Pain every single day …am I alone?

[endowarrior12]

I sometimes feel alone in the fact that my pain is daily ( not flare up pain but general pelvic pain and fatigue) . I’m finding it increasingly difficult. One of my close friends has endo also but only has pain around her periods. Does anyone else struggle daily with their endo? 💛

[Endowarrior1807]

I get pain daily too - intensity varies though as some days as worse than others. I get other symptoms daily too like fatigue nausea bloating and then a really bad flare up around my period.

It’s quite hard having to cope with the pain each day if I’m honest.

But people experience different kind of symptoms which is why your friend may not get it everyday

Are you on any painkillers to help you manage?

[endowarrior12 in reply to Endowarrior1807]

Yeah the fatigue, nausea and bloating too, although I have started to take peppermint capsules for the bloating which has helped. I’m on regular tramadol & naproxen, also on Decapeptyl with add back HRT and of course my old faithful hot water bottle x

[Hidden]

Yes i get pain too. If I do a lot of work and walk a lot or stay on foot for a long time I get tired quick and get stabbing pain and also almost everyday I get these brown spotting which are painful. When I pee or whenever I go to toilet I have pee and sx is out of question. I feel like I want to get opiads or something heavy against the pain because nlthing seems to be working. I take pills against vomiting so I can eat because the pain makes it hard to want to eat . I am having a second surgery in a few months. If I would n t want children I would have done since long hysteroctomy. I pray to get pregnant so I can do that after if the pain continues.. I tried two ICSI s until now with no success.

[MrsMarlene]

Yes, I experience daily pain too. In fact for 2 weeks out of 4 my pains are very severe - this is what I call my flare up.I exist on tramadol 50mg x 60 a month and daily medical cannabis THC from clinic. I live my life permenantly under a heat blanket.

I'm stage 4 endo, pcos, adeno waiting for hysterectomy with endo removal from my bowel also. I'm 6 months into a years waiting list for surgery.

Its so damaging having to suffer daily chronic pain and juggling painkillers to keep on waiting for my surgery.

[Hawk136]

yes I do too. I can’t stand up to put trousers and socks on anymore I have to sit down and it hurts to stand having a wash in the morning, brushing teeth etc until I can take naproxen/ cocodamol etc . Mine is worse at night I can’t sit down some days as there’s something trapping my sciatic nerves I get both legs and feet tingling. Waiting for mri as internal ultrasound just picked up fibroids. I don’t feel me anymore. I’m struggling to exercise now as my pelvis so painful and I’ve never felt so miserable…. even hoovering, carrying things , getting in the car etc hurts 🥺

[endowarrior12 in reply to Hawk136]

Yes I find not been able to do the smallest of tasks without pain and fatigue so frustrating

[Escapologygirl in reply to endowarrior12]

Summarised my life perfectly. I take paracetamol daily and try to only take ponstan (mefemic acid) on excruciating days. My endometriosis is on bladder and rectum and is best friends with my sciatic nerve on left hip

[lucikam in reply to Escapologygirl]

May I ask if you take paracetamol or cocodamol daily? For how long and what is your dosage?

[Escapologygirl in reply to lucikam]

I take paracetamol and usually its 2 500mg first thing in the morning just to get through the day on most days. There are couple of days where I don't and I take those as a win. On the days I have to take it its 2 in the morning and 2 in the evening

[lucikam in reply to Escapologygirl]

Do you mean you take one 500 mg in the morning, and 2 in the afternoon and 2 in the evening? Did you try cocodamol?

[Escapologygirl in reply to lucikam]

No idea what cocodamol is, some days my hip back pain is so bad first thing I take 2 x 500mg in the morning, and if needed 1 x 500mg in evening after dinner. On the days I'm in complete agony doing anything including toilet I just take the ponstan (mefenemic acid) only

[Deniz96]

Hi,

i was stage 4 Endometriosis now i think i’m stage 1 after having the cysts in my ovaries removed. However i still daily basis get pelvic pains very sharp also around ovaries. I had my emergency surgery 31st August 2022 abroad while on holiday. I’m slightly worried it might be coming back as it is possible as i was told after surgery. So i told my concern to my gp and due for an internal and external scan.

[Poxon1192]

hi I have pain everyday but worsens when I’m ovulating or on a period

[Marshkat]

I’m on Zoladex injections with Tibilone, codine, paracetamol, naproxen and on my bad days Oramorph. Been unable to work since September. Pain daily in legs, back and stomach and not sleeping much. I’m awaiting a complete hysterectomy. Just keep reminding myself it can’t get any worse and hopefully by summer I will be back on my feet again.

[Shelldob]

hi yes I too have pain daily, I am office based for work & my boss brought me a wrap thing that plugs In to the mains to help ease the pain so that’s how I cope. That, pregablin (as little as I can manage) and fake smiles 🥺 it’s so hard most days and when I eat it gets worse, so unfortunately as soon as I’m home, had tea & showered I am in bed!! Hey ho, keep smiling ladies xx

[TogetherWeAreStrong Moderator Endometriosis UK]

endowarrior12 as you can see from the replies to your post, you are not alone, I am also in the group that has daily pain and other symptoms (all of the above) and it's very hard getting through the bad days and on the good days you worry that it will turn bad! We find ingenious ways to cope with the everyday things that most people don't think about and that makes us even stronger