A thread for those who ride (horses, etc)

IrishOats

New Member
After some thought I decided I wanted to start a thread specifically for those of us who are dealing with pilos and also have horses in our lives! Also, anyone who rides a motorcycle or bike - please contribute too as I believe we can all help each other. Riding horses, bikes or motorcycles, as we know, are activities that can be particularly rough on the tailbone area! I thought a thread for sharing suggestions might be a good idea.

Some ideas of things to share:

  • What do you ride? What type of riding do you do?
  • How long have you been riding? How long have you been dealing with PD? Do you believe your pilo may have been aggravated by riding?
  • Have you had surgery? If so, which procedure(s)? Have you gone back to riding yet, and if so, how is it working out?
  • If you have not had surgery - do you still ride? Any suggestions for keeping things under control, for those of us who are unable to get/do not want surgery for the time being?
  • How do you deal with flareups and how do they affect your riding?
  • Do you use any cushions on your seat/saddle when riding? If so, what type?
  • Any other experiences/ideas that might help others

I have two horses and love to ride...I've ridden regularly for 15 years (English and Western) and never had any problems until a few weeks ago, when my pilo reared its ugly head for the first time.:rolleyes: In my case I therefore don't believe my pilo was caused by riding alone.

I have had one lancing and drainage procedure (2 weeks ago) and it is healing nicely. After doing lots of research on this site (thanks Sasha - it's amazing!!) I insisted the doc make the incision away from the midline. I think this has, in-part, contributed to my fast healing. I have one or two pits in the midline. I have been told my PD is relatively mild.

My second year of graduate school starts in 6 weeks, and none of the surgeons on the hall of fame list is anywhere near me at home or at school (closest is several hundred miles). Lucky me! :eek: I really wanted to get pit picking done but I just can't see spending the $$$ to travel and get that done...I'd rather wait and see how long I have until my next flareup, and then if necessary travel and use that $$$ to get a cleft lift. I have opted against closed and open excision as I believe they are more invasive than necessary, and I have other health conditions that could impair extensive wound healing.

I have not ridden since my incision and drainage procedure 14 days ago. Although it looks like I'm completely healed and I have no pain/itching/redness...I'm nervous about riding again. I won't let the pilo stop me from riding, but it makes me anxious to not know how my riding will affect the thing. Being new to all this I realize it will largely be about trial and error. I've been taking a coccyx cushion with me everywhere when I know I'll be sitting for awhile - it's great and I highly recommend one!

Any riders have suggestions? I don't ride competitively...I usually ride Western but I'm thinking about going back to my English riding roots for awhile because the close-contact saddle seat sits you farther forward, so more of your weight is on your seat bones and not your tailbone. I love riding Western and have been doing mostly that for a few years, but since you sit "on your pockets" in a Western saddle that puts more pressure on the tailbone, so I think avoiding that for awhile might be better. Who knows - maybe it won't make a difference.

I look forward to discussing ideas and sharing experiences with my fellow riders! Cyclists and motorcyclists, please join in as well! ;)
 

Jaredsmom

Very Helpful
GREAT thread!



As most of you know, my son was an avid equestrian (took lessons, but no horse of his own) for years, then found out he had pilonidal cysts. We, as a family, tried to deal with the belief that the ONE thing he loved most in the world, he would not be able to do ever again...ride horses. After a lancing that wouldn't heal and a newly developing cyst, we scheduled a cleft lift. Surgery was a piece of cake, had a minor issue with an undissolved stitch, then he healed up fine. Surgeon told us he could not say how the cleft lift would be affected if he went back to riding...he said he had no other patients who were equestrians, so he had nothing to compare him to. Jared decided to take that chance....he started riding again....and fell off at a canter and landed on his backside only 3 months after his cleft lift. The wound held, no reopening, no reoccurance. He is now pilo free for over two years, and still rides. We bought him his own horses now.... he owns a 9 yr. old Belgian mare he name Epona (a celtic horse goddess) and a 5 yr. old off track Thoroughbred gelding he named Beauseant (the battle cry and banner of the Knights Templar)...we call him Beau for short. ;)

