Answer whatever applies to you. The result is a short discussion sheet for your next appointment — with no assessment, no grading and no recommendation.
Describe my HS pain
Every step is optional, and the sheet updates as you choose. It works best if you describe one pain problem at a time.
Step 1 / 7
Which pain are we talking about?
If there is more than one pain problem, start with the one you want to raise in the appointment. You can fill the sheet in again afterwards for a second one.
Step 2 / 7
What does it feel like?
There are no correct clinical words. Pick anything that comes close to your experience, including across several groups.
These words help in the conversation. They do not determine what is producing the pain — that is a clinical judgement.
Step 3 / 7
How intense was it?
The number is part of the description. It appears on your sheet unchanged, with no grading added by this website.
This website turns your number into no “mild”, “moderate” or “severe”. What a number means depends on what it prevents in daily life — which is the question two steps further on.
Step 4 / 7
When does it happen?
Pattern and duration often say more in an appointment than intensity alone.
Step 5 / 7
What does the pain change?
This is the most telling part of the sheet. A 4 that makes sitting through a working day impossible describes a different problem from a 6 that changes little.
One sentence is enough. It appears highlighted on your sheet. Please do not enter other people's names.
Step 6 / 7
What have you already tried or discussed?
This stops a pain problem from looking untouched in the appointment when something has already been tried.
You are asked for no product and no dose, and nothing here is suggested to you on the basis of your answer.
Step 7 / 7
What do you want to clarify in the appointment?
One question is enough. It goes at the end of your sheet.
Notes on what you selected
These notes help with describing. They contain no diagnosis, no grading and no treatment recommendation.
These words describe — they do not determine anything
On describing it
The words you picked help a healthcare professional understand what your pain feels like. They do not say what is producing it. “Burning” does not automatically mean nerve pain, and “throbbing” does not automatically mean the opposite.
Clinically, several kinds of pain are described in HS, and they can overlap in the same person. Which of them applies to you can only be worked out in a consultation and an examination — not from a list of words on a website.
The location is not a detail. Pain on the buttock or in the groin makes sitting for long periods difficult; pain in the armpit affects raising your arm and getting dressed. Naming the area together with the limitation describes the problem more completely than a number does.
You do not have to describe or show an affected area if that feels difficult. You can say in the appointment that an area is hard for you to talk about, and ask for an explanation of what needs to be examined before the examination starts.
Pain is among the most important symptoms of HS, and the European treatment guideline names pain relief explicitly as one of the goals of treatment. A flare that hurts badly is therefore not a side issue in an appointment.
Note how long this flare has been going on and what you could not do during it. That is more useful in an appointment than trying to rate the pain from memory afterwards.
You have described pain that is not confined to visibly inflamed lesions. That is a separate piece of information, and it is easily lost if the appointment only covers the most recent flare.
So say it explicitly as a second point: the flare first, then the pain that stays. Whether and how that is investigated further is for your healthcare team to decide — this page cannot and does not classify it.
A sentence you can borrow
“Alongside the flares, I also have pain between them. Should we look at that separately?”
You are describing pain at a scar or a previously affected area. Say in the appointment whether the area currently looks inflamed or not — that difference matters, and you are the only person who has been able to watch it over time.
After a procedure, the instructions from your treating team apply — not the general guidance on this page. If the wound changes in a way they told you to report, use the contact route they gave you.
This description does not replace that. It only helps you describe the pain more precisely at your next scheduled appointment.
“I don't know exactly where it comes from” is a usable answer
On describing it
Not all pain can be traced to one lesion, and you do not have to be able to do that. Describe when it happens and what it prevents instead — that is the information that helps the conversation.
The number is part of the description, not all of it
On describing it
Your 0–10 rating appears on the discussion sheet exactly as you chose it. This website attaches no grading to it: there is no “mild”, “moderate” or “severe”, because that would be an assessment we are not in a position to make.
Newer work on measuring HS accordingly records symptoms and their impact together. A 4 that makes sitting through a working day impossible describes a different problem from a 6 that changes little.
Qualitative research into the experience of HS pain describes interference with walking, sitting, movement, sleep, work and relationships. Those are exactly the things least likely to come up in an appointment, because the first question asked is usually about intensity.
One concrete sentence is enough: a situation that the pain has made impossible. On your sheet it carries more weight than anything else.
Say explicitly how often you wake and whether pain is the reason. “Sleeping badly” is hard to interpret in an appointment; “woken by groin pain on six of the last ten nights” is not.
Name the movement that no longer works, not only the body area. “I cannot sit through a meeting” and “I can only get up the stairs slowly now” are descriptions that can be worked with.
When work or study is affected
Where this belongs
The effect on work or study belongs in the appointment — and it has its own area on this website, where it can be recorded over several days.
Pain that happens reliably during a dressing change is its own point, and it often goes unmentioned because it is assumed to be unavoidable. Say in the appointment how often it happens and how long it lasts afterwards.
What has changed is usually the most useful question
On describing it
“Is this different from usual?” is often more revealing in an appointment than “how bad is it?”. You have reported a change, so it appears as its own section on your sheet.
Pain you have never had before
Where this belongs
You have said you have never had pain like this before. This sheet cannot judge whether that needs to be looked at, and it does not try to.
If your skin symptoms are also changing markedly or you feel unwell in yourself, use this site's guidance on getting medical help rather than waiting for your next scheduled appointment.
Without it, a pain problem looks untouched in an appointment even though something has already been tried. That is precisely the information that prevents the same thing being tried again.
This page then suggests nothing else to you. It names no active substances, no doses and no products — what is appropriate depends on your disease activity, your other conditions and your other medicines.
A discussion sheet cannot tell you whether a change needs to be looked at. If your symptoms are markedly different from your usual pattern, or you feel unwell in yourself, use this site's guidance on getting medical help, or the usual healthcare routes.
Assembled from your answers. You can print it, save it as a PDF or copy the text.
As soon as you choose something, your discussion sheet appears here.
This sheet contains information entered by the person it is about. It names neither the cause nor the type of the pain and is not a diagnosis, a grading or a treatment recommendation.
Take the sheet with you
Your answers are not stored in your browser. Reloading or closing the page clears them — save or print the sheet if you want to keep it.
No link to your sheet is created. Nobody else can open it.
Could you explain your pain more clearly in an appointment than before?
Last editorially reviewed: · Next editorial review:
That pain is central in HS is set out in the European treatment guideline, which names pain relief explicitly as an aim of treatment.
That HS pain is not one uniform thing — that it can be acute and longer-standing, with tissue-related and nerve-related components — comes from dermatological reviews. Explicitly nothing follows from that for you: these pages derive no kind of pain from any word or any combination of answers.
That the effect on sleep, movement, work and relationships is a distinct part of the burden rests on qualitative research into the experience of HS pain and on newer measures that record symptoms and impact together. No such instrument is reproduced or used here.
The evidence on drug treatment for pain specifically in HS is limited. That is precisely why these pages name no medicines and no schemes.
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