Please, can anyone give me any ideas how I can re-set my digestive system - I am so miserable.

[Roselilysnowdrop]

Sorry this is so long but I wanted to list everything and not miss anything out in the hope someone may be able to advise or help me in any way(I am really getting desperate).

I feel the NHS have given up on me yet I feel worse now than ever before and I don't know what else I can do to help myself and wonder if anyone has been in this position and have managed to some how 're-set' their unruly digestive system?

I first developed gut issues almost 30 years ago. I was 25 and going through a stressful time. Out of the blue one day I soiled myself at work, no warning signs, nothing. I was mortified, this had never happened to me before. From that day in 1998 my digestive system has never been the same. GP simply said it was IBS and that was that.

The first 6 years were awful, I tried everything I could and spent a small fortune on alternative things but little helped. Then I fell pregnant and was symptom free for a full year, I was even able to consume dairy which is something I really struggle with. I do believe hormones and stress play a very large part in my gut issues history.

My 30's were up and down with some really bad and some really good days. I found that stress and certain foods were big triggers. In my late 30's a dietitian introduced me to the low fodmap diet which helped, somewhat. During this time I could enjoy a lot of foods.

However, when I got to the age of 45 it all went crazy. Admittedly, a lot of stress hit at this time - 5 years of daily school refusal from my ds (he's a lot better now hes an adult), MIL terminally ill, my own dm was diagnosed with Alzheimer's and my own perimenopause journey began (hormones and I do not mix well). Over these last 7 years my digestive issues have gone into overdrive and each year things are getting worse, there are only around 3 days a month where I actually feel 'normal' within my digestive system (those days are bliss but I keep a food and symptom dairy and have no idea what causes the issues).

I struggle with the following symptoms:-

Need to use the loo as soon as I wake in the morning and am often woken around 4am with gurgling guts - often need the loo several times in the AM and up until 12-1pm my guts are very unsettled

TMI (I promise I am not a poo troll) stool often has a consistency of peanut butter/wet mud - weirdly hard to push out even though it's super soft and requires LOTS of wiping. I sometimes can have 'normal' stool or even hard/constipated type it can swop and change yet I never change my diet that much so no idea why this occurs

Nausea and a gnawing acidic pain/discomfort (nausea often mid cycle and for 10 days or so)

Reflux and burping

An irritating cough to clear phlegm at the back of my throat

Post-nasal drip after eating

I often have a sore tongue

Tinnitus and a full feeling in ear (this has all been checked with an MRI)

I FEEL THE ABOVE 6 THINGS ARE ALL CONNECTED

Bloating (stomach bloats between 3-6pm regardless of when or what I have eaten)

Farting excessively some evenings yet other times nothing (can not see from food dairy why this occurs)

Excessive gurgling

This year in particular my gastro-colic reflex has become super activated and I often need or feel like I need to use the loo after eating - this makes eating out a nightmare

Pains in stomach after eating (sometimes/sometimes not yet no idea why)

In general an overall feeling of malaise within the whole of my digestive system which never feels settled or calm.

Over the last 6 years I have been back and forth to see my gastroenertologist and have had various tests,

2019 - Colonoscopy along with a gastroscope - gastroscope included biopsies for Coeliac disease, H Pylori, ulcers etc.
2023 - Another Colonoscopy this time with biopsies for microscopic colitis
2023 - A pill camera endoscopy to check my small intestine
2023 - Bile Acid Malabsorption scan - negative
2022 -Stool test for SIBO which came back positive for hydrogen SIBO however, my gastroenterologist (and 2 dietitians) are not convinced of this as they say the tests are unreliable however, I tried Rifaximin anyhow but it has not helped, in fact I feel worse

Private (and very expensive) stool test in 2022 came back with gut dysbiosis - don't think I needed to spend £450 to be told that tbh!

