My first post: Hi everyone My name is... - Endometriosis UK

Endometriosis UK

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My first post

Niamhy profile image
9 Replies

Hi everyone

My name is Niamh, I have recently been diagnosed with endometriosis. It took me 10 years for the doctors to take my pain seriously. The doctors I went to would always say things like “the pain can’t be that bad” it has ruined my life because I can barely move the pain gets that intense. I’m on a lot of tablets for the pain but they don’t help much. The pain is like a sharp, stabbing/cramping pain that is really intense & I find it really hard to focus on anything else. I use a water bottle which eases the pain a bit. If anyone has any other advice or tips to deal with this pain I would really appreciate it thanks 😀

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Niamhy profile image
Niamhy
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9 Replies
abbycircus profile image
abbycircus

Hi Niamh, I dont suffer with the same pain as you, but I had a couple of bouts of severe pain, in the summer and I think it was a ruptured cyst looking back now, but the doctors didn't know what it was. I could barely walk for about 2 weeks, and some movements triggered cramps even the lying down, so I had to be careful not to get overwhelmed. I learnt that staying calm in my mind relaxed my body, I would focus on calm breathing and trying to be soft all over rather than tense up with the cramps. It really helped. Since then I have found other things help such as eating only small amounts so my bowel is not adding to the problem, and also we have a very friendly cat who is a great comfort. Cat therapy defiantly works. Anything that helps you feel more calm will help, even if only a little bit xx best wishes xx

Niamhy profile image
Niamhy in reply to abbycircus

Hi Abby, thanks so much for your advice. I would also make the pain worse if I move even laying down is painful. I noticed over the last few months that when I take shorter breaths while it’s at the really unbearable pain stage that doesn’t hurt as much instead of trying to take deep breaths because when it hits that pain stage deep breaths are really painful & seem to make everything worse. When you say the doctors didn’t know that’s the exact same as mine they didn’t have a clue what was going on with me either. It’s took me 10 years to get this far because I constantly had to annoy them because they weren’t taking me seriously. I hope you get an answer I know what it’s like not knowing & I think that is the worse part. Best wishes xx

KibbsnMeeps profile image
KibbsnMeeps

Hey Niamh, you've described the type of pain I have also, it's not nice is it :(

What medication are you currently taking? I got stroppy re. pain management a few months back, talked to a pharmacist friend of mine, did some research and went back to the doctors and demanded it. I don't always manage to get on top of the pain everyday but it does help.

Do you have a preference for NSAIDs like iburophen or opiates/synthetic opiates like co-codamol?

Niamhy profile image
Niamhy in reply to KibbsnMeeps

Hi the pain is terrible 😭 but I’m glad I’m not the only person who feels like this. The tablets I’m on are: Alverine citrate, amitriptyline, audmonal, metormin, esomeprazole, pregabalin, ranitidine, the pill, VESIcare, docusate sodium & finally ferrous fumarate. I have a friend who is a pharmacist too I had them look at all my tablets & they told me I’m on the strongest painkillers that docs would give out. I also sometimes have to take co-codamol or neurofen to try & help with the pain. Thanks for replying to me 😀

KibbsnMeeps profile image
KibbsnMeeps in reply to Niamhy

It might be worthwhile getting an additional NSAID if your occasionally taking Neurofen like Naproxen or Diclofenac Sodium, I take the latter up to 150mg/day and I find that this and the Amitriptyline (40mg per night) have helped keep the pain down. I also take omeprazole to manage the issue with stomach problems- I've not had any issues and it's probably no worse than snaffling a lot of bought Neurofen. I haven't tried accupunture yet but I have heard this can be very beneficial, also CBT to help with the emotional aspect of pain management. Sometimes for me the pain becomes overwhelming and I get very stressed out and when the pain finally reduces I'm completely exhausted and teary hrs later. I have my own pain management techniques I've tried to develop, squeezing something in my fist, slower breathing etc really helps. Also I've been keeping a pain diary and also started making some connections to food etc.

I'm not sure if this is what you were hoping for. But feel free to ask anything else. x

Lulububs profile image
Lulububs

Hey niamh

I have suffered pain years and years and just had my first lap to which they found minor endo but they noticed i clot to quick(thick blood) which is why they think i suffer monthly.

I have been given tranexamic acid , cocodamol and naproxen.

I take the naproxen about 3-4 days before period ( 2 x a day) then when i start my bleed i take my tranexamice(2-3times a day) and then i start the cocodamol. I never let the pain get on top of me i start hitting the pain first... i also find a hot brandy or whisky helps as it stops cramps...

I also use a hot water bottle and peppermint oil cap as i get very bad i digestion and stomach upset.

I hope this help. I just wandering if u get pain all time or just when near and on period? Also mayb try acupuncture or see a pelvic floor physio that just help keep it all relaxed down there

Niamhy profile image
Niamhy in reply to Lulububs

Hi thanks so much for replying to me. I have the pain everyday 24/7 that’s why I think the doctors have such a hard time diagnosing me. The pain sometimes will be worse but this is though out the month not just when I’m near or have my period which is really strange. I was on naproxen for a few years then they took me off them & said I shouldn’t be on them if I have stomach problems even though they knew I had stomach problems before they put me on them. Thanks for all the other tips I will give anything a go 😊

Lulububs profile image
Lulububs in reply to Niamhy

Its a bummer isnt it..

I get pain 24/7 but i think mine is muscular as in my pelvic floor!

Which then effects everything else.

Have u tried supplements? Ie vitamins?

abbycircus profile image
abbycircus

Hi again Niamh, also a friend of mine with very severe endo and constant severe pain told me she got a lot of help and support from a chronic pain support group, as opposed to an endo specific group. perhaps there is one local to you? xx best wishes xx

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