Never had - cyst or pilo? Please anyone help

CC123

New Member
Hi, I am a 27 year old female.

About a month ago I started to exercise to lose weight and running 2 miles about 3/4 days a week and floor exercises (in the garage) but used a yoga mat plus ab mat after discovering the yoga mat was not enough cushion due to concrete floors. A couple weeks or so into my exercise routine I noticed a lump above my tailbone off to the left near the upper buttocks. It was hard and felt bruised like so I thought it would just go away once the swelling went down. Then I started to notice when I would do floor exercises that I couldn’t even sit on the area of the lump without feeling pretty bad pain like it was hitting bone or something but when I just touched it with my fingers and lightly pressed on it there was no pain maybe just a bruise like feeling from attempting floor exercises. I did not continue to do floor exercises sitting on my buttock/tailbone area for about a week. I took a week off of exercises due to a shin splint in my left leg had not even felt any irritation or pain from the lump and had almost forgotten about it. But as my leg felt slightly better after the week off, stretching, I tried to do alternative exercises rather than running. I am now about 3 weeks into exercising at this point. On the first day of getting back into exercise I did walking for about 15 minutes until I realized my shins were not quite better so I stopped immediately and did floor exercises on my back/buttocks but I did not feel too much pain but rather uncomfortable as I tried to avoid the area still. Later that evening about 3-4 hours later I started to feel a dull ache on my left back side above the lump area which quickly became a shooting pain that spread down to my left buttock and across my back then into my other buttock plus both my thighs felt sore/weak. The pain was bad and it just came to me that it might be because of the lump so when I looked into the mirror to investigate the lump, I saw 3 midline “holes” in between my buttocks that I had never noticed before. I FREAKED. Nothing coming out of it or anything like that. I looked up what it could be and all signs pointed to Pilonidal cyst. so I went to urgent care the next day mainly because of the sharp pains. I also was concerned about the holes and the lump. The doctor did a physical exam and told me I did not have a Pilonidal cyst despite obvious holes in my midline and that I may have injured my coccyx. when she pressed down into the area it wasn’t painful enough just really uncomfortable (like someone pressing down on your anus area which is already a sensitive area) but she was adamant about it.

I also realized later on that I may have also had constipation as it was unusal that I had not had a bowel in a few days (about a week prior to the back pain, I’m guessing on the timeline) but at the time didn’t think anything of it as I had no abdomen pain. However, My symptoms only got worse because 4 days later after urgent care I went to the ER for SEVERE abdominal sharp pains and diarrhea (almost just liquid) which would be felt across the abdomen and what felt like I had to pee/pressure like in my bladder (almost feels like I have a UTI). I was afraid that I had something wrong with the kidneys, appendicitis or bladder or something else causing these pains. All tests came back normal. Blood, Pap smear, ultra sound on ovaries, no uti, everything clear. But I was still experiencing abdominal pains/bladder pressure. I don’t know exactly if the ultra sound with the pelvic examine was able to see everything or not as the doctor did not say but just said that everything was fine and they didn’t know the exact reason why I was feeling pains. I should also mention that the ER Doctor assistant said she didn’t see a pilo or a sign of pilo and I even pointed out the lump AND the mid line holes.

I took it easy for a few days but the pains have not gone away in my abdomen, bladder area (pressure like, like I have to pee, UTI, etc), no blood in urine or stool, no painful bowel movements at all. But these symptoms are not going away even with antibiotics (day 5/6) that I was recently prescribed . I also get shooting sharp pains (muscle spasm) pretty much everywhere on my lower body; back, spine at times, abdomen, pelvis where my bladder or uterus is, kidney/rib area, and even the anus and vaginal area (just the feeling of a needle or knife stabbing like a spasm) as if my body is “responding” to this infection? I don’t know. Does anyone know?? I have been searching high and low on the internet to see if anyone else has these symptoms and if it is this cyst or a pilo. I have not had any pus or “pimple” or anything coming out of the hard lump or midline. I am not sure if a “pimple” everyone seems to mention is separate from the cyst or the cyst is/becomes the pimple?? Very confused. And also want to know if this “pimple” thing would ever happen as time goes on.

