I saw the surgeon for my post-op appointment last Tuesday. It feels like I've been out of commission forever!
My pathology report indicates that I had an endometrial growth under my abdominal muscle on top of the fascia. The surgeon was able to remove the growth by stretching and manipulating the muscle fibers rather than removing the muscle (a HUGE blessing!!), she then attached a piece of mesh to the area where the endometrioma was in order to prevent a possible hernia. The muscle will eventually grow INTO the mesh, strengthening the weakened area. My belly is almost back to normal, a very welcome change from my post-op look of being somewhere in mid-pregnancy. It's been a more difficult recovery than my gall bladder surgery. I have periodic episodes of excruciating, breath-stealing pain that the doc attributes to muscles pulling and fighting the mesh and each other; apparently mesh has no "give", so anytime I strain or get too full the muscles flex and pull causing the mesh to fight back--the mesh, in all of its stability, wins. It's probably the most painful feeling I've ever experienced, similar in nature to pregnancy contractions, but at times more intense and located just below my ribs making it nearly impossible for me to breathe. Pain, pain, go away....and never come back!
I am restricted to lifting ten pounds and under; limited bending and stretching; no exercising (arrrgghh!); and no sitting up from a supine position, instead log rolling to the side before sitting up.
All is well; however, I am a terrible patient and have been tempted to cheat by getting in a very light workout of some sort (realizing I will only be cheating myself). This not working out business is for the birds. I really bugged the doctor for an okay to work out prior to my six week minimum recovery time and she said when she sees me on the 12th she MAY allow me to start running :)........but NO lifting weights or doing core work until the last week in July. Instead, I take a walk around the neighborhood and I'm quickly reminded by discomfort, that I am STILL healing. Now, I am even more determined to run the half marathon this October!!
Thursday, June 30, 2011
Friday, June 10, 2011
If you like details...
I have had mystery pain up and to the right of my umbilicus since August of 2009 when it became so severe that I went to the ER. I had an ultrasound, and a CT scan that revealed nothing but a bit of fluid in my abdominal cavity and a small liver hemangioma (These are harmless and very common, most people just don't know they have them.) My pain was chalked up to a "possible ruptured ovarian cyst", and I was sent home. Pretty odd since my pain wasn't "pelvic" in nature.
November 2009, after this nonsensical diagnosis from the ER my ob/gyn did an ultrasound of my ovaries which showed several small cysts. Not uncommon, especially mid cycle when one would expect cysts on ovaries, after all that's what ovulation is. I ask her if my pain could be endometriosis but she said not likely because my pain is in my abdomen.
In March 2010 I visited a new primary care physician and was told that my pain might be related to my period so he wanted to put me on low dose birth control pills to try it out. Three months later, no notable change so I quit taking them.
At some point in the fall I went for my yearly exam at the ob/gyn. I explain that I'm still having this pain and it seems like it's related to my period. Could it be endometriosis? No, she explains that endo pain would be in my pelvis, not my abdomen.
October 2010 I had an appointment with the NP related to horrible pain. She suspected that it could be my gall bladder and scheduled me for a Hida Scan at the beginning of November. I asked her if she thought it could be endo, because it usually comes with my periods, she also says no.
November 6 my pain was so unbearable; instinctively I thought something was terribly wrong, but all of these dead-end diagnoses made me question myself. Who wants to look foolish heading to the ER for the same thing as last year, only to be sent home with "nothing wrong" (Especially a nursing student, gasp!! You know how they get a little hypochondriacal.) My sister-in-law convinced me, actually forced me to go to the ER to get checked out. I was poked and pushed on by several nurses and doctors and it was determined that I should get an ultrasound. Before the ultrasound I was asked if I wanted any Morphine, but I declined. When it comes to me personally, I prefer to treat the problems not the symptoms. The ultrasound was unbelievably painful!! I was crying and screaming as if I had never experienced pain before. The tech was pressing down on the area of pain so hard "to get a gooooood pictuuuuure", that I seriously had to refrain from smacking her. She said I had a lot of stool in my colon (may be TMI, but hey, we're all full of it at some time or another) and was trying to see if I had gall stones. Morphine please!! I received two doses of that when I returned to my room, but I'm not sure that it helped all that much to be honest.
