So depressed knowing that my life will always be dominated by my disruptive digestive system and nothing I’ve thrown at this has worked.

[Roselilysnowdrop]

When I was first diagnosed with functional gut disorders (IBS and functional dyspepsia) almost 30 years ago I always had hope that things would get better the older I got but sadly that just hasn’t been the case.

Despite endless tests nothing has been found and after many years as her patient my gastroenterologist has now discharged me.

Things really aren’t improving as I age at all, in fact perimenopause and life’s stresses at this age have exacerbated everything.

I find it so deeply depressing that despite spending all my spare money on private doctors and tests, endless dietitians/nutritionists appointments, all kinds of supplements and foods/diets, CBT therapy, hypnosis, counselling (you name it, I’ve probably tried it), I am worse now than I’ve ever been. I only work 8 hours a week these days because of my issues which leaves me tight with money and even more low.

Because all tests are clear no one really takes this seriously yet my days are dominated by intermittent symptoms throughout the day- horrible nausea, burping, bloating, lots of uncomfortable gas, gurglings, feeling horrible after eating and therefore not enjoying food one little bit, and a very unpredictable bowel which means I could need the toilet at a moments notice or can flip the other way and struggle. I also seem to have developed a strong gastro colic reflex so can sometimes need the loo soon after eating which makes eating out with family and friends a nightmare.

I feel that I treat my body kindly, I am slim, I exercise, get 8 hours of sleep every night, drink only water, follow a careful diet by avoiding all my known triggers (dairy, wheat/gluten, certain gas forming foods and all low fodmap). I am very careful with my fibre intake also because the slightest increase has me dashing to the loo, same with fat/greasy foods and artificial sweeteners. I’ve kept a food and symptom diary for years and can’t really see many connections or patterns to how my body reacts every day.

No doctor will look at me in a holistic way, will not look at my other issues and connect any dots, I often wonder if my issues may be connected. I’m always utterly exhausted, blood tests are all within range and ‘normal’ so maybe the tiredness is more psychological? I was diagnosed last year, at the age of 52 with inattentive adhd but have not really looked into this much everyone I’ve told have just rolled their eyes and said everyone seems to have adhd these days so I’m kind of embarrassed about it all tbh and as a consequence I’ve shelved my thoughts on this and kind of wish I’d not bothered with the assessment. I did try adhd medication but as usual it made my digestive system worse than usual. I’ve tried endless antidepressants but they all upset me, I’m currently on low dose Nortriptyline but it’s far from ideal for me.

The only thing that I’m clinging on to some hope over is the fact I have had gyane issues most of my adult life and was diagnosed with adenomyosis a few years ago. My uterus is also very retroverted and my latest mri looks (to my very untrained eye) as though it sits on my lower bowel and I’m wondering if this could be causing any issues? (Happy to upload the image if anyone could give me their opinion?). I’m due a hysterectomy in a few months and am living in hope it may help but I’m dreading the surgery so not too optimistic about it all, my gyane won’t even discuss my digestive woes, he says they have nothing to do with my gynae issues?!

Sorry for such long ramblings but I wonder if anyone could relate and if they ever got over this (physically or mentally).

I am the same. I can have urgent diarrhoea straight after finishing a meal. You can just buy a radar key. I got one from Argos or amazon. Dr referred me to a gastroenterologist as I had finally had enough of this.
I never eat out or even at work because of it. It's bad enough when I am at home.
I get so anxious if I have to travel in a car which I am sure makes it worse.
I have had a colonoscopy but have not got the results of the biopsies yet and have had a sechat scan for bam as I have had my gallbladder out. He has prescribed colestyramine to see whether it will help with the diarrhoea but its early days at the moment. I do find I am really bad if I don't eat in the day then eat in the evening that's why I think it might be bam. Then again it can happen any time of day without warning. One minute I am fine and the next I am not. People don't seem to understand how urgent it can be if they have not gone through it. They think you can just wait to find a toilet I can't.