I feel like my nervous system and muscular system is being attacked (call me crazy, but the spasms are painful) as well as my neurological system as I am usually sharp witted but have noticed that I forget or am not as sharp recently. I was recommended to do sitz baths with warm/hot water, hot compresses, keeping the buttocks dry and clean, stretching for the muscle pain which I have all been doing. And I had already prior to all of this happening taken supplements everyday (vitamin C and E, 40 billion probiotics) and had been eating healthy as I have lost 10 lbs in just the short amount of time I have had to exercise.

I went to the doctor again after the ER (this would be a 3rd Doctor) about 3 days later as a follow up and although I have not had AS severe abdominal pains that I was still feeling the sharp pains and was still questionable if I had injured my coccyx and also concerned about the lump and midline holes. The doctor did not see a pilo cyst and did not “see” a “mass” I had to point it out but it is SO obvious I mean Cmon! He issued an X-ray (for my tailbone) and it came back clear no signs of fracture or degeneration. But when I had to lay down on my back for the X-ray which was a semi hard surface I was nearly squeezing my buttocks instead of relaxing due to feeling the lump pressing on my tailbone or spine area. Later that evening going to lay down I had achy arms and legs as if they were heavy and couldn’t move and excruciating back pain which I believe was due to laying down for X-ray. I saw the doctor AGAIN a couple days later, still same symptoms, abdominal pains, bladder pressure, back pain, spasms, and I told him about the back pain I experienced during/after X-ray and that I believe my back pain is caused by the lump. He examed it again after he stated again he did not see one last time (LOL) and I pointed it out with my finger (LOL) as he pressed on it AND measured (3.5/1) he then stated he thinks it could be a pilo that hasn’t ruptured. And issued a CT scan for abdominal pains and ultrasound for cyst which I am due for one in 2 days.

I honestly believe that my CT scan will come back clear as everything else did and honestly believe that I have a pilo, what else would cause the midline holes? Haven’t found anything else that could. Is anyone else experiencing this. I am praying it all goes away, my fiancé seems to be too optimistic, not really making me feel better though.

On day one of taking antibiotics before sleep my back felt like it was on FIRE, super hot, heated. Is this normal? Maybe my body fighting the infection?? I also can’t sleep/sit or lay on my sides comfortably and believe my body is waking me up due to the pains. Please help. I am doing all that I can, but have heard surgery can re occur. I have never had any surgery in my life before never broken anything or sprained anything or fractured anything. I just am desperate for answers, is this cyst the cause of all my symptoms because none of this happened until I had the back pain. Also it has been about 2 weeks since urgent care visit. I have been to urgent care, ER, and two doctors visits in that amount of time because I need help and need answers. The doctors also did not prescribe any pain meds and I honestly didn’t even think about asking for any even though I say I’m in severe pain at times especially when lying down. Sitting and driving is also uncomfortable, the “coccyx cushion” is even painful to my legs maybe I’m sensitive I don’t know. I do not wear tight clothing either unless yoga pants are considered tight but I really don’t think so.

Help.

Sorry for the long post I just want to know if anyone else has similar symptoms/story or other advise to reduce pain/swelling/infection.
 
Last edited:

Mcm222

Helpful
Hi, I am a 27 year old female.

