Pilonidal Cyst Disease
Several weeks ago my 16-year old daughter mentioned that her tailbone was hurting. When I inquired as to what she might have done to injure it, she had no idea. She thought that maybe she sat down too hard on a chair at school. She let me look at her lower back but I did not see anything unusual. I told her that her tailbone was probably bruised and to try to rest it as much as possible. A couple of days later, she was at a Sea Scouts Regatta practice about an hour away. Late in the afternoon, I received a phone call from the ship’s Skipper saying he was worried about my daughter as she was in pain and just lying around (this is not typical of her during regatta practice!). He said they would be home soon and just wanted to let me know.
Symptoms
When she arrived home, she was in tears, almost hysterical. She told me she couldn’t stand it anymore and it hurt so bad. She asked to go to Urgent Care. Of course they were closed on a weekend evening, so we headed to the emergency room. Upon examination, the doctor informed us that she had a Pilonidal abscess (sometimes referred to as a cyst). He explained to us that there are several causes, but most likely in her case, that it was how she formed in the womb. He said the two sides of the buttocks are the last area to come together when a baby is forming and sometimes where they meet, it is kind of uneven, which can cause these cysts. He mentioned that he also had them when he was in college and he remembers how very painful they were.
What IS Pilonidal Disease?
The doctor continued to tell us that most of the time surgery is needed, as the cysts are very hard to get rid of. He hesitated to lance the cyst, as it would have to be healed before surgery could take place. After speaking with a couple of other doctors, they decided it was best to leave it alone and that she should see her doctor immediately on Monday (and she would probably be referred to a surgeon). He prescribed two different antibiotics as well as pain meds.
Neither myself or my daughter had ever heard of this disease before, but apparently is happens more than people realize. It is most common between the ages of 16-26, and happens mostly to males.
We saw her doctor on Monday and she mentioned that she has seen a few cases of this recently. The doctor was surprised that my daughter had been able to attend school the previous few days, and ordered her to stay home from school for the rest of the week. She made a few calls to the hospital, spoke with the pediatric surgeon, and they determined that my daughter would need to be admitted to the hospital the following day for IV antibiotics and possible surgery. I was scared beyond words. What was happening?
That night I spent hours online, researching this mysterious disease. I was actually horrified by most of what I read and saw. I found out that there are two different types of surgeries – traditional, where they remove the cyst as well as the “sinuses” that run from it (and can cause more cysts pop up in the same general area), which can be quite deforming and painful. It takes weeks to recover, and the wound has to be packed daily. I also read about another type of surgery called the “Cleft Lift” method for Pilonidal Cysts, which sounds much less severe, and reduces healing time. Some doctors are experienced in this type of surgery, and I knew that if she had to undergo surgery at all, I would want the best of the best.
While looking online, I found that a fellow mom blogger had also experienced Pilonidal Cyst Disease! She explains it quite well in her posts about her experience and surgery. I found it interesting that she too, first thought that she had a tailbone injury. She also said that it felt like she sat on a tack.
Treatment
My daughter was admitted to the pediatric floor of the hospital the following morning and they immediately started her on IV antibiotics. We waited and waited for the surgeon to arrive, and he finally showed up about 6 p.m. After he examined her, he decided that he wanted to lance it and hold off on surgery. The sent my husband and I out of the room (gosh it was hard to leave her), they gave her a shot of morphine and began the procedure. When the doctor came to get us, he told us that she is a tough girl…that it is so painful, and she handled it like a champ. He believed that he got it all, and hopefully she won’t need surgery in the future. But this is something we will have to keep a very close eye on forever. She was discharged that evening with instructions to take 2 baths a day for awhile, and to keep it covered with gauze. I had to help her the first couple of days. She is recuperating well but this will always be in the back of our mind. Fully recovery should take 6-8 weeks.
