Any ideas for pain management? - Endometriosis UK

Endometriosis UK
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Any ideas for pain management?

Aishaa112
Aishaa112

Hi Guys! I’m 20 and only recently has my endo diagnosis been confirmed. I am really struggling on the bad days and I’m really struggling to make it into work where I’ve been in so much pain! I’ve also been getting water infections quite frequently which doesn’t help! Does anyone have any suggestions on what I can do to help relieve the pain? I’m on medication for the pain but some days it just doesn’t cut it! Thank you! 😊 x

29 Replies
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What meds are you on?

Aishaa112
Aishaa112 in reply to Linley

I’m currently on dihydrocodeine, I was on naproxen but it was causing me a lot of blood loss so they stopped that and I was on diclofenec suppositories but they were stopped because it may have done some damage to my bowels. I’ve also recently been prescribed tranexamic acid.

OK tranexamic acid thought was for excessive blood loss so that is obviously relevant to you. I am only a lay person so can only suggest that you have a phone consultation with your GP re pain control as my meds were different, anyway we are all different and I hope you find a way forward. Keep safe

Aishaa112
Aishaa112 in reply to Linley

Thank you so much, you too! 💖

Have you tried, hot water bottles and a nice hot bath?? Sometimes they relieve my pain abit more then painkillers do. Also I know it sounds stupid but I’ve also found an ice pack helps sometimes too. I’d also ask your GP If there’s any stronger pain relief you could take.

Hope your able to get some relief soon x

Aishaa112
Aishaa112 in reply to Lover124

Thank you so much! I find that a hot water bottle does help so much! I’ve never thought of the ice pack! I’ll have to give it a go! I’m willing to try anything at the minute! I feel like I’m practically glued to my bed where I’m in so much pain x

Lover124
Lover124 in reply to Aishaa112

I feel you, ive practically been glued to my bed for over a week with the worst pain. The ice pack works wonders sometimes when the hot water bottle doesn’t. What pain relief are you taking at the minute? x

Aishaa112
Aishaa112 in reply to Lover124

I’m currently taking dihydrocodeine, tranexamic acid and I’ve been prescribed morphine but I hardly take it because of all the things that go along with taking it! I’m just really struggling at the minute with what to do! I’ve read things like going dairy free and drinking herbal teas could possibly help to a certain degree! But I’m not sure if it’s any good? Xx

Hi.

I found going plant based reduced my levels of pain. I also find that the more stressed I am the more it hurts. Sounds daft but it is true! So anything to relieve stress - aromatherapy, meditation..... I'm not into that kind of thing normally but like you was willing to try anything!!! I have also tried a TENS machine when it has got really bad. You can get them for £20ish from amazon. Didn't work too much for me but made me feel like I was doing something. I also listened to the free bit of the curable app. Talks about what pain is and it did change the way I thought about my pain which again reduced it a bit. I have also done yoga. Positions to loosen tight muscles up round the pelvis were good - I think the theory was everything tightens up when in pain. I also take lots of painkillers. The main one that made a difference was pregabalin as I had lots of nerve pain and this really helped but that depends on your type of pain and is a doctor conversation I think.

Hope some of this gives you some ideas to try. Sounds like different things work for different people. It took several months for some of the effects to kick in, 3 months for the plant based diet but worth sticking with. Good luck xxx

Amazing! Thank you so so much! What sort of yoga positions help?

There are a few I do. I paid for a session with a local good yoga teacher who designed a routine to help but there are a few online. I don't know any names I'm afraid! There are a few where lying down with feet together and legs apart with a variety of variations - on bolsters etc. Evidently gets blood flowing round?! I have ones for when in lots of pain and ones for when in less pain that in theory should prevent more.... I did find some online though before my lesson. Lots of yoga poses seem to help as it all stretches stuff. Can you tell I am not a natural yoga goer?!

Haha I’ll definitely try yoga!! Thank you! X

Lubax
Lubax in reply to Aishaa112

I'd also recommend Yoga, my local lady recently started a women's yoga specifically doing poses that are beneficial to us & our cycles. I've got to say I'm a huge cynic, and went to the first class with pain, thinking it wouldn't make a difference and I left with no pain. So definitely worth looking into. Ive felt really disconnected with my body since this all began and its helping me listen to my body & feel more connected to myself again.

Emsy
Emsy in reply to Aishaa112

Hi I take gabapentin for my pain. I used to take mefanamic acid which reduces blood flow take care xx

Aishaa112
Aishaa112 in reply to Emsy

I’ve never been put on gabapentin before, d you think it’s worth asking my gp about it? Thank you so much for your help I really appreciate it x

Do you use paracetamol it enhances other painkillers. Relaxation also helps me.