He does not use any cushions, though I have seen some in tack magazines, and they look like a good idea. He does minimal western riding, mainly trail riding, but his major focus is dressage, english riding of course. he has found that western saddles, with the higher cantles and more closed in seating were a bit uncomfortable early on after his surgery. Any long or reoccuring western riding would have been a bit too much for him in the months after his surgery. The english saddles, however, never gave him any pain or discomfort, even in the early months after the surgery. The shallow seating and low cantle don't really push on the cyst area much at all. He can ride western now without the pushing and discomfort he felt early on, but he doesn't usually ride western much or for long periods, so I can't say he wouldn't be a bit sore after a 3 hour trail ride...but then again, who wouldn't?? Even normal people.:p

I cannot say if riding is a predisposing factor for him getting pilos in the first place, but I doubt it. Reason being is that he's been riding for two years now since his cleft lift, and there has been no reoccurance. In his case, when his cyst first came to our attention, he was on Prednisone, a steriod, for his asthma. Prednisone lowers your immune system, wreaks havoc with it actually, and we are supposing his body was not able to fight off the bacterial invasion because of the Prednisone. If not for the medicine, he may not have had a flare up ever, or for years and years...we are not even sure if he even HAD this disease before the prednisone. Likely, he had pits, to be sure.....but they were not active before being put on the steroids.

My advice to you would be to buy one of those saddle cushions, especially if you plan to ride western.... They look like a superb idea for people with tailbone problems.

Keep the cleft clean, dry and hairless, and since your case is mild, you may never need a surgery like cleft lift. It's worth a shot. Use baby wipes instead of toilet paper. It makes a big difference. Really.

IMO, riding does NOT exacerbate or create pilos. The fact that you've been riding for 15 yrs without a problem and my son for over two years AFTER the cleft lift would make this assumption seem logical.

BTW, my son also rides his bike alot, on average he mountain bikes about 20 to 30 miles a week.

That is the beauty of cleft lift, it gave him a normal life back.
 

IrishOats

New Member
I really hope you're right about riding not exacerbating the problem. It's been 16 days since my lancing and drainage and I'm essentially healed but I'm really scared to go riding. Not knowing how this thing is going to react to riding is driving me crazy...oh well. I'll just have to cross my fingers! If I end up needing surgery I have to wait until next summer when school is out, so hopefully I can maintain it well enough until then.
 

just_tessa

New Member
Country flag
Hi. I probably won't be of any help but I'm absolutely terrified of the fact that I probably do have the pilonidal disease. I'm a 21 year old female and a virgin which is a big part of the problem and of what scares me about it. I used to do horseback riding since I was 7 and stopped when I was around 18 due to my exams. Then I proceeded to vet school and now if there wasn't the whole covid situation I'd be riding horses there. But because of the pandemia, I hadn't ridden in about a year or so. I first noticed something weird about my tailbone area or the gluteal cleft when I was maybe like 17. But I didn't pay much attention to it thinking I was only wearing the wrong underwear because it was the age when I first started experimenting with thongs and stuff. Sometimes it'd flare up and blood would appear. Sometimes it'd be just pink and the skin would be unhappy it idk how to say it. I never noticed any cysts or openings or anything. Just a little sacral dimple or something like that. And a lot of pressure and discomfort in the area if I sit or lie down. It affected my workouts too because I can't do most abs exercises like sit-ups but I believe y'all are familiar with that. Last summer I first managed to show it to a dermatologist. Before that, I was too scared and ashamed too. The first one thought it was either scleroderma or lichen sclerosis and prescribed some topical cream with corticosteroids. It kind of calmed it down at first but made it worse with longer use. Then with another dermatologist (I went to this one just because my original dermatologist was on a holiday), I started taking low dosage isotretinoin for my acne in September 2020 (that has been great, my skin is almost clear by now). I also showed her my butt problem and she said she wasn't sure what it could be from what it looked like at that moment but in case it was some of the autoimmune diseases mentioned by the other doctor, oral retinoids could actually be helpful according to some studies. But nothing changed in my butt cleft while my facial skin got significantly better. Later I decided I wanted to get an excision for lab testing to find out whether it really wasn't the lichen or stg because in that case, I wanted to make some dietary changes that tend to help with autoimmune diseases. So I went to an aesthetic dermatologist clinic where the doctor is my dad's friend. The only reason why I don't treat everything there is the price. But I decided to take care of my tailbone problem there because they do the excisions right there so I wouldn't have to go to multiple doctors just to get the job done. But to my surprise, she said it was sinus pilonidalis. Because of my isotretinoin treatment which doesn't recommend any surgeries while on it because of the possibility of worsening the healing process and scarring, she never considered sending me to a plastic surgeon for a surgery. Instead, she came up with an idea of laser hair removal combined with botox injections to avoid sweating in the area to keep it under control during my time on isotretinoin. I found a case study where this method actually was an experimental way of treating this disease so I went for it. She and I both know that laser treatments are also not recommended while on isotretinoin but I only take 20 mg and it is a small area. And we had to do something. The problem is that the pressure and discomfort in that area won't go away and I'm already quite tired of it. I can't lie on my back or if I sit in always have to sit on my legs which then causes problems to the blood flow in them too. So I pay 30-60 € monthly for the laser treatment (60 if there is also botox but that only goes once every 6 months or so) and don't see much improvement from it. The problem worsens and gets better during the month. I just started writing it down to figure whether it is related to my woman cycle in any way but I don't think that's that important. It's just for my own comfort because if I know it will get better the next week I'll feel lighter in general. What I'm terrified of is the combination of three factors. The surgery I might want to get later to just finally get rid of it, the fact that I want to continue riding horses in the future on at least a hobby level and the fact that I'm a virgin and don't wanna die it because I won't feel sexy enough with the scar. My butt is something I always found to be one of the prettiest parts of my body, the most feminine one for sure and I just can't imagine myself with the cleft lift. But if I get it done following the midline there is a higher chance of recurrence and it might cause problems with horse riding. I just burst out crying an hour ago and kept going writing this whole thing because I just really don't know what to do. Is there any way out of this where I don't lose the part of my body I'm most proud of, get the shit treated and will be able to do the only thing I was ever good at and loved? I'm here even for any alternative medicine methods from acupuncture to meditation. I just want to get rid of it and live my life to the fullest again. Thank you for any advice or even just for kind words. Or just for reading this.
 

