoms sound very similar to mine. I can't think of what else mine can be as I've seen gastro and had a sigmoid, which was fine. Does yours get worse around your cycle? I have bloating and painful gas. It is horrible.
Maybe keep a diary? That's what I've started to do x
Mindfullness4791
I am currently going down the gastro route…waited 6months for an ‘emergency’ referral! Because I hadn’t even considered endo back then!! I’ve had endoscopy (all clear) even though I told them my pain was lower abdomen…theyre literally looking in all the wrong places! Still my partner says well at least it’s one more thing you can rule out!
Yes…I had been tracking my food and symptoms for a while, again thought it was gastro and was doing a low fodmap diet for ‘sibo’ and then done anti inflammatory/Mediterranean diet to see if I could find ‘trigger’ foods…I’ve not found a single one, only correlation I noticed was my limit for coffee is two cups and only in the morning, if I had a third or drink one past 2pm I have a major anxiety spike! But no other ‘gastro’ problems as it were!! My partner literally has no idea either, the months I was looking at ‘trigger’ foods he also couldn’t see any changes and kept saying I don’t think this had anything to do with food, you seem to be triggered randomly, sometimes by everything other times by nothing!
We fell into endo learning about 3months back so I started tracking my cycle more and YES there seems to be a correlation! My partners even begun to suggest that maybe certain foods at certain times in your cycle will trigger you for eg you can’t eat garlic when your ovulating but you can all other times!
I’ve only tracked 4 cycles and learnt;
Didn’t know ovulation pain was a thing…Always thought my ‘period/pms’ was just a 3 weeks cycle and I’d get maybe a week of ‘normalcy’ if lucky. Turns out my worst week is during ovulation, I get a few days of respite afterwards but then a week before my period the pms starts again! I get most of my bloating during ovulation.
Every other cycle for me is far worse. So out of the 4 I’ve tracked, 1&3 have been ‘mild’ 2&4 have been horrific, both in symptoms and bleeding! Though I’m in the middle of 4th cycle so am waiting until period week to confirm that but this months ‘ovulation pain’ has matched that of the severity of cycle 2…
Sorry I have no idea if any of that’s of use to you kind of rambled on there but I do find reading about other peoples woes helps me relate so maybe something helps you?
Yes I have awful bloating, look like I’m pregnant and so terrified I actually am take tests all the time! I have bad gas but I can’t seem to be able to pass it…like I literally can’t fart, I’m straining but it either hurts or is just blocked, and then I stop ovulation and bam I can suddenly pass it normally! Bunch of other symptoms like ‘pressure on my bladder’ mid ovulation. Constipation and then diarrhoea which are sort of linked to cycle. Painful bowel movements during ovulation and period but ok otherwise. Random painful sex, can’t find a correlation for that one! And extreme pms/pmdd, still not quite tracked that up either yet!
Anyway feel free to pm me if you want to discuss symptoms! Think I’ve seen you reply on some other threads at we do sound very similar!
Thank you for your reply. It is really useful to hear other people's experiences. You do sound similar to me. It's just a nightmare isn't it 😔 I feel so alone with it all, especially after having a full hysterectomy. I'm waiting to see a specialist but my fear is they won't find anything! My husband has Crohns and my bowel symptoms are worse than his! It's really hard for me now as I don't have a cycle, due to having no ovaries, so the pain is more consistent. I went out to eat yesterday and the same thing happened and we had to come home. I actually don't want to eat out anymore and there is a lot of anxiety linked to eating now when I'm out.
Sex for me isn't painful during but can be afterwards.
I do hope you get some answers soon xx
Newbie & scared (sorry if tmi) 
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