I’ve had a debilitatingly bad back since my late 30s, to the point I had to change careers and was unable to live a normal life. At one point we were looking at adapting our house to accommodate the mobility aids I was on the verge of needing. I fought to get diagnosed with hypermobile EDS but even then the pain didn’t improve despite all the physio, medication, etc..

It was only when I had a hysterectomy last year at age 46 for adenomyosis (which I was told was unrelated) that it was discovered I also had endometriosis and my uterus was so enlarged that it was the size of a 4 month pregnancy. The surgery was complicated and I had a post-surgical abscess and infection, but as soon as my uterus was out my back pain virtually disappeared. I lost nearly 10 years of my life to chronic pain and though I’m so grateful to have my life back, I’m also angry that it took that long for the real cause to be discovered and treated.

I wouldn’t be at all surprised if they find endo all over your guts when they open you up. Keep pushing and advocating for yourself, and I hope your surgery is as life changing for you as it has been for me.

Im the same, it makes me so angry that people struggle so much and I read all the time how women are dismissed and told this level of struggling and pain are expected and normal. Something has to change.

I think the more you learn and the more you read about others, the more frustrating it is.

I too feel lucky my local hospital is a specialist endometriosis hospital but it also makes me more angry that when I saw gynae in both 2006 and 2020, why on earth no one even considered endometriosis. It wasnt even mentioned to me until 2025 and actually prior to that, the first time it was ever suggested was on Mumsnet. You would think gynaecologists in an endometriosis specialist hospital should at least consider it as a possibility and have appropriate training.

I do hope the push with endometriosis in the news means better training may come in the future

@Roselilysnowdrop MRI's don't show adhesions unless they're huge, or deep tucked away endo. Laparoscopy is literally the only way to diagnose conclusively. In spite of them never ever being able to locate on of her ovaries because it was tethered behind everything there was never any concern or joining of dots. Women are so used to dealing with monthly pain it's just a fact of life for so many.

@Roselilysnowdrop thank you. Sorry for your experiences too. We have all been through a lot. Each post I read horrifies me further at how poor the treatment is and how much we have been dismissed and let down. Your description of periods as like an outer body experience is good. I have that too. It's awful. I am progesterone intolerant so can't take HRT. Perhaps surgery would help. A diagnosis is the first step though. What's 44 more weeks when I've already waited about 25 years 😃

I found the same with Amitriptyline. I take only 5mg of Nortriptyline now but I only want to be on it a minimal amount of time, I was getting to the point that I couldn't leave the house without needing to go to the loo when I was out, it's stopped that but I feel like a zombie half the time which I do not like at all.

He suggested this when I was 46 and I asked him how many 46 year olds can you name who are fully retired? Stupid man.

I do have a lovely DH, he pays the bills etc but I need to work more hours. The last few years have mean shite due to one thing or another.

I feel a huge amount of guilt that he has to pick up the slack. I'm just praying once I've had the hysterectomy I can get back to my normal job and start contributing again.

There is so much online regarding MCAS, I've always overlooked it though, wouldn't I have hives and skin irritations if I had that though?

I totally understand. I haven't been for a meal in so long.The last time was my son's 18th and I spent half the evening in the loos, he's 21 in October and wants a family meal somewhere nice, I have to pretend I'm looking forward to it but secretly dreading it.

I have a terrible habit of skipping lunch so I can get out and about (and do my little job), if I do eat then I'll need the loo and that's not always convenient but like you say, when I eventually eat dinner all hell breaks loose!

Yes give the vegan yoghurt a try! I got to the point id try anything and it so glad this works. Let me know how you get on xx

It's amazing how many physical issues appear to be related to endometriosis and Adenomyosis, I see so many people on the support groups mention these things all the time, why the heck won't doctors join the dots?

When I my first consultation with my endo gynae he was asking about my pain and asking me to rate it 0-10, I said it was difficult to give him an exact answer because it's often hard for me to establish whether the pain is gynae or due to my digestive issues, he waved his hand in front of face and said 'No, no - we are not hear to discuss gut issues, I'm specifically asking about your gynae pain'. I just could not get him to understand that sometimes it's difficult to differentiate the pain as gynae or bowel as it all often feels it's all in one place/area. He wouldn't have any of it, just appeared more frustrated with me for daring to mention that I suffer with my guts.

