Wow...it is hard to put in to words how much I enjoyed my latest trek to the ER for endo...**please read the prior sentence with the strongest sarcastic tone possible! Not only did the Urgent Care doctor send me there with scary diagnoses in my mind, and have to wait over three hours to get a bed, but also got a roommate who had cut and severed some tendon in his hand and broken something, so I got to hear him having it reduced and put back together. I also had a very unpleasant nurse. Wow she has a bad attitude! Goodness.
So, I have missed work all week long and aside from moving from the bed back and forth to and from the couch, I have done NOTHING. I feel more awful than I ever have. I have a lot of pain, nausea, vomiting, hot flashes/cold flashes and a very weird restless/shaky/anxious feeling.
Tomorrow I'm going down to meet my PCP, whom I very much respect, and will be applying for a Disability leave of absence from work. I will be taking the train down to Pomona where I left my car FRIDAY!! So hopefully my car is there and hopefully it is an easy day on the Metro...
Hopefully I will be able to write more sooner rather than later...
Sending healing hugs to my Endo Sisters out there!!!
Wednesday, June 15, 2011
Thursday, June 2, 2011
A New Day in Endo
Well, I have been unable to do much the past few days because my endo symptoms (mainly agonizing pain and nausea)... Let me start at the beginning of my endo experience:
When I was 14 I started having problems with my period. I would have incredibly painful cramps, vomiting and bad nausea, but not every month. It started off only being sporadic. To the point that my dad would have to take me to the emergency room. Each time I went there they would give me a shot for pain and nausea and show us the door. Of course that was after they would tell me that my period couldn't be related to my nausea and vomiting (ummmmm, ok?).
I just assummed that everyone must suffer like this and didn't know any better. For years it continues on like that and I would have to miss work and/or school entirely, or I'd have to leave early. People would frequently make comments about how it was an excuse to get out of whatever activity I was missing. I started wondering if I was just a wimp, or what because I didn't know anybody else going through this.
About 5 years ago it got really bad, it was no longer sporadic and it was unexplicably worse every other month. The cramps would be debilitating, to the point where I had no other choice but to stay in bed with the heating pad and the cat in the fetal position crying.
A little over 2 years ago now I started bleeding daily. Went to my Primary Care Physician to find out what could be wrong. He said I needed to have a GI work up. Now before I was able to get in for that (because apparently trying to get into a GI specialist takes months) I ended up at the Emergency Room at Holy Cross Hospital. I was literally green with nausea, and had such a distended belly that I looked a few months pregnant. I was curled up with cramps on the couch at my parent's house (they were up in Big Bear). I had my friend come over and she insisted on taking me to the ER. I said, oh no I might be better tomorrow...so we waited and of course I wasn't better so off to ER we went, I was nauseated, shivering, cramping, bleeding, crying, and covered in blankets-- quite a sight I'm sure!
This is what my bloating looks like!:
They gave me pain meds, nausea shots, and since I had an appointment with GI already let me go. Of course that was not before doing a rectal exam which is just all kinds of fun. They ask how you're feeling before they discharge, after they get you high on morphine and nausea meds-- who doesn't feel fabulous?! Of course you feel better, but its because of the drug high, not because anything has been treated and/or addressed.
I was in and out of the emergency room several times between this point and my GI appointment. When I finally go in to see him, he said I needed to have a Colonoscopy and and Endoscopy done, so we scheduled ASAP, which in the medical arena really means months out. Nothing to do between then and my appointment but wait and be sick... Finally had my Colonoscopy, which could be a post all by itself, and he said he took a bunch of tissues and samples to be biopsed. Another 2 weeks to wait on the biopsy results... My mom and I went to my Biopsy appointment...I was soooo nervous. He came in and said that everything had turned out alright on my tests. I asked him what the problem was and he said, I think you wipe too hard. I thought he must have been making a stomach doctor joke or something, and laughed a little, and said, No, seriously, what do I do now? He replied, Increase your fiber and don't wipe as hard. With that he was out of the room as quickly as he came in. Now, obviously I was relieved to hear I didn't have the big C, but even more frustrated to have nothing further.
