Yikes! I can't believe I made the decision. And I can't go back because the husband already took off work and it would be a pain in the ass to go back and change it now.
So, laparoscopic excision surgery is scheduled for July 13 with my new doctor. I am SO nervous. I'm nervous that the doctor will either not find anything, and that's surgery number 3 for nothing, or he's going to find something horrible. It's one or the other.
Although I'm really confident in my doctor, I am only about 80% confident that he is going to find endometriosis. When I told him I was thinking about having a hysterectomy just to be done with all the pain so I can move on with my life, he said it was jumping the gun. But if I wake up from anesthesia and they say they found nothing, like last time, I will be devastated.
But, for now I am jumping that gun! Countdown til July 13! 25 more days...
Showing posts with label endometriosis. Show all posts
Showing posts with label endometriosis. Show all posts
Wednesday, June 17, 2009
Monday, June 8, 2009
Huh!?
This morning I got a call from my new doctor wondering if I had any questions or concerns left over from my appointment on Friday! My first thought was, WTF? A doctor is calling to see if he can be of service to me? And it's not a nurse, it's the actual doctor? This is too good to be true.
After I got over the initial shock, I did have a few questions. I asked him what happens if he gets in there and there's no endo. He said although it's highly unlikely based on the physical exam, he said we'll cross that bridge when we get to it. I said I feel like just having a hysterectomy and being done with it all, and he said that's jumping the gun, let's wait and see what we find and then we'll decide which route to take. I also said (again) how reluctant I am to have surgery, and he said (again) this would really be my first surgery since no other doctor treated me properly.
So that really made me feel even better about having gone to the appointment and is making the decision to have surgery a lot easier. Right now they are scheduling about 7 weeks out, so it won't be at least til the end of July.
After I got over the initial shock, I did have a few questions. I asked him what happens if he gets in there and there's no endo. He said although it's highly unlikely based on the physical exam, he said we'll cross that bridge when we get to it. I said I feel like just having a hysterectomy and being done with it all, and he said that's jumping the gun, let's wait and see what we find and then we'll decide which route to take. I also said (again) how reluctant I am to have surgery, and he said (again) this would really be my first surgery since no other doctor treated me properly.
So that really made me feel even better about having gone to the appointment and is making the decision to have surgery a lot easier. Right now they are scheduling about 7 weeks out, so it won't be at least til the end of July.
Tuesday, February 3, 2009
CEC
I spoke to Dr. Sinervo at the CEC on Monday. He said given the fact I had a negative lap the last time I had surgery for endo, it's possible I might have adenomyosis, or, the doctor who did my surgery last time was not skilled in all forms of endo, and the "inflammation" that he saw was in fact, endo. The only way to know for sure (as usual) is to do surgery. If it's endo, he'll cut it all out and I'll be pain free (except I forgot to ask him if after surgery he recommends BCP's, because if so that's a problem; they exacerbate my migraines). If it's adeno, I have to make the decision on whether or not I want to have my uterus removed, which opens up a whole other can of worms!
I guess I expected to feel differently after talking to him. He was definitely very nice, and I ultimately knew I would need surgery, but it's just so frustrating not even having a definitive diagnosis at this point. The nurse from their office has left me a few messages wanting to schedule surgery, and I'm procrastinating on calling her back because I don't really know what to say yet! I also started a new job a few months ago, and I can't take any time until April anyway, so I have a little time to think.
I guess I expected to feel differently after talking to him. He was definitely very nice, and I ultimately knew I would need surgery, but it's just so frustrating not even having a definitive diagnosis at this point. The nurse from their office has left me a few messages wanting to schedule surgery, and I'm procrastinating on calling her back because I don't really know what to say yet! I also started a new job a few months ago, and I can't take any time until April anyway, so I have a little time to think.
Monday, February 2, 2009
Surgical History
2001 Laparoscopy (Possibly ablation)
Diagnosis: Mild endometriosis, ovarian cyst
Symptom Relief: After 6 months of Lupron immediately following surgery, pain came back
2005 Laparoscopy (No method needed)
Diagnosis: No endometriosis found, only “inflammation”
Symptom Relief: None
2006 Laparoscopy (Excision of cyst)
Diagnosis: Removal of paratubal cyst
Symptom Relief: Pain from cyst was gone, no relief from endometriosis
Diagnosis: Mild endometriosis, ovarian cyst
Symptom Relief: After 6 months of Lupron immediately following surgery, pain came back
2005 Laparoscopy (No method needed)
Diagnosis: No endometriosis found, only “inflammation”
Symptom Relief: None
2006 Laparoscopy (Excision of cyst)
Diagnosis: Removal of paratubal cyst
Symptom Relief: Pain from cyst was gone, no relief from endometriosis
Big Busted History, Part 2
So anywho...
From 2006-2008, I was not on any kind of birth control. At one point, they suggested a presacral neurectomy, which I was told would sever the nerve causing the pain in my uterus. I decided against it. My cramps were getting increasingly worse, and I was also having new symptoms, such as bowel pain, nausea and fatigue. My cramps were also starting the week before my period, and then increasing in pain up until 3 days after my period started. I had one more laparoscopy in 2006 due to a ruptured ovarian cyst, unrelated to endometriosis.
In July 2008 my periods started arriving 7-10 days early, when I had always had a perfect 28 day cycle. As of right now, my periods come anywhere between 20-30 days.
In December 2008, I made an appointment with a reproductive endocrinologist. I had done years of Internet research on endometriosis, and he was supposed to be a specialist. The only suggestion he had for me at my appointment, which lasted about 10 minutes, was to go BACK on Lupron. For a third time! He said that if I went on it with an add-back therapy I would not experience bone loss. Although it is tempting to go back on Lupron and be pain free for 6 months, I also know I need to treat the disease, not the symptoms. He also said that because surgery has not helped me in the past, it would not make sense to do it again.
It is now February 2009, and I have been dealing with this pain for 15 years. I’ve seen 4 different doctors, and they all seemed to want to treat the symptoms, not the problem.
From 2006-2008, I was not on any kind of birth control. At one point, they suggested a presacral neurectomy, which I was told would sever the nerve causing the pain in my uterus. I decided against it. My cramps were getting increasingly worse, and I was also having new symptoms, such as bowel pain