beyond desperate, feel like there is no hope, cannot cope with this anymore, why wont it get better

[ratherremainanon]

Posting this knowing no-one can probably help. But am so down today, just wish I could go to sleep and not wake up. I have been suffering for 3 years now with itchy sore perianal skin. It has taken over my life, everyday is a living hell. Pain when I walk, pain when I sit down, feels like my arse is on fire. Constant itchiness and soreness which never gets better. This has affected everything in my life, my job, my marriage, my friendships and most importantly my relationship with my dd. I cannot cope with the pain anymore. I have seen skin specialist after skin specialist who have diagnosed cream after cream. I thought last guy I saw would be able to help, he promised his prescription would work. I got my hopes up. Of course it hasnt and have spent another day trying to play with dd, do housework, get out an about with a sore inflamed bum. Have had so many procedures to rule out piles, abscesses etc. All come back clear.

Problem started because I had loads of stitches after giving birth. I was nervous about tuching stitches, them bursting etc so think I got a bit slack with wiping myself which led to major skin irritation which never goes. Its knowing that its never going to go that fills me with despair. How can I live the rest of my life with this pain? Why should I have to? Sometimes I wish I had a disease/illness which although serious, was treatable. With this condition nothing seems to work. I tell myself things like "in 50 years you'll be dead and at least you wont be in pain". I just dont know what to do. I have now officially given up. I dont know whether asking to go on antidepressants will work, I know the only reason I'm depressed is because of being in pain all the time, not because I'm unhappy with my life. I would love my life if it wasnt for this.

ratherremainanon, firstly, you are not alone.

can you answer a few questions before you give up hope?

I need to know as much as you can tell me, what has been tested for, ruled out, what creams you have been given, what didn't work, what worked a bit etc.

other problems, digestive, elimination, skin, hair, nails.

believe me I have seen this quite a few times and it was never anything sinister, just a combo of circumstances that interacted and caused mayhem.

if you would prefer to answer off forum then you can CAT me or I can give you my ''other'' e mail address, but let me know as much as possible?

horrible for you, I am so sorry. I guess you have tried all the complementary therapies too have you? definitely go back to your gp - rather than trying to cure it (although i sincerely hope you will keep on that track) start getting them to work out ways of helping you live with it eg painkillers, antihistamines, antidepressants, whatever - may take you in new and better directions
(((hugs)))

Maybe you could try one of the Forever Living Aloe Vera drinking gels...they are meant to be good for general wellbeing and I have heard of people who have had things like cystitis and IBS who they have helped. I am not an agent for the product so don't know all the details as to how they work but as far as I know they don't do any harm.

Also could there be any bath/shower toiletries you use that aggravate the condition?

If conventional creams aren't working maybe it would be worth going to a good homeopath.

misi, thankyou for replying, I really appreciate it. Will have to be quick before dh gets home and sees me crying. I dont think he realises how bad things are and how I just cannot cope anymore.

Have been prescribed protopic 0.1%, proctosedyl, elocin and trimovate by dermatologists. Have been told to try natural remedies like aloe vera and also to try thrush cream and anusol. Advised to use aqueous cream to wash and to apply directly to sore areas. Told not to use any bath products when I bathe and shower and to use dermatologically tested washing powder. Advised to wear cotton underpants only. I have done ALL of these things, religiously followed the instructions for my prescriptions all to no avail.

Have had a sigmidoscopy and an anal scan. Have had probe and camera put up bottom, everything clear. No other part of my skin is affected, never suffered from itchy scalp (which last dermatologist was keen to know incase there was a link?) infact never had any skin problems at all before this. Havent changed my diet in any way. Dont smoke, eat relatively healthy, drink occasional glass of wine and have a couple of cups of tea a day. Told to not wipe myself with toilet tissue, but to use cotton wool and to make sure area is completely dry and to use hairdryer. Done all this.

Havent had any skin allergy testing done, do you think this is good idea? No-one has ever suggested it? Not on any other medication.