The next day I switched medical groups and doctors, feeling absolutely disgusted with the medical profession, pretty much across the board. I chose Dr. Namvari out of Health Care Partners Monrovia, just by chance out of our provider directory. When I called to get an appointment, they actually got me in ASAP, as in the next day! I was nervous...But Dr. Namvari didn't disappoint. I explained to her everything I had been to, and she did her own exam which included a palpation of my abdomen, she went just a little lower than had anyone else, and I nearly flew off the table because it hurt so bad. She said, WOW, maybe you have something call Endometriosis--I never thought I'd be able to remember the name and had her say it again so I could write it down. She sent me for an OB/GYN and GI work-up. She just wanted someone else to look at my GI results because she said my test reports looked strange. The GI doctor couldn't believe how over-tested I was for a 26 y/o female, and that he was disappointed that a previous doctor hadn't thought to check out female problems before sending me to have a Colonoscopy done. He said to come back only if the OB route turned out to show nothing.
The first OB/GYN I went to said that my only option was to go into Menopause by having injections that simulated Menopause to stop my period. At that point I had only done limited research, because at that point I still trusted doctors overall, but I was terrified of that so I switched to a different doctor. The OB/GYN #2 gave me a lot of time. She explained the Menopause shots, called Lupron, and bascially said the same thing, that they were my only option. I said, I would need to think about it. The next week I was in bed again in agony, and called her back and said YES to the shots. She said that while the shots sometimes produced uncomfortable side effects that they wouldn't be too bad.
Lupron: My first night on Lupron, not only did I have crazy intense hot flashes, mood swings, and food cravings, but insomnia accompanied with strange hot flashes which made the palms of my hands feel as though I could shoot lightning through them they were so hot! However, the shots did take away my period. When I went in for shot #2 I told her I was feeling much better... It was after shot #2 that another decline began. My moods were constantly changing, I was unable to sleep, I couldn't stop myself from eating, still had bad nausea, lost the ability to find words while speaking, hot flashes that I can't even describe, and bloating that made me both unable to wear my normal size pants and also made me look incredibly pregnant. When I went for my next appointment I told her of my side effects and she told me to stop drinking Dr. Pepper, and that I couldn't be having those side effects. I then got a 3-month shot, so I wouldn't have to go back monthly and she told me that I was never going to feel better than I was feeling and that she would NOT do the surgery. I started crying, wondering why a doctor would even become a doctor if they had no desire to help someone who obviously didn't feel well...and I told her she would no longer have to worry about me and I stormed out of her office.
I was talking to a friend of mine who is a nurse at Cedars Sinai in Beverly Hills and called to get a referral to an OB/GYN who specialized in Endo. I was referred to Dr. Brock. At this point I just wanted to have the surgery, as I was so over trying medications which did nothing but seem to exacerbate my symptoms and give me a myriad of uncomfortable side effects. I was very anxious about this appointment. When I met the doctor, he actually listened to what I was saying, took me in for an exam and in minutes had me laughing and relaxed. After the exam he took my hand and said, I just want to make you better. I started crying, its the first time someone in the medical profession had said such a thing! Also ironically he was the first doctor to do a pelvic exam, strange! He said he would need to schedule surgery! So we scheduled a Laparoscopy.
I felt such relief--the only thing that bothered me was that he said he wasn't entirely convinced that I had Endo. I successfully pushed that thought out of my mind and focused on being elated for surgery and the possibility of feeling so much better.
It was a good thing I had the surgery scheduled because I actualy got in trouble at work for being absent. It was an awful experience to actually be written up for that! At least I was comforted slightly by the fact that my supervisor had seen me ill and knew I wasn't faking it!
When surgery came I was sooooo super nervous. My mom and I stayed at a nearby hotel the night before so we wouldn't have to do the drive at the crack of dawn. We also went to Beni Hana for a delicious dinner and yummmmmmy margarita...
Here is a pic of my mom and I at dinner :)
Surgery came and went easily. When I woke up I was told that he did in fact find endometriosis and had done a laparoscopy as he planned, along with a hysteroscopy and a uterine ablation to get rid of the Endo.
This is the bruising I was left with after surgery... Luckily the scarring is minimal.
Unfortunately I let myself get prematurely excited thinking this could be the beginning of the end, NOT the beginning of another beginning.
Here is my love, Tink, snuggling with his mommy right after surgery!!! Such a good nurse!
I healed from surgery, had my post-op and he said I was healing fine.
Ever so slight and slowly my symptoms began to return, each and every one of them...
My Doctor (Dr. Namvari) has me on several medications and I am currently waiting to get a referral to yet another OB/GYN.