The doctor told me that the ultrasound was good, no stones, no inflammation. She thought that my pain was too severe to send me home so decided to keep me for observation, and have a Hida Scan done in the morning. (Ironic, since I was scheduled for one on November 11.) I asked her if my pain could be caused by endometriosis (because I had just had my period and the pain was at it's worst) but she said it was too high in my abdomen. (See the pattern here??)
My pain resolved itself somewhat over night (or was it the Morphine?), though Michael and I didn't sleep much. I was wheeled downstairs to have the Hida Scan. I was injected with radioactive dye that would light up my gall bladder nice and pretty. I had to lay perfectly still while a camera took pictures of my gall bladder emptying. I think it took about an hour. (Why is it that when you have to be still your nose itches, hair is parted wrong and feels funny, throat is scratchy, arms are tingly, hospital gown is pulling, etc.?) I was watching the pictures and from what it looked like my gall bladder stayed neon the whole time, which meant bile wasn't emptying. My suspicions were right. The surgeon came to my room about 30 minutes after my test to tell me that I had "biliary dyskinesia" and that my pain would "never go away, only get worse", unless I had my gall bladder removed. So THAT'S what's been causing me all of this grief for a year?! Yes, take it out!!
Sparing all of the details from the surgery and the awful recovery (yes, I said "awful" even though one "isn't supposed to experience such a bad recovery from just having one's gall bladder removed", according to the nurses in the recovery room who didn't think I could hear them because I was just waking up from surgery), and that my gall bladder was attached to my colon, I was relieved that I would finally get back on my feet again and back to normal...
About one week post-op I went to see the surgeon and he said everything was healing nicely. I asked him how on earth I ended up with this gall bladder problem (Other than being female, I don't fit the stereotype for gall bladder problems) and he said "bad luck". Nice. I asked him if the adhesions could be endometriosis and he said no. Not to mention, "endometriosis is contained in the pelvis".
Two weeks post-op I began experiencing horrible pain again. The same pain that I had experienced since August 2009. I went to see the NP at my family physician's and she was convinced that I must be constipated and told me to take Milk of Magnesia for a few days to see how I felt. The pain ended up going away, so I figured her advice must have worked.
In February 2011 I went to see the NP at my ob/gyn to complain of the same pain. I told her that I have endometriosis and that's what must be causing my pain. She brushed it off with a side-to-side head nod in agreement and said there wasn't much to do but take birth control pills. Not an option for me.
Suddenly sometime in March, during one of my flare up's, I was pushing on my belly and I felt a hard lump. It stopped me dead in my tracks. I had Alexa come over to me and asked her to push really hard on my belly and tell me if she felt anything. "Yes. I feel a hard lump." The minute Michael got home I had him do the same. "Yes, honey, I can feel something hard." So....
Beginning of April I made an appointment to see my primary care doctor because the pain had not gone away and now I feel a hard lump. (I had been experiencing bouts of this horrible pain, that affected every aspect of my life for about a week and a half at a time since August 2009. It was progressively getting worse. I couldn't work out, do house work, stand up straight, lay down comfortably, I was miserable. On top of that, it happened during my periods which already caused enough bloating and cramping for one woman to have to deal with!) He felt the lump and referred me to one of the top surgeons in the area to see what his opinion was.
Well, this said amazing surgeon told me that he felt nothing, and he thought I was having "post-cholecystectomy syndrome". A fancy way of saying that when one has their gall bladder removed it isn't unusual to experience similar symptoms as before the surgery.....this usually lasts about six weeks, my surgery was five months ago. He checks me for a hernia. Nope. I asked him if it could be endometriosis (because I have a history) and he said no, endometriosis is in the pelvis, not the abdomen. So he sends me on my way suggesting that my doctor checks my liver function tests again... Hmm??