I wondered if I have scar tissue from when I first couldnt stop the scratching but no-one has mentioned this when they've exmained me. It feels like there are little bumps under the skin. I dont scratch anymore, havent done in years but this problem seems to be relentless and so debilitating.

misi, thanks again for replying, its so nice for someome to take an interest and try to help. I just feel there is no way out from this and I'm destined to spend the rest of my life with this, and I cant find a way to live with the pain.

ratherremainanon, looks like your docs are convinced it is some sort or dermatitis or perhaps eczema???
quite weird!!

were there any complications in the birth apart from the episiotomy?

for the skin, I mean is it dry, flaky, mottled in any way? for your nails, are there any longitudinal or transverse ridges, is your hair normal or is it dry and brittle?

do you generate wind (either end) at all?

does it ever sting when you wee? is your wee what you would describe as 'normal' colour and not dark yellow or clear ALL the time (or is it a mixture of colours during the day?)

do you ever get times when you breath very quickly and shallowly?

do you ever feel queasy after eating?

little bumps under the skin can be several things, scarring is one of them, can you say where your stitches were? internal, external, mix of both and what sort of after care did you get for the stitches?

no worries though, my ex went through a year of this till she let me treat her, so I have an idea of what you are going through even if I have no direct experience of it!!

ratherremainanon - just wanted to say I hope things improve - I really felt for you when I read your post. Just remember how much your dd (and hubby) love you...

((big hugs))

misi, other than this problem I'm in good health. No wind, no breathing shallowly, and no stinging when I wee. Dont feel queasy after eating either. Hair and nails normal.

I did have internal and external stitches and I did wonder if I maybe had some undissolved stitches left under the skin. One doctor got my notes back and confirmed the stitches used were dissolvable and not permanent. However, the sore itchy skin is more round the buttocks and not where any stitches would have been. Several doctors have said its not undissolved stitches causing the problem. But I do wonder.

I feel like an enigma, and despite seeing loads of different specialists, no-one can identify the problem. Surely if it was a dermatitis type skin problem it would have eventually healed but its been over 3 years now..

thats good for the no other problems then, let me have a think and a look and I'll get back to you

I'm so sorry you're having to deal with this. I suffered with pain in this area on and off for over a year related to cancer, radiotherapy and complications from surgery. I can't imagine how you have coped for three years. My heart really goes out to you. I know how it affected me even over the short time I had to deal with it (I pray that it won't come back).

The only useful thing I can add is that I bathe in fragrance free oilatum or bath e45.

Don't know if this will help. but if you've tried everything else - try cutting out wheat and dairy. You don't have to have changed your diet to suddenly become allergic to something. I'm not a professional, but I developed IBS a while ago and had similar symtoms. (Btw, three years later I can now eat what I like). It sounds awful - best of luck.

P.S. I have always found basic Vaseline helpful in skin flare-ups.

ratherremainanon, in all the tests done, have you ever had a swap and culture test done?

misi, never had swap or culture test done. Could I get this done at gps or would dermatologist do it? Have follow up appintment with derm in 4 weeks, though wondering whether to try and see him earlier as at end of my tether. He seemed so confident the new creams would work but they seem to make it worse. Should said that after any bowel movement the skin seems to flare up more and only thing that helps relieve it is having a bath.

Thanks again for your help misi, you are so kind.

Thingone, sorry to hear that you were suffering too. Glad it hasnt come back.

this to me sounds more like an allergy/food or digestive related problem the more you write.
I would ask if a swap and culture could be done when you next see the dermo as it may throw some light onto this.

can you just confirm for me where exactly the bumps under the skin are and can you tell me what your perineum looks like now (where the stitches were)

Maybe you could apply a barrier cream before you have a poo? With enough time for it to dry/sink in? I have a colostomy now so need a barrier to protect my skin from the frequent on/off of the bag and and escaping poo. The one I use for this has to be especially quick drying and non-slimey or the bag won't stick. It's called cavilon. You could try throwing this kind of idea into the mix next time you see someone.

RR you say you have never had a swab or culture - have you never been tested for thrush?

I get recurrent vaginal thrush and the itching and pain are dreadful - it really sounds similar to your description - just in a slightly different area.

However, I'm sure you can have perianal thrush too.

Misi do you have any view on this?

