Let’s start at the beginning of my journey: The dreaded diagnosis.
The whole adventure began when I began to feel an ache in the area very close to my vagina. At first it felt like a bad bruise, but within 48 hours I was in so much pain that I made an emergency appointment with my gynecologist (I seriously thought it was a vaginal issue). She realized immediately that it was an abscess, and sent me to the ER at Sibley Hospital in DC. After possibly the most pleasant ER intake I have ever experienced, a colorectal surgeon showed up and drained my abscess. This was no major thing, they applied local anesthesia and cut it open right there. It was a fairly painful recovery of about two weeks, but afterwards I felt fine.
I went back to the same surgeon about a month later for a check up, and was informed that my abscess had resulted in a fistula. I have to tell you, it was very confusing. My doctor did not explain it very well to me, gave me no indication of what was possibly in store for me, and led me to believe I would need one operation, and that would be the end of it.
Here is where I want to scream at you:
GET A SECOND, THIRD AND FOURTH OPINION!
Please! Please! I beg of you, do your research, read patient reviews, find a doctor who communicates well with you. Ask a million questions. If you feel confused at the end of your appointment, your doctor has not explained things well enough to you. If you find yourself doing all of the research yourself, looking up explanations, reading other people’s horror stories, YOUR DOCTOR IS NOT EXPLAINING THINGS WELL ENOUGH TO YOU. This entry is about diagnosis only, so I won’t get into how badly this doctor screwed with me, but basically I wasted almost a year of my life with the wrong doctor. Don’t do that. If you are frustrated, there is nothing wrong with shopping around for a better fit. I wish I had done this early on, I wish someone had told me to find another doctor.
The first thing to do when you get a diagnosis of an anal fistula is to force your doctor to take time with you to explain it. Make them show you pamphlets, books with illustrations (trust me, every colorectal doctor’s office has them), make them draw it for you themselves. Do not leave that building without asking all of your questions, and don’t be embarrassed to ask questions like, “What do I do about poo leaking into my vagina?” They will not bat an eyelash at questions like that.
The second thing to do is go home, take some deep breaths, and start reading up on it. The main thing you need now is the very best doctor. You could be in for a long journey with this doctor, so choose wisely, read referral sites, ask your friends. Your doctor can be the difference between two years of surgeries and 10 years of surgeries, so treat them like shoes and try on a few until you find the perfect fit.
The third thing you want to do after confirming that you have an anal fistula is read up on them. Please, do me a favor, do NOT read testimonials on support pages yet. They will freak you out, depress you, and scare the shit out of you. Read articles on medical sites only. Do not enter the world of blogs, message boards, etc yet. It is overwhelming, and too much information. Just get some basic knowledge about your rectum and what a fistula is.
Here are some questions I recommend you ask your doctors:
1. Where exactly is my fistula located? Can you show me a drawing?
2. Can I please request an MRI and colonoscopy? (my first doctor did not do these important tests, and as a result missed a side exit of the fistula and had to operate again)
3. Is it possible that I have Crohn’s Disease? Could you please order tests for that? (this includes a colonoscopy and a blood test)
4. Do you know what could have caused this?
5. How large is the fistula, and how easy or difficult do you think it will be to fix? (No doctor will give you a straight answer on this, but you can get an idea of how severe it is. My fistula was particularly long and tricky to fix, but not asking these questions, I had no idea until my third doctor explained this)
6. Are there certain foods I should be eating, or foods I should avoid to make this easier? (Diet will have an enormous effect on your comfort until this is over. I will have an entire post on diet soon)
7. What can I do to manage the pain?
8. What can I do to keep things clean down there?
These are just a few questions. I also recommend looking on medical sites for FAQs, and often they have a list of recommended questions to ask your doctor (though, be wary of pharmaceutical companies pushing you to ask for a medication).
Don’t panic, and remember that every person’s experience is just that. Their own. You are different, and your experience will be different. I’ve had 2.5 years of surgeries, but you could have one surgery and be fine! Don’t let other people’s stories scare you, and don’t let your doctor get away with vague references. Be direct, be pushy, this is your ass we’re talking about. It’s important!
If you have any good questions for doctors to add, please comment! I know I left out a bunch!
Leah R. Chatterjee