Could all of my health issues be connected? I feel I’m going insane with worry.

[Silverumbrella]

I’m sorry, this is long-winded but am looking for any suggestions of help that I may have over-looked, if anyone has been through similar and can offer any advice. I am desperate.

Although I have struggled with digestive and gynae issues for decades, over the last 6 years the turbo button on these issues has been pressed and I have been feeling so awful, on a daily basis and it’s just getting worse (or just more consistent?).

My gut issues started 26 years ago and I have had gynae issues since my periods started at the age of 12.

I have also struggled with my mental health since I was a small child. I have severe anxiety (which is exacerbated by my physical issues especially the gut ones - vicious cycle, I know), ocd, muddled and excessive thoughts, some kind of executive dysfunction, depression and what I can only describe as muddled and poor mental health.

I have really tried my hardest to be pro-active with my health and implemented as much as I can in the way of positive attitudes, clean living and trying all that has been suggested by health professionals etc but it’s to no avail because here I am at the age of 51 and slowly going crazy with these physical issues and anxiety over everything.

On a daily basis my guts seem to be in overdrive mode. As soon as I wake (mornings are the absolute worst) I need to dash to the loo, I have loose/soft stool, very gurgly guts with seem constantly angry and unsettled. Since hitting perimenopause I have almost daily nausea (which has very much reduced my appetite), smell cigarettes at certain times of my cycle (that drives me insane), I bloat in the evening and have gas up and down. I get acid indigestion at various times of the month also. I’m sitting here now having had breakfast an hour ago and my guts are growling and gurgling. This puts me on edge as my bowels are so unpredictable I am becoming scared to go out, especially in the mornings.

I have tried various medications for my gut issues. Mebeverine, buscopan, Amytriptyline, imodium etc but they are all very hit and miss. I have tried endless probiotics and other off the shelf medications. I follow a strict low fodmap diet. Haven’t touched dairy for 20 years. Have very little wheat/gluten. I only drink water, nothing else. I have the most plain and boring diet and eat very little tbh as any food which hits my stomach seems to activate this overdrive button. I feel I could eat just dust and it would trigger my issues. I think meat can make me bad too so eat little in the way of meat. I just eat turkey, fish and low fodmap veg and a few carbs such as potatoes and oat crackers. I absolutely hate food now.

I kept my weight down, I walk my dog twice a day and use my exercise bike several times a week, I go to bed early. I have never smoked. Drank about 10 alcoholic drinks my whole life (alcohol goes through me!). I do yoga at home, I listen to gut directed-hypnotherapy and meditation every night but it all seems pointless as I’m still struggling.

I have had 2 colonscopies, two gastroscopes with biopsies (which checked for various things including coeliac disease), a pill camera endoscopy to check my small intestine, several ultra sound scans, a seCHAT scan to check for bile acid malabsorption and various stool tests. I tested positive for small intestinal bacterial overgrowth last year. My gastroenterologist gave me special antibiotics but they made me worse so not sure what to do as I can’t get an appointment with her until June. I am not sure what to think about the SIBO situation because my gastroenterologist has a kind of of a flim flam attitude to it and I am also under a neuro-gastroenterologist (as this has all severely affected my mental health) and they said not to focus on the SIBO at all because research shows it’s a bit of a hit and miss thing and many people test positive and yet have no symptoms, so I am totally confused over that one tbh. I also feel because all the tests came back clear my gastroenterologist has kind of wiped her hands on me now. She seems uninterested at our follow up appointments even though I say I am still experiencing all these issues.

