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).

It was the MRI that showed the bowel stuck to the uterus but a general internal scan that showed my large cysts and Fribroids.
My whole process took around 58 weeks from the ultra sound. But a year and half from the initial blood test that started it all.
note down every single thing that you know is not normal.
I was seen by a BSGE specialist and she acknowledged everything I said. Ultimately the internal scan done by her got me expedited because it was so bad.
Outside looking in though you’ll never have known as I spent years covering it all up x

That’s simply not true - not all endometriosis patients have issues from pain with sex.

Being in an endometriosis group its shocking how many women are given incorrect information by doctors and even gynaecologists who you think would have the correct info about endometriosis and adenomyosis, but so many dont.
Frequently women are told it doesnt cause pain outside of periods, young women are told they are too young for it to be endometriosis, endometriosis is only bad period pain so can't be causing x,y or z issue. There are so many incorrect things told to women who are seemingly more informed than the doctors they are relying on to help them.

I really hope something changes in the future as it shouldn't take as long as it does to get help. Ive had issues with periods since I was a teen and chronic pain for over 20 years but it took until this year to get diagnosed and even then only the simple endometriosis could be treated. I have to now wait until January to even have a follow up to discuss the plan of what will happen about everything that couldn't be removed, which was most of it as my surgeon wasnt a specialist so therefore said he could only remove anything simple.

Yup it’s dreadful @holidayhelpneeded1 I quite agree. 1 in 7 women have this - you’d think it would be a bit more understood by now

@Ljnags JFC that's so poor. It's great you kept pushing. I have had so many similar issues to you and until recently had a very restricted diet as have so many issues with digestion I've become scared to eat and thought maybe it's an intoleranc, maybe it's this or that etc. I am now eating more widely again and the issues are still there. I will chase up the scan results and ask for MRI and maybe laparoscopy and explain all my digestion/diaphragm issues worsen significantly around my period which is also like a bomb going off for 4 days.

Wishing you well with your recovery from the hysterectomy

I have hypermobility and ND traits and I had horrendous gut issues until my mid twenties. I was lucky enough to move to another country many years ago and it is a country where the food culture was entirely different. We had the same meal twice a day for months on end (Lentil curry, various pickles, plain rice and various vegetable curry’s) twice a day I had no UPF at all in that time. I was there nearly 6 months and I came home to a completely healed gut. I am in my 50s now and I always have believed that moving completely out of the food culture I was in was what gave my gut the chance to recover from whatever was in my diet here that was affecting it and I’m thankful it stayed that way.

Thank you.

@Comtesse @holidayhelpneeded1 @Ljnags hi everyone, OP I hope you don't mind me asking on your thread 🤞🏻 I had a transvaginal scan last week. On my NHS app it says 'pelvis abnormal adenomyosis referred to gynaecology'. I have rung the hospital and they said I am now on the hold list to be triaged by the team which may mean discharge, medication advice or an appt with consultant for investigation. It takes up to 13 weeks to be triaged and up to 44 weeks to be seen. My GP has not mentioned my digestion issues on the referral to gynae so I'm not confident that they will warrant further investigation for possible endometriosis. I think I might ask my GP to add onto the referral that I have digestion issues and suspect endometriosis. Will this help do you think? Does anyone have any advice of what if anything I can do or is it just a waiting game? I'm worried they're just going to tell me to take meds and get the coil which is not an option for me as I'm severely progesterone intolerant and having bad digestion issues which seem to be getting worse.

I would definitely ask for a referral to include endometriosis as if adenomyosis is there, there is a good chance. But I would look for your nearest endometriosis specialist and ask to be sent there because too many regular gynaes are a bit useless going by my own experience and things ive read online. Its worth waiting a bit longer for a specialist. If you could afford around £300, it might even be worth having a one off consultation with an endometriosis specialist and they could then write to your GP with a suggestion of treatment path.

I saw a fantastic specialist in Colchester, it cost me more as I had an MRI too (thats when the adenomyosis was found) and he wrote to my GP and set out a treatment plan in order with suggestions for treatment. I needed HRT too due to perimenopause so he wrote down the plan for that too and it really helped.

Have you tried the mirena coil? If not it may be worth giving it a go. I cant say either way whether it works or not yet as I had mine put in 9 weeks ago during my surgery but I said I would give it a try. I have had major issues with all other types of progesterone (ive tried the mini pill, micronised and a synthetic type) where it disagrees with me so much, the last one I only managed 3 days. It messes with my sleep, my mental health, I feel on edge and awful. However so far with the coil its tolerable, it isnt however helping my pain at all, in fact its worse but ive heard stories of it settling down and said I would try and give it 6 months so im pushing through. But just to say it might be the best progesterone option.