Three weeks later I decide to see my ob/gyn. I explain everything to her that has been happening for the past 18 months and when I told her my gall bladder and colon were attached she was convinced this was a case of endometrial adhesions. She, then refers me to see another top rated surgeon in the area. I obtained my pathology and operative reports from the surgery to take to the new surgeon.
I see the new surgeon the fourth week in May. My reports from my surgery do not indicate endometrial adhesions, I'm surprised. This was "a very common type of biliary dyskinesia, not unusual that it was attached by scar tissue to the colon". As a matter of fact, a lot of people with the condition live with it unknowingly without any symptoms and don't generally have their gall bladders removed. She also said that 80% of patients who have their gall bladders removed related to biliary dyskinesia don't have relief from symptoms. Nice. I had my gall bladder removed to cure the pain, and not only is this often unnecessary, but it wasn't my problem.
She wants me to get an ultrasound, because she thinks it's an endometrioma. I set up an appointment, and as the doctor instructed, I'm certain to tell the ultrasound techs to get a "superficial view of the abdomen", not an internal view of my organs. As the techs push down on my painful belly I asked them if they could actually see something, "Oh yeah, we see something." I had an immense sense of relief that something was actually there, now maybe we could get to the bottom of this. Most people wouldn't be happy to find a growth in their body through an ultrasound, however after all this time with pain, and no diagnosis, I welcomed it.
I schedule an appointment to see the surgeon, to review my ultrasound report, for the next week.
Oh happy day: The surgeon tells me that I have a 3 x 3 cm growth IN my rectus abdominus muscle. The report suggests it could be one of three things:
1. a hemangioma caused by my surgery (surgeon says doubtful, the radiologist didn't know that my surgery was about eight months ago)
2. fibrous tissue (surgeon says also doubtful given that these are usually caused by surgical scars and my lump isn't located at that site)
3. "given the patients history an endometrial mass cannot be ruled out" . The surgeon believes that with my history, and because my pain is consistent with my menstrual cycle, that I do have an endometrioma growing in my muscle.
(This explains so much! For the past three weeks, though I'm an avid runner, I have not been able to run for more than ten minutes at a time because the pain in my abdomen is so excruciating I am forced to stop and put firm pressure on it to stop the pain. Prior to this, it was only during my period that I had pain with exercise.)
The surgeon tells me that this needs to come out and that she would like to do the surgery when my pain is at it's worst--during my period (this sounds so enticing, doesn't it?) in order to see the tissue better because it will be active and inflamed (just like uterine tissue during menses). She mentioned that she has removed several of these growths before, but most of them occur in c-section scars. She assures me that once removed, her patients become asymptomatic and that the endometrioma doesn't return. She also tells me that while she can't say for certain at this point that it IS an endometrioma, she will have a much better idea when she sees it, and then once the pathology report is concluded we will know for sure. I will have a wide excision of the growth. She will remove the 3 x 3 section of "bad tissue" along with the muscle it has invaded, and a slight margin around it to be sure no endometrial cells remain causing a future new growth. This section will be replaced with a mesh screen to provide support until the muscle regenerates. I will have to wear a compression dressing for three days and an abdominal compression until I am healed. (About 4-6 weeks) No bending, lifting, exercising, straining. (This oughta be a fun summer!) I have the surgery tentatively scheduled for Monday. In the event that my body isn't "cycling" then, I will have it Thursday.