As I say I have also experienced gynae issues for decades. I’ve had so many tests in this area also. I have had years of very heavy periods to the point that I needed iron infusions as I’d become so anaemic. It was discovered that I had uterine polyps which I have had removed, 5 times during hysteroscopies but they kept coming back. I opted for a uterine ablation in 2022 but that has failed and is causing me excessive pain each month during what would have been my period. Gynae confirmed post ablation failure and was going to leave it at that but last December I asked for a pelvic mri to see if there was any damaged since the ablation only to discover that I have deep endometriosis and adenomyosis. I have an appointment with the endometriosis team in May. I saw a private gynae (endo expert) last month and asked him if this could cause all my digestive issues and he said no yet my regular gynae said absolutely it could so who bloody knows!? I also asked if I could go on HRT (as I’m certain perimenopause is playing some part in this) but he said it could exacerbate the endometriosis.

All of this is causing me so much stress. I am so stressed in general with so many plates spinning in the air. I looked after my mum who has Alzheimer’s and my dad (mum lives with dad) is a pain in the arse and such hard work, I could write a whole other thread about him. He is a constant battle when it comes to mums care etc. My poor mum is bent over with osteoporosis, has a pace maker, in pain all the time and is completely confused due to the dementia and then, as if that shit wasn’t enough to deal with, last Thursday she was diagnosed with breast cancer. As I sat in the consultation room with her and the specialist broke the news I honestly thought I was going to throw up and crap myself there and then. The stress of it all is just too much tbh.

I know life is shit for so many of us but can anyone give me any pointers on how I can get my physical and mental health back on track. I can’t care for my mum properly whilst feeling like this?

mitogoshi I have thought for quite some time that I may have, at best joint hypermobility or maybe even EDS. I do score highly on the Beighton scale but when I mentioned this to my neuro-gastroenterologist (who has an interest innEDs) she told me not to bother looking into it and just to concentrate on the gut/brain issue!
I hope your dad gets somewhere with her issues, IME female health issues seem to be overlooked for years.

Mairzydotes I definitely do think there is a big connection between the gut issues and anxiety else as I am currently under a lot of stress with my parents situation. I think the endometriosis is probably the main cause and the anxiety exacerbate it all.

I get loads of physical symptoms that are all anxiety related so don't rule it out - not just guts but pains in my feet, knees, shoulders, chest, neck, plus facial palsy, so many it's bonkers. And you're under so much pressure. Look into it?

I thought I had IBS/gluten/dairy intolerance. I went to therapy for anxiety and childhood trauma. The symptoms miraculously disappeared very quickly!

I have no advice but just wanted to send sympathy as that sounds really horrid. 💐

When you say you have tried probiotics - what have you tried and how did you try it.
having little gluten and wheat means nothing, you either give it up completely or you don’t, eating little does nothing if it is a problem.
what I would suggest is to cut out the gluten/wheat altogether. You have already cut out dairy so that is good. Those are the most difficult things for your body to breakdown, so it will help if you cut them out completely. Next I would get a very good brand of probiotic - look at mad diet products, great quality at affordable price. Take two a day for two weeks. Then see where you are at.
also, consider the York test - Google it.
remember that your gut feeds your brain so it can lead to depression if your gut is not working properly

The first thing I thought when reading your post is anxiety and stress are the problem.

We underestimate the profound effect the mind has on the body. Have you also suffered some trauma by any chance?

If I were you I’d be looking at some serious stress reducing exercises such as (slow) yoga, meditation, breath work, possibly cold exposure therapy, therapy and I’d teach myself EFT tappping (a good free place to start is on YouTube with Brad Yates). Also look into Vagus Nerve regulation. This nerve runs from the brain to the gut and reproductive system and back again and if it’s dysregulated it needs some help.

HTH ❤️‍🩹

I see you’ve tried hypnosis, I was going to suggest the CBT treatment the NHS are recommending for IBS. Other than that I would suggest Keto which would be a complete overhaul of your current diet (high in meat and dairy!), I wouldn’t say it solved my husbands very similar gut problems but seems to ‘work’ for him somehow- more in control? It’s being suggested for a range of issues these days. Anyway you’ve had lots of much better researched answers so wish you the best of luck finding what works for you.

You poor thing.