About a month ago I started to exercise to lose weight and running 2 miles about 3/4 days a week and floor exercises (in the garage) but used a yoga mat plus ab mat after discovering the yoga mat was not enough cushion due to concrete floors. A couple weeks or so into my exercise routine I noticed a lump above my tailbone off to the left near the upper buttocks. It was hard and felt bruised like so I thought it would just go away once the swelling went down. Then I started to notice when I would do floor exercises that I couldn’t even sit on the area of the lump without feeling pretty bad pain like it was hitting bone or something but when I just touched it with my fingers and lightly pressed on it there was no pain maybe just a bruise like feeling from attempting floor exercises. I did not continue to do floor exercises sitting on my buttock/tailbone area for about a week. I took a week off of exercises due to a shin splint in my left leg had not even felt any irritation or pain from the lump and had almost forgotten about it. But as my leg felt slightly better after the week off, stretching, I tried to do alternative exercises rather than running. I am now about 3 weeks into exercising at this point. On the first day of getting back into exercise I did walking for about 15 minutes until I realized my shins were not quite better so I stopped immediately and did floor exercises on my back/buttocks but I did not feel too much pain but rather uncomfortable as I tried to avoid the area still. Later that evening about 3-4 hours later I started to feel a dull ache on my left back side above the lump area which quickly became a shooting pain that spread down to my left buttock and across my back then into my other buttock plus both my thighs felt sore/weak. The pain was bad and it just came to me that it might be because of the lump so when I looked into the mirror to investigate the lump, I saw 3 midline “holes” in between my buttocks that I had never noticed before. I FREAKED. Nothing coming out of it or anything like that. I looked up what it could be and all signs pointed to Pilonidal cyst. so I went to urgent care the next day mainly because of the sharp pains. I also was concerned about the holes and the lump. The doctor did a physical exam and told me I did not have a Pilonidal cyst despite obvious holes in my midline and that I may have injured my coccyx. when she pressed down into the area it wasn’t painful enough just really uncomfortable (like someone pressing down on your anus area which is already a sensitive area) but she was adamant about it. I also realized later on that I may have also had constipation as it was unusal that I had not had a bowel in a few days (about a week prior to the back pain, I’m guessing on the timeline) but at the time didn’t think anything of it as I had no abdomen pain. However, My symptoms only got worse because 4 days later after urgent care I went to the ER for SEVERE abdominal sharp pains and diarrhea (almost just liquid) which would be felt across the abdomen and what felt like I had to pee/pressure like in my bladder (almost feels like I have a UTI). I was afraid that I had something wrong with the kidneys, appendicitis or bladder or something else causing these pains. All tests came back normal. Blood, Pap smear, ultra sound on ovaries, no uti, everything clear. But I was still experiencing abdominal pains/bladder pressure. I don’t know exactly if the ultra sound with the pelvic examine was able to see everything or not as the doctor did not say but just said that everything was fine and they didn’t know the exact reason why I was feeling pains. I should also mention that the ER Doctor assistant said she didn’t see a pilo or a sign of pilo and I even pointed out the lump AND the mid line holes.



I took it easy for a few days but the pains have not gone away in my abdomen, bladder area (pressure like, like I have to pee, UTI, etc), no blood in urine or stool, no painful bowel movements at all. But these symptoms are not going away even with antibiotics (day 5/6) that I was recently prescribed . I also get shooting sharp pains (muscle spasm) pretty much everywhere on my lower body; back, spine at times, abdomen, pelvis where my bladder or uterus is, kidney/rib area, and even the anus and vaginal area (just the feeling of a needle or knife stabbing like a spasm) as if my body is “responding” to this infection? I don’t know. Does anyone know?? I have been searching high and low on the internet to see if anyone else has these symptoms and if it is this cyst or a pilo. I have not had any pus or “pimple” or anything coming out of the hard lump or midline. I am not sure if a “pimple” everyone seems to mention is separate from the cyst or the cyst is/becomes the pimple?? Very confused. And also want to know if this “pimple” thing would ever happen as time goes on. I feel like my nervous system and muscular system is being attacked (call me crazy, but the spasms are painful) as well as my neurological system as I am usually sharp witted but have noticed that I forget or am not as sharp recently. I was recommended to do sitz baths with warm/hot water, hot compresses, keeping the buttocks dry and clean, stretching for the muscle pain which I have all been doing. And I had already prior to all of this happening taken supplements everyday (vitamin C and E, 40 billion probiotics) and had been eating healthy as I have lost 10 lbs in just the short amount of time I have had to exercise.