After a really bad weekend of being sick on the couch most of the time I am finally on a combination of medications that makes the waking hours somewhat tolerable, not to mention that I have actually SLEPT. . . So hopefully some relief is somewhere near!
I didn't realize this post would be so long, but I guess it takes a lot to explain everything! I think it is so important for us with Endo to share our stories because it is so taboo and really shouldn't be. When I first started having these issues I really struggled talking about it because it IS uncomfortable, but I think this is definitely a necessary step in the beginning of an awakened awareness about Endo.
Hugs to all of my endo sisters out there!! And a great big THANK YOU to all of you who took the considerable time to read this posting and participating in the beginning (hopefully) of an Endo Revolution!
When I was 14 I started having problems with my period. I would have incredibly painful cramps, vomiting and bad nausea, but not every month. It started off only being sporadic. To the point that my dad would have to take me to the emergency room. Each time I went there they would give me a shot for pain and nausea and show us the door. Of course that was after they would tell me that my period couldn't be related to my nausea and vomiting (ummmmm, ok?).
I just assummed that everyone must suffer like this and didn't know any better. For years it continues on like that and I would have to miss work and/or school entirely, or I'd have to leave early. People would frequently make comments about how it was an excuse to get out of whatever activity I was missing. I started wondering if I was just a wimp, or what because I didn't know anybody else going through this.
About 5 years ago it got really bad, it was no longer sporadic and it was unexplicably worse every other month. The cramps would be debilitating, to the point where I had no other choice but to stay in bed with the heating pad and the cat in the fetal position crying.
A little over 2 years ago now I started bleeding daily. Went to my Primary Care Physician to find out what could be wrong. He said I needed to have a GI work up. Now before I was able to get in for that (because apparently trying to get into a GI specialist takes months) I ended up at the Emergency Room at Holy Cross Hospital. I was literally green with nausea, and had such a distended belly that I looked a few months pregnant. I was curled up with cramps on the couch at my parent's house (they were up in Big Bear). I had my friend come over and she insisted on taking me to the ER. I said, oh no I might be better tomorrow...so we waited and of course I wasn't better so off to ER we went, I was nauseated, shivering, cramping, bleeding, crying, and covered in blankets-- quite a sight I'm sure!
This is what my bloating looks like!:
They gave me pain meds, nausea shots, and since I had an appointment with GI already let me go. Of course that was not before doing a rectal exam which is just all kinds of fun. They ask how you're feeling before they discharge, after they get you high on morphine and nausea meds-- who doesn't feel fabulous?! Of course you feel better, but its because of the drug high, not because anything has been treated and/or addressed.
I was in and out of the emergency room several times between this point and my GI appointment. When I finally go in to see him, he said I needed to have a Colonoscopy and and Endoscopy done, so we scheduled ASAP, which in the medical arena really means months out. Nothing to do between then and my appointment but wait and be sick... Finally had my Colonoscopy, which could be a post all by itself, and he said he took a bunch of tissues and samples to be biopsed. Another 2 weeks to wait on the biopsy results... My mom and I went to my Biopsy appointment...I was soooo nervous. He came in and said that everything had turned out alright on my tests. I asked him what the problem was and he said, I think you wipe too hard. I thought he must have been making a stomach doctor joke or something, and laughed a little, and said, No, seriously, what do I do now? He replied, Increase your fiber and don't wipe as hard. With that he was out of the room as quickly as he came in. Now, obviously I was relieved to hear I didn't have the big C, but even more frustrated to have nothing further.
The next day I switched medical groups and doctors, feeling absolutely disgusted with the medical profession, pretty much across the board. I chose Dr. Namvari out of Health Care Partners Monrovia, just by chance out of our provider directory. When I called to get an appointment, they actually got me in ASAP, as in the next day! I was nervous...But Dr. Namvari didn't disappoint. I explained to her everything I had been to, and she did her own exam which included a palpation of my abdomen, she went just a little lower than had anyone else, and I nearly flew off the table because it hurt so bad. She said, WOW, maybe you have something call Endometriosis--I never thought I'd be able to remember the name and had her say it again so I could write it down. She sent me for an OB/GYN and GI work-up. She just wanted someone else to look at my GI results because she said my test reports looked strange. The GI doctor couldn't believe how over-tested I was for a 26 y/o female, and that he was disappointed that a previous doctor hadn't thought to check out female problems before sending me to have a Colonoscopy done. He said to come back only if the OB route turned out to show nothing.