Spokm34

Very Helpful
Country flag
Hi. I probably won't be of any help but I'm absolutely terrified of the fact that I probably do have the pilonidal disease. I'm a 21 year old female and a virgin which is a big part of the problem and of what scares me about it. I used to do horseback riding since I was 7 and stopped when I was around 18 due to my exams. Then I proceeded to vet school and now if there wasn't the whole covid situation I'd be riding horses there. But because of the pandemia, I hadn't ridden in about a year or so. I first noticed something weird about my tailbone area or the gluteal cleft when I was maybe like 17. But I didn't pay much attention to it thinking I was only wearing the wrong underwear because it was the age when I first started experimenting with thongs and stuff. Sometimes it'd flare up and blood would appear. Sometimes it'd be just pink and the skin would be unhappy it idk how to say it. I never noticed any cysts or openings or anything. Just a little sacral dimple or something like that. And a lot of pressure and discomfort in the area if I sit or lie down. It affected my workouts too because I can't do most abs exercises like sit-ups but I believe y'all are familiar with that. Last summer I first managed to show it to a dermatologist. Before that, I was too scared and ashamed too. The first one thought it was either scleroderma or lichen sclerosis and prescribed some topical cream with corticosteroids. It kind of calmed it down at first but made it worse with longer use. Then with another dermatologist (I went to this one just because my original dermatologist was on a holiday), I started taking low dosage isotretinoin for my acne in September 2020 (that has been great, my skin is almost clear by now). I also showed her my butt problem and she said she wasn't sure what it could be from what it looked like at that moment but in case it was some of the autoimmune diseases mentioned by the other doctor, oral retinoids could actually be helpful according to some studies. But nothing changed in my butt cleft while my facial skin got significantly better. Later I decided I wanted to get an excision for lab testing to find out whether it really wasn't the lichen or stg because in that case, I wanted to make some dietary changes that tend to help with autoimmune diseases. So I went to an aesthetic dermatologist clinic where the doctor is my dad's friend. The only reason why I don't treat everything there is the price. But I decided to take care of my tailbone problem there because they do the excisions right there so I wouldn't have to go to multiple doctors just to get the job done. But to my surprise, she said it was sinus pilonidalis. Because of my isotretinoin treatment which doesn't recommend any surgeries while on it because of the possibility of worsening the healing process and scarring, she never considered sending me to a plastic surgeon for a surgery. Instead, she came up with an idea of laser hair removal combined with botox injections to avoid sweating in the area to keep it under control during my time on isotretinoin. I found a case study where this method actually was an experimental way of treating this disease so I went for it. She and I both know that laser treatments are also not recommended while on isotretinoin but I only take 20 mg and it is a small area. And we had to do something. The problem is that the pressure and discomfort in that area won't go away and I'm already quite tired of it. I can't lie on my back or if I sit in always have to sit on my legs which then causes problems to the blood flow in them too. So I pay 30-60 € monthly for the laser treatment (60 if there is also botox but that only goes once every 6 months or so) and don't see much improvement from it. The problem worsens and gets better during the month. I just started writing it down to figure whether it is related to my woman cycle in any way but I don't think that's that important. It's just for my own comfort because if I know it will get better the next week I'll feel lighter in general. What I'm terrified of is the combination of three factors. The surgery I might want to get later to just finally get rid of it, the fact that I want to continue riding horses in the future on at least a hobby level and the fact that I'm a virgin and don't wanna die it because I won't feel sexy enough with the scar. My butt is something I always found to be one of the prettiest parts of my body, the most feminine one for sure and I just can't imagine myself with the cleft lift. But if I get it done following the midline there is a higher chance of recurrence and it might cause problems with horse riding. I just burst out crying an hour ago and kept going writing this whole thing because I just really don't know what to do. Is there any way out of this where I don't lose the part of my body I'm most proud of, get the shit treated and will be able to do the only thing I was ever good at and loved? I'm here even for any alternative medicine methods from acupuncture to meditation. I just want to get rid of it and live my life to the fullest again. Thank you for any advice or even just for kind words. Or just for reading this.
I'm afraid that this disease never truly goes I tried to live with it for 5 year's and ended up with the worst outcome as I didn't want surgery, I'm afraid it just keeps coming back, what is you're concern with the cleft lift? Because it does put an end to this awful disease and it doesn't change the shape of your butt the scar you won't even notice it be like it's not even there.
 

