Severe Flare up but no bleeding..

[LaLuz]

Hi,

Is anybody else experiencing painful flare ups but no bleeding? If so, how are you managing? I'm currently on Naproxen 500mg twice a day, codeine 30mg twice a day, and am unable to leave my flat as I'm unable to walk due to the constant pain.

I've been diagnosed with stage 4 endometriosis and just this week had an MRI (am waiting for results) but the wait is so long for the follow up appt (June) I just don't know what to do in the meantime.

These flare up's have been on & off since March last year. I'm unable to work full time because of them, I still have to take time of work even though I only work part time.

My mental health is severely affected and I feel so lonely.

Any advice is gladly welcome

[Laurak26]

I’m at the start of my journey and potentially have endo, but I’ve never experienced bleeding outside of my period, I’ve just primarily had pain in my back, tummy and legs, as well as awful period pain and pain with sex during and after x

[Nat1985]

Hi, I’m never bleeding when I have a flare up. The easiest time of the month for me is when I am having my period, to be honest. I take mefanamic acid. Have you tried that? I really hope you’re ok x

[HMC18]

Hi there,

So I am just a step ahead of you - I was diagnosed with Stage 4 in December, had my MRI in January and results just 2 weeks ago. Now waiting for a specialist / more surgeries.

I cannot really help you to be honest but just to comfort you that you’re not alone and message at any time 💛. I also take Naproxen and dihydrocodeine in my flare ups which is usually my ovulation time / plus randomly but not during my period time. The pain killers sometimes don’t work and make me very constipated which is torture as I have severe Endo on my bowel. I live in my pjs bottoms (nice and baggy) with hot water bottles and hot showers to try ease some pain.

I tried to ask my consultant what I could do while I wait but she couldn’t offer me much support to be honest. So just waiting for the specialist.

Take care! X

[Petitechili]

Hello,I haven't had a period for over 2 years and I'm still in agony almost every day. I've had 3 excision surgeries and while they have stopped the very sharp pain, I still get continuous cramping and aching.

I have changed my diet as best I can. I avoid dairy, gluten and I'm vegetarian. That has definitely helped, but I know when in pain, comfort foods are the only thing that's appetising. I hope you get some comfort in knowing you aren't alone. Your pain is real. I know there are days when I wonder if I'm going mad and imagining it. Xx

[Endowarrior84]

Hi LaLuz , I’ve been diagnosed with terminal endometriosis frozen pelvis and deep implants on bowel bladder and urethras, endometrioma on both ovaries and I get flare ups throughout the month so I know how your feeling, and it is horrible! I’d say you need more pain meds i take 500mg naproxen twice daily, zapain 30/500 two tablets four times a day, 300mg of gabapentin three times a day and oramorph for breakthrough pain relief, I don’t know what I’d do without all of that. Also if you have access to a bsge centre get referred to them as they are specialists in gynaecology. You will be better understood and taken seriously. Probably would be dealt with quickly too. I’ve tried transenamic and mefenamic acid to control the heavy bleeding but it didn’t help me. I also don’t get along with birth control it exacerbates my symptoms. I’m hooked up to a heat pad on full all day every day I’ve had to give up my career unfortunately. I’ve tried everything that people suggest I.e change diet more exercise etc but again for me these did nothing for me. I am depressed so on antidepressants as well as sleeping medication. So the only thing I can say is to get a meds review with your gp and get some stronger pain relief and definitely try to get into a bsge centre asap, I find warm baths help also with flares and try to rest and take it easy. I feel bad for you if my pain is anything to go by. All the best for the near future and I hope you get sorted soon xx

[BrightLights88]

Hi lovely. Your experiences sounds exactly what I have gone through when I had stage 4. I am endo free since 2019 after a successful lap.

I have noticed that no pain relief will help with flare up till you had the surgery to remove it. As it only triggers the flare up. I stop codeine as that made no difference and moved to cocodamol 30mg/500. This I have found pin pointed the exact area where I was in pain.

Other than that I used a tens machine and my best friend the hot water bottle.

x