Prevention and prognosis
Although this might be awkward to discuss with your teenager (or young adult child), it is SO important. There are several causes other than the formation of the baby in utero, including a deeper “valley” (pit) at the top of the heiney, which can get filled with debris, etc. I would explain the importance of hygiene and possibly suggest cleaning extra well there, just to be on the safe side. This wasn’t the case with my daughter, but every bit of prevention helps.
Pilonidal Disease can lie dormant for years, so once you have it, it won’t just magically disappear. If your teen complains of their tailbone hurting, please, please check for yourself to see if it might instead be a Pilonidal Abscess, and get to the doctor or ER immediately. This is definitely not something you want your child to have to deal with for the rest of their lives.
I encourage you to visit www.Pilonidal.org to learn more about the causes, symptoms and treatment. Please share this with others who have children or young adults in their lives. I’ll bet they haven’t heard of this either!
I’m still reeling from this event. Are you familiar with Pilonidal Disease?
30 Responses
Poor thing, I’ve dealt with that from 12 through my late 20’s (hopefully wont come back again) I must say its awesome how much you’ve already researched it. When I was younger we had no idea how bad it could be and different doctors would just lanced it in the office without meds and without removing it or just give me antibiotics so would just grow larger, sometimes as big as a grapefruit, every year. Even went to ER where inexperienced residences lanced it without pain meds and cut a vein. Since doctors botched it so much when I finally had surgery in 2001 they couldn’t remove it all since it had attached to my spine. I think for me one of the worse was being huge pregnant in 2003 and having one, not fun.
It sounds like the doctors your daughter saw have dealt with it before and know how to handle it so that’s great. I hope she heals fast and it never comes back, though at least now you know signs to look for if it does happen to.
I am just horrified at your experience! Knowing what I know now, that is the worst thing they can do…you poor thing, that must have been incredibly painful. I’ve never heard of them getting as big as grapefruits – how awful.
I hope yours never, ever comes back!
Wow, I’ve never heard of that disease before. Thanks for the information, symptoms and warning signs of it so I can keep it in the back of my head in case my teens ever complain of their tailbone hurting. I wish your daughter well.
You are very welcome. This was such a mystery to us, so I hope this will help others (like you said, keep in the back of the mind) if this ever happens.
Thank you for the well wishes for my daughter – I appreciate it!
When I was in my twenties, I began suffering from tailbone pain. I was told originally that it was a pilonidal abcess, but later, a second opinion determined that that was not the cause. It was simply coccydinia, which is literally pain in the butt. It can be caused by sitting on something hard for too long, lots of things. It was really awful, and I was actually sad to find out that there was no cause and no cure, although it did eventually go away on its own. So should this come up, be sure to get at least 2 opinions, because it may be a pilonidal issue, or it could just be coccydinia.
Oh no, your poor daughter! What an awful experience for her, and you as well. I have never heard of this disease before, but I know as a mom how much it hurts when your child is in pain.
I hope she’s doing better.
It really does…it broke my heart to see her crying in agony. It was devastating.
Thank you for stopping by, and for your good wishes!
I’m so glad she didn’t need surgery. Gosh, I know that was scary for you all. *hugs*
Yes I am very familiar with it. Myself and my sister suffer from them. I had my first when I was in college and thought I had just bruised my tailbone. I went to the ER where they gave me an antibiotic but 2 days later it got bigger so I had to have it lanced. Talk about pain. I remember having to constantly go back to the Dr every few days to have my packings removed and restuffed. The Dr told me to shower twice a day to let the water just run through it. My last one was about 3 years ago thank the Lord. I was going to have surgery but was told that even with surgerty they can still come back so I decided not to. What I have learned is that when my tailbone starts hurting to IMMEDIATELY call the Dr and get an antibiotic. If you wait too long it will be too late and it will have to be lanced again. The second time I had it lanced I was 5-6 months pregnant and man ohh man that was uncomfortable. My sister is the same way as soon as she feels her tailbone start to hurt she gets a prescription. If your daughter remembers that it will help in the future. Hopefully hers will never come back again.