I really feel for you RR - that kind of discomfort and soreness on a permanent basis must be beyond miserable.

Thanks misi, I will ask about the swap.

perineum looks OK, dont have any problems with it. Did have a lot of stitches but it healed well, skin is smooth with no lumps or bumps.

The bumps are sort of on the edge of the buttocks, when I press down on the skin it feels like theres something under there like a little spot maybe. The skin isnt smooth, when I run my fingers over the area it feels uneven with little bumps. The dermo said that he could see slight change in pigmentation, if that makes sense. He said the whole area looked pretty good to him...

RR sorry to hear that you are suffering with this. I can sympathise as I had lots of stitches after I gave birth which still give me some problems now but nothing on the scale that you are experiencing.

It may be a really silly suggestion but I wondered whether it was worth trying putting some Manuka honey on the area. I say this as I have heard of it healing things like leg ulcers that nothing else has worked with. At least it shouldn't do any harm other than being a bit sticky. Probably a crazy idea but thought I would mention it as you are probably willing to give anything a try to get some relief. Hope something works for you soon.

FrayedKnot, one of my original thoughts was candida, although there are usually other symptoms that ratherremainanon has said she has not got. I am tending to think now though that this is maybe a mix of acidic poo and candida (or other fungi/bacteria). the bumps under the skin does point to candida and the stinging anus when pooing is another sign. the slight change in pigmentation could also be a change in the local pH, so maybe instead of being within the range of 7.2-7.6 (7.4 normal), the pH of the poo could be say 7 or 6.8 at the least which would cause this sort of symptom.

I would ask the dermo for a swab and culture, maybe a candida anti body blood test and a blood, urine or saliva pH test. (the pH test can be done yourself if you have litmus paper or preferably, you can buy urine testing strips from amazon, another mum on here got some recently, and although she tested ok, she did not use them all and got her DH to try and he tested as being acidic!!)

in the meantime, I have found a recipe I used for my ex. I mixed up almond oil, calandula, lavender, tea tree, thyme and wheat germ oils. this is an alkaline formula that nutralises the acidity and helps to kill off candida (for external use only). I do not know if anything like this is commercially available, might be worth a look as I doubt you will get the ingredients easily, but almond oil can be bought as a massage oil and as this is the safest to use of the above ingredients, it may be worth thinking/seeing if you can get some and try applying it beofre you poo and see what happens. it will never be wasted though as almond oil is great for the skin and scars in general!!

manuka honey, if it gets onto mucus membranes will sting like crazy and is something I personally would not reccommend for ''that'' area, but yes, it is absolutely fantastic for leg ulcers, so much so that GP's now have manuka honey impregnated pressure bandgages to treat leg ulcers and results so far are better than expected!!

Have you had a vulval biopsy or skin biopsy done? Might be the way to go. You cannot treat something if you do not know what is causing it.

Oh sorry I didn't realise it would sting, it seems so mild I thought at least it couldn't hurt. Sorry RR, would hate to make things worse for you.

I sometimes get irritated and dry skin in the perineal region (after 3rd degree tear), I find it clears up if I use baby barrier cream - I have the Neals Yard stuff. Sounds like you may have rather more going on though? Best of luck with finding a remedy that works.

Misi, thanks for the recipe- I will definitely try to scrape together the ingredients and give it a go Getting a swab and culture will be top of my list when I see the dermo. Its great of you to take the time to reply. Your ex was very lucky to have you treating her!

Thanks to everyone else who has replied too. I can honestly say this is the worst thing I've experienced in my life and I've not had a problem free life by far! Trying to lead a normal life while living with this day to day is, for me, nothing short of a living hell. Quite frankly I dont know how I've managed to hold down a job and look after dd while suffering all the time. Its really bad again tonight, lots of stinging pain which just seems to be relentless. It wouldnt be so bad if I got a couple of days of respite but its relentless. People at work must wonder why I sit at my desk squirming in pain sometimes.

Is there any way you can (besides trying to treat the problem of course) ask the doctor for some kind of painkilling treatment - either pills or a numbing cream, that would work like bonjela or similar? Just to make life easier for you while you try to solve it.