How to deal with the pain: I would like... - Endometriosis UK

Endometriosis UK

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How to deal with the pain

Endometri profile image
11 Replies

I would like to know how other people deal with the pain and what medication they take to help.

I haven't been diagnosed as of yet and I have just been referred to a Gyno and they are going to look into doing a lap. The pain is so bad that it prevents me from doing my normal daily activities and I can't focus at all. Just looking for some advice on how you all try and cope with the pain. Is there anything you could suggest that might help me? Or anything your doctor has prescribed before that might help? Thanks

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Endometri
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11 Replies
Rose2001 profile image
Rose2001

I haven’t been diagnosed but i have suspected endo and i take mefanamic acid and transamic

Narcica profile image
Narcica

Hi,I’ve been on Naproxen, amitriptyline, opioids and honestly everything except patches. I have stage 4 and it also causing me other underlying chronic illnesses like spondylitis, osteopenia and arthritis. I am not going to lie; I buy edibles to get some sleep. And even those don’t help sometimes.

Luc81 profile image
Luc81

I was taken naproxen and paracetamol, low fodmap diet helped , try Nancy's nook on Facebook, you have all the knowledge about endometriosis there and list with especialist who can help with endometriosis, good luck

Washington1 profile image
Washington1

Hi. Sorry to hear you're in so much pain. I understand how debilitating it can be. The things that have helped me over the years... I have found a tens machine helpful and wish I'd invested in one a lot earlier than I did. I used the Ova machine, although they've brought out a new model now, so am unable to comment on how well their latest model works. But, the tens machine will often take the edge off and lessen the time of being in severe pain. Has your doctor explained how to take your medication? I ask this because I spent years thinking that painkillers didn't work for me, only to eventually find out that I'd been taking them all wrong. I used to wait for enough pain before taking meds, thinking they would do a better job then, but turns out it's the other way around. With meds like mefenamic acid, they recommend you take them before pain starts if you can time it somehow, or at least at the first slight twinge of pain. They then have the chance of blocking your pain receptors. I used to leave it too late and therefore rendered them useless. Once I learned to take them earlier on, then this improved things. I was eventually prescribed an orodispersible form of Tramadol (orodispersible to help me stop being sick). These were the best for me, although they seem to have also caused some tummy problems. Turns out the doctor should have also prescribed me something to help line my stomach. Another medication that helped for a while was Voltarol (suppository form, again to avoid throwing up). But these eventually gave me breathing problems. They were the best though at dealing with the pain. If you can get the Mefenamic Acid, etc to work along with a tens machine, that sounds like a way forward. Best to keep off the heavier duty meds in case you need them at some point down the line. Some people have pain for a few years and it does ease off, so I hope that will be the case for you. Last thing... I found it best to lay off certain foods before and around my period. Things like red meat, alcohol, sugary things. Some people have found their symptoms ease after going gluten free for a year. I found going gluten free difficult as often gluten free produce is full and loaded with too much sugar. There are some good recipe books out there though, with some good ideas for cooking and eating without the added burden of too much sugar in your system. I hope some of this will help you and I hope you feel better soon. xx

Carebear92 profile image
Carebear92

Hey! Sorry you’re feeling so impacted by the pain, it really can be terrible! I use co-codamol (15/500) and ibuprofen together and I have tranexemic acid but I’m not sure they have ever really helped. The codeine at that strength makes me a bit woozy but does help with the pain so I try to spread doses out if I can so I can do my normal stuff. I love a tens machine or hot water bottle at home but the BeYou cooling patches are also great if I can get out and about! I’m really desperate times in the past I’ve tried the raspberry leaf tea and Mediterranean diet which helped me feel more in control of my health but not sure on the immediate benefits. Hope you find a way that works for you.

Razina profile image
Razina

Sorry to hear that you are going through this! I can honestly say that being in pain every other day is not easy and is a challenge in itself. I take daily pain killers just to manage my endometriosis and Adenomyosis but I still end up in hospital every other month due to the pain and not being able to cope! I currently take cocodamol 30/500mg, mefenamic acid and buscopan. On period days I take tramadol and diclofenac suppositories. Hope that helps

R0zie profile image
R0zie

Hey! I’m still waiting for diagnosis too but I use hot water bottles, heat patches and deep heat. The doctors have prescribed me naproxen and cocodamol but I don’t like having to rely on pain meds so don’t take them unless I feel really necessary. I got recommended a Tens machine on this forum and just got mine 3 days ago and I LOVE it! I got the Auvon one from Amazon on offer for £25.00 and it’s the best money I’ve spent! I get a lot of pain on my lower back, pelvis and across my shoulders and it’s like a wee massage - really helps to use before bed. Only other thing I find helps is lots of rest and hot baths. Hope this helps xoxox

Endometri profile image
Endometri

Thank you all so much. This has been super helpful. I have tried quite a few of these, will definitely get a tens machine and fingers crossed will see some improvement. X

CeuBlue profile image
CeuBlue

If you are looking for natural remedies, I recommend applying calendula oil to the skin of the abdominal region to help with pain. I mix with a sore muscle lotion that has menthol, peppermint oil, and arnica before applying. For me, sometimes I find that oregano oil supplements and ginger root supplements help soothe some of the inflammation and pain. These things work better for me than ibuprofen or Tylenol. Also pelvic floor PT has helped me a lot with my pelvic pain and getting off of birth control pills.

Rachmaninoff profile image
Rachmaninoff

Hi, So sorry to hear the pain you are enduring. I hope some of our replies you have found helpful. My advice will probably be frowned upon but as a responsible user I wouldn't hesitate to try oxycodone slow release 10 mg plus gabapentin 100 mg together. The first removes the pain and the second one gives you a slight buzz. Having been on this med for about 2 yrs I found I can carry on with day to day activities. I take these twice/day say 6am and 6pm. You can also get 5mg oxycodone that's not a slow release but it wears off after 4 hrs. Your dr won't recommend it but my drs are fine with it for me. I am a chronic back pain sufferer (amongst other conditions) you will find the med makes you woozy but this settles down after a while. Not recommended for driving until your body gets used to it. Hope this helps.

Lasa profile image
Lasa

Hi mefenamic acid definitely and also a tens machine designed for periods endometriosis and a hot bottle at night helps x

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