Fed up of pain from endometriosis and not... - Endometriosis UK

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Fed up of pain from endometriosis and not finding a painkiller that actually helps

Sameerap profile image
25 Replies

The pain is constant and I have not yet found a painkiller to help relieve the pain, nothing works. And pain is getting worse it now shoots round to my rectum which is extremely painful . I get agonising pain in my left abdominal/ovary and bowel it sometimes feels like something is pushing down on my insides and then the cramping starts, it's so bad when I'm in pain I can't do anything. I'm a support worker aswell so my job is quite hands on and when this plays up o feel useless cause I can't do anything, there is no telling when the pain will come. With my pain being so bad I just want to know what strong painkillers worked for them, as I've had naproxen, mefenamic acid these have not worked and currently on meptip which I only take at night and they ment to last me all day but I still get agonising pain. I sick and tired of all this pain

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Sameerap profile image
Sameerap
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25 Replies
Krithika profile image
Krithika

I have some of the same issues, I tried tramadol and it really helps

Sameerap profile image
Sameerap in reply to Krithika

Does tramadol make you really drowsy?

Honorac profile image
Honorac

I know how you feel I’ve had to come out of work on the sick for a while until I could get the pain under control I used to be on Cocodamol 30/500 and naproxen together worked for me but naproxen is pants !

I’ve recently been given cocodamol 30/500 and mefenamic acid and it is working ! I’m also on the pill which doesn’t work but I still have to take it 🙃 I’ve found it’s trial and error because your body can become used to meds so changing it up can help x

Sameerap profile image
Sameerap in reply to Honorac

I have tried mefenamic acid, and co-codamol 30/500 which never worked for me unfortunately, also had naproxen which is rubbish and atm on meptazinol 200mg which don't work, pain is still agonising. I am on the mierna coil which has stopped my periods which I would of thought pain wouldn't be as bad but Is still horrible, thanks for the help though

mystyle profile image
mystyle

Hi Sameerap I sympathise with you. I have had the same pain, sometimes it can be too painful I'd be on my knees and not able to get up, (during my period) I was not able to sit properly on my bottom and very very painful when passing stool. 2 x Codeine Phosphate 30mg + 2 x paracetamol 500mg helps with the pain but unfortunately you must not take these when out at work or driving. Have you seen a specialist? I have and it has help me a lot,, I am now basically pain free, Occasionally mild pain comes with a very light period ( I have mirena fitted ) more like spotting. I am now very happy since my operation.

Sameerap profile image
Sameerap in reply to mystyle

I haven't yet tried codeine phosphate. I am on the mierna which has actually stopped my periods but I still get the agonising pain. I tried all other birth control which never helped with my periods they were still agonising, which I thought now I don't have a period due to the coil it wouldn't be as bad which I was wrong. I've only had a laprascompy to diagnose the endorsement which they never removed any of the endorsement even knowing that it caused me such servere pain this is going back to a month ago, I'm still waiting for my follow up appointment which can take up to 3months, spoke to my Dr and he reckons as we haven't found a painkiller to help with the pain then hopefully I will be able to have surgery to have endometriosis Lasered off

mystyle profile image
mystyle in reply to Sameerap

I had mine lasered off in July,, I had stage 4 severe endo. Adhesions and scarrings,, endo were stuck between my bowel and womb.. They also have had to cut my ovaries opened scraped and sticth it back.. Everything seems good at moment. I hope you'll get sorted soon.

Sameerap profile image
Sameerap in reply to mystyle

I'm not sure what stage endo I have as all I was told after my laprascompy is that they found endometriosis. Waiting for my follow up appointment, hoping to have it Lasered off as not having any hope with painkillers my Dr is agreeing that it needs to be Lasered off so hopefully gyno/surgeon will agree. Glad everything is going good for you and thanks

laura-20 profile image
laura-20

Oh you poor thing :-( Rectum pain is just the worst, isn't it!

I never really found that painkillers worked that well, but here are some suggestions for what helps me:

Magnesium spray - spray 10 pumps morning and night on my belly and feet, and directly on my belly and lower back any time I feel even the slightest niggle. This really helps with cramps, but it can sting when you first start using it.

