I have been suffering with serious pain while sitting over the last 6 years. Pain was noticeable and manageable the first year, and by year 6 (today) it is almost intolerable. I have been placed on low dose morphine to control the pain. I don't enjoy being on it - makes me too tired. Anyway, my major issue is that do doctors can diagnose what is going on. I have been to several specialists over the years, even had my coccyx removed - no change. I just went to another colorectal specialist yesterday (who supposedly had experience in PC) and said there was no visible signs (enlarged hair folicles, holes, bumps, etc.) of PC. But that's just the point, I don't have any visual signs. My pain, when I press on it, is located about a 1/3 way down my mid-line just to the left - beneath the skin. I can't even wear jeans - the extra material in the midline puts me over the edge! Here is what I typed up and gave to the specialist I just saw - just so I wouldn't forget to tell him everything: * Extreme pain while sitting (can't take meds at work) * Painful when lying down or any pressure applied - can't wear jeans * Pain is located to left of midline about 1/3 of way down - hurts when pressed * Pain has lasted almost 6 years * Had coccyx removed - no relief * Had many coccyx cortisone and marcane (sp?) injections - temp relief * Primary care doctor is watching white blood count - possible infection * Sometimes have fever and chills for no reason - perfectly fine the next day * Sit crooked or forward due to pain (even have special web chair) * Back constantly hurts due to poor sitting habits * No longer want to take meds - makes me too tired to work/play * Dread driving, flights, watching movies, etc. - that's no way to live The questions IS, can a person have PC below the skin with no visible signs?? If so, how can this be diagnosed?? I had an MRI taken of that region, but they probably didn't know what they were looking for. Can anyone read/interpret MRI imaging?? I would have no problem sending it to you. Thanks to all for listening - this is a great site!
the pictures i have seen looks like an ultrasound had been done in order to see the pocket that is infected. i have not read anywhere of someone having it without the pilonidal dimples, everywhere that i have read those dimples are what can get sweat debris or hair into them and that is how you get an infection, from all the research on this that i have done everyone gets redness and swelling. all of your symptoms are definetly the same symptoms that i have had when i get a flre up. You may want to have them do an ultrasound on it or look on the list of doctors and maybe call one of them and take a drive if you dont have one in your area, maybe there are very rare instances where the pilonidal cysts is extremely deep where you have no sign of it on the skin surface. Here is a link to a picture of what the cyst looks like on a ultrasound http://www.ximenawortsman.com/ They say Few imaging studies had been focused on pilonidal cysts, although, recently with the development of newer generations of variable frequency ultrasound machines, these lesions have been among the common targets for studying. On ultrasound, these cysts show as hypoechoic debris-filled collections in the dermis and subcutaneous tissue. Commonly, they contain hyperechoic lines that correspond to hair fragments within the cysts. Thus, when pilonidal cysts become inflamed and/or infected, color Doppler ultrasound demonstrates increased blood flow in the periphery and/or within the cyst. Good Luck To you!!!!
If you find out how it is diagnosed, please, please post it. I have been in the same boat for 3 years now. I am going to see a plastic surgeon next month to see if there is anything they can do. The surgeon that referred me said that they may be able to move my midline over to where all the scar tissue is removed and healthy tissue is moved between my skin and tailbone. I also have no visible bump/boil, however I have noticed when I stand up, it feels like there is a pocket of fluid in there that rubs against my tailbone. Just last week, I went to shift my weight while I was sitting and something back there felt like it burst/popped and the pain got worse for the whole day. I just can't take it anymore. I've been going to appointments carrying 2 sets of MRI images and medical records from my surgeon and pain management doctor to see if anyone can help. I'm hoping this appointment next month will prove to be a breakthrough and a step in the right direction of getting to be pain free with no meds.
I forgot to mention, when I had my 3rd surgery near the end of 2008, I had no visible bump/boil, or any openings/holes. The surgeon operated because he thought the scar tissue around the nerves back there was causing the pain and he was going to remove some and cut the nerves back and check for neuromas. He never did any tests on me before hand. He removed scar tissue the size of a golf ball back there and the pathology came back that there was a PC. So it IS possible to have one with no visible signs, just not sure of any tests that can be done to determine if it's that or something else causing the pain.
Charm - thanks for replying. I also feel like I have fluid in my tailbone area. I am wondering if it isn't a lingering infection for a partial tailbone removal that I had 3 years ago. I had it removed thinking that it was the source ofthe pain. Unfortunately no. I am really sick of being in pain almost 24/7 now with little help while taking meds. Can you detail your multiple surgeries? Why so many? Thanks for listening, JB
Yea, sure. Here goes In 2000, I was 16. After I had been given referrals from one doctor to another, I was finally referred to a general surgeon. At this point, I had sinus tracts, the whole she-bang. There was never any talk of lancing it, just that I needed to get in for surgery. Surgery was scheduled for November, I went in, they went into my mid-line and did a closed excision on me. I was still tender for a while, but I was able to go about my life like it never happened. Didn't talk about it with anyone due to the embarrassing nature of it, so very few friends knew what happened. In 2006, I was 21 at the time. Senior year of college, taking around 20-some credit hours each quarter. By winter quarter, I knew something was up, there was so much pain, I walked like an old person across campus. It took forever to get places and I had to carry around an extra sweatshirt to sit on. Went back to the same surgeon, said it was PC again. I don't remember if I had the sinus tracts this time. I had the surgery done during my spring break, I know, awful right?!? He went into my mid-line again with the closed excision. Went back to school and eventually, the pain went away, mostly after he removed the stitches again. Fast forward to 2008, I have a full time job, sitting every day. I start getting pain no matter how I sit, so I knew something was amiss. Went back to the same surgeon, didn't have any visible symptoms of PC, but he thought maybe the pain was coming from neuromas (SP?) where the scar tissue was on the nerves, or something... Anyways, he said he could do surgery, cut out some scar tissue and cut back the nerves. He performed another closed excision down my mid-line. He stated he cut out scar tissue the size of a golf ball. Pathology came back stating there was a cyst in there. A month later, I had the same pain, at which point he gave me a cortisone shot, helped for like the first two hours, then shot pain down my right leg into my foot. Eventually started trying to find a surgeon in my area, since I had moved for my job. The regular doctor sent me for an MRI, and referred me to a general surgeon. The surgeon sent me for an MRI two months later. The new surgeon withdrew extra fluid from the area, and at one appointment, he gave me a shot of dexamethasome. I had an allergic reaction to it, so they said there was nothing more they could do for me, since there wasn't a cyst in there, so they referred me to a pain management doctor. I think I had so many surgeries because the disease kept rearing its ugly head. Either that or the doctor didn't really know how to perform the surgeries listed here that have a better reoccurance rate. At that time, I also didn't do a lot of research on it, I thought that the doctor knew what he was doing. Now, I know better. Not all doctors are equipped to handle this thing. So, now, in less than 2 weeks, I will be going to see the top rated plastic surgeon in the area. I will have to tote around all my medical records again, but I am crossing EVERYTHING in hopes that he knows about the cleft lift and will be able to perform one on me, that is if insurance gives the ok. I feel like I am rambling, but I hope I was able to answer your questions. Good luck!
Nope, no luck. The ct I had in February didn't show any current cysts or tracks. So I have a new pain management doctor and I have been getting shots of sarapin. I didn't have good results/reactions to others, but from the ultrasounds he does every shot you can see the scar tissue is breaking up. I'm also having another doctor give me adjustments on my back for compensating from the pain. Still in pain, just taking it one day at a time. Let me know if that helps.
