I am so so fed up with my health issues and feel as though I will never feel better

[WindyWendyHouse]

I am so low and just don't know what to do with myself anymore.

I have struggled with gynae and digestive health for decades.

Two years ago following an awful time with very heavy periods which left me terribly anaemic I opted for a uterine ablation. It failed and I now have awful pain during each period (no bleeding just awful pain for a full 7-10 days). After requesting a MRI in 2023 it was discovered that I have endometriosis and the ablation forced the endometriosis into the walls of my uterus causing adenomyosis. I've been back and forth to the endo gynae who has put me on a waiting list for a laparoscopy and I will need a hysterectomy for the adenomyosis (so angry about this as I was hoping to avoid major surgery hence opting for an ablation). Everything on the NHS is so damn slow and long winded, they can't tell me how long it will be.

Every day I suffer from some kind of gut issue. Bloating, gas, gurgling, burping, nausea, acid. Loose stool but sometimes constipation, gas and more gas. I have had two colonoscopies, a bile acid test, stool tests. Tests for IBD, coeliac disease, h pylori etc....all.clear. My gastro has now put me on a yearly catch up as she says there is nothing more she can offer. All the IBS meds help for a short while then stop working and they are just band aids. I want something which will fix this for sure. Something must be causing it?

I am careful with my diet, avoid all my trigger foods including dairy, wheat, fatty foods, spicy foods and I am low fodmap. I only drink water.

I exercise and am slim. Go to bed at a decent time. Listen to the Calm app every day but still I feel like shit.

I am in perimenopause and have been advised not to take hrt as it could exacerbate the endometriosis. I can put up with the peri aches and pains but I can't put up with the daily gut discomfort.
Today I'm in bed which is unusual for me. My dd picked up a virus thing from college and has a rotten cough and is achy. Today I've come down achy and have had awful diarrhoea. I don't know what has caused this but I know that due to my already dodgy digestive system it will take me several weeks to recover. My guts will feel off for ages now, illness always goes straight to my gut. It's always one step forward and two back.

I am so low. I am only 52 but I feel as though my life is over. I don't want to live being dictated by my digestive system and hormones. I have had to give up work as I feel so awful and each day is unpredictable.

I fear that I will never feel anything other than below par for the rest of my life.

I don't know where else to go for help.

God I know how you feel, I'm 63 I've been off for two years working from home in a non working from home job in order to keep money coming in.
All I need is a hip replacement but the list is so bloody long its made me disabled, I can't walk or drive and all my muscles have withered away plus the relentless constant pain. My guts are in knots because of the morphine I take.
My GP said if you go private you could have it tomorrow, I don't have nearly enough money to go private or I would.
The NHS is in an absolute bloody mess, sometimes all you want to do is crawl into bed and stay there.
None of us should have to suffer like this, healthy people are being made long term disabled because of the wait times. Then they want to take benefits away. It makes me rage.

Isn't it dreadful. I could have my hysterectomy next week if I had £10-15k spare, I don't have any spare money.
I feel only those with money can enjoy good health in this country now. It's heartbreaking.

It is dreadful and you feel like there is nobody to help.
I do empathise, I had many years of debilitating pain and symptoms, including many of the digestive issues you have described. which disappeared after my hysterectomy for endometriosis, so it could be that your symptoms are linked.
I don’t know what the answer is to speed up your wait, but I wish you all the best.

Thank you. Its encouraging to hear that a hysterectomy helped you with your symptoms.

I hope and pray I can get the op soon, fingers crossed.

I honestly could weep for you, @WindyWendyHouse. And knew what you were suffering from before you named it. Despite endless newspaper article and concerned media discussions I don’t get the impression anyone is being diagnosed any faster than they were thirty years ago - and the waiting lists were probably shorter then.

I wish I had something positive to add …

Do you have anyone you can call on for support while you have the current virus?

Thank you so much, your kindness made me tear up. I'm constantly crying these days from the pure frustration of waiting and waiting.

It's highlighted constantly in the papers and on SM but from everything I can gather women are still left to struggle for too long.

I have joined lots of online support groups and they are a lifeline. I just hope my DD17 doesn't develop it. She already suffers from horribly heavy periods but when I asked our GP if she could be checked over she told me I was being ridiculous to consider it, there was nothing she as a GP couldn't offer that a gynae could (ok??) and I was simply pushing my own concerns and experiences on to DD. This was after I told her my sister also has endometriosis and out mother had a history of awful gynae issues (probably undiagnosed endo).

So much for progress and advocating for women's health.

So, I saw this today. I don’t know - it’s on the road to telling the patient to heal themselves. And you’ve already said you live with dietary limitations.

https://www.theguardian.com/society/2025/apr/05/major-endometriosis-study-reveals-impact-of-gluten-coffee-dairy-and-alcohol

There are probably so many more things you could try but there's so many and no way to know what and you suffer whilst you find the right one.

My heart breaks for you, women's medicine is so far behind men's and our health problems never seem a priority.

I don't suffer as badly as you but all of the women in my family have inflammatory diseases and gut issues. I've found fasting makes e erything much better. I don't know whether it's just that my gut gets a break or my insulin sensitivity improves or what but symptoms return quickly after a day or 2 of 'normal' eating.

There are many different fasting regimens, you don't have to reduce calorie intake or starve for days at a time. You'd need to research and see if there's any evidence that it's helpful for someone in your condition.

I hope you get proper medical help soon.

Total empathy here. I have had gut problems for years..slow transit, a weird loopy bowel, then lost sensation so can't poo without suppositories, a rectocele, cystocele , prolapse... From the waist down my body sucks...and the rest isn't great either..nerve pain . I'm in pain every day, I've been waiting 8 months so far to see a gastro.. I've had so many meds and nothing works.
Managing day to day is as good as it gets. I'm 57 , slim, fit, vegetarian, eat sensibly...and the only time I'm not in pain is if I don't eat. It SUCKS!