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?

Are you on HRT? That can really help with anxiety at this age, I was in a dreadful state before starting HRT.
Kefir is brilliant for upping healthy gut bacteria, it takes around 3 months of daily drinking. I’ve been drinking it daily for a couple of years now and do feel miles better. They do Vegan ones as you are dairy free, but I haven’t tried those. Peri / meno is an awful time for gut issues for a lot of women unfortunately, so it’s not surprising yours have ramped up.
A hysterectomy solved my awful period issues and has been life changing. I hope they can offer you a solution now they have the scan results. It really will make all the difference.
Interestingly endometriosis has also been linked to anxiety and depression. Are you on any medication at all for anxiety? It really could help with all the stress you are suffering, just make things all feel a little more manageable for you. I hope you have some support, you’ve got a lot going on

I don't know the answer but you have such a lot to cope with. I hope hou find an answer. 💐

Forgot to ask, has your thyroid been tested recently?

Sorry OP, that all sounds awful. I have endo and firmly believe that it has an impact on the gut....it has done for me. I listened to this podcast the other day, it may be of interest to you.

open.spotify.com/episode/2Ok1Qz7W8sSehrywHXrWMc?si=ZLSGJseNQz683ipSuUzxdQ

Just sending a hug. You’ve had to cope with a lot ❤️

May be of no use but Eddie Abbew on instagram has very strong ideas about nutrition and health. Please ignore if it doesn’t resonate.

And well done on pursuing help so assiduously even if you have drawn a blank so far. Keep going.

Life is shit for many of us but you seem to be having a particularly shit time and I hope someone can offer you some good advice.
I helped care for my mum through her Alzheimer’s until we lost her 7 years ago but I had my 4 siblings and dad with me. Lost a sister to endometrial cancer 20 months ago and lost dad 15 months ago (he gave up).
I have ulcerative colitis, a large hiatus hernia and GERD, so malabsorption / deficiencies and menopause / gynae issues - thought I was getting the HRT balanced then started bleeding in February and didn’t stop till last week. Waiting for a pelvic scan now but convinced it’s not good news.
Your gynae issues sound worse than mine and I’ve just come on Mumsnet to see if anyone has had a hysterectomy privately and how much it costs as I’m so fed up.
I would have thought your GP / gynaecologist would have been investigating this route with you?
It would be one less thing to worry about.
I feel for you - sending you best wishes.

I wanted to try hrt but the Endo specialist has advised me not to take it as the oestrogen could exacerbate the endometriosis. I have tried lots of probiotics but haven’t tried kefir, I will try and find the diary free one, thanks.
I am hoping to have a hysterectomy but I will need a laparoscopy first apparently so could be a wait for a hysterectomy.
I am desperate to take antidepressants but I’ve tried several and they made my gut issues worse so I stopped. I just want something to put a break on everything but also to slow down my hyper gut.
I have had my thyroid tested but GP said it was all within ‘normal’ limits but I do appear to have quite a few thyroid issues. My grandad had an overactive thyroid, mum is borderline and my sister has an under active thyroid and parathyroid disease (had an op this week to remove the tumour). I have read thyroid issues run in families?

I have endo

It massively impacts my gut.

I'd try for a laparoscopy and excision of endo deposits in your position. I've had it done twice and it makes a hell of a difference.

Thanks Instantcustard I live in hope!

ZuliKyanLarsFoz I love a podcast, will definitely check that out. Thanks.

Thank you Fortitudinal I will listen to, read up on and try anything if it could potentially help me.

Have you investigated the possibility (all other things being ruled out) that it is psychosomatic? The mind-body connection is becoming increasingly prevalent in modern medicine/psychotherapy.

I would not discount the SIBO at all. It can be really debilitating and it’s hard to pin down what works for it.

Have you had your faecal elastase tested? I have something called exocrine pancreatic insufficiency that causes much of what you describe. It often goes alongside things like SIBO and bile acid malabsorption. People often have both.

Find some Facebook support groups for SIBO and see if you can learn what else you can try. I learned a lot that way when my consultant basically said it was all no big deal.

