My experience, desperately seeking advice

[superscared]

Hello! I’m new here and hoping that some kind souls could give me some advice about my situation.

I’m a 20 year old female who has been dealing with pilonidal disease for about 10 years now. It started in middle school and wasn’t addressed in any way until 2017, when I received an incision & drainage. Since then, I have had no other medical intervention.

I am able to feel a large lump at the top of my cleft under the skin, but it isn’t visible from the outside. I have a row of what seems to be pinprick holes at the top of my cleft, as well as a larger sinus a few inches down and a deeper indented area that may be forming another sinus. I do not experience much pain aside from occasional tenderness in the area, usually when I have been sitting for prolonged periods of time. I also have not had any noticeable drainage or bleeding for probably 5 years. Overall, the affected area doesn’t LOOK or feel too bad, but it does seem to be progressing and going south, which has me extremely worried.

I’m at a loss when it comes to how to move forward with this. I’ve been doing a lot of research on my options, and I’m hoping to have a consultation with Dr. Sternberg about cleft lift surgery soon. But I’m terrified of the surgery itself- the possibility of infection or complications makes me want to avoid it until my symptoms become unmanageable. I’m worried that I’m already too late and the area is too damaged to have an easy surgery.

Is there any safe way for me to just keep living with it as I have done? As afraid as I am of surgery, I’m also horrified at the idea of developing an infection and going septic or something like that as a result of not doing anything. I feel like I’m doomed either way! I can’t think about it for too long or I start having a panic attack.

I would really, really appreciate advice of any kind or to hear from anyone with similar experiences. Thank you so much for taking the time to read this.

 

[diseasedone]

I had a Limberg flap surgery last November. I understand how you feel scared. I definitely felt that way too. What helped me was hearing my surgeon tell me about the technique. It somehow put me at ease. She told me the procedure had a 5 or 10 percent recurrence rate.

I have had incision and drain and at no point during or after my flap surgery did I feel pain anywhere close to that!

I encourage you to read more about the cleft lift procedure on here. I would just like to warn you that some of the posts do contain worst case scenarios. Don't let yourself get into the mindset that that will be you. They do not represent the vast majority of the patients.

 

[experiencedthis]

Hey superscared, thank you for sharing your troubles here. I was just referred to this site for the first time by a surgeon I'm getting a review with next week, and I was thinking "oh I'll join that forum someday, how nice", but when I read your message I thought "aw I've got to reply!"

I had my first pilonidal cyst when I was 13 years old, and I had an incision/drain followed by a full excision (maybe that's what the lift procedure is? I don't know). It went down to the fascia, because my cyst was about 8cm at that point. I had packing and it healed in about 3 months. I didn't know any better and it wasn't my first-ever surgery, so I didn't really have time to get scared of it.

Now, at 33, I've had a recurrence above my scar line, and because of my initial experience I just assumed that I would have to get surgery to get rid of it. I wasn't scared, just annoyed at the bother of healing. Because mine is quite irritated right now, I still expect I'm probably going to need surgery.

Just wanted to share that you're not alone. From my experience, the surgery itself isn't bad at all, the healing period can be quite annoying, but it's overall not very painful, and it really only takes a season before getting back to what feels like normal. What it is, is a HUGE relief to have it complete out and done with. My surgery kept me from having problems for 20 years!