I am so sorry you both suffer from this too. Thanks for the words of advice for my daughter – I will mention it to her. I really don’t want her to have to have surgery either, so maybe if it comes back, we will do what you did and just keep getting it treated.
I hope you both never get them again!
Oh my goodness! I just came across this post! I was thinking who is this fellow mom blogger that had also experienced Pilonidal Disease?! And it was ME! Haha! Yes it is SOOO painful! I hope your daughter is feeling better now! And hopefully she won’t end up needing the surgery in the future!
I am 13 years old my tailbone is hurting alot . When i sit down and move it hurts like hell and when i stand up it hurts soo much i didt fall or injured anywhere but idk what happened to me .-.
You definitely need to go see a doctor right away. It can get worse (and more painful) quickly. I hope you feel better soon!
Just got back from the doctor it isn’t looking to good for I’m due for surgey on Tuesday or Thursday lets just say these things are a pain in the ass and the is a lot for this great summer not doctor said my summer is done
Hi Jennifer, hope your daughter is all good now! My 16 year old started complaining of tailbone pain two days ago and we have been doing ice and ibuprofen, she has not injured it recently. I’m curious if the cyst is noticieable or if it’s internal. Thinking I should get her in to the doctor to see what is going on. Thanks for the informative article.
Hi Amy,
I am so sorry to hear this! I would definitely get her to the doctor asap, as it gets incredibly painful. I can’t remember if it was noticeable from the outside so much, but it was more of a “lump” under the skin. The area on the surface may be red or inflamed. I hope all goes well and that they can take care of it before it gets much worse…
ii am 14 years of age and this is my second time going into this painful experience , it really does hurt and in a strong girl. . i couldn’t stop yelling in pain, you sound like a great mother. i actually might end up getting surgery this’s time, in really scared . i actually fainted cause the pain was so intense. my first was at 13 ever time around december it starts forming. i really hate this 🙁
I am so sorry you have been through, and are going through this a 2nd time! My daughter said the pain was unbelievable, so I really do feel for you. Don’t be scared of surgery though – it should take care of the problem for good. I hope it will get better and not come back again!
Hi,
Thank you so much, I will look into this as my daughter has a hurt tailbone. Scary. Hope all goes well your way.
Yikes – I hope this isn’t what it is!
I just came across your post and wondered if your daughter had ever had any reoccurrence? My daughter is an athlete and it sounds like your daughter was into rowing? We have had two bouts with us this summer the first one was simply lanced the second time they went and took out the entire sinus cavity and cyst. It’s been 2 1/2 months and she is now miserable again but the MRI suggest it’s simply scar tissue. I would like to let people parents know if you have an athlete please don’t let them work through the pain. We are positive my daughter Trouble started with a trauma to the tailbone playing soccer followed by repeated friction while doing CrossFit, sit ups and cross country running. Hers started as a small information at the very top of her buttocks where teen girls have a little dimples. Within two days it grew to a fist size cyst. The second time it was simply swollen that we didn’t want to wait for it to get infected so the surgeon took it out.
Oh my gosh – that sounds terrible! My daughter said that pain was excruciating! I don’t believe it has come back – I do think taking out the cavity/sac does help a lot. I feel so bad for your daughter, and I hope she feels better soon!
I had this when I was like 20ish(?). I, too, thought I must’ve somehow done something to my tailbone. To the point I made a chiropractor appt. Not only did she not look at it but she pushed on it so hard OMG!!! Talk about pain. I couldn’t get up to walk for probably 10 minutes. Needless to say… I never saw her again!
I went to my doctors office. Explained my symptoms to the nurse. The doctor comes in and reads and confirms it and asks the nurse what she thinks it was. And she nailed it on the head. Neither one even had to look at it to know what it was. I initially had it lanced. And after some time passed it came back. So it was lances again and surgery was set. I don’t know which type of surgery I had but to date (maybe 20 yrs later) it has not come back.