The first OB/GYN I went to said that my only option was to go into Menopause by having injections that simulated Menopause to stop my period. At that point I had only done limited research, because at that point I still trusted doctors overall, but I was terrified of that so I switched to a different doctor. The OB/GYN #2 gave me a lot of time. She explained the Menopause shots, called Lupron, and bascially said the same thing, that they were my only option. I said, I would need to think about it. The next week I was in bed again in agony, and called her back and said YES to the shots. She said that while the shots sometimes produced uncomfortable side effects that they wouldn't be too bad.
Lupron: My first night on Lupron, not only did I have crazy intense hot flashes, mood swings, and food cravings, but insomnia accompanied with strange hot flashes which made the palms of my hands feel as though I could shoot lightning through them they were so hot! However, the shots did take away my period. When I went in for shot #2 I told her I was feeling much better... It was after shot #2 that another decline began. My moods were constantly changing, I was unable to sleep, I couldn't stop myself from eating, still had bad nausea, lost the ability to find words while speaking, hot flashes that I can't even describe, and bloating that made me both unable to wear my normal size pants and also made me look incredibly pregnant. When I went for my next appointment I told her of my side effects and she told me to stop drinking Dr. Pepper, and that I couldn't be having those side effects. I then got a 3-month shot, so I wouldn't have to go back monthly and she told me that I was never going to feel better than I was feeling and that she would NOT do the surgery. I started crying, wondering why a doctor would even become a doctor if they had no desire to help someone who obviously didn't feel well...and I told her she would no longer have to worry about me and I stormed out of her office.
I was talking to a friend of mine who is a nurse at Cedars Sinai in Beverly Hills and called to get a referral to an OB/GYN who specialized in Endo. I was referred to Dr. Brock. At this point I just wanted to have the surgery, as I was so over trying medications which did nothing but seem to exacerbate my symptoms and give me a myriad of uncomfortable side effects. I was very anxious about this appointment. When I met the doctor, he actually listened to what I was saying, took me in for an exam and in minutes had me laughing and relaxed. After the exam he took my hand and said, I just want to make you better. I started crying, its the first time someone in the medical profession had said such a thing! Also ironically he was the first doctor to do a pelvic exam, strange! He said he would need to schedule surgery! So we scheduled a Laparoscopy.
I felt such relief--the only thing that bothered me was that he said he wasn't entirely convinced that I had Endo. I successfully pushed that thought out of my mind and focused on being elated for surgery and the possibility of feeling so much better.
It was a good thing I had the surgery scheduled because I actualy got in trouble at work for being absent. It was an awful experience to actually be written up for that! At least I was comforted slightly by the fact that my supervisor had seen me ill and knew I wasn't faking it!
When surgery came I was sooooo super nervous. My mom and I stayed at a nearby hotel the night before so we wouldn't have to do the drive at the crack of dawn. We also went to Beni Hana for a delicious dinner and yummmmmmy margarita...
Here is a pic of my mom and I at dinner :)
Surgery came and went easily. When I woke up I was told that he did in fact find endometriosis and had done a laparoscopy as he planned, along with a hysteroscopy and a uterine ablation to get rid of the Endo.
This is the bruising I was left with after surgery... Luckily the scarring is minimal.
Unfortunately I let myself get prematurely excited thinking this could be the beginning of the end, NOT the beginning of another beginning.
Here is my love, Tink, snuggling with his mommy right after surgery!!! Such a good nurse!
I healed from surgery, had my post-op and he said I was healing fine.
Ever so slight and slowly my symptoms began to return, each and every one of them...
My Doctor (Dr. Namvari) has me on several medications and I am currently waiting to get a referral to yet another OB/GYN.
After a really bad weekend of being sick on the couch most of the time I am finally on a combination of medications that makes the waking hours somewhat tolerable, not to mention that I have actually SLEPT. . . So hopefully some relief is somewhere near!
I didn't realize this post would be so long, but I guess it takes a lot to explain everything! I think it is so important for us with Endo to share our stories because it is so taboo and really shouldn't be. When I first started having these issues I really struggled talking about it because it IS uncomfortable, but I think this is definitely a necessary step in the beginning of an awakened awareness about Endo.
Hugs to all of my endo sisters out there!! And a great big THANK YOU to all of you who took the considerable time to read this posting and participating in the beginning (hopefully) of an Endo Revolution!
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