I have tried all of the recommended IBS medication and very few help long term. I have also tried various anti-depressants which made the loose stool and nausea worse and TCA's made me feel like a zombie.
PPI's give me a worsening of diarrhoea.
Imodium helps sometimes and I often feel great the day after taking it but more often than not it just slows down the super soft stool making it even harder to pass and eventually causing more issues (I only take half a tablet at a time). Mebeverine gives me blinding headaches. Buscopan does nothing. Colpermin helps somewhat so that is about the only med I take now.

My gastro tells me she no longer knows what to offer and puts 'Health Anxiety' at the top of all my follow up letters - I really do not have health anxiety, I am simply tired and worn down from having to put up with daily uncomfortable and embarrassing digestive issues, how can that not cause some degree of anxiety? Also I have never been diagnosed with health anxiety by any other health professional so it irks me she has come to this conclusion and seems satisfied with that diagnosis to my physical issues. Who the heck would put themselves through all of the above tests for the fun of it? - Tubes stuck down your throat and up your bum are far from fun.

I really don't know what I can do anymore to help myself, I have come to a dead end. I have spent a small fortune over the years trying to feel better, but to no avail.

Sorry to continue with the long list of things and hats off to you if you are still here but these are the things I have tried and am still trying.

Low fodmap diet - I have gone through this diet with several state registered dietitians over many years that I now know the diet well. I am still mainly low fodmap and eating the foods I know I am ok with and avoiding the ones I absolutely know are not great for me which include, dairy, certain fruits and veg, eggs & chicken (this has only been the last 4 years and runs in the family for some reason), coffee, sugar, high fat foods, fibre (all kinds of fibre give me diarrhoea), beef, beans and legumes, any artificial sweeteners (I only drink water). I have a love/hate relationship with wheat/gluten - I love bread, it's the food of the gods imo but I don't think my body likes it - I once went a full year without it but craved it every single day. I have tried eating just sourdough bread but I think it upsets me as well and I can not stand any GF breads, they are all horrible. This week I have added wheat/gluten to my list of no-go foods in the hope that I may see some improvement (although the thought of no bread is miserable).

I have tried various probiotics but they either do nothing or make me feel worse, the same with digestive enzymes. Aloe vera although my gastro told me not to consume this as it can turn the colon black!

I exercise every day, have spent a fortune on gut directed hypnotherapy both face to face and apps/downloads (currently back on it), I listen to the Calm app every night, I practise yoga, try to get to bed at a decent hour although my sleep is often disturbed now in peri (I can't take HRT) and I try to live as gentle and easy going life as possible which is hard as I help care for my elderly mum who is now in the advancing stages of her Alzheimer's that in itself is enough stress for a lifetime.

I have not worked for the last year due to my issues but I need to return to work. I need to earn money but I need to feel well in order to return to work, it's a horrible vicious cycle. I have booked an appointment with a local wellbeing clinic (recommended to me by a NHS GP) in the hope they will be able to help but I am nervous about spending money on this as I have wasted so much with various private specialists and alternative health practitioners and am still in this position but I no longer know what to do. It's a truly miserable way to live, ruled by your gut.

Anyhoo, if you have reached the end, thank you and if you are able to suggest something, anything that I may not have thought of I would be so grateful.

Acupuncture can also treat TMJ very successfully. The more you write the more I think a nervous system in overdrive could be the source.

I only developed adenomyosis in the last few years (previous MRI and CT scans never picked it up before).

I had a uterine ablation in 2022, I developed excessive pain during each period 6 months post-ablation when I had never experienced period pain every before, my endo specialist said to me if my endo had been diagnosed at the time I would not have been a good candidate for the ablation and he never performs them on his patients (my ablation was performed by a standard gynae) . I wish I had never had the ablation, it's been a huge mistake, every period I am in so much pain. I currently have my 'period', no bleeding due to the scar tissue but the pain is simply dreadful.

