I feel so very below par all the time, where can I go for help?

[Normansglasseye]

Do I go to the GP and ask for more tests? I don't know what to do anymore.

This is a list of my issues, most are very long term, daily and are getting worse the older I get, any idea what it could be or could it be several things? I'm at a loss and so worn out and knackered that I don't feel I have the energy to push for anything.

1. Digestive issues. First diagnosed with 'IBS' almost 30 years ago. Been up and down for the last few decades but the last 6 years have been dreadful. Since 2019 I've had 2 colonoscopies (with biopsies for microscopic colitis), a gastroscope, a bile acid malabsorption scan, a pill camera endoscopy, tests (blood tests, stool tests and biopsies for h pylori, coeliac disease etc). All clear except for SIBO but antibiotics made me worse and gastro tells me the tests are unreliable and to not concern myself about it too much this. As she has ruled out all serious conditions she just now says it's all health anxiety yet every day I wake and rush to the loo. I go 1-4 times a day. Anything from constipation to loose stool. Pain, burping, nausea, gurgling guts all the time, excessive gas up and down, speedy gastro colic reflex so I need to poop as soon as I eat which is not fun and rules out socialising nowadays. Bloating so look pregnant some evenings. Pressure feeling in rectal area all the time. Nothing I do seems to help, no amount of careful eating and food dairy filing for the last few years detects anything ie low fodmapping, avoiding trigger foods:- wheat, diary, fatty foods, eggs, artificial sweeteners etc help either. I only drink water and am so careful with food, fibre etc. Probiotics made things worse. I exercise, listen to gut directed hypnotherapy following on from private sessions etc etc......nothing is helping, it's all getting worse. I have spent a fortune on finding something to help. GP says there is nothing more she can do to help. I've tried SSRI's which made things worse, Amitriptyline which made me zombie like and very confused. I survive on peppermint oil capsules and imodium when needed and gaviscon for the acid/nausea but that has little effect. My bad guts make me absolutely miserable all the time. I no longer work as a result of the unpredictable nature of my gut issues. My gut issues are truly the bain of my life, I can not emphasize that enough.

1. Endometriosis. Following on from decades of gynae issues and severe anaemia due to heavy bleeding I opted for a uterine ablation in 2022. That stopped the heavy bleeding but the ablation failed as I am now in agony with each period. I asked for a MRI in 2023, turns out I had endometriosis all along (mri says deep endometriosis). The ablation had forced the undiagnosed endo into the walls of my uterus causing an additional issue of adenomyosis. I also have a very retroverted uterus and always feel as though it's sitting on my rectal area causing the pressure feeling. I am still on a waiting list for a laparoscopy which hopefully will be this year, sometime. My endo gynae won't discuss the possibility of the endo and gut issues being connected, says it's nothing to do with it but in the same breath says if the lap discovers it's on my bowel he will stop the procedure and I'll need it done again with a colorectal surgeon on hand!

3. Constant tiredness to the point of exhaustion. I have no energy for anything. I sleep 7-8 hours a night but could sleep on/off for hours during the day if I let myself. I had ferritin levels below 3 for 10 years but had an infusion before the ablation and now levels are normal so I don't think it's low iron anymore.

4. I have awful anxiety, unbearable in the mornings, I am constantly on edge and have panic attacks throughout the day. My nerves are frayed to say the least. I am 52 and in perimenopause, maybe this is the cause but I am also caring for mum who has Alzheimer's which is hell in itself, so not sure exactly what is causing the major anxiety. I do also have ADHD (diagnosed this year!) and I do find it hard to regulate negative emotions at times.

5. Depression - I am so very depressed and feel I have zero joy in my life but certain that's all caused by the above.

6. Constant aching muscles, my toes often cramp, I feel tension in my neck, shoulders and jaw (I have tmjd disorder). Fingers, toes and joints all click and creak.

7. I am very bendy and can bend my thumb to the side of my wrist, I can do the prayer pose up by my back/shoulder blades etc, have always been super bendy but not in a good way, too much yoga hurts. I have thought that I may have joint hyper mobility for some time but my GP says no. My ds19 has it and regular knee subluxations.

8. I struggle to regulate my temperature. In the winter I am always absolutely freezing, can never get warm and I have Raynaud's (mum and grandad also have it), yet in heatwaves I feel as though I'm am about to explode with the heat (especially in hands and feet). I feel very unwell in hot weather and sitting in the sun.