just_tessa

New Member
Country flag
I'm afraid that this disease never truly goes I tried to live with it for 5 year's and ended up with the worst outcome as I didn't want surgery, I'm afraid it just keeps coming back, what is you're concern with the cleft lift? Because it does put an end to this awful disease and it doesn't change the shape of your butt the scar you won't even notice it be like it's not even there.
I was concerned about the scar and the shape of my butt after the surgery because from the photos I have seen it looked like... Well I'd have no butt crack idk how else to say it. And it just seems so weird to me I can't really imagine what it'd look like. Also, I'm from a small country in central Europe and have no idea if any surgeon here does the procedure like that so that the outcome would be as subtle as you are saying. I either just don't know how the procedure is called in my language and thus can't find it or it's not done in my area and idk how to find out. I'll probably ask my dermatologist. She is highly probable to know some plastic surgeons too since her clinic is aesthetic dermatology oriented. Is there anywhere where I could find maybe some photos of fully healed scars after the cleft lift procedure? Ideally in females since the area is usually shaped a bit differently....
 

Spokm34

Very Helpful
Country flag
I was concerned about the scar and the shape of my butt after the surgery because from the photos I have seen it looked like... Well I'd have no butt crack idk how else to say it. And it just seems so weird to me I can't really imagine what it'd look like. Also, I'm from a small country in central Europe and have no idea if any surgeon here does the procedure like that so that the outcome would be as subtle as you are saying. I either just don't know how the procedure is called in my language and thus can't find it or it's not done in my area and idk how to find out. I'll probably ask my dermatologist. She is highly probable to know some plastic surgeons too since her clinic is aesthetic dermatology oriented. Is there anywhere where I could find maybe some photos of fully healed scars after the cleft lift procedure? Ideally in females since the area is usually shaped a bit differently....
I had the cleft lift surgery done 2 week's ago today and I looked in the mirror to see if I could see the scar I honestly couldn't see it anywhere, I don't know if it shows up in a couple of week's but I have seen pictures online off it if you go to Google and type in cleft lift https://www.google.com/amp/s/piloni...cedure-a-cure-through-better-engineering/?amp they normally post pictures of how the finished operation is and looks hardly visible.

For the shape of the butt I can't really see any difference between how it looked vs after my surgery it still looks pretty much the same after my surgery.

I would say if you don't want to have any surgery you could try to get the pit picking see if anyone can do that or just have it drained if it ain't too bad it should heal up quickly surgery is only really needed for extreme cases where it's heavy infected and antibiotics won't work it's the last resort unfortunately it seems the uk and the USA has the only top surgeons who can do cleft lift.

I wouldn't try to get open surgery that would be the worst outcome it make it worst I would do a lot of research and see if you can find someone that can just do pit picking or draining it so it doesn't require any surgery at all sorry to hear you're going through this.
 
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