I am a member of most of the adenomyosis (and endometriosis) FB groups. I do notice that most on the groups end up going for hysterectomies, I live in hope mine will help a lot with my gut issues. My gynae will not even discuss my gut issues and refuses to agree with me that they are probably connected. He's not someone I would have chosen to be my gynae specialist had I gone private but I can't really make too much fuss on the NHS!

Not sure if the prucalopride would work well for me, it says it increases peristalsis which I have an issue with already. I will look into that a bit further, thanks.

No - I have issues all the time. Holidays and weekends make no difference to me sadly.

I would love to have acupuncture, I have read a lot about it but it's just too expensive for me right now sadly.

Sorry to come back to this after a while. I’ve been away - there’s this new thing - if you see your gp three times with something that isn’t diagnosed/treated - they have to properly look into it not just fob you off. I would suggest by extension to my earlier post that this rule alongside your current gastro consultants dismissive ineptitude would strengthen your request for a referral to a new gastro consultant to start from the ground up but if you get this you need to advocate better and keep a full on food/symptoms diary, get some allergy testing and go into that with a good record of elimination diets to show how things have been affecting it. If not already ask for a dietician referral so you can show this was properly managed.

Perhaps with the other things - a full blood work up to include kidney liver other organ functions nutrients like b12 vit d - hormones etc. just the whole shebang. Just to see if anything’s lurking that’s been missed while you’ve been going round the houses.

and then talk to gp about how to rule out things like EDS.

have they ruled out that the endometriosis has affected the bowel?

Thank you Whatsthatsheila

I have heard of the new GP rule (think it's called Jess's Rule). I have had enough of my current GP surgery tbh, so have changed surgeries completely. I have a first appointment with a new GP next week. I remain hopeful.

I also have an appointment with a local private wellbeing clinic this afternoon, they have a GP on site and several health consultants (also NHS consultants), they run various tests etc. I really can not afford to go private for anything but have reached a point where I feel so unwell that I am just going to stick it all on my credit card and worry about it later!

My endo consultant will not discuss the possibility of my digestive issues being connected to my gynae ones, he was actually quite dismissive over that when I tried to discuss it yet contradicted himself by saying that when he does the excision surgery, during the hysterectomy if he finds any bowel endo he will have to leave that and I will have to go through further surgery with a colorectal surgeon on hand?!

Are these consultants at the same hospital? Have you got an alternative one?! They both sound horrific

I mean it’s completely understandable that he’s not going to physically touch the bowel and honestly I wouldn’t think they would - however with the background of endo and bowel issues it’s a fair question to be asking of him “is the endo tissue possibly affecting the bowel?”

it is also fair to say that sometimes they don’t know the true extent of the endo tissue until they go in but if he doesn’t know yet that’s also fair enough but why can’t he just say that instead of being a twat

Different ones, I believe. I'll find out soon as my appointment is at 1.30pm today.

I do find everything my endo gynae says to be a bit of a contradiction. I know he won't know the full extent of my issues until I go into surgery but on one hand he is saying I most probably don't have bowel endo yet he then says that about the colorectal surgeon then when you look at my MRI results it says 'deep infiltrating endo'? I am very confused by him.

I really don't warm to him tbh (he's very abrupt when it's just me there but as nice as pie when my dh accompanies me to consultations), it's the NHS so I don't have many other options and don't have £10k+ for private surgery. It is also a BSGE specialist centre and the nearest one from me is miles away so I am stuck with him (all the others have really long waiting times).

Can you ask for a second opinion to of another gynecology consultant in the department or hospital? You are allowed to do that again under Martha's Law I think and even without that it's your right to get a 2nd opinion.