9. I am in perimenopause at 52 but still having a cycle so no sign of menopause yet. I tried hrt but it made the endo/ablation pain worse so not sure what to do about that. I'm hoping one day to get a hysterectomy.

All blood tests with GP are within normal ranges.

I acknowledge that I am very stressed caring for mum and perimenopause probably isn't helping either but I genuinely don't know what to do anymore. I feel so awful every day. I try my best to be healthy and live 'clean' but I'm feeling like crap every shitting day. It has genuinely taken all the zest and joy out of my life, my only joy these days is when I can lie in the dark, listen to a Calm sleep story and drift off to my preferred life which is dreamland. How sad.

Could this all be simply down to hormones, stress and the endometriosis? Can these things make you feel absolutely dreadful or am I missing something that could put an end to this misery?

Can anyone recommend anything I haven't tried or something to take to make me feel better? I'll try anything at this point (as long as it doesn't make my guts worse!).

Ask at reception for the print out of your bloods so you can see the results for yourself.

The print out should have the acceptable ranges listed so you can see if you are low in the acceptable range.

If you are low in anything it might not be the cause of your problems but might not be helping how you feel either.

I've had two blood tests and stomach biopsies taken over the last 6 years. I was also eating gluten at the time so I fairly certain I don't have it.

I have a Patient Access account so can view all my test results and ranges. The latest ones all come back as normal and within range so GP won't repeat them.

So sorry you are going through all this.
As a physio I would say your photo shows you are hyper mobile at the wrist at least and sounds like shoulders also. EDS is a possibility yes.
I think a hysterectomy would be a good idea, good luck with getting one and if you do, best of luck that it really helps.

I had many of your bowel issues and they all went away when I cut carbs right down.

Endo causes bowel issues and fatigue for me
you could do with a BSGE centre
mine operated with the bowel surgeon on standby but he came in and did 3hrs on my bowel in the end

Endometriosis can absolutely cause bowel issues. Certainly did with me! Would also agree with eds. Would recommend reading the NICE website for all of your issues that you're being fobbed off with to see what guidelines are so you're armed next time you see someone.

Unsure why they're insisting on a lap when you've asked for a hysterectomy- isn't that just delaying the inevitable?

I'm one of the lucky endo patients where the helical laser used during a lap zapped off my endo and a Mirena coil head kept it away for over 20 years. I'm probably menopausal now.

Hysterectomy would be top of my list!

Calyx72 thank you. I will ask the private GP when I see them regarding the hyper mobility issue.
I really do need to drop my carbs, I'm addicted to them if I'm honest. My friend went keto and all her gut issues vanished but I'm not sure if I can go that far in, I don't enjoy meat, can't tolerate eggs or dairy so I'd end up having quite a restrictive diet.

bythefireplace I'm lucky that my local hospital is a BSGE centre, not so lucky that the gynae I've been assigned is unsympathetic and talks over me the whole time. I've seen endless consultants over the years for my gut and gynae issues and all have been great but I have never met such a rude health professional than this guy, he obviously feels he knows my body better than I do.

He won't do the lap with a colorectal surgeon on hand to start with as the MRI hasn't shown it on my bowel although it does state 'deep endometriosis' whatever that actually means, and I also have a nodule in the pouch of douglas not far from my rectal area so not sure if that's causing issues.

I asked for an ultrasound last month. The sonographer said my left ovary now appears to be stuck to my uterus and she could not get it to move. Not had this before and that didn't show on the MRI from Dec 23 so I'm concerned my up and down peri hormones have exacerbated the endo whilst I've been stuck on this long waiting list. Just hope it hasn't caused further issues on my bowel. I'm so worried as a friend of mine lost part of her colon to endo and needed a bag for a while (She also lost a kidney) and my sister lost an ovary to endo diagnosed late in her 40's.

My biggest regret to date is not opting for the Mirena, had I known that I had endometriosis many years ago I could have managed it with the coil, instead I have a wrecked uterus due to them not listening to me. I'm so angry regarding my gynae management over the last 12 years.

I don’t have any advice but I was amazed at how many of your symptoms I suffer with.
ADHD
Temperature intolerance
Raynauds
Constant fatigue
Anxiety/depression
TMJ disorder mainly jaws
I’m very thin but if I eat anything processed I look 9 months pregnant.
Excessive hair loss.

Mostly I just feel unmotivated and tired, I’m 42 but probably heading for peri as my mum and gran were early 40s. I wanted to say whatever this is you’re not alone and it’s definitely real and cruel.