In defense of the doctors and nurses, since researching this "rectus abdominus endometrioma", I have taken note that it is a very rare growth. It does not always coincide with a diagnosis of "pelvic endometriosis", but that in most cases it grows as a result of uterine tissue being transplanted at an incisional site via surgical instruments. So my history with endometriosis would not automatically make me a candidate for an endometrioma. Most women with endometriomas are past c-section patients (which I am not), or have had other abdominal surgeries like laparotomies, or appendectomies. The only prior surgery I had that would even be relative to this is a laparoscopy that I had in 2003; however, my growth is not at the incisional site of either of my past surgeries. An endometrioma at a location other than an incisional site, is even more rare.
I give this history not to bore you, but to paint a picture of a patient who has been alluding to a certain problem for two years, and to the "system" of doctors and nurses who have been brushing off my suggestions for that long and unable to help me cure my pain. In nursing school, we were taught that the patient knows their body better than anyone, listen to the patient.
I encourage anyone who is suffering with a chronic health problem to be persistent in getting answers.
(As my precious daughter likes to conclude her creative writing stories...)
Please stay tuned...
November 2009, after this nonsensical diagnosis from the ER my ob/gyn did an ultrasound of my ovaries which showed several small cysts. Not uncommon, especially mid cycle when one would expect cysts on ovaries, after all that's what ovulation is. I ask her if my pain could be endometriosis but she said not likely because my pain is in my abdomen.
In March 2010 I visited a new primary care physician and was told that my pain might be related to my period so he wanted to put me on low dose birth control pills to try it out. Three months later, no notable change so I quit taking them.
At some point in the fall I went for my yearly exam at the ob/gyn. I explain that I'm still having this pain and it seems like it's related to my period. Could it be endometriosis? No, she explains that endo pain would be in my pelvis, not my abdomen.
October 2010 I had an appointment with the NP related to horrible pain. She suspected that it could be my gall bladder and scheduled me for a Hida Scan at the beginning of November. I asked her if she thought it could be endo, because it usually comes with my periods, she also says no.
November 6 my pain was so unbearable; instinctively I thought something was terribly wrong, but all of these dead-end diagnoses made me question myself. Who wants to look foolish heading to the ER for the same thing as last year, only to be sent home with "nothing wrong" (Especially a nursing student, gasp!! You know how they get a little hypochondriacal.) My sister-in-law convinced me, actually forced me to go to the ER to get checked out. I was poked and pushed on by several nurses and doctors and it was determined that I should get an ultrasound. Before the ultrasound I was asked if I wanted any Morphine, but I declined. When it comes to me personally, I prefer to treat the problems not the symptoms. The ultrasound was unbelievably painful!! I was crying and screaming as if I had never experienced pain before. The tech was pressing down on the area of pain so hard "to get a gooooood pictuuuuure", that I seriously had to refrain from smacking her. She said I had a lot of stool in my colon (may be TMI, but hey, we're all full of it at some time or another) and was trying to see if I had gall stones. Morphine please!! I received two doses of that when I returned to my room, but I'm not sure that it helped all that much to be honest.
The doctor told me that the ultrasound was good, no stones, no inflammation. She thought that my pain was too severe to send me home so decided to keep me for observation, and have a Hida Scan done in the morning. (Ironic, since I was scheduled for one on November 11.) I asked her if my pain could be caused by endometriosis (because I had just had my period and the pain was at it's worst) but she said it was too high in my abdomen. (See the pattern here??)
My pain resolved itself somewhat over night (or was it the Morphine?), though Michael and I didn't sleep much. I was wheeled downstairs to have the Hida Scan. I was injected with radioactive dye that would light up my gall bladder nice and pretty. I had to lay perfectly still while a camera took pictures of my gall bladder emptying. I think it took about an hour. (Why is it that when you have to be still your nose itches, hair is parted wrong and feels funny, throat is scratchy, arms are tingly, hospital gown is pulling, etc.?) I was watching the pictures and from what it looked like my gall bladder stayed neon the whole time, which meant bile wasn't emptying. My suspicions were right. The surgeon came to my room about 30 minutes after my test to tell me that I had "biliary dyskinesia" and that my pain would "never go away, only get worse", unless I had my gall bladder removed. So THAT'S what's been causing me all of this grief for a year?! Yes, take it out!!