You can still see your gyne consultant whilst you wait. Perhaps email the gynaecology ward/bookings and ask about any cancellations for another consultant, a consultant with sub-specialism in endometriosis particularly deep infiltrating endometriosis and/or colorectal. Ask about being placed on their lists or anything really. They may have bios on the hospital website or a LinkedIn so use that to add details on sub-specialism

Then also perhaps write an email to your consultant secretary asking if they can get a colorectal registrar or consultant to join your appointment for 10 ish minutes to give their thoughts. I'd also email colorectal/general surgery and ask if they'd do that and if they can be on standby when you have excision surgery so if it is in the bowels you don't need a another surgery they can have your permission to take out as much as they can. I know this happens quite regularly in places I know etc.

Also say to your consultant that you think a 2nd opinion might be useful because of age, menopause, you think they are unsure on the bowel issues, or bladder issues and you want a consultant with experience in endo and urology. Even if some of this isn't true other than him being unsure on the bowels, it's fine. You can either be straight up or lie if you'd feel better doing that.

Also ask to see the consultant radiologist’s report of the MRI if you haven't already. It should be longer than the summary your gyne consultant gives. Email again the ward or records at the hospital or consultants secretary.

I'm so sorry if you've mentioned before but my brain fog is quite bad, what medication are you currently taking?

Have you seen your new GP? If so have they ordered any tests etc for the bowel and pelvic stuff? When you see them definitely make a detailed list of everything, AI can be helpful for this, also have good articles e.g NHS website, mayo or Cleveland clinic etc to point anything out ams Endometriosis UK have loads of detailed info. They have a nurse support helpline you can call, maybe call before your gyne appointment to get an overview of things to say, how to advocate for certain things, any potential treatments etc.

https://www.endometriosis-uk.org/nurse-support

https://www.endometriosis-uk.org/surgery-endometriosis
Useful info on surgery, how it works etc.
https://www.endometriosis-uk.org/past-webinars
That is past webinars from consultant gynes, often specialised in endo talking about loads of topics, meds, surgery, bowel endo etc.
https://www.endometriosis-uk.org/webinar/bowel-endometriosis
This one is specific to bowel endo if you want to listen/watch.

I'm sure some of this might not be helpful, but these are some ideas I thought of.

There are approx three endo specialists at my hospital but they all have very long waiting lists (my ds's gf is on a long waiting list with one of the others and it is just as long as mine). We don't have another endo specialist centre for miles. The gynae I really wanted to see has a very, very long waiting list due to his popularity, I did pay to see him privately, he is absolutely brilliant but sadly I just can not afford the surgery privately and I would go back down on the waiting list if I were to request to see him on the NHS. I have contacted them several times and find them all very unhelpful. I raised a complaint last year with PALS as I have been a patient of the same department for many many years and wanted to know how and why my endo was not picked up until I was 50 despite having issues since the age of 12, they really did not want to know. I simply received a 'Sorry we will make sure this does not happen again' phone call from the manager.

I can try and speak to one of the colorectal surgeons but I don't hold up much hope but they are listed on the BSGE website so will go from there. However, the hospital is really not great , it has recently received a poor CQC rating.

I have no other appointments booked with my gynae now, I am on the waiting list for the hysterectomy/excision surgery and the next appointment will be my pre-assessment one which obviously won't be with a consultant. I have messaged the secretary but have had nothing back.

I have a copy of the MRI report, it states the areas where the endo was detected and the conclusion simply states - 'Diffuse adenomyosis and deep endometriosis with no invasive nodules identified'

I am currently taking no medication atm, my appointment with my new GP is next week, I requested a double appointment but they could only offer a single, I would have to wait 5 weeks for a double so took the appointment to at least get a foot in the door so to speak, so hopefully I can get somewhere with her, fingers crossed.

Thank you so much for your help, it's much appreciated.

I would look for colorectal surgeons on the hospital website (will likely also have bios on their sub-specialisms so look under General surgery first), also don't contact them directly, contact the ward and a few consultant secretaries and ask. Email and also call. If you don't see it on the hospital's individual website, check the trusts as it may be under specialities on that website, and they show which consultant is at which hospital in the trust. Also some consultants work across more than one hospital as well.