It's so frustrating. I'd even mentioned to my gynae that my sister was diagnosed in her 40's yet he never connected any dots so I never thought for a second I may have it.

My DD18 has suffered from awful periods for several years now, I asked her GP if she could be referred to gynae just to double check things and she said no, I asked why and mentioned both myself and sister have endometriosis and she told me I was projecting my own fears on to my daughter and even if she did have endometriosis there was nothing a gynae could do to treat it at her young age that she, as a GP couldn't also do 🤷

I have just looked at your blood results and your B12 is low. B12 is responsible for the production of red blood cells and DNA. It is also very necessary for nerve cell production. Low levels can absolutely affect bowel motility as a result. I suggest that you go to GP and get yourself some B12 shots pretty damn quick.

@Roselilysnowdropgosh those Drs treating you like that is shocking. It's awful. I fantasise about getting a diagnosis and then marching into see every single one who has dismissed me and rubbished my queries and I'll say, "remember when you said X was impossible/NA/blah blah well shove this up your arse"

This really makes me angry. I am honestly finding that with Doctors like this you have to push. I now see the GP who runs our practice because the junior GPs were so dismissive and I decided I had enough and put in a complaint. They might see me as awkward but I am actually listened to now so it was worth it. My old GP was amazing but he retired.

I would genuinely complain about the GP who refused to refer your Daughter. I would say in the complaint that you want it in writing why your GP refused to acknowledge and investigate your Daughter's pain and would like to see another GP who wont be so dismissive.

My Daughter has her own issues including suspected hEDS yet im having to again pay privately to get her seen as the NHS are incredibly dismissive and I am sick of it and need her to see someone with knowledge. The GP we saw was lovely but I knew more than he did and he admitted as much, so he wasnt willing to diagnose or help (despite me giving him a literal diagnosis checklist made for GPs) and rheumatology now refuse to deal with anything related to hypermobility so we are having to see a connective tissue specialist.

I feel like in the last year the only time we have got any help or progress is when we paid for private specialists but ive made sure to research, find people that know what they are doing so I have confidence. The endometriosis specialist I saw was amazing and if I could have afforded surgery with him I would have, but because he is amazing he charges a lot.

She refuses. I did go in a month or so ago with these Thriva results so she tested again but only did the serum B12 which is 330 and as the range was something like 200-700 she said she was happy it was in range. I've consulted with around 4 different GPs over this issue but they all tell me my B12 is fine. It was the main reason I had my active B12 checked with Thriva but they don't seem to check.for that on the NHS.

The problem is that I've exhausted all of my savings in the desperate hope it feeling better and I feel I keep barking up all the wrong trees, or at least that's what the NHS seems to be telling me. I feel that the years of being anaemic with ferritin lower than 4 has buggered me up. Previous GP left me to find this out once I had bloods as the pre op for my ablation. Gynae wouldn't do it until I'd had iron infusions.

I have orders some sublingual B complex in the hope it may help somewhat?

It really does make you feel that way, doesn't it? I simply hate that few doctors will look at a patient holistically, they have a speciality and that's all they focus on. They seem content on people struggling for years on end.

Sometimes it makes me feel like a slab of meat!

I’ve suffered for years with intermittent bloating and digestive issues. Then I watched a program which mentioned the vagus and how this can affect the gut, mine feels as it’s literally stopped some days, no hunger pangs, no digestive noises, nothing. Then I googled if my M.S can affect the Vegas nerve and hey presto it can.

Below is an interesting read, it’s amazing how uninformed specialists are, so very frustrating. Hopefully your hysterectomy will help, adenomyosis is bloody painful. I’ve had endometriosis and so has my daughter, hers was so bad especially with the bleeding that she’s had a hysterectomy. As women we have so much more to endure with fluctuating hormones, so shit.

