Endometriosis/ bladder/ pain management - Endometriosis UK

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Endometriosis/ bladder/ pain management

Oliviamelvin19
Oliviamelvin19
13 Replies

Hello,

I have had my laparoscopy in Where they lasted everything off! However the pain is returning and I’m starting to faint from it again. I’ve just started a new job and can’t afford to loose it! I lost my last job because of all this. What can I do? What pain reliefs help people? I was taking pethedine for the pain as that seemed to be the only thing that seemed to help but it gave me hallucinations at night so then I wasn’t sleeping!! Also what are the symptoms of it spreading on to your bladder?

Any comments would help greatly!

Thank you!

13 Replies
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Laura_T

Hi. I just take ibuprofen and co codamol 30/500. Started taking cbd tablets. But haven’t noticed them working yet. Tried tramadol also but dr took me off them as didn’t want me to become addicted. Nothing really helps the pain. Well a hot bath but as soon as you get out the pain is back again. With regards to the bladder I feel like I can’t hold a half full bladder for long, very painful. I have a pressure pain inside my foof just below my bladder. Sometimes a burning sensation but not like cystitis. It’s really hard to explain. Is that how yours feels? X

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Oliviamelvin19

Thanks! I’m just so stuck as nothing helps the pain and I don’t know what to do anymore!

Yeah that’s like the pain I’m getting. I also have to get up 2 or 3times in the night to wee as I just can’t hold it!

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Laura_T

Yes I’m the same in the nights. So bad now that I try not to drink anything after 7pm. I’m crying on a daily basis. Breaking down in work. It’s just awful and because I look well people don’t really understand. I bought a self heating belt strap off eBay for my back and find that helps with the back pain.

I never had this bladder issue before. This is a new pain. Consultant thinks the endo is now causing issues with my bladder. I’m 31 and feel like I’m so much older 😭 x

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Oliviamelvin19

Yeah I know! It’s ridiculous that we can’t do normal things without it effecting our lives! I just started a new job and really can’t afford to loose this one! My doctor has done be another referral back to the consultant because she thinks I need another op. I’m thinking of getting a Tens machine to see if that helps with the pain! I know, I’m 20 and feel like a hundred!!!

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Laura_T

Yes I’ve just bought one but haven’t tried it yet. Heard good things about it. I’m lucky with my employer that they understand why I’m sometimes not in work. Just talk to them. Maybe print some information off and show them how it effects women and how it effects you. Maybe they might be a little more understanding. I’ve had a letter from my gp for my old employer requesting lighter duties in work. Employers don’t have to adhere to it but mine did. Maybe ask gp if they could do that for you x

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Oliviamelvin19

Think I might get one this weekend! Thank you, I will defo look into telling my employer about it. I hope your pain eases up soon! X

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Laura_T

Me too. And hope yours does x

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laurenrosse

hi, i take 5 advil at a time when i have pain, that is 1000mg of ibuprofen and it actually works. this is the sports medicine dose. i am an extreme sports athlete who is normally very strong, but this spring my endo went crazy and i have had two laps since june 2018, just had the second one one friday, dec 7th 2018. And noticeably doing SO MUCH BETTER! before this second lap i was in debilitating , excruciating , severe pain constantly. bed/house ridden and i live in hawaii, i was in a proper miserable state mate! i had to take about 20, 200 mg advil a day. the only thing that worked to kill the pain, so that would not make me addicted. I started taking norethindrone(progesterone only pill) 10 mg a day ( 5 mg 2x's a day) and after about one week I was also basically pain free. BUT now that the surgery two days ago removed both my chocolate cyst ridden left ovary and hydrosalpinx fallopian tube on my left side, i feel like i got a new lease on life. please get on progesterone only BCP, and you can take 4-7 pills of 200mg advil or ibuprofen....i would take the advil liquid gels it is easier on the stomach and they work faster, take with food. best wishes and i hope you can keep your job dear! more power to you... the progesterone only birth control was the only thing that eased my pain in any real way besides surgery, but this surgery was great! i can feel the difference. i feel SO MUCH BETTER AFTER SURGERY EVEN THOUGH I AM IN RECOVERY and only a couple days out, THAN I DID PRE SURGERY>>> AMAZING!!! wishing us all freedom from this disease... endo sisters unite!

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Oliviamelvin19

Thank you for your help! Hopefully this will help! I’m having a major flare up at the moment! Hope things get better for you soon:) x

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summerhass27

Glad you are feeling so much better. Could you talk a little bit more about the progesterone only pill? I've been on the combined pill and the pain (which is constant) feels absolutely no better, and perhaps even worse since I started it. I'm wondering if you also had an experience with the combined estrogen/progesterone pill and at what point you and your doctor decided to switch it? Thanks!

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laurenrosse

the progesterone only pill i take is called norethindrone, i take 10 mg a day, in two doses of 5mg each. it really curbs my endo symptoms. and the combo pill also actually increased my pain and did nothing good for me... but the progesterone only fully did the trick!

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LISaprag

How long did it take for the progestion pill to work do u have to give it time

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laurenrosse

i plan to get off the progesterone in a couple months, once i heal up fully from surgery

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