Have I got a fistula??

[kimmy86]

Hi all

Bit concerned I have a fistula! This is embarrassing but here goes :/ I have a very small hole I suppose just between my vagina and back passage. it is closer to the front, the skin around it is raised also. I have noticed this being there for a while but been too embarrassed to mention it to anybody at clinic. I also have not long had my first surgery and am worried sick about more surgery when I am feeling so well at last it doesn't cause me any pain at all but is itchy and I am getting constant uti's and breakthrough bleeding (I am on the contraceptive pill) I have been thinking maybe it is my pill but have changed several times and it hasn't helped. I thought maybe i had a bacterial infection so have been on flagyl the past week but am wondering, if it is a fistula whether that's causing the problems not an infection?? can anybody help as I'm not well up on fistulas at all what are the symptoms? Xx

Dam crohns disease and all the embarrassing problems that come with it

 

[BFoster]

I know it sucks but if I were you I would see the doctor and show them. And try to see someone who is an expert. In my experience, Family doctors will try and deal with issues that are far too complex and can sometimes make a real mess of it. Or, they will say wait and see and send you off.
I would make an appointment with your specialist and show them.
I am going through similar problems and I find it terrifying to have to bring up new problems I notice. When I first notice them I usually stand in the shower and cry. I find that is really my only place to be alone. I have two young children and a sensitive husband so I don't want to scare them.
So, I totally feel what you are going through - but get it checked before it gets worse!

 

[smallfry]

Hi Kimmy,

I have a seaton stitch in my fistula and another tract draining right beside it with no seton. In the exact area you are talking about, the perineum. I would inquire about getting an MRI just to make sure. It sounds like you may be developing a fistula/abscess but hard to say. I have pain so yours is either in early stages or not an abscess/fistula. I've been for cat scans and they don't seem to pick things up in that area. I was told for over a year nothing was there until I switched GI's and was sent for an MRI. Good luck.

 

[kimmy86]

Thanks for the replies! I am really worried today as I am due in clinic tomorrow and will have to bring this up! What were the symptoms of your fistula or how did you come to realise you had 1? And have the procedures to fix it been painful?? Xx

 

[smallfry]

my symptoms stared more like a burning feeling inside my vagina and rectum. Nothing physically outside my body at the time. My tracts are all in my recto vaginal septum but am lucky to have my surgeon divert things from my vagina to my perineum. After the burning stage it was a throbbing pain like a knife was being jammed up there repeatedly (abscessed)! When my tracts are open its more of a burning tenderness and when abscessed it's crazy pulsing painful!
Because the abscessing pain was so intense the seton procedure provided relief where the build up was now able to expel freely. The pain is better but for me I am still healing and I am still quite tender. The seton was done under general anesthetic.
Does anything come out of the hole? Is there a yucky smell? Is it an actual hole or a raised bump? My open tracts look red and pussy but you can tell there is a hole there.

 

[BFoster]

When my abscesses were drained it was done under GA - and yes it hurt. But it is over with very quickly and in my experience the pain did not linger. My abscess has been packed for 2 weeks now and it doesn't hurt at all. Really the worst part is the draining.

The next time this happens to me I am going to go to the ER and ask for a surgeon - so hopefully it can be dealt with properly the first time.

Good luck! You will do great! Stay positive and really know that it will be over with very fast and things should get better from there.

We're all in this together! Keep your chin up. As the doctors like to remind me (they do sometimes have a sense of humour) I am often the 12th or 13th bum they have seen that day - so they are pretty desensitized - meanwhile we are horrified...

 

[kimmy86]

yes I can feel there is a hole there only very small tho and just behind it is the raised bump of skin it doesn't really smell but occasionally i do get a bit of yellow pus from it. I am getting cramps low down today kind of like the way I'd feel before a period an I am having more breakthrough bleeding so worrying! Do you think when I tell them in clinic today they will refer me to a gynae or do they just examine you there an then? God I have a male clinician I see there this will be embarrassing

 

[deb123]

Hi Kimmy,

dont worry about being embarressed, theyve seen it all before. Ive got to go for same problem tomorrow, and i just zone out and let them get on with it.

Ive got breakthrough bleeding too, though i have a Mirena, so ive got to get that looked at too on the 18th August.

Goodness the things we have to go through!

Chin up - whats that saying the say on Embarressing bodies - Theres no shame we are all the same.

Good luck

 

[PattyLynn]

Hi Kimmy,
I had a vicious fistuala in exactly the same spot which developed in 1999. It started as a red bump, almost like a pimple, but then one day it started draining and it hurt like mad! It smelled because what it was draining was the diarrhea that should have been coming out the rear. I had to wear sanitary napkins all the time. I did go to my family doctor, my GI and finally my surgeon who was going to do an operation to fix it but, that never happened. Ended up having emergency ileostomy surgery so the fistula stopped draining and healed. Certainly not the solution I would have chosen first. Anyway, you have to get it checked and although it is uncomfortable/embarrassing to go to a male doctor, that is his job - I am sure he`s seen it all before :ysmile: If it is a fistula, they can put you on meds that may heal it so the sooner you find out the better. Keep us posted. My thoughts will be with you!

 

[kimmy86]

Thanks so much i will let you all know what they say today! another of my worries is having a normal sexual relationship with what is going on down there I have not long split from my boyfriend and do worry I will never have a normal relationship with anybody else while all this is going on I thought after my 1st resection I would have a period of being free from all the poking prodding and scans but this illness just seems to cause endless other problems x

 

[smallfry]

Ah Kimmy, yes this is so hard on so many levels. Don't worry kimmy a relationship will happen when you find the right one who will understand. They are out there trust me. I have found a wonderful man who has been very understanding. I am not able to have sex at the moment due to swelling and tenderness but am hoping I can soon. I try to tell people it's not your fault so don't be so hard on yourself, i'ts not like you asked for this to happen. Someone told me this once and I was like hey, ya it isn't and I need to go easier on myself and not be so mad about it cause it's just making me sicker!!
I get breakthrough and cramps as well but am told it's from scar tissue build up from fistulae trying to break through.
Good luck today. Are you just going to a clinic? A surgeon is best for abscess/fistula.

 

[kimmy86]

I had a chat at clinic today explained my worries. I did have an MRI scan before my resection surgery but thought they had only looked at how damaged my small intestine was but I was told today they looked at everything including my ovaries and bladder and that they surely would have seen it (it has been there a while) he said the hole could well be just a corrosion if I have a very bad infection and left it untreated and that he would be very suprised if it was a fistula. He has referred me to a gynaecologist tho to be examined and check it out as obviously the bleeding and frequent uti's aren't normal. I on the other hand...still think it's a fistula :/ xx