Magnesium powder supplement - this could be trial and error, as I found capsules and some powders upset my tummy. The one I take now is MagFX.

Cramp bark - I've tried capsules, drops, and tea. This works best when you start taking it a few days before your period if possible, but also helps dull the cramping if you take it when you start to feel the cramps. They all work fairly well, but I probably prefer the drops.

Epsom or magnesium salt bath - a couple of cups in a nice warm bath always soothes the pain a fair bit.

Changing diet - the best I've ever felt is when I was being really strict on an anti-inflammatory diet. I was following the AIP at the time, but there are a lot of similar ones. It cuts out dairy, wheat, and sugar, and just focusses on wholefoods. That month my period actually arrived without me realising - I had ZERO pain! I couldn't believe it! I've slipped a bit now, but I really notice a difference in pain levels when I'm being strict and avoiding anything processed.

I've been reading a lot about the Livia device, or using a TENS machine lately too. There seems to be a lot of positive reviews on those helping pain, so maybe worth a try?

Good luck, I hope you get some relief soon!

xx

Sameerap profile image
Sameerap in reply to laura-20

Thanks for your suggestions I will be visiting a dietitian soon for some advice food wise and my diet is very limited as I'm really fussy and most healthy food majority fruit and veg actually make me feel sick. So I'm not the healthiest person although I do eat alot of meat for my protein my body loses out on the fruit and veg side. I also don't get periods due to the mierna coil stopping them so a couple of your suggestions might not work if it has to be a few days before as I don't actually know when my cycle is

ELovett profile image
ELovett

I too encounter this pain. I am currently on Percocet and flexeril for the muscles and it has helped me to sleep.

Sameerap profile image
Sameerap in reply to ELovett

I have never heard of these will mention to my Dr thanks

Dee11 profile image
Dee11

The pains horrible enough but as if we really need the extra stress when it starts affecting work too! I’m taking tramadol and co-codamol 30/500; I’ll be honest, it doesn’t take it away completely but it does bring it down to more of a tolerable level and helps me sleep a bit better at night too x

Sameerap profile image
Sameerap in reply to Dee11

It's so stressful when it happens at work co-codamol 30/500 hasn't helped me as have tried, have not yet tried tramadol but may be worth me mentioning to my Dr thanks

Dee11 profile image
Dee11 in reply to Sameerap

Definitely try asking your doctor about. I take them together, sometimes with other painkillers if I’m having a really bad day but I try not to..... pretty sure it must be wreaking havoc elsewhere in my body!

Have you tried looking at other forms of managing the pain? For example, I know a lot of women on here swear by the Endo diet as a means of helping with the pain. Personally, it didn’t help me so I haven’t continued with it but for most other people it has, so may be worth looking into as well x

Sameerap profile image
Sameerap in reply to Dee11

I will be seeing a dietitian soon for some advice on diet as my diet isn't the best as I don't really eat fruit or vegetable or salads and they tend to make me feel sick so I'm very limited when it come to diet

MMich15 profile image
MMich15

I was given cocodamol and it helps me. My endo was primarily on the bowels so the constipation side effect was a life saver in my case. I have heard that it can have the opposite effect depending on the person but I would definitely give a go as what you’re feeling sounds unbearable! Hope you feel better soon.

Sameerap profile image
Sameerap in reply to MMich15

I wish co-codamol would help me, my endo is on my bowels and ovaries and I have polycystic ovaries aswell so can get extremely painful, sometimes pain can be caused if I need the toliet which is so strange and irritating and thanks

PaoPetite profile image
PaoPetite

Hi dear! I am so sorry to hear what you at ein so much pain! I understand you 100% as I am I. The same situation at the moment! I have been in and out of hospital for the past three months! Just for hem to control the pain and send me back home as I am awaiting for a surgery date!!!! Which by the way hasn’t arrived! It is so depressing and you end up feeling hopeless and depress.... endometriosis is everywhere stuck in my ovaries uyerous and bowel! So I am sure you can imagine the pain.... after coming in and out of hospital constant visits to the doctor and trying every sort of pain killers the doctor sent me suppositories (voltarol 50mg) diclofenac sodium and although is pretty uncomfortable it has helped a little bit, so I am taking a mixture of painkillers during peack Times specially my period and ovulation , tramadol, paracetamol and voltarol and anti sickness, and it has helped me a bit more....

