Sore bottom ruining my life

[Agonydownbelow]

Hesitated about posting this for fear of being accused of being a troll. But I’m so desperate for help I don’t even care about anything anymore. I’m a regular poster etc but obviously any concerns feel free to report etc

I go through spells where my rectum/anus is excruciating. Like I don’t just mean a bit stingy, I mean absolutely excruciating. It’s bad when sitting and walking about but particularly bad when passing stools. It feels like I’m being torn apart and I sometimes wake up from sleeping because of the pain of it. I get bleeding on wiping too (usually red) The painful flare ups last anything from a few days to a few weeks. I’ve been checked for piles and anus fissures during flare ups and it’s been neither. I’ve also had a sigmoidoscopy which was clear. Even though fissures have been ruled out, I still tried things like anusol and other treatments which didn’t help either.

today it was so bad that I was screaming whilst going to the toilet and gripped the wall so hard that 3 of my acrylics and my own nailbeds were ripped off. I didn’t even notice the pain of it because i was in so much rectal pain. I also woke up during the night last night with the area throbbing in pain and I’ve had more red blood on wiping. There’s no obvious irritation externally and piles and fissures have been ruled out by the GP

I’ve been to my GP 14 times for this.Been referred to gastro 3 times. Clear bloods and calprotectin fine. They said everything serious has been ruled out and won’t accept another referral for me, but equally the GP cant help either and said I need to learn to live with it myself (how???) I also can’t afford to go privately for at least 2 years until I save up :(

I’m not constipated (usually the opposite problem) but I tried stool softeners anyway- again no, help. I don’t eat spicy foods or foods that might cause irritation when passing.

please tell me has someone else experienced this and have any advice or things I could try to help this? Im not being melodramatic when I say it’s ruining my life

Is this linked to your menstrual cycle? Could be endometriosis.

Oh I hadn’t considered it could be endometriosis. It doesn’t seem to be linked to my menstrual cycle though it seems to flare up at random.

If you have loose stools could it be like nappy rash? Constantly being wet might make it sore

That's horrendous

How awful. It's unlikely we will come up with anything your GP and 3 gastro referrals haven't thought of. Test for coeliac disease is my only thought but surely that's been done already.

A referral to pain management clinic might be marginally better than "just put up with it", but of course that's not what you are looking for.

It sounds horrible. I'm so sorry you're experiencing that.

Have you tried keeping a diary of everything for a few weeks to see if you can figure out a cause?

Also, have you had a STI screen lately? (NHS website says that is a potential cause?)

Yes, have you tried canesten in case it is a really intense fungal thrush infection?

Why a sigmoidoscopy and not a colonoscopy? The issue could be further up.

Endo can indeed cause javelin arse aka Proctalgia fugax. It is a horrible thing.

Anal fissure? Painful in the extreme but cured with minor surgery (as if any surgery on that area could ever be classed as minor!!!). Hope it gets sorted soon.

I have endometriosis and get similar pain though not so severe as what you describe.
Possibly test for crohns and/or coeliac?

Ask for a colonoscopy not just a sigmoidoscopy.

Generally speaking, the NHS is good at ruling out things that need time sensitive treatment, like cancer or inflammatory (crohn's/ulcerative colitis) conditions or infection...

So a lot of the time when you are told there's nothing wrong, what is really meant is that we didn't find one of these conditions that needed (and has) definitive curative treatment.

Unfortunately there's a lot more variation in the NHS across the country in terms of more chronic condition management, or pain syndromes, or medically unexplained conditions. Finding someone who is good at this stuff kind of depends on there being a specialist with an interest and that genuinely can be a lottery. Much less obligation on any service to have a specialist in, for example, anal pain, than to have an anal cancer specialist.

Explaining that not to minimise what you are going through but to explain that sometimes when you hear "we found nothing wrong" it really means "we found nothing that we could treat" which isn't quite the same thing.