Sparing all of the details from the surgery and the awful recovery (yes, I said "awful" even though one "isn't supposed to experience such a bad recovery from just having one's gall bladder removed", according to the nurses in the recovery room who didn't think I could hear them because I was just waking up from surgery), and that my gall bladder was attached to my colon, I was relieved that I would finally get back on my feet again and back to normal...
About one week post-op I went to see the surgeon and he said everything was healing nicely. I asked him how on earth I ended up with this gall bladder problem (Other than being female, I don't fit the stereotype for gall bladder problems) and he said "bad luck". Nice. I asked him if the adhesions could be endometriosis and he said no. Not to mention, "endometriosis is contained in the pelvis".
Two weeks post-op I began experiencing horrible pain again. The same pain that I had experienced since August 2009. I went to see the NP at my family physician's and she was convinced that I must be constipated and told me to take Milk of Magnesia for a few days to see how I felt. The pain ended up going away, so I figured her advice must have worked.
In February 2011 I went to see the NP at my ob/gyn to complain of the same pain. I told her that I have endometriosis and that's what must be causing my pain. She brushed it off with a side-to-side head nod in agreement and said there wasn't much to do but take birth control pills. Not an option for me.
Suddenly sometime in March, during one of my flare up's, I was pushing on my belly and I felt a hard lump. It stopped me dead in my tracks. I had Alexa come over to me and asked her to push really hard on my belly and tell me if she felt anything. "Yes. I feel a hard lump." The minute Michael got home I had him do the same. "Yes, honey, I can feel something hard." So....
Beginning of April I made an appointment to see my primary care doctor because the pain had not gone away and now I feel a hard lump. (I had been experiencing bouts of this horrible pain, that affected every aspect of my life for about a week and a half at a time since August 2009. It was progressively getting worse. I couldn't work out, do house work, stand up straight, lay down comfortably, I was miserable. On top of that, it happened during my periods which already caused enough bloating and cramping for one woman to have to deal with!) He felt the lump and referred me to one of the top surgeons in the area to see what his opinion was.
Well, this said amazing surgeon told me that he felt nothing, and he thought I was having "post-cholecystectomy syndrome". A fancy way of saying that when one has their gall bladder removed it isn't unusual to experience similar symptoms as before the surgery.....this usually lasts about six weeks, my surgery was five months ago. He checks me for a hernia. Nope. I asked him if it could be endometriosis (because I have a history) and he said no, endometriosis is in the pelvis, not the abdomen. So he sends me on my way suggesting that my doctor checks my liver function tests again... Hmm??
Three weeks later I decide to see my ob/gyn. I explain everything to her that has been happening for the past 18 months and when I told her my gall bladder and colon were attached she was convinced this was a case of endometrial adhesions. She, then refers me to see another top rated surgeon in the area. I obtained my pathology and operative reports from the surgery to take to the new surgeon.
I see the new surgeon the fourth week in May. My reports from my surgery do not indicate endometrial adhesions, I'm surprised. This was "a very common type of biliary dyskinesia, not unusual that it was attached by scar tissue to the colon". As a matter of fact, a lot of people with the condition live with it unknowingly without any symptoms and don't generally have their gall bladders removed. She also said that 80% of patients who have their gall bladders removed related to biliary dyskinesia don't have relief from symptoms. Nice. I had my gall bladder removed to cure the pain, and not only is this often unnecessary, but it wasn't my problem.
She wants me to get an ultrasound, because she thinks it's an endometrioma. I set up an appointment, and as the doctor instructed, I'm certain to tell the ultrasound techs to get a "superficial view of the abdomen", not an internal view of my organs. As the techs push down on my painful belly I asked them if they could actually see something, "Oh yeah, we see something." I had an immense sense of relief that something was actually there, now maybe we could get to the bottom of this. Most people wouldn't be happy to find a growth in their body through an ultrasound, however after all this time with pain, and no diagnosis, I welcomed it.
