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