Anyway, the kind of pain you are describing isn't unheard of. If you look up anorectal pain syndrome, proctalgia fugax etc you'll possibly find descriptions of similar experiences and get a sense of what causes should be considered and ruled out...and hopefully get some sense of what solutions should be available to you. A little bit of information would hopefully empower you to say to your GP, "I think I have XXX, I understand that I should be offered these investigations/this treatment. What do you think?"

https://www.medicalnewstoday.com/articles/317254#vs-levator-ani-syndrome

Also, suggest you see a different GP because them telling you to live with this is absurd!

That does sound very much like an anal fissure. The pain could be from rectal spasm, which also would account for the pain on opening your bowels.

Has the GP ever given you GTN ointment to use?

It is well-documented that women are often dismissed and that we are regularly not believed. Similarly, our pain experiences are minimised. It's a real problem throughout the health system.

You're going to have to advocate for yourself harder and be (sorry) a real pain in the arse. Definitely get a second opinion, and depending on your circumstances, you might consider finding a private provider to carry out further tests.

I have endometriosis and get exactly what you have described above. It's awful.

I was convinced it was a fissure or a tear but I’ve been checked so many times and there wasn’t any tears.

I actually considered thrush/some kind of skin infection but it’s not that either, we tried thrush treatments just in case it was that although the GP did say it was unlikely and there was no help with it either. I don’t always have diarrhoea in fairness, it’s just either diarrhoea or normal- I’m never constipated

I’ve never had sex before so I don’t think it’s an STD unless I’ve somehow caught something from a public toilet or swimming pool or something (not sure if that’s even possible or just rumours everyone used to say at school!)

I’m not sure why they did a sigmoidoscopy- it was supposed to be a colonoscopy (strongly requested by my GP after being declined several times) and I thought I had a colonoscopy but on my results letter it said sigmoidoscopy. I was so out of it on sedation that I didn’t know whether it was a colonoscopy or sigmoidoscopy during it but assumed colonoscopy as that’s what it was meant to be. It also said a sample was taken of the small bowel mucosa (or something along those lines) and it was fine.

This!

You may notice a real pattern.

Can’t afford private unfortunately, literally not possible at all at least for the next few years.

I totally agree I need to advocate better for myself but honestly I don’t know how.

Ive been to my GP so many times and they understandably can’t do anything and are out of options. They contacted the GI department to refer me again and were told the consultant has reviewed my case and bounced back the referral because everything has been ruled out and it’s caused by stress and anxiety and I need to manage it myself. My GP phoned them as well but had the same response, they won’t accept the referal.

Our health board doesn’t allow us to change GP either- that stopped during Covid and now is only allowed if you move into the area. I contacted them and asked if I could change and explained I can’t get help at my current GP and the reply was sorry but no because they don’t allow changing GP within the health board. I’d need to move to a different health board to be allowed.

I’ve also been under a dietician and done every elimination diet under the sun. I was eventually discharged because nothing was helping and they said it was beyond them

I just don’t know what to do now, it’s like everytime I try to get help there’s a brick wall

God, that sounds horrible.
Whilst you seek professional advice, you might find that nappy cream helps. I had effectively nappy rash induced by exercise and it was excruciating. Used some of my grandchild’s cream and it began to ease it very quickly.
sorry, can’t recall what it was called but it’s yellow, in a yellow tube and begins with M.
Maybe someone here can identify if. It really, really helped.

Poor you, that sounds horrific.

Ask for a colonoscopy. It sounds like fissures to me but I see that’s been ruled out. I was going to suggest what the vipers call “javelin arse”. I see upthread it has a proper name - maybe see if it’s that? Really hope you get help, OP. Can you afford to pay to get it investigated privately if needs be?

Yeah I’ve kept a diary with everything from food, drinks, weather, time, menstrual cycle, clothes I wear, skin products I use, time of day I go to the toilet, any activities or hobbies or sports I’ve done, what I was doing before the flare up started etc. no pattern unfortunately😭

So sorry OP, I actually do have an anal fissure and the pain is as you describe when on the loo. It’s unbearable. There are certain foods that irritate mine (and cause piles too) it’s not just spicy, hot foods. Try keeping a diary every day of the foods you have, including drinks, and see if this is connected. It could be a wheat allergy or caffeine intolerance.

Anyone can develop an intolerance or allergy at any time but it is controllable if it is to do with your diet.

How long has this being going on for?