Ultimately im not sure what else can be done if the coil doesnt work for me because I really need the estrogen so need some form of progesterone to stop the endometriosis just feeding on the estrogen so no clue what the plan is if this doesnt work.

So for me other things ive tried are an anti inflammatory diet, again im not seeing benefits yet but am keeping on to see. Lots of people on the endometriosis groups say NAC is really helpful so this may be a supplement to try, but for me it annoyed my gut but may give it another go. Some people have found help from GLP-1 again I havent seen this effect but might be worth a try.

The waits to see someone are awful, I had a 65 week wait to even see gynae and then 60 weeks for surgery. I then had a 7 month wait for the follow up after surgery and when that comes around, if the coil isnt helping then no doubt the next step will be surgery for either a hysterectomy, removal of all the endometriosis they couldn't remove or both but I imagine that will involve another wait on the list to see the endometriosis specialist and then another wait on the surgery list. So I cant imagine im getting help any time soon.

Can I ask who you saw in Colchester? This is my nearest city.

I am with the endo team at Colchester General. When I discovered the wait to see anyone was almost a year I paid to see Mr Whitlow privately, he was fantastic and I've never heard a bad word said about him but sadly I couldn't afford the surgery at The Oaks so had to stick with the NHS and disappointingly he wasn't assigned as my NHS gynae.

I was wondering if you have seen anyone different as I'm contemplating seeing either Mr Whitlow or someone else privately to get a second opinion. My gynae talks over me the whole time and doesn't answer any of my questions with any clarity he just tells me everyone is different so he can't tell my the answer to my questions which is really frustrating especially as I am so near to surgery which I'm dreading but would probably dread it less if I had a more approachable doctor.

It was indeed Barry Whitlow but I think there are a couple in Colchester with good reviews. Looking at his fees he charges significantly more than a lot of others but if you can afford it, he is worth it. But for me the surgery was going to be £8k+ and he said I should budget £20k for a hysterectomy and that is a lot more than other surgeons.

For me the benefit is in his initial expertise.

He did an MRI and then had a follow up and he wrote a letter outlining a treatment plan with basically a list of options if each one doesnt work, so my GP had an idea of what to do. If I needed more advice I would definitely go back for a consultation but his surgery fees are on the high end. If I could afford it, I would go with him for sure. But the surgeons at my local hospital who are endometriosis specialists are apparently very good too and hopefully now its been found, I can be put on their lists.

The Oaks quoted £15 for a hysterectomy with Mr Whitlow but sadly I just don't have the funds for that.

My NHS consult is Mr Rao, I've read he's a good surgeon but he has zero bedside manner and is so rude and abrupt, he upsets me every time I see him! I've never said that about any health professionals ever and I've seen quite a few over the years.

In retrospect I should have asked to be transferred over to someone else when I had my first disappointing consultation with him but it's too late for me to go back to square one now.

I hope you don't have to wait too long for your appointment with the NHS, I hope it all goes well.

I still think I would ask them if you could transfer. I would be honest and say you dont feel listened to and would appreciate being changed, it shouldn't put you back on the list.

But honestly my surgeon who did my surgery in June seemed a bit dismissive and I was honestly worried he wouldn't check properly, things would be missed etc. He even brushed off the thing found on my MRI as it was unspecified thickening, he said oh that could be nothing despite Mr Whitlow thinking it was endometriosis. So when he dismissed that too I thought he is going to say nothing was found.

It came to surgery day and he was really lovely and after came round and spoke to me about what was found and felt like a different doctor.

I think if nothing else consider the hysterectomy is being done but if you arent happy then definitely consider asking for a future appointment with someone else.

I will also say I thought my surgery was going to be with the consultant I had previously seen but when it got to 2 weeks before I was told it was with someone else, so that may happen too.

This ^

I'm audhd and have had lifelong problems with my stomach, gallbladder and now the pancreas is joining in. I react to food and medications and have to be very careful about what goes into the stomach. Apparently, this is common amongst ND people and is related to EDS and MCAS (I have symptoms of both, but NHS don't investigate).

All you can do is control the symptoms. Research like mad as to what might help. Autistic kids who restrict their own diet might be doing it instinctively because other foods are causing them discomfort. Sensory issues don't always occur externally.

I've had a nightmare trying to get my previous GP to consider that I may have EFS, I'm certain many people iny filly have it and I'm sure it's part of my issues too.

I was only diagnosed with ADHD last year but I often wonder if I have autism too, I have so many autistic traits. Again, I am sure most of physical (and mental) health issues are all interconnected.

The half life of tranexamic acid is very short. It doesn’t hang around in your system at all. As in miss a dose and flooding is back. It’s also non-hormonal. I’d recommend it, it was a game changer for me.