Reading your OP my very first thought was “it’s endo”. A lot of what you’ve described could be ascribed to that. It’s very old fashioned and outdated thinking to suggest that endometriosis can’t cause gut issues. It’s proven to do so, but relatively recently. Frankly, many women will tell you that their digestive cycles are massively impacted by their endocrine cycles: diarrhea the first few days of their period; constipation right before their period starts etc. I believe the thinking is that endometrial cells can be found pretty much anywhere in the lower abdomen, not just in/around the uterus. So, as our hormones cycle, so those cells respond.

More minorly, maybe try cutting out refined sugar completely. That and cutting out caffeine entirely has worked wonders for me.

You have a lot on your plate at the moment, but you are only one person and a debilitated one at that. Look after yourself first so that you’re able to look after others. Good luck.

Hi OP
sorry to hear this. I have had similar experiences.

endometriosis on the bowel will affect your digestion. Also causes anxiety.
i have stage 4 endometriosis and adenomyosis.

also - endometriosis is more common with hyper mobility, EDS.

EDS is also found hand in hand with mast cell activation syndrome- lots of allergic reactions to high histamine, and also postural tachycardia syndrome (POTS) causing tiredness, dizziness, digestion issues too - autonomic dysfunction.
I have been diagnosed with 2/3 of these three.

also EDS links to neurodivergent conditions too, in case that is something you’ve noticed. Sorry OP it’s a lot to deal with xx

Also childhood trauma and addressing this is important

@Silverumbrella have you had the blood test for lupus? I think that wherever there are multiple issues that seem unconnected and then an autoimmune thing is mentioned it is the first thing you should check tbh and I speak from personal experience of many many tests and procedures that made no sense until I realised there was a bigger picture and everything was part of that rather than standalone issues.

Two friends had hysterectomies late forties. Said they felt so much better. I'd push for one. That's half your issues gone at least.

I'd definitely get my gallbladder checked.

Privately average cost £7k for hysterectomy.

Thank you everyone.

I have spent a small fortune on therapies in the hope of tackling the issue and bringing down my anxiety if, indeed that is the main source of all my physical issues? I’ve had endless CBT, EMDR, hypnosis and talking therapies. I still practice gut directed hypnotherapy and listen to the Calm all every day. I also practice yoga daily. I do all these things because they are relaxing at the time and in the vain hope something from these things will stick and help, sadly that hasn’t yet happened from years of practicing but I will still do them because, as I say, they are nice at the time and I feel I’ve exhausted most other ‘alternative’ therapies. I am starting acupuncture next month though, that’s one thing I haven’t yet tried, so fingers crossed on that one.
I am always trying to reduce my anxiety and stress levels as I know that it’s a bit like throwing petrol on an already raging fire!

Jewelbeetle my friend lost 5 stone on keto and found it ‘cured’ her IBS too. I have tried it but because dairy and meat make me worse I found it very restrictive as I was also trying to implement the low fodmap diet as well. I lost a lot of weight which I can’t afford to do as I already have a fairly low bmi. I do try to keep my carbs low(ish) as much as I can though.

Thanks shenandoahvalley since discovering I have endometriosis and joining so many support groups I do see that many women have digestive issues too. It just frustrates me that it’s not seen as a major thing by the medical professionals. So frustrating.

NewYearTimeToChange it’s strange that you mention lupus. It’s not disease that I’ve ever given much thought about tbh but I used to work with a lady who suffered with it. I remember her talking about this butterfly type rash she’d get on her face. I’ve noticed over the last few months that I get this reddish rash on my cheeks and nose. Obviously I have no idea if it’s related to lupus at all (could be a peri thing?) but it has made me look into it a bit recently. Maybe I should mention it to my GP (if I can ever get an appointment that is!)

Over the last 20 years I done the York test twice. Both times it flagged up eggs, dairy and wheat within the red category. Tbh, the first time I didn’t really stick to the plan. However, the second time (2019) I was very strict. Obviously, I had already gone dairy free years before but gave the eggs up completely (I already know I had issues with them) and went strictly wheat/gluten free for over 18 months, I have only recently added small amount of wheat into my diet for a little bit of variety as frankly, giving it up had very little affect to my issues.