I take Optibac probiotic gummies and always start the day with a teaspoon of turmeric, honey, hot water and a little coconut milk. I have read that turmeric (curcumin) directly activates the vegus nerve and promotes the release of ACh which functions as an anti inflammatory. It helps me and whenever I stop it my gut deteriorates 🤗

https://www.google.co.uk/url?q=internationalendo.com/endometriosis-gastroparesis-vagus-nerveinflammation/&sa=U&ved=2ahUKEwiHjb3xzfqVAxXbZkEAHVXzDP8QFnoECAoQAg&usg=AOvVaw2Sxiypf597Yyki8ZNSsN4U

https://www.google.co.uk/url?q=pmc.ncbi.nlm.nih.gov/articles/PMC5756354/&sa=U&ved=2ahUKEwjKoeXZ0PqVAxWuTEEAHWjtJy4QFnoECAUQAg&usg=AOvVaw3dZTivi7EeofqdsJpQD8Tr

You don’t need disability allowance you can just buy a radar card I think.

This is the issue I'm coming across time and again. I had the same GP from the age of 8 until my first child was born when I was 32. She was beyond fantastic, I would have trusted her with my life, she knew my history, my mum's and my sisters as she was also their GP, she never had to search through records she instantly knew how to treat me but she reached retirement age and buggered off to live abroad, how dare she lol! No GP since has ever left me with any such confidence.

I did complain about the GP my daughter saw and we refused to see her again, she has since left that practice and I've moved DD to over to mine but the GP there won't refer her until she has tried the mini pill or coil but they are just band aids, if she does have endometriosis it's not going to fix things just hold it back a while, so it's a long journey ahead.

I hope you manage to get somewhere with your dd's health, it's beyond frustrating when we are paying for a health system yet have to shell out for private care simply to be heard. I paid to see a private GP a few months out of desperation but it's was £200 down the drain because despite handing over a list of symptoms her advise at the end of the consultation was to try Sertraline, again.

I think in your shoes for your Daughter I would ask them to put it in writing that they are refusing to refer your Daughter for specialist input for her pain unless she tries a hormone treatment that she isnt comfortable with. I think when they are asked to put it in writing, they often then consider a little more carefully.

I would tell them you would like a referral and again if they say no ask them to put it in writing they are refusing. Then take those things to the practice manager and tell them that unless you get some help, you are escalating a complaint. I would also consider reaching out to your MP if you have a good one. Mine was fantastic and not only rushed through my hospital appointment but also addressed the wider issue of women's healthcare with some senior people which I hope has opened some more conversations.

I do find that you have to make noise to be heard and it shouldn't be necessary but it feels like thats the way you have to be lately.

As a final resort, do you have another GP surgery you can transfer to?

Could you afford a one off appointment with an endometriosis specialist for your Daughter? My appointment cost around £300 and they wrote to my GP, I did end up paying more as I had an MRI but he then wrote to my GP with a treatment plan. I was being refused HRT until I had surgery to remove the cyst, so he did all the relevant tests to say it was fine and that allowed me to access HRT. He also told them I had adenomyosis and meant they finally took my pain seriously and he has written out a plan for possible treatment options so they now have a clear path. I will be seeing my surgeon in January and if his plan differs from this one, I will be taking this and asking why his is different. I think the specialist appointment has just given me confidence to say this is what I need.

Thankfully that particular GP has left that surgery and I have recently moved myself and dd over to my mothers surgery, they have been fantastic with her, she is in the advanced stages of dementia and the two female GPs have gone out of their way to help. I have seen one for myself a few times and she has been very helpful so dd will be making an appointment there soon and hopefully they will take her seriously.

I believe for endometriosis hormone treatments are the main treatment still. When I had to see a gynae about something a couple of years ago I was told that not everyone requires a definitive diagnosis for endo but are happy to use hormone treatments to control the symptoms. Others are unreasonably unwilling to take the hormones without a definitive diagnosis via laparoscopic investigation. This bloody annoyed me as who takes powerful medication without confirming they actually need it. Would never happen to a man.

I had horrendous pain when going to the toilet, lots of “javelin arse” pain and fear of going - it would be painful but going relieves the pain. Random diarrhoea after eating various things etc

it was stage 4 deep infiltrating endo, my bowel was folded in half