I hope you can find this helpful x

Sameerap profile image
Sameerap in reply to PaoPetite

Pain is horrible. I didn't realize suppositories could help with pain and must be uncomfortable. I have it on bowels and ovaries on top of having polycystic ovaries, and does tramadol make you quite sleepy as I know it's quite a strong painkiller, it may not be good for me as I do 12hr shifts alot being a support worker I need to be alert. And thanks and do you apply the votoral onto your abdominal area for cramps never thought of that may be worth trying thanks although I'm on mierna coil and don't get periods I would of thought pain wouldn't of been so bad still and thanks

PaiAngelica profile image
PaiAngelica

It sounds like you have the same kinds of pains in the same areas as myself! Same exact descriptions and everything. Advil liquigels worked very well for me. Better than what they prescribe me at the doctors offices. However, after some in-depth research, I found it can attribute to some pain as well as other painkillers if taken too much. It kind of feeds the Endo in a way. Something I just found that has given the most relief I’ve felt in years is CBD oil along with a paleo diet. I still get small shooting pains every day but it only lasts about 5-10 mins and then it’s over. I’ve been paleo for three weeks now post diagnostic surgery and the CBD oil for about a week and my bloating has almost completely gone away and my pains are just short little shootings in my ovary area but only for that little moment and then it’s done. My colon area I’ve felt no pain since going strict paleo after surgery. It slowly decreased and now I don’t ever feel it anymore. I hope this helps! I know what it’s like to be desperate for relief and nothing seems to help and doctors don’t listen.

Sameerap profile image
Sameerap in reply to PaiAngelica

I've had troubles for years and loads of drs were like it's just my bowels and gave me laxido even tho I knew it weren't then I seen a new Dr who listened and referred me for tests with gyno, but gyno was like don't sound like endo but low and behold it was, hoping for surgery to laser it off as not finding anything that helps as of yet. Unfortunately I can't get CBD oil here but may look into the diet thanks

zerendipity profile image
zerendipity

I have endometriosis - lesions on intestines, peritoneum, bladder, also ovarian cysts and adhesions. I cannot tolerate tramadol at all, makes me very sick though it helps with the pain. A huge problem is that tramadol is not supposed be used for more than 2-3 weeks as it's addictive. I usually take a combination of ibuprofen and paracetamol but it's quite tough on my stomach. My doc said that around period when I have most pain, I should take the combination regularly even before the big pain starts. That makes around 12-16 strongest otc painkiller pills a day, which imo is A LOT.

I was looking for an alternative because I just cannot handle taking so many painkillers, the side effects and liver damage... no thanks.

So I researched and stumbled on CBD oil, cannabidiol oil which is not psychoactive and is completely legal. And I must say that despite the bitter taste it is wonderful for my pain. I also have pain in my legs in the night, probably smth to do with my underactive thyroid and the CBD oil helps it too.

Now, since endometriosis also causes inflammation, it's best to use raw CBD oil with CBDa, which is anti-inflammatory.

I have yet to test how this oil works with my period pain but I can report back in about a week.

Kathy_Page profile image
Kathy_Page

Hello,

I was in the same situation and then I went for an accupunture session, I must say just one session has taken me out of the pain and I am doing fine without pain killers. Also avoid eating sugar, coffee, wheat, soy, dairy and see the difference. I am pretty sure with these two you will be better soon

TIAHRHIANNE1 profile image
TIAHRHIANNE1

I do the same job and find if you take 2 cocodomol (over the counter) with your mefanamic acid tablet then it eases the pain. It’s the only thing I have found that helps but I feel your pain, I end up nearly passing out because I get so light headed and as you know you have to just keep going with our job. Hope you find something that helps!

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