I am sorry about the department and all the failings you describe, as I said at the end, some of these won't work but just some thoughts I had. Do you know if any hospitals near you are tertiary centers for OBGYN? That would mean they'd be more quipped with endo, and gyne conditions, so under the right to choose you could switch hospitals. Is there any reason you can't use right to choose to change to the nearest BGSE center? Under the NHS there are schemes to help with additional travel costs due to needing specialised care or previous poor care, or lack of income, being on benefits, students etc and lots of other criteria. A HC2 form means they cover all costs, so prescriptions, travel etc and HC3 is they cover some, way more people are eligible than they realise so it is a good idea to do the eligibility quiz, ask your local council and see. Also with your symptoms, bleeding etc, you may be eligible for a disabled bus and/or train pass to reduce costs as well.

Considering the failings you've described across this thread it might be a good risk to take imo, and the things your consultant has said etc are not promising. Don't ask your consultant yet, but defintely contact the ward, bookings etc of the hospital and see how it would work, when you do the right to choose referral you get a code and log in and see a list of the hospitals. Anyways if you search your local area or the area of the nearest BGSE hospital, go down to the part for gynaecology and you can see the weeks for waiting for surgery, other treatment, clinic appointments etc. Also contact them, talk about your history, guilt trip if you must on how appalling it is that under them it too 12 years and their dismissal of your potential bowel endo.

When did you email the secretary? What was the email about? If she doesn't respond then you should send a strongly wardered follow-up email, maybe use AI a little to be assertive, CC in the ward admin manager/team etc, also say that you'll contact the hospital complaints (many have a policy of 3-5 working days, and forms where you can place a complaint, from minor to major ones, so check the website it will be on there, or it may be on the Trust's website as well) and/or say you'll contact the hospital/Trusts' ICB and complain as well otherwise, that often kicks them into gear. But also call them, and keep calling when you can, once a day till you get through. Its hard but you sort of need to be like this.

My point on the MRI report is that summary won't be the full thing. That is likely the gyne consultants' summary, the MRI will have been read by a consultant radiologist first, they do a report (2-4 weeks for this) and then send it to x consultant so in this case gyne. They look at the scans and radiologist report and dictate summary, secretaries type it up. There will be a record of the longer consultant radiologists report, in my experiences, this often has extra things you weren't told and was helpful for me. Contact records of the hospital, the gyne ward as well and ask, also contact radiology as I have found that to be quicker and easier at times.

How much pain are you in? Some things you might want to bring up to try: antispasmodic meds (they help relax the bowel and reduce bowel cramps), tranexamic acid or norethisterone for any heavy bleeding if you have any, also perhaps codeine or a stronger opioid. I'd advoid NSAIDs due to the bowel issues. Do you get a lot of nausea or vomiting? If so bring up starting some anti-emetics as well. Would you consider topical progesterone or pessaries to help, contraception or you don't want that route?

Defintely when preparing notes for the GP appointment, think about which main symptoms bother you, what you want to get out of the appointment, any meds or treatments you want to try, any tests you want done? I normally split my lists into this. It may be useful to show it all to the GP so they can see it all and then ask questions off of it, and then it may make the 10 minutes get into more detail, where you can. Also get them to book you a follow-up in the appointment, as they can do that in the system, and you'll likely get one earlier, so defiantly bring it up.

I'm sorry I can't be more helpful, i know some things may seem pointless, but you won't lose anything from trying it, emailing x, or calling or just asking whether x is possible. Worse case is they say no and nothing changes, so why not just do it, you have to use lots of different methods even if its demoralising, there's no point just being like it won't work or aphetic to an idea the second you hear it. I do understand from my personal experience, how hard it is to not know what is wrong, to be in pain and be sick, and not have answers, so be kind to yourself.

Maybe look up consultants at your local private hospitals. They normally have a fairly detailed profile about their special interests and where they work in the NHS.
This might help inform who you would want ri be referred to for an NHS second opinion.