I went to the doctor again after the ER incident about 3 days later as a follow up and although I have not had AS severe abdominal pains that I was still feeling the sharp pains and was still questionable if I had injured my coccyx and also concerned about the lump and midline holes. The doctor did not see a pilo cyst and did not “see” a “mass” I had to point it out but it is SO obvious I mean Cmon! He issued an X-ray (for my tailbone) and it came back clear no signs of fracture or degeneration. But when I had to lay down on my back for the X-ray which was a semi hard surface I was nearly squeezing my buttocks instead of relaxing due to feeling the lump pressing on my tailbone or spine area. Later that evening going to lay down I had achy arms and legs as if they were heavy and couldn’t move and excruciating back pain which I believe was due to laying down for X-ray. I saw the doctor AGAIN a couple days later, still same symptoms, abdominal pains, bladder pressure, back pain, spasms, and I told him about the back pain I experienced during/after X-ray and that I believe my back pain is caused by the lump. He examed it again after he stated again he did not see one last time (LOL) and I pointed it out with my finger (LOL) as he pressed on it AND measured (3.5/1) he then stated he thinks it could be a pilo that hasn’t ruptured. And issued a CT scan for abdominal pains and ultrasound for cyst which I am due for one in 2 days. I honestly believe that my CT scan will come back clear as everything else did and honestly believe that I have a pilo, what else would cause the midline holes? Haven’t found anything else that could. Is anyone else experiencing this. I am praying it all goes away, my fiancé seems to be too optimistic, not really making me feel better though. On day one of taking antibiotics before sleep my back felt like it was on FIRE, super hot, heated. Is this normal? Maybe my body fighting the infection?? I also can’t sleep/sit or lay on my sides comfortably and believe my body is waking me up due to the pains. Please help. I am doing all that I can, but have heard surgery can re occur. I have never had any surgery in my life before never broken anything or sprained anything or fractured anything. I just am desperate for answers, is this cyst the cause of all my symptoms because none of this happened until I had the back pain. Also it has been about 2 weeks since urgent care visit. I have been to urgent care, ER, and two doctors visits since then because I need help and need answers. The doctors also did not prescribe any pain meds and I honestly didn’t even think about asking for any even though I say I’m in severe pain at times especially when lying down. Sitting and driving is also uncomfortable, the “coccyx cushion” is even painful to my legs maybe I’m sensitive I don’t know. I do not wear tight clothing either unless yoga pants are considered tight but I really don’t think so. Help.

Sounds like a tough few weeks for you, CC123. Sorry to hear about what you're going through.

Some of those symptoms (the lower back pain, positions you're comfortable in, holes, lump) sound like classic pilonidal. I'd strongly recommend finding someone who is VERY experienced in pilonidal. Do some research on these boards to find folks who get universal praise (a few examples are Immerman, Bascom, Sternberg, Rosengart). Just the fact it took your doc that long to recognize it tells me this isn't there expertise.

Not sure about the other symptoms. I can tell you from experience pilonidal can take a mental toll, which can cause some of what you're describing. It's tough, but remember you aren't alone. There's a whole community here that can support you and wonderful resources and advice to help you along the way.

Good luck, and keep us updated.
 

CC123

New Member
Sounds like a tough few weeks for you, CC123. Sorry to hear about what you're going through.

Some of those symptoms (the lower back pain, positions you're comfortable in, holes, lump) sound like classic pilonidal. I'd strongly recommend finding someone who is VERY experienced in pilonidal. Do some research on these boards to find folks who get universal praise (a few examples are Immerman, Bascom, Sternberg, Rosengart). Just the fact it took your doc that long to recognize it tells me this isn't there expertise.

Not sure about the other symptoms. I can tell you from experience pilonidal can take a mental toll, which can cause some of what you're describing. It's tough, but remember you aren't alone. There's a whole community here that can support you and wonderful resources and advice to help you along the way.

Good luck, and keep us updated.


Thank you for your advice and yes it has taken a toll emotionally but I try to stay as positive as possible. After my ultra sound/CT scan tomorrow (not that I think I need it anymore), I am looking into an expert opinion and my option would be Sternberg as it is only 45 minutes from me. Thank God! I am just super nervous and quite afraid actually of anyone prodding down there that may cause more pain or harm or even to have surgery. This sucks big time & I really would not wish this upon anyone not even my worst enemy (I don’t have any actually :) but just saying). I will update when I can. thank you.
 

Mcm222

Helpful
Thank you for your advice and yes it has taken a toll emotionally but I try to stay as positive as possible. After my ultra sound/CT scan tomorrow (not that I think I need it anymore), I am looking into an expert opinion and my option would be Sternberg as it is only 45 minutes from me. Thank God! I am just super nervous and quite afraid actually of anyone prodding down there that may cause more pain or harm or even to have surgery. This sucks big time & I really would not wish this upon anyone not even my worst enemy (I don’t have any actually :) but just saying). I will update when I can. thank you.

That's awesome that you live so close. A lot of people here sing his praises.

I've heard mixed things from docs about whether scans can accurately detect pilo but they may at least be useful for ruling additional maladies out. Good luck!
 
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