Endometriosis UK
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How do you describe your pain?

I find it really hard to describe/explain my pain to others/doctors. Anyone else the same? I also feel stupid if I ever describe it as 10/10 as I feel like a drama queen. Silly I know.

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Omg thank God someone feels the same!

I absolutly hate it when they ask, I try but I end up saying, it feels like I'm on fire, or being stabbed but also dull and deep and on the surface too 🤣🤣🤣 You get looked at like you are mad!!!

Also I have described it as 8/9 out of 10 most days for the past 18 months and again you get looked at like your exaggerating it. I've learnt to live with it and smile through the pain but it doesn't mean it's not painful as hell x

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I’ve also said it feels like I’m on fire! My pain is really burning/throbbing. I’m yet to find an effective pain relief. It really gets you down doesn’t it. I’m really struggling at the moment with feeling low and it doesn’t help that mostly people don’t really understand. Especially when you’re in pain most of the time. Others forget, but we certainly don’t!

Glad I’m not the only one. But not glad that we’re all suffering together! x

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I know the feeling. I have so many different feelings of pain it’s hard. The dull ache in my lower stomach before my period and then it turns into a stabbing pain. Ovulation is like an iron rod poking me hard xx

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Same! My main symptom was painful sex, and they'd always ask me where the pain was. I would reply "ummm... my vagina" and they would look at me like I was an idiot for not being more precise than that!

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Right! I always struggle explaining where the pain is. I don’t know why but I always feel so stupid by the time I’m done.

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I’ve described it to doctors as like your having someone shove my uterus through a mangle and like someone is ripping my hips apart and stretching my legs at the same time x

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I say its like somebody had stuck a cork screw in me and twistjng my insides. Its like a knawing pain. All over sometimes. I hear what you are saying. You feel shunned to silence. Even by some friends who dont eant to hear anymore. Sending my love and hugs xx

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I feel like it's a dull throbbing ache very low down and then where I assume my ovaries are. sometimes I feel like there is a restrictive band round my hips and back and when I walk it's being tightened. I always say 7/10. it's bearable but always there

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Hi I know how you feel 😮 I like to describe my everyday pain as I have bruises everywhere inside my stomach so it aches and causes nausea when I breath then when its my period its like having a really heavy person on shoulder weighing me down and annoying me whilst my stomach pelvic area and back are throbbing 🤔

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I hate trying to describe the feeling too, I always end up with the weirdest analogies to try and describe it. Failing that I try to stick to dull, sharp, deep, shooting, that kind of thing now. It’s close enough and easier to think of .

With regard to pain levels.... This is going to come across a bit rude at first, but please bare with me because I don’t intend it that way at all - they may not be taking you 100% seriously if you often say your pain is a 10. I’ve said I was a 10 before and was told that saying this actually makes Doctors think that you are exaggerating and just can’t cope with any pain, and makes them less likely to do anything! So I was told to think of it like this:

0 = pain free

1 = mild - barely noticeable

2 = mild - you know it’s there and it’s annoying but can cope with it

3 = uncomfortable - slightly distracting but can ignore it

4 = moderate - but can ignore for short periods of time when concentrating on something else intently

5 = moderate / distracting - can’t focus on anything else for more than a few mins but you can still manage to work, etc with effort

6 = distressing - interferes with normal life

7 = severe - massively impacts day to day life including sleep, socialising and ability to complete tasks

8 = intense - you struggle to move and even just speaking requires a massive effort

9 = excruciating - can’t talk, move or even think. They expect you’d be crying, moaning and screaming hysterically with this level and unable to control yourself properly

10 = the worst pain possible. You’d be bed ridden, possibly delirious, with all the effects of number 9 as well. At this level she said they would expect patients to often be losing consciousness due to the pain (although she did say it’s not the same as if you were to faint once or twice because of it) as their body just can’t cope with it

There was a chart too but I can’t find it now. Obviously I don’t know what your pains like and perhaps it does leave you hysterical and delirious, but if it doesn’t, try adjusting your score to fit in with the above and you might notice that they take you a bit more seriously and do a bit more for you. Completely counter intuitive but it did work for me and has done for a number of years now x

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This is really helpful, thank you! I’ve only described it as 10/10 on a few occasions thankfully and purely because it was the worst pain I’ve ever experienced. Luckily I normally hover around 3-5. I think it’s tough because pain is so subjective and everyone experiences it differently. I’ll definitely refer to this from now on!

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I know, it’s horrible to try and describe! I used to think “well this is the worst I’ve ever felt with the pain so it’s gotta be higher than the last time” and end up saying a 10 so when the doctor I saw told me about that scale I thought ooh okay, maybe it was only a 9 actually! But I’ve definitely found that’s it’s helped me using that kind of outline. It’s just such a weird concept that if we say it’s too high for them to “believe” then they might not take us seriously 🤦🏼‍♀️ x

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Thank you so much for this, I needed this badly ready for my third opinion tomorrow night, with a private gynae. During my period I’m at a 7-8 and crying.

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It’s quite handy isn’t it, I’ve been so thankful ever since that she told me this.

On a totally different note, good luck with your appt. My gynae consultant and also the gynae who performed my lap were both refusing to see me and I ended up also booking a consultation with a private gynae and it was honestly the best decision I ever made! He’s even taking me on as a nhs patient for my next lap as I was self funding x

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Yeah I’m just scared of the pelvic exam because it causes me that much pain, I cry. The last gynae I saw said that was normal xx

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Definitely not normal! I was quite fortunate that mine decided not to do the exam based on my history and the fact he thinks my lap just wasn’t extensive enough, I was so relieved x

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I thought I was just going crazy tbh, that it’s all in my head. This gynae I’m seeing tomorrow specialises in endo and lap surgery for it. I’ve tried everything now from diet to hormone pills xx

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hi i can only describe mine as if i have a rat in my pelvis running from side to side eating me alive. Bit dramatic but that's the only way i describe it x

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I’m so sorry you’re feeling like this but having just watched muppets Christmas carol (for the last time this festive period!) with my nephew and watching Rizzo the rat chow down on apples, that’s all I can picture now - him chomping on ovaries like they’re apples 🙈 x

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Love the pain scale thing! Although I’ve been diagnosed with stage 3/4 endo and adenomyosis I know I’m lucky compared with others as my pain scale is usually around 3-4. I don’t have periods but suspect things would be worse if I did! I get pain in my bladder when peeing, and sex can be pretty uncomfortable as I feel the pain in my butt 😵, but embarrassing to describe to your consultant! I’d describe mine as a stinging pain, but the rat analogy works for me too! And dull ache in back/entire abdo and down my right leg too. Most of my endo is in the right side, but now I’m in tune with the feeling I have a suspicion it’s moved to the left too...and the general groggy/sluggish feeling that goes with it...hate that!

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I really liked this post. It described what I'm going through. Whenever I try to explain my pain nobody takes it seriosuly.. They all think I'm exaggerating, so I stopped talking about it.

I feel more depressed now 'cause nobody listens or feel my pain.

I hate hormonal injections they make me feel bad about myself ):

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Omg. I went to a consultant appointment yesterday and felt like a complete idiot when he asked me to describe the pain. I mean only know the type of pain i have felt in my life so what am i supposed to compare it to when describing it?!

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