Work/call 111 with a flare up

[Daisyrain]

Hiya!

To cut a long story short I got diagnosed with endometriosis after pain and bloating following a late miscarriage in January.

I had surgery to remove it and and a cyst in May and naively thought it would mostly go away but it hasn't.

Im currently having a flare up. Its really painful and preventing me from doing anything but lie in bed with a heat pad.

I don't really know what to do.

Do I call 111 or do you mostly wait it out? I have gone in a few times before and just get told there's nothing that can be done and sent home with pain killers. But every flare up feels different and i dunno when im supposed to worry.

Also do you all take days off for a flare up. Ive missed a lot of work this year because of the reasons above but i just don't think i can go in tomorrow.

Sorry, bit of a essay. I feel really confused by it all. I have yet to have a appointment about my Endometriosis and it all feels so unknown

Xx

[Noodle1984]

I can’t comment on calling for an ambulance as I basically have to be dead to go to the hospital. I have 17 chronic conditions and only have ever gone for period pains when I was a teenager because I was treated like I was a promiscuous teen who must have an ectopic pregnancy. 🙄 The amount of pregnancy tests I was subjected to in my teens and early 20s is laughable. Anyway I digress.

Keep hanging in there. If there isn’t anything they can do why risk going to the hospital and maybe catching something else. Get yourself set up in bed for the next few days. You have a chronic illness and when you flair you need to rest. I worked through all of my pain and I ended up with a ton of medical issues.

What type of surgery did you have? Excision or ablation? And was it with an Endo specialist. These two things are significant because excision is the gold standard. Excision digs in and removes the whole implant root and all. Ablation just takes off the top but leaves the root behind to regrow. If it wasn’t an Endo specialist there’s a huge chance he left a bunch behind. Most gyn are not specialized in Endo and don’t know where it can grow.

What type of birth control are you on? It is imperative for people with Endo to be on some sort of hormone treatment. Endo feeds on estrogen and if you just let it party away you’re allowing it to grow rapidly. You don’t need to suffer in pain! There are so many types of birth control now a days. You can take the pill back to back so you don’t get a period (I did this for 3 years but found out I have a rare blood clotting disorder so can no longer take it), depot shot, vissane, iud, etc. None of these things will cause fertility problems, they will help preserve your fertility.

What people don’t realize is that if you leave Endo to do its thing that over time you will end up with something called central sensitization. It reads all signals as pain instead of pleasure. If this is left untreated you can end up with fibromyalgia. It’s not something you want, it causes me the most daily pain.

Things you can do now...

Eliminate wheat/gluten, dairy, soy, corn and sugar. These are the main triggers for inflammation inside the body. When you already have inflammation why add fuel to the fire! Try and reduce as much processed food and eat as organic as you can. It isn’t easy to do but the rewards are huge. It takes up to 6 months to notice a change. I know now when I eat something bad I get super flared right away.

Find a physiotherapist who specializes in Endo or pelvic pain. They give you different exercises to help with different issues. Things like strengthening your pelvic floor, penetration pain, incontinence, etc. By strengthening the muscles your hope is it will then reduce some of the inflammation and pain.

Try a heating pad instead of a hot water bottle. They work 10 x better in my opinion. Try a warm bath with 2 cups of Epsom salt and soak for at least 20 mins. Magnesium helps to reduce cramping throughout the body. Try to find a magnesium supplement to take at bed time as well (I take 400mg, just watch as it can bind you up).

Remember to be kind to yourself. Be honest and open with your job. If they don’t like it get a doctors note. Your health is not worth your job. I wish I could have seen that before. 💕

[Moon_maiden]

Hi, lots of great advice from Noodle1984, I left it for ever really and it's not something that should be, my insides feel a mess now. If you haven't had a follow up of your op speak to the consultants secretary and let them know you're in pain. Also speak to GP and see what pain relief you can get if needed and a referral to the pain clinice. I've been on furlough, but I would have struggled to work and likely time off. There is some great advice on the Endo UK site about information for the employer. It's something you can print if there are any issues. Although it's not directly a condition you'd think of for disability there are aspects that can be taken as a disability and the employer should make reasonable adjustments.