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

167 replies

Roselilysnowdrop · 28/07/2026 10:28

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).

OP posts:
JJkate · 30/07/2026 22:00

magicpractice · 30/07/2026 20:17

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

Omg! So sorry. How was it diagnosed in the end?

Comtesse · 30/07/2026 22:01

Roselilysnowdrop · 30/07/2026 15:03

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 🤷

God endometriosis is such a crock. It takes so long to diagnose. Basically it’s ignored until it causes infertility, what a damn shame.

magicpractice · 30/07/2026 22:03

JJkate · 30/07/2026 22:00

Omg! So sorry. How was it diagnosed in the end?

Ultrasound and MRI then a lengthy excision surgery

JJkate · 30/07/2026 22:07

magicpractice · 30/07/2026 22:03

Ultrasound and MRI then a lengthy excision surgery

Can I ask how you manage it and how you are now? I have been for an ultrasound today, waiting for results now. I'm progesterone intolerant and not keen on taking meds. If it does turn out to be this.

magicpractice · 30/07/2026 22:17

JJkate · 30/07/2026 22:07

Can I ask how you manage it and how you are now? I have been for an ultrasound today, waiting for results now. I'm progesterone intolerant and not keen on taking meds. If it does turn out to be this.

Mostly the excision surgery, they cut away everything they saw (took 8.5hrs and 2 surgeons) and I had a mirena which I’m ok with. Not usually great with hormones but it’s been fine

Roselilysnowdrop · 30/07/2026 22:20

Comtesse · 30/07/2026 22:01

God endometriosis is such a crock. It takes so long to diagnose. Basically it’s ignored until it causes infertility, what a damn shame.

Mine wasn’t picked up until I pushed for the first MRI in 2023, I was 50 at the time and I’ve had issues since my periods started at 12. Fertility issues for 7 years and still no one ever suggested endo. I have been a patient at the same gynae department with the same gynaecologist since 2013, I’ve had so many hysteroscopies, endless uterine polyp removals, a myosure procedure and then the ablation. When the ablation had obviously failed my gynae tried fobbing me off with pain killers, if I’d never pushed for that first mri I’d still be none the wiser.

Women’s gynae healthcare is disgraceful.

OP posts:
OneOfEachPlease · 30/07/2026 22:29

Really sorry to hear how much you’ve been suffering, OP! I read your post thinking that it sounds like a more extreme version of me. I don’t think I have Endo. But I do have the urgent diarrhoea, iron problems, mood issues, and perimenopause has really affected me. I finally got seen by a decent GP because my mood issues related to my cycle had gotten so bad. I’ve recently been diagnosed with PMDD and being put on HRT which the GP thinks will help with my gut issues too. But it’s a long experimental road because you have to do it for three months and then review and then any changes need three more months etc. I do find that thinking about it less and leaning into the good days does help. There’s clearly a big brain/gut connection and when my mood is bad or I’m ovulating or on my period my gut issues are much worse. Like you, I’m now on a wheat free, dairy free and low FODMAP diet and it is really restricting and depressing. And while between that and the HRT I am much better, I still have to be so careful about what I eat, particularly quantities and anything even slightly unusual. It’s really depressing!

holidayhelpneeded1 · 30/07/2026 22:57

JJkate · 30/07/2026 22:07

Can I ask how you manage it and how you are now? I have been for an ultrasound today, waiting for results now. I'm progesterone intolerant and not keen on taking meds. If it does turn out to be this.

I have issues with progesterone too, I started HRT and tried all types of progesterone with no luck. Following my surgery they put in the mirena coil and am trying that at the moment but no clue if it will be helpful or not. It definitely isnt affecting me like other types of progesterone so far.

If the coil doesnt work I have no clue what the options are, especially as ive been told if the coil doesnt help the next step for the adenomyosis is hysterectomy, so I have no clue what I do for progesterone and I need the estrogen because before I started HRT I felt awful.