I do! It’s quite surprising the difference it makes too! I try to relax but I’m just so stressed with everything at the minute!

On real bad days I take an Epsom bath and then do a Castor oil pack w heating pad over. It’s messy, I have to put crappy sheets down and have specific tshirt and heating pad I use with bc it gets everything oily. But on the bad days, it’s EVERYTHING. It’s a miracle really. I could not live without. Kept me out of ER countless times!

22 yrs w stage 4 Endo, tried it all!

Meds: Oxycodone, Tylenol+Ibuprofen. *Diazepam suppositories*

I also do cupping, mediate, acupuncture, Tai Chi and gentle yoga. Pelvic PT is very important and helps a lot.

Must have item: Arnica massage oil. I use on bad days and almost every night w heating pad, it’s extremely soothing and truly helps. It’s a bit oily so u have to wear a tank you don’t care about. But it’s not as messy as castor oil. You can get the arnica and castor oil on Amazon cheap.

NOW Solutions, Arnica Warming Relief Massage Oil

amazon.com/dp/B0019LWTWG/re...

Aishaa112
Aishaa112 in reply to Pnut333

Oh my god thank you so so much! This is a massive help! Xx

Hi,

I'm sorry to hear you're struggling! I'm in the same boat):

So many good suggestions from people so far! Something else I find helps are beyou period patches, they're all natural and biodegrable plaster like patches that work up to 12 hours. As they're non heating they're great in the summer plus super thin and you apply them directly to skin so you get the most effect unlike hot waterbottles. They have a lot of good reviews from others with endo. Personally I find when with meds they help take the edge off on really bad days, and good when out and about but on their own they don't do as much. But everyone's different!

Apparently they also do a cbd muscle balm that people rave about, I haven't tried it yet but I'm planning on it!

I'm 24 and also struggle with the whole pain management thing while trying to live out my twenties. If you ever want any advice or help or anyone to chat to feel free to message me!

Xox

Hi yes the gabapentin are good and come in different doses, 100mg up to 300mg. The higher dose can make you feel a bit drowsy so I take it about 6-7pm then you can drift off to sleep later on. They are quite strong. But I'm also on the progesterone only pill and it took about 2 months to work but now no periods and very reduced pain. Take care xxx

Aishaa112
Aishaa112 in reply to Emsy

Thank you!

I have been on pretty much everything at one time or another, none of which have even come close to touching my pain. I am currently on Oramorph as it’s the strongest thing the gp can prescribe but I am on the waiting list to see a pain specialist. I am still in a lot of pain all day, every day but the oramorph takes a bit of the edge off. x

Aishaa112
Aishaa112 in reply to DAML8

I’ve recently been prescribed oramorph and It does help on the bad days! Although not enough for me to be comfortable. For me it’s a drug I don’t really want to take but I don’t have much of a choice, because everything else on the really bad days don’t seem to touch it! I really struggle with the fact that I can’t work on it. I’m really struggling with not being able to go to work it honestly is the most rubbish thing ever x

DAML8
DAML8 in reply to Aishaa112

Yes i agree, that is why they have referred me to the pain specialist as i said i don’t want to be on oramorph anymore (I’ve been on it for 5 years - 5ml 4-5 times a day!) but they still keep me on it. I was due to see the pain specialist soon as my application has been accepted but due to corona virus they are cancelling all appointments so i’m not sure when I’ll get there. x

Aishaa112
Aishaa112 in reply to DAML8

Oh god! Fingers crossed you get to see one ASAP! X

DAML8
DAML8 in reply to Aishaa112

You too! If you manage to find something that helps your pain please feel free to let me know..I’ll try anything lol x

Hi are u on any contraception? Silly question I know but this can help too, I'm now on my 3rd dose of the depo injection and this has helped with some of my pain (its stopped my periods) I also take naproxen, codeine, paracetamol and Morphine, these help most of the time, also a gd wheat pack is a must 👍😊 it might be worth speaking to ur gp and ask if u can try some different meds, I've had to change mine many times, hope this has helped and gd luck xx

Hi , hope you’re feeling a little better , I’m 20 as well and sometimes it can feel so overwhelming ! I found this forum really helps just to rant about how you’re feeling .

I was really struggling with pain and found hot water bottles really helped but only whilst they remained super hot - I then found an electronic heat pad from Argos , where you can control the heat and it seems to cause less scarring too! I also purchased some ibuprofen gel which can be applied directly to the pain in your stomach etc. Sometimes I find buscopan tablets can help with cramps.

Hope this helps? Xx

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