How to manage my pain before diagnosis? - Endometriosis UK

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How to manage my pain before diagnosis?

Tanners profile image
8 Replies

Hi ladies

I haven't been diagnosed with anything yet, so far all tests have came back clear.

I have a first consultation with a gynocologist in 5 weeks.

Since referral from my doctor the pain I am experiencing has intensified, been constant dull ache for weeks now with a few episode of intense pain (like right now!)

Ibuprofen doesn't really work (takes the edge off but doesn't make it go away), hot water bottles kinda help but can't use this at work and heat pads wouldn't work as pain is where tummy meets leg so would be on a fold.

I'm close to crying today.

What else can I try? Any advice much appreciated.

T Xx

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8 Replies
Lillil profile image
Lillil

First of all hugs! I feel your pain!

Make sure you take paracetamol regularly even if it doesn't help, it needs to build up in your blood levels and should be base of pain killers and add on anything on top. Next step is a non-steroidal anti-imflammatory. Like ibuprofen, but as thats not working you could get diclofenac (volterol) from over counter or gp or i take mefanAmic acid which you can only get from gp which i find more helpful and lots of ladies on here seem to be on naproxen. Then on top of that you can have codeine which can make you constipated so drink lots, have lots of veg and fibre and take laxatives if needed as could make pain worse. If it gets really bad or for the severe pain you may need something like tramadol.

Both codeine and tramadol are addictive so only take smallest amount when needed.

Why can't you have hot water bottle at work? Could you use a heat bag? In microwave? Or try deepheat?

If its a long term thing and no meds work i got a tens machine which is amazing, but they are expensive.

I know it feels helpless but there are things that can ease it.

Try and come on here regularly too. Talking to people who understand really helps.

Also can you take some time off work? Make sure you look after yourself.

Hope you get some relief soon xxx

Tanners profile image
Tanners in reply to Lillil

Thanks for your reply.

I didn't realise that paracetamol acted as a base, I've been on painkillers for so long that I kinda see them as smarties and never bother! However I will now take these regularly along with the ibuprofen. I have diclofenac left over from my shoulder so may use that on the bad days too.

A heatpad would be a very good idea, guess it's easier to mould into the curvy-bits!

Thanks again for replying, being on here does help. It makes me realise I' m not alone, it's not all in my head and that it could be much, much worse!

T Xx

Hi Tanners

I am so sorry :( I have same problem and because I am allergic to ibuprofen and other non- steroidal anti inflammatory drugs I take co-codamol. I know that codeine is addictive but sometimes there is no other choice. Besides there is a lot of people with chronic pain that take much stronger/ addictive painkillers. If you get appropriate treatment then you can slowly come off co-codamol.

Another idea- you can ask your GP for Tramadol if the pain is so unbearable.

Best wishes

Exx

Tanners profile image
Tanners

Thanks for replying.

I'm hoping a constant supply of paracetamol and ibuprofen will get me through until I at least have a diagnosis (or not, whatever may happen) but if not then I will go back to my gp and see about something stronger.

Talking to people on here really does help. Thanks again.

komeara profile image
komeara

Hi Tanners,

So sorry to hear you're suffering at the moment. We're probably both in the same boat of waiting for diagnosis. Where your pain is seems to be a lot of where I get pain too and it's a difficult place to get to.

My main problem with painkillers is the wipe out effect and although they can take the edge off, it's still there which sounds like what you experience.

After my lap last year I was told a combo of paracetamol and ibuprofen work better than say 2 x paracetamol or 2 x ibuprofen, which could be for the build up base reasons Lillil mentioned.

I haven't really found a solution I can offer as yet apart from taking the edge off with paracetamols or heat bags, like the long rectangle, so they can sort of lie on your leg in between your hip and leg (originally bought it for my dog's rheumatism in her neck!) and it can help sometimes.

And it can depend what level it is, but sometimes going for a short walk can help me, I don't know if it's just being out and about, or the thought I can't bawl in front of people (not normally anyway, have done it twice at the park though when trying to play football through it didn't work and I must have looked absolutely barmy) that helps me but then that's no option if it's peaking.

Sorry not to be of a lot of help, I just wanted to let you know I was thinking of you.

x

Tanners profile image
Tanners in reply to komeara

Thank you. At least we are all in this together.

I've got a stack of paracetamol and ibuprofen with me today, and my alarm set for every two hours!

Xx

PinkDaisy profile image
PinkDaisy

Hi T

Sorry to hear you're suffering. I seem to have similar pain to you & take regular paracetamol when it starts to increase & top up with codeine from my GP if that's not enough. Ibruprofen is good but can raise your blood pressure, so keep an eye on that if you can.

My pain is also in the join between leg & tummy but I bought myself a mini water bottle from Debenhams (other versions available I'm sure!) which I can tuck into the fold easier than a normal sized bottle.

Hope this helps :)

PD x

fatefulserendipity profile image
fatefulserendipity

Big Hugs Tanners, I too have not had a diagnosis yet. I saw my consultant who put me on Zoladex. Last one was Monday just gone, Pain at the beginning was level 8/9 and now alot better 2/3. So at least now I can get through the day at some reasonable level. Walking is better for me sitting and laying down is worse for me strangely. Although when i went for my last injection at the doctor's she said she doesn't think the pain has gone enough for the consultant to think its gynae related. Although I think going from a 8 to a 3 is very good. Consultant appointment not come through yet but should be by the end of May. Just remember you are not alone x

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