I am so sorry you are been through and currently going through shit too.
Sorry for your losses also, life is so crap at times.
Fingers crossed for you. I did enquire about private operations when I saw the endometriosis consultant privately last month. It will be £7400 for the laparoscopy and a further £9000 for a hysterectomy. Sadly, I can’t afford that but may enquire at various other private hospitals as I know they all differ.
I hope you manage to get your issues sorted swiftly, good luck.

Sorry you're going through this. I will say that for me anxiety massively exacerbates my gut. Then I get anxious about needing to poo urgently so it's a very vicious cycle. Don't underestimate the brain/gut link especially with loose, urgent poos.

JungsWordTest I m definitely not ruling it out. I am under the UCLH neuro-gastro department. They are offering me acceptance therapy which I’ve been on a 3 year wait for. It starts end of May so I will keep my fingers crossed it may help some what.

mindutopia I am fairly convinced the SIBO is definitely a ‘thing’ regardless of what my gastroenterologists’ opinions. I believe the endo and my lack of food diversity due to being low fodmap for so long has caused this imbalance. I have joined the SIBO groups but they all say you have to push through the die off from the Rifaximin but I felt so awful and need to work and look after my mum and just can’t see how I can do it. I need to see how I can make that work.
I paid for a fully comprehensive stool test last year, I’m pretty certain it checked for the elastase test but I’ll double check.

I have a friend with endo who is doing well on HRT. Another friend was initially told she couldn’t take HRT because she has occasional migraines (she is now also on HRT and it’s helping after seeking another opinion). Practitioners aren’t always correct about HRT - just a thought.

cherrydrop22 I definitely think it plays a huge part in this. I can literally make myself poop just be thinking about it, I ob have a very strong gut/brain connection. Even though I’ve tried endless gut directed hypnosis which hasn’t helped I am hoping the acceptance therapy I’m starting in May will help.

Thanks Fortitudinal I am trying to find a hrt/meno specialist who may have some gynae experience who may be able to advise me. I would love to try hrt but so scared it will exacerbate the pain from the endo (which is like labour pains).

@Silverumbrella thank you for the cost info - I can’t afford that either!
Hopefully your appt with the endo team will provide a solution - May isn’t too far off.
I think there is a connection between gynae and GI issues.

I took have exocrine pancreatic insufficiency, coeliac disease and microscopic colitis. What really helped me (alongside lifelong prescribed enzymes) was a very good NHS dietitian, who helped me to work out what I could and could not eat through a supported phase of low fod map dieting and keeping a very detailed food and symptoms diary for a few weeks.
I now eat a moderate fod map diet, and there are some things which are low fod map which I cannot eat, for me it was about working out specifically what triggered me.
My gastroenterologist says given what I've got, it's as good as it will get and that I'm managing it very well. I won't ever be able to go back to a "normal" diet, but my symptoms are much reduced. This means I'm no longer on immodium and I can live without fecal incontinence (always a bonus!), though I still get urgency issues if I stray too much onto "normal" good, especially high fat or high fibre.
So perhaps a referral to a dietician might help you? They were great for me.

Wishing you good luck, it's a long hard slog x

@Silverumbrella sorry you are going through this, I feel like it's all kicking off for me. I had an mri for endo and I'm waiting months for call to tell me what they found.

Can you tell me how and where you paid for private stool test please.

So much of this describes my dsd, we are trying to get to the bottom of it, my money is on EDS because of joint issues too but specialist isn't keen on that as it too vague

Depending on your area it may be a lot less. I’m in Essex and it seems to be so costly here but I’ve noticed on the endo support groups some have had laps and hysterectomies for a lot less. Hopefully you can find someone to help 🤞

Iamnotavicar sorry to hear you are having lots of issues also, good to learn you are managing it as well as you can. I do need to see a dietician. I saw an NHS one about 5 years ago but she wasn’t overly helpful tbh but maybe I could look into seeing someone privately?

Rollonsummer1 I’m sorry you are still awaiting your results, it really shouldn’t be this way. I hope you get somewhere with it soon. I did my comprehensive stool test with Healthpath.

I second this . I spent years thinking I was coeliac ,had crohns diverticulitis, being gluten free, no fizzy drinks , restricted diet and then I worked out a lot of it was due to anxiety. I introduced some of the things I previously avoided and I wasn't any worse for it.

Have you been told your digestive issues are irritable bowel syndrome/ ibs? My digestion is quiite noisy and gurgly.