I found out some time ago that my younger half brother also had this surgery. So it made me wonder if it can possibly be genetic from my father’s side.
My surgery was successful outside of them having to go deeper than originally anticipated. So I have an interesting scar by my tailbone. I’ve debated getting a tattoo on it. But in case I end up having back surgery for a bad disc… who knows maybe they can go in the same way and fix it up for me. Lol (I know wishful thinking.)
I hope your daughter is doing well. And please try not to worry so much. It sounds like she’s a tough gal. 🙂
Oh no – I am sorry to hear that you had this too. She was in SO much pain, it really broke my heart. I hope yours does not come back!
My boyfriend has this! It started with one that was red inflamed and leaking got months he works outside in Florida doing tree removal, after the sore one started getting more painful he asked me to check it, ummm he has like 15 holes in a straight line from hip bone hight to his bathroom opening, I am scared why is there so many holes? I also read last night that it was hereditary and that it can cause baby’s to have Spina bifida (spelled wrong) so I just had a baby four months ago and I always wondered if her legs looked weird and my bf kinda walks funny he always has abs now I’m really scared I can’t find the site now that I read it on but it for sure said it’s hereditary
Hmmm I’m not sure if it’s hereditary.
I’ve been researching this like crazy since yesterday and came across your post. Last week my 14 yr old daughter experienced pain in her tailbone area and said she thought she got a bug bite and that it was painful. The night she thought this happened she did a marathon dance practice up almost all night to learn a particular dance with her friends. She overnighted there and slept in a room where the girls turned the heat up to 80°. My daughter woke up sweating profusely and turned the heat down. Since then the pump abscessed and became red, tender and swollen and she could not go to school yesterday, which is killing her because she is a straight A student taking honors classes and new freshman who doesn’t want to miss a single instruction. I researched online yesterday after hot compress seeing the area a dozen times with no relief. Came across the actual problem and couldn’t believe my eyes. Called her care provider and was able to get her in yesterday at 4 PM to have it looked at where it was confirmed Pilonidal cyst/abscess. The care provider tried to drained a little bit of it to give my daughter relief and took a culture of it. She immediately put in an urgent referral to the surgery center to have it removed. She put her on a septra antibiotic.
We are waiting anxiously for the referral process and scheduling of this appointment today. I am curious about this procedure and will ask the surgeon about all of the questions I have when we get there. My daughter is in so much pain. A sidenote, my daughter also is a horseback rider and has recently changed saddles and is riding a different horse who has been rearing alot during her riding. I have read it there are many ways a person can get these types of cysts. I believe a combination of my daughters dancing, sweating and horseback riding were the perfect storm for this to happen. She is normally a very sweaty girl and is hypersensitive about that and showers sometimes twice daily. That night she danced with her friends and stayed overnight she was not able to shower there but came home the next day at lunch time to shower. I believe all of this contributed to her situation.
Thank you for your post, I am glad there is a place to come and read other moms stories or others experiences with this issue. I will let you know how it goes.
Oh please do keep me posted. Initially I thought my daughter might be exaggerating about the pain, but the pain is REAL! I felt so bad. Another thing that can lead to these cysts is the if the area is “deep”. It is more pronounced in some people.
I am SO sorry your daughter is dealing with this too. Not only is it painful, but it is embarrassing. Your daughter should feel better shortly after the surgery. My daughter bought one of the blow up ring pillows to sit on and it really helped her. She even took it to school, as the hard chairs were just too uncomfortable. I feel for you both!
I cured mine with Abreva. Had this in my groin and buttock, very painful and irritating. I’m a clean freak so saying this is caused by bad hygiene is definitely not the case. Not sure if this is a virus our what it is but for me I put Abreva on it 3 times a day heavy for about a week. After the first day I had no more pain and I stopped after a week. It’s been a full year and I’ve had no occurrence and I haven’t put Abreva on it since.
Wow I wish we had known about this! Thank you for this information!