I have tried so many probiotics:- VSL, Symprove, Alflorex and bio-kault. They all exacerbated the bloating and gas. I will definitely look into the ones you suggest, thanks.

Thank you. Sorry you suffer the same. I have many physical issues and it’s so darn hard trying to get medical professionals to acknowledge they may all be connected.

I have thought for some time that I may have EDS and that it runs in my family. I score highly on the Beighton scale. I believe my mum and grandad also had it (they both had endless issues). I was born with double hip dysplasia as did my son, he also regularly has subluxation of his knee but when I took him to a paediatrician years ago (he’s now 18) they said it was nothing to worry about and he’d grow out of it. He hasn’t!

justasking111 I would love my uterus out, it’s not been my friend for decades. Sadly, I have no means to pay privately so will need to see what the NHS endometriosis specialist says when I see him in May.
I have had various scans on my upper digestive system including a ct scan a few years back and the SeCHAT scan last year but they always state my gallbladder is fine.

If they exacerbate the problem then it is probably dysbiosis which it sounds like you have anyway - this means you needs to persevere with it. Read up on it.
also, Symprove has barley in it (gluten), bio kult has milk in it and alforex has magnesium stearate in - not good.
you really need to do your homework. Listen to the York test - what was the point in doing it if you’re not going to listen to the answer - in that respect you are your own worst enemy.
look at the mad diet probiotic - you will see no nasties.
do you cook meals from scratch - ultra processed…where are you at with that?
I think if you want to get better you need to really educate yourself and be much more disciplined- if you want to read, then read the mad diet book, it’s a couple of quid for the kindle version and it will totally change the way you think about food.

Reading when the boys says no might be interesting for you op

Sounds like you have fermenting upper gut. I also wonder if you have low stomach acid as both these things are linked.

Try doing the home bicarb test first thing in the morning.

I only say this as I discovered in my 40's I had ridiculously low stomach acid.

5g of vitamin c every night fixes me.

Did you fully read my reply? I did take on board everything the Yorktest suggested. I gave up those foods for almost 2 years (and continue to consume no eggs or dairy) and still had the exact same issues regardless!

I have also taken Just for Tummy probiotics and several others makes with varying ‘extras’. When I took the various pro-biotics I did so for many many months and felt bloody awful. It is pointless persevering with a product for months on end if you see zero improvement and in fact feel worse.

I am far from my own worst enemy! I have done nothing BUT try and try and try to get better (why the hell would I want to continually feel like I do?). I have spent a small fortune in both time and money education myself on all aspects of my health issues. I have a while library of books on gut issues and am members of many support groups. I’m not burying my head in the sand over my health issues. I am very pro-active.

I cook everything from scratch. I cook separate meals for myself from my family. The last 25 years have been dedicated to finding a way to feel better.

Tbh, you seem to be very pro ‘Mad diet’! Are you affiliated with the brand?

Thank you Unexpectedlysinglemum I will do.

I tried the bicarb test last year and didn’t burp at all. I often wonder if I have a low acid issue. When I mentioned this to my gastroenterologist she just laughed at me!
Do you take the vitamin c before meals or after? I will definitely give that a try. I’ve not heard of that helping before, everything I read mentions apple cider vinegar or betaine hcl. Both burned like crazy when I tried them.

Just reading your other updates, I've EDS as well plus potentially ADHD, so many seemingly unconnected health issues.

I take 5g of slow release vitamin c just before bed so my stomach can acidify overnight.

You may need more or less it's down to trial and error.

It's cheap, easy and you would know within a few weeks if it helps.

Life changing for me.

Are you taking a multivitamin and some kind of fish oil capsule or drink? Agree with whoever said you could look into vagus nerve stuff, also cold water immersion