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?

I would say that your endometriosis is the root cause of your gut problems. It is often spread all over the abdomen so can cause multiple problems. I have lesions on my colon and small intestines, my liver and bladder. These lesions would bleed each month causing mass of adhesions and scar tissue. As a result I have had chronic sciatica ( lesions around the nerves) bladder retention ( the top of my bladder is heavily scarred), rectal and bowel problems ( alternating diarrhoea and constipation) and pain in the area between the rectum and vagina.

The main problem is that the lesions will react to estrogen or any food that contains or mimics estrogen. The biggest trigger for me was orange food colouring. Meat from animals fed with hormones was a problem as well.

I had a course of hormone blockers ( put me in temp menopause) then surgery to laser the lesions. I then got pregnant. After DS was born I had a Mirena coil fitted and for 15 yrs was symptom free, almost.

I am now post menopausal and take hormone blockers ( breast cancer). Everything is so much better.

Do some research into foods that mimic estrogen and try and exclude from your diet. Mirena coil is licensed for use as HRT and you can use it with or without estrogen patches. Since estrogen feeds endometriosis then may not be a good idea. Naturally occurring phytoestrogens are very common. There are also man made ones found in plastics often used in food packaging and water bottles.

I am not a faddy diet advocate but discovered by trial and error ( before the advent of Google) what suited me and what to avoid.

PS the orange food colouring was tartrazine which is a known xenoestrogen ( man made). A glass of orange juice out of a carton would cause rapid onset cramping throughout my gut and cause severe diarrhoea. Fortunately it is used less and less in the food industry.
Up until 1988 it was legal to use hormones to keep cows in milk in the UK. Cream was another trigger in my 20s (1980s). Fortunately hormones are no longer used in the farming industry in this country so no longer a problem.

Had alot of your issues!! Iritable bowel syndrome was my diagnosis. Had gyane issues too. Lots of pain and such. Got a hysterectomy and now I've got very few issues. Not sure why but it cured my digestive issues too. Now I only get issues when eating my trigger foods

stayathomegardener I’m definitely going to try the vitamin c. I do be,dive many of these health issues are connected, it’s so difficult trying to get GPs to understand this especially as you can’t even discuss more than one issue during a consultation. Our surgery has a poster on each door saying ‘one appointment, one problem to discuss only’!!

6559maybe I take a multivitamin & vitamin d. I eat salmon and oily fish several times a week. I do vagus nerve exercises off YT.

Thank you for your advice. I really am starting to believe these decades long issues may have been due to my undiagnosed endometriosis.

I am quite angry because all this time I’ve been under the gynae department due to my constant gynae issues and never once was endometriosis suggested despite my sister being diagnosed at a late age (44). I ended up choosing to have an ablation which has now failed and I’m in more pain than ever. Sadly, I can’t have a Mirena because the scarring in my uterus is over my cervix and it can’t be opened, it’s a nightmare!

I will start researching which foods are higher in oestrogens and avoid those and I do already try to buy and store foods and drinks in glass bottles because of this reason as I’ve believed I have always had higher levels of oestrogen.

Kathy34 do you have endometriosis? I’m desperate to get a hysterectomy, the sooner the better imo.

Why are they so reluctant to do hysterectomy these days?

I didn't. I have heavy bleeding and pain, and a hemoglobin of 8. I went in told them how I felt and asked for it and got it. Was freaked cause it had to be the open one with a huge scar but so far ( 4 weeks post op) it dont look that bad. The healing process hasn't been that bad either! By day 10 I was doing pretty much everything but lifting.

Op your symptoms sound just like my DD15.She has hypermobile EDS which affects her gut, in turn gut is linked to brain and causes ADHD like symptoms and anxiety.Do you have flexible joints, clicky joints...look at hypermobility and hypermobile EDS.She is also lactose intolerant which causes her stomach to gurgle and bloat.Also coeliac but I see you have checked that.

Also she has awful periods.

@shenandoahvalley

Does getting constipated the day before mean that's a sign of of endometriosis or do you mean it merely means it's all linked regardless

There is a link between the endocrine system (ie our hormonal cycle) and our digestive cycle. I don’t know what it is, and I don’t know if science knows what it is - but I think we can make an educated guess. This, like much of women’s health, is where we’re waiting for science to catch up with what we already know, and ideally come up with a solution. Many, many, many women have personal experience of this link, but not all of them have endometriosis. I think sufferers of endometriosis can (but don’t always) suffer the consequences of the endocrine-digestive link particularly severely.

I have mentioned joint hyper mobility and EDS to my gp but she’s dismisssed me several times despite the fact I’ve always scored highly on the Beighton score. I’ll need to start looking into it a bit deeper.