My Pilonidal Sinus Story (so far at 14 weeks)

Posted , 4 users are following.

We all seem to be suffering the same, the operation seems to make us worse not better. Here's my story.

24th November (2 days after my 21st birthday - talk about sods law)

Down for op at 11:45 out 1:15

Out of hospital by 2:30

5 days Co-amoxiclav

5 days Metronidazole

5 days Anti clot syringe

25th - 27th

Swollen, painful, lay on front and side only

28th - 30th

better each day in self but still painful to sit

DEC

1st (1 week on)

stitches burst/ leaking tan fluid

3rd

A&E (springfield house drs)

Diagnosed with infection

7 days Co-amoxiclav

5th

A&E for removal of some stitches, cleaned it, packed it, dressed it.

6th

District Nurse to change packing and dressing - twice

11:30 fell off, out at 8 to be done again

7th

Dr's to change packing and dressing

8th

Final stitches out

9th-11th

packing fine

12th

packing at drs started bleeding, stopped then continued when I left.

Hour later, dressing soaked, ambulance called from drs.

Had my artery stitched in A&E without anesthetic (HORRENDOUS)

13th

packed again at drs, appears ok - before bed, light fluid, pale pink

14th

Blood, packing fell out, gunge and smell, told it looks clean and pink, no major blood loss

19th

Discharged from surgeon Dr Khalil

He wasn't happy with A&E taking stitches out as he said it was far too soon, said fluid was expected. (but he doesn't have to live with it)

Showed him pics and he said they all looked normal. Asked about why he even used stitches and he came out with how it helps to heal it quickly etc. However now can remove the soggy dressing in the morning, shower it, then cover it before getting repacked at drs.

20th - dull ache starts in bum, not so much in wound

22nd - pain still, gungey dressing still sodden, swab taken

28th - swab results: infection

Sharp, itchy, Swollen hips and back, severe pain and can barely walk.

JAN

2nd/3rd - ventured out both days to test strengths when shopping etc, felt better than I had done, exudate much less and much cleaner

4th - last day of tablets, another swab taken after (white) ribbon dressing looked green.

8th - results abnormal but expected

14th - very low exudate but small amount of blood

15th - blood when wiping after toilet, following dressing change

20th - dressing changes start to become every other day

FEB

3rd - bum crack becomes sore - dressing changed from 17.5cm Allevyn Gentle to 12.5cm to try and stop sweat etc from getting trapped. Told to apply sudocream when possible.

4th - bum crack bleeds slightly

5th - told bum crack has small hole which is spotting blood (this time told not to use sudo cream 😑

7th - told tear below bottom hole of wound

12th - tear goes to 2cm long, silver dressing used

15th - reaction to atrauman AG dressing, sore, red, itchy

18th - still hole at top, split still leaking exudate

24th - told best it's ever looked

26th - told no more dressings/ appointments

27th - slight bleed when cleaning

28th - told 1cm split, told this can happen and just to apply small bit of aquacell and cavilon cream

You can imagine the tears I've shed, the blood I've lost not to mention the many time I've happily felt like jumping off a bridge. I suffer with anxiety, PCOS and HS so this really just hit the nail on the head. I'm at a point where I just feel hopeless. The nurses seem not to care now - 3 months is probably too much strain on the NHS. Even though I was made to pay for prescriptions for my cleaning fluid and some dressings. Ive been out of work for 4 months and am struggling to continue with university. I never thought it would end up like this.

0 likes, 2 replies

2 Replies

  • Posted

    Can totally empathize with you. I'm at two months post surgery on my second infection, wound healed and split at 6 weeks after it appeared to have healed over. From there it's continued to breakdown--initially half cm, to two and it's worsening. My gp, nurses are all ignorant and appear uninformed and unqualified to deal with me. I'm an emotional wreck, breakdowns daily, totally isolated, feeling exhausted and self conscious 24/7. I'm 23 and do not fit the type for this, it's a living nightmare. No one seems to understand, it's the most humiliating, embarrassing experience and there appears to be no stopping it.

  • Posted

    I too am having the exact same issue. Had procedure on Nov 9th and have been living in hell ever since! Had this surgery once before 7 years ago and everything went as it should..this time is another story. Mine was quiet large and was 4.5 cm deep and 4cm long. After numerous infections and tears I'm at my wit's end. Took a trip to A&E at one point I was in so much pain. Was told I needed to see a surgeon...waited NINE hours to be sent on my way with a hole in my bum! That was 9 weeks ago and he told me not to worry it will heal. Nurses nor doctors have any sympathy to just how painful this condition is. 5 months later and still no better. Now being told I may need more surgery. Unless you have had this condition it's impossible to understand the turmoil you go through, in all honesty I would rather give birth again. Itsnjuwt relentless pain. I've forgot what sitting or lying on my back feels like these days. I too have a dull pain in my bum not that actual wound site. Im devastated this has taken over my life for so long.

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