I’ll be reading with interest to see if anyone can put their finger on it.
One thing google suggests is fibromyalgia but I’ve never seen a doctor.

I'm so sorry you struggle with all of this too. It's no fun at all, is it? And peri certainly doesn't help.

I do hope you manage to find some relief from it all.

I get that totally
it took them over 8hrs in theatre to sort mine out which was deep infiltrating stage 4 with kissing ovaries

Stay angry. Women's health can be a shit show, particular where endometriosis is concerned. Shout loud, complain where necessary, particular where you're being treated like a dunce. I do get very angry about this!

I had / have 99% of all that.
Had a total hysterectomy.
Still have bowel / bladder problems and still having tests/ procedures.
Rest of it was B12 deficiency... don't go by GP rests or NICE guidelines.. not enough information.
B12 weekly injections have changed my life.
Join a forum and get advice.

I did raise a complaint with PALS to ask why I had been seen every year at the same department since 2012, endured 5 hysteroscopies, endless polyp removals, even day surgery to remove stubborn polyps, biopsies, so many pelvic us scans, a myosure procedure, the Novasure ablation AND me explaining to my gynae that my sister was diagnosed with endometriosis at 43 after they thought she had OC (same hospital, same department) and asking if I might have it too but always told no yet never investigated for it just incase.

Head of gynae rang me to apologise abd reeled out the classic "We'll learn by our mistakes".

Thanks, my b12 always comes up as 'normal' but my folate is fairly low.
I am on quite a few FB B12 groups but I just can't face self injections as I suffer from needle phobia. I'd also worry where to purchase the B12 and if they are legit or not.
Do you self inject?

Yes l SI once a week. Buy from Germany.. works out a £1 per ampule.

Yes thats EDS!
Mine is only obvious in one elbow and neck/TMJ issues, it seems to affect most of my daughter’s joints, this image is of her back.

One thing to remember is it can affect you internally too gut lining arteries etc which I think accounts for more of my problems. Menopause really tipped me over the edge health wise.

Perhaps worth a cheap private genetic test for MTHFR which 40% of the population carries.
For our family genetics we can’t eat bread for example because of the artificial folic acid they add not the actual gluten.

Non methylated B vitamins also make us very unwell which was tricky initially as we were low in B’s and didn’t realise the connotations of having that gene.

Crikey, your DD is super bendy. Does she get a lot of pain?

Perimenopause has definitely been a major trigger, I've always had problems especially during hormonal spikes, had lots of issues with psd during my pregnancies but peri has been the worst time, definitely.

I've been reading a lot about the MTHFR gene recently, I have contemplated having the test.
I need to look into that a bit further.

Dd 26 has digestive issues, migraines, chest pain, lactic acid pains in her legs, Adhd, anxiety and crippling fatigue at times. Sounds awful but she’s lucky enough to manage it by taking good care of her diet/supplements and working part time in her dream job.
An awful lot harder with perimenopause and caring responsibilities.

I have been suffering the tiredness diarrhea and loss of appetite and weight for the last year. I was hospitalised twice. Every scan test
Colonoscopy endoscopy showed nothing showed up. Doctor now things IBS and no cure just live with.
I have a business and have to wfh.
Friend,suggested a kienioligiist.
Went a month ago the improvement ia fantastic .Allergy,tested so I now,what,to eat ,completely different diet. Gluten,free dairy,free
Really enjoy the,food I can taste, it again. All organic meat fruit veg splet bread real butter. Goats cheese milk,yougurt . No more diarrhea unless I eat something that I am allergic to . Very low ,zinc, vitamin b6 and b12 she gave me,supplements. Back for a review today and she can't believe the difference in my health skin and stress levels. I have returned to work...It was not expensive 100 euro and no charge for review it's worth a shot
P

You need to stop reading the words "normal" and actually look at the figures. NHS ranges are ridiculously low even compared to Europe. For example some NHS GPs say a Ferritin level of 5 is within normal range but you actually need to be between 70 and 100 for optimal health and healthy hair growth!

Can you list the results and the lab ranges for Ferritin, B12, Folate and Vit D? Any of those being at the lower end of the range can make you feel awful.

I did see a kinesiologist a few years ago but didn't find it helpful tbh. I've seen so many complementary and alternative therapists out of sheer desperation. I've literally spent all of my savings trying to feel better but I'm still struggling unfortunately.

Glad to hear it helped you though.