I schedule an appointment to see the surgeon, to review my ultrasound report, for the next week.
Oh happy day: The surgeon tells me that I have a 3 x 3 cm growth IN my rectus abdominus muscle. The report suggests it could be one of three things:
1. a hemangioma caused by my surgery (surgeon says doubtful, the radiologist didn't know that my surgery was about eight months ago)
2. fibrous tissue (surgeon says also doubtful given that these are usually caused by surgical scars and my lump isn't located at that site)
3. "given the patients history an endometrial mass cannot be ruled out" . The surgeon believes that with my history, and because my pain is consistent with my menstrual cycle, that I do have an endometrioma growing in my muscle.
(This explains so much! For the past three weeks, though I'm an avid runner, I have not been able to run for more than ten minutes at a time because the pain in my abdomen is so excruciating I am forced to stop and put firm pressure on it to stop the pain. Prior to this, it was only during my period that I had pain with exercise.)
The surgeon tells me that this needs to come out and that she would like to do the surgery when my pain is at it's worst--during my period (this sounds so enticing, doesn't it?) in order to see the tissue better because it will be active and inflamed (just like uterine tissue during menses). She mentioned that she has removed several of these growths before, but most of them occur in c-section scars. She assures me that once removed, her patients become asymptomatic and that the endometrioma doesn't return. She also tells me that while she can't say for certain at this point that it IS an endometrioma, she will have a much better idea when she sees it, and then once the pathology report is concluded we will know for sure. I will have a wide excision of the growth. She will remove the 3 x 3 section of "bad tissue" along with the muscle it has invaded, and a slight margin around it to be sure no endometrial cells remain causing a future new growth. This section will be replaced with a mesh screen to provide support until the muscle regenerates. I will have to wear a compression dressing for three days and an abdominal compression until I am healed. (About 4-6 weeks) No bending, lifting, exercising, straining. (This oughta be a fun summer!) I have the surgery tentatively scheduled for Monday. In the event that my body isn't "cycling" then, I will have it Thursday.
In defense of the doctors and nurses, since researching this "rectus abdominus endometrioma", I have taken note that it is a very rare growth. It does not always coincide with a diagnosis of "pelvic endometriosis", but that in most cases it grows as a result of uterine tissue being transplanted at an incisional site via surgical instruments. So my history with endometriosis would not automatically make me a candidate for an endometrioma. Most women with endometriomas are past c-section patients (which I am not), or have had other abdominal surgeries like laparotomies, or appendectomies. The only prior surgery I had that would even be relative to this is a laparoscopy that I had in 2003; however, my growth is not at the incisional site of either of my past surgeries. An endometrioma at a location other than an incisional site, is even more rare.
I give this history not to bore you, but to paint a picture of a patient who has been alluding to a certain problem for two years, and to the "system" of doctors and nurses who have been brushing off my suggestions for that long and unable to help me cure my pain. In nursing school, we were taught that the patient knows their body better than anyone, listen to the patient.
I encourage anyone who is suffering with a chronic health problem to be persistent in getting answers.
(As my precious daughter likes to conclude her creative writing stories...)
Please stay tuned...
Monday, May 23, 2011
it's monday...
Today is a day for......
- a morning run
- an early afternoon trip to Meijer*
- *followed by Target (for better prices on laundry detergent and fabric softener) and of course while I'm there, just to be fair, a stop off at Starbucks for a tall decaf iced latte with an apple & nut Kind bar on the side--paid for with a gift card!)
- a later afternoon tackling of the "worst chore ever"--laundry, which will include (in order to make it more bearable) time on the patio with my book...*smile*
- an early evening with my family for dinner (black bean burritos with onions, cheese & salsa, sides of brown rice and steamed broccoli)
- an evening walk
- a later evening family cuddle time
- an even later evening bed time
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