Francestein · 31/07/2026 04:03

I would absolutely take a bloody good multivitamin with full Vit B complex if I were you @Roselilysnowdrop

DeftGoldHedgehog · 31/07/2026 04:08

I have PCOS and a retroverted uterus. Endometriosis and cysts caused my IBS issues.

Snippit · 31/07/2026 04:56

OneOfEachPlease · 30/07/2026 22:29

Really sorry to hear how much you’ve been suffering, OP! I read your post thinking that it sounds like a more extreme version of me. I don’t think I have Endo. But I do have the urgent diarrhoea, iron problems, mood issues, and perimenopause has really affected me. I finally got seen by a decent GP because my mood issues related to my cycle had gotten so bad. I’ve recently been diagnosed with PMDD and being put on HRT which the GP thinks will help with my gut issues too. But it’s a long experimental road because you have to do it for three months and then review and then any changes need three more months etc. I do find that thinking about it less and leaning into the good days does help. There’s clearly a big brain/gut connection and when my mood is bad or I’m ovulating or on my period my gut issues are much worse. Like you, I’m now on a wheat free, dairy free and low FODMAP diet and it is really restricting and depressing. And while between that and the HRT I am much better, I still have to be so careful about what I eat, particularly quantities and anything even slightly unusual. It’s really depressing!

Have a Google about the vegus nerve and it’s affect on the gut, it’s really interesting 🤗

JJkate · 31/07/2026 06:32

holidayhelpneeded1 · 30/07/2026 22:57

I have issues with progesterone too, I started HRT and tried all types of progesterone with no luck. Following my surgery they put in the mirena coil and am trying that at the moment but no clue if it will be helpful or not. It definitely isnt affecting me like other types of progesterone so far.

If the coil doesnt work I have no clue what the options are, especially as ive been told if the coil doesnt help the next step for the adenomyosis is hysterectomy, so I have no clue what I do for progesterone and I need the estrogen because before I started HRT I felt awful.

Shit! How long have you had the merina for? I'm so averse to trying it as any form of progesterone and pretty much any meds really make me feel awful. I wonder if it's related to my bowel issues, something to do with how my body processes meds means I can't filter them or something. Even PPIs made me feel very unwell and took me months to recover from after stopping. GP prescribed me traxanamic acid and I'm scared to try that too as no doubt I'd get awful side effects there too. I'm low on iron and levels only gone up to 51 despite being on iron tablets for almost a year and still losing a lot of my hair which has been devastating.

JJkate · 31/07/2026 06:36

@holidayhelpneeded1 how do you feel about having a hysterectomy?

JJkate · 31/07/2026 06:52

magicpractice · 30/07/2026 22:17

Mostly the excision surgery, they cut away everything they saw (took 8.5hrs and 2 surgeons) and I had a mirena which I’m ok with. Not usually great with hormones but it’s been fine

8.5 hours! Wow. God. What an ordeal for you. God so many of us are so used to being told shut up and go away and it's just IBS or stress and we just take it and then it turns out to have been something massive like this. It's awful.

Roselilysnowdrop · 31/07/2026 08:18

JJkate · 31/07/2026 06:32

Shit! How long have you had the merina for? I'm so averse to trying it as any form of progesterone and pretty much any meds really make me feel awful. I wonder if it's related to my bowel issues, something to do with how my body processes meds means I can't filter them or something. Even PPIs made me feel very unwell and took me months to recover from after stopping. GP prescribed me traxanamic acid and I'm scared to try that too as no doubt I'd get awful side effects there too. I'm low on iron and levels only gone up to 51 despite being on iron tablets for almost a year and still losing a lot of my hair which has been devastating.

Edited

I went through all of that too. I became so anaemic that my hair has become so thin and I now have to wear a hair topper, for several years my ferritin was at 3 so I had to have iron infusions. I was so scared to try the mirena as I have issues with hormones too so I opted for the ablation instead thinking it would avoid all hassle but that has proven to be a huge, huge mistake. I now wish more than anything that I had tried the mirena, it's reversible, you can have it removed if it doesn't work for you unlike the ablation which has basically wrecked my uterus.

If I could go back again I would try the coil over anything else but hindsight is a great thing I suppose.

On a side note, my dd used tranexamic acid evrey month for her periods and she has zero negative side effects.

OP posts:
Roselilysnowdrop · 31/07/2026 08:20

OneOfEachPlease · 30/07/2026 22:29

Really sorry to hear how much you’ve been suffering, OP! I read your post thinking that it sounds like a more extreme version of me. I don’t think I have Endo. But I do have the urgent diarrhoea, iron problems, mood issues, and perimenopause has really affected me. I finally got seen by a decent GP because my mood issues related to my cycle had gotten so bad. I’ve recently been diagnosed with PMDD and being put on HRT which the GP thinks will help with my gut issues too. But it’s a long experimental road because you have to do it for three months and then review and then any changes need three more months etc. I do find that thinking about it less and leaning into the good days does help. There’s clearly a big brain/gut connection and when my mood is bad or I’m ovulating or on my period my gut issues are much worse. Like you, I’m now on a wheat free, dairy free and low FODMAP diet and it is really restricting and depressing. And while between that and the HRT I am much better, I still have to be so careful about what I eat, particularly quantities and anything even slightly unusual. It’s really depressing!

I really hope the combination of diet and hrt helps you, good luck with it all.

OP posts:
holidayhelpneeded1 · 31/07/2026 08:20

JJkate · 31/07/2026 06:32

Shit! How long have you had the merina for? I'm so averse to trying it as any form of progesterone and pretty much any meds really make me feel awful. I wonder if it's related to my bowel issues, something to do with how my body processes meds means I can't filter them or something. Even PPIs made me feel very unwell and took me months to recover from after stopping. GP prescribed me traxanamic acid and I'm scared to try that too as no doubt I'd get awful side effects there too. I'm low on iron and levels only gone up to 51 despite being on iron tablets for almost a year and still losing a lot of my hair which has been devastating.

Edited

Im close to 9 weeks with the coil. Previously I managed 3 weeks with the mini pill before I had to stop. With progesterone as HRT I did 1 full cycle of 12 days and on the second one I had to stop after 5 days. They then changed my progesterone and that one I only lasted 3 days with. So I can get sensitive to it fast, so im hoping the fact im 9 weeks in means this might be ok. But im not sure what the plan is if this doesnt help or I need a hysterectomy but thats something I shall ask if I need to as I really dont want to have to give up the estrogen.

holidayhelpneeded1 · 31/07/2026 08:22

Roselilysnowdrop · 31/07/2026 08:18

I went through all of that too. I became so anaemic that my hair has become so thin and I now have to wear a hair topper, for several years my ferritin was at 3 so I had to have iron infusions. I was so scared to try the mirena as I have issues with hormones too so I opted for the ablation instead thinking it would avoid all hassle but that has proven to be a huge, huge mistake. I now wish more than anything that I had tried the mirena, it's reversible, you can have it removed if it doesn't work for you unlike the ablation which has basically wrecked my uterus.

If I could go back again I would try the coil over anything else but hindsight is a great thing I suppose.

On a side note, my dd used tranexamic acid evrey month for her periods and she has zero negative side effects.

Have either you or your Daughter tried mefenemic acid for help with the pain? Its something I use at the moment. I have to use it alongside dihydrocodiene, heat pads and a tens machine but the combo seems to help the worse pain.

Roselilysnowdrop · 31/07/2026 08:31

holidayhelpneeded1 · 31/07/2026 08:22

Have either you or your Daughter tried mefenemic acid for help with the pain? Its something I use at the moment. I have to use it alongside dihydrocodiene, heat pads and a tens machine but the combo seems to help the worse pain.

DD has recently had a prescription for the mefenemic acid as she now seems to be getting a lot of pain with her period, she will try it on her next period. I tried it many years ago but due to my gut issues I can't tolerate any NSAIDs, for some reason they really upset my tummy. I can't even take ibuprofen, I am ok with co-codamol though.

My son's girlfriend also suffers from endo and adeno, she bought me a pelvic tens machine for my birthday this year, I love it, find it really helps with the pain. That and my trusty hot water bottles, although I do overuse them and have developed hot water bottle rash on my stomach area which is not pretty.

OP posts:
JJkate · 31/07/2026 08:47

holidayhelpneeded1 · 31/07/2026 08:20

Im close to 9 weeks with the coil. Previously I managed 3 weeks with the mini pill before I had to stop. With progesterone as HRT I did 1 full cycle of 12 days and on the second one I had to stop after 5 days. They then changed my progesterone and that one I only lasted 3 days with. So I can get sensitive to it fast, so im hoping the fact im 9 weeks in means this might be ok. But im not sure what the plan is if this doesnt help or I need a hysterectomy but thats something I shall ask if I need to as I really dont want to have to give up the estrogen.

That sounds positive and hopeful. Fingers crossed for you.

JJkate · 31/07/2026 08:51

Roselilysnowdrop · 31/07/2026 08:18

I went through all of that too. I became so anaemic that my hair has become so thin and I now have to wear a hair topper, for several years my ferritin was at 3 so I had to have iron infusions. I was so scared to try the mirena as I have issues with hormones too so I opted for the ablation instead thinking it would avoid all hassle but that has proven to be a huge, huge mistake. I now wish more than anything that I had tried the mirena, it's reversible, you can have it removed if it doesn't work for you unlike the ablation which has basically wrecked my uterus.

If I could go back again I would try the coil over anything else but hindsight is a great thing I suppose.

On a side note, my dd used tranexamic acid evrey month for her periods and she has zero negative side effects.

Losing hair is awful isn't it. You must've felt awful with iron that low. So sorry about the ablation too. Good to hear TA helps your DD. I will think about Mirena.

Ljnags · 31/07/2026 19:58

I got told for years my issues were IBS. I did food intolerance tests, candida tests and diets the lot. After years of fighting I eventually gave up. Then came my 40 year old checkup and my iron was borderline anaemic. Found out I had huge cysts on my ovaries, adenomyosis and endometriosis (after about 7 months of investigations- MRI and scans). Although I thought I had it for 10+ years.
3 weeks ago I had fully hysterectomy and bowel resection as I had a 3cm nodule on my bowel. ALL my stomach issues have disappeared. Happy to answer any questions you have ❤️

JJkate · 31/07/2026 22:02

Ljnags · 31/07/2026 19:58

I got told for years my issues were IBS. I did food intolerance tests, candida tests and diets the lot. After years of fighting I eventually gave up. Then came my 40 year old checkup and my iron was borderline anaemic. Found out I had huge cysts on my ovaries, adenomyosis and endometriosis (after about 7 months of investigations- MRI and scans). Although I thought I had it for 10+ years.
3 weeks ago I had fully hysterectomy and bowel resection as I had a 3cm nodule on my bowel. ALL my stomach issues have disappeared. Happy to answer any questions you have ❤️

Edited

Omg. Sorry it took so long but glad to hear you are doing well now. Can I ask how you got diagnosed and what it was like? I'm waiting for the results of a transvaginal ultrasound and apparently I will then be triaged to see the consultant and it could take up to 44 weeks. I don't know what to say to them apart from, I think I have endometriosis and or adenomyosis and it's affectingy bowel and diaphragm.

JJkate · 31/07/2026 22:04

I have always been told it can't be endometriosis as I don't have painful sex and adenomyosis doesn't affect the bowel.

Ljnags · 31/07/2026 22:26

JJkate · 31/07/2026 22:04

I have always been told it can't be endometriosis as I don't have painful sex and adenomyosis doesn't affect the bowel.

i was told 16 months ago, by a gynaecologist, after a hysteroscopy that I categorically don’t have endo. Then a few months later was told I was riddled with it, my bowel was stuck to my uterus, I had kissing ovaries, I had endo on my bladder, fibroids and adenomyosis. It was server deep infiltrated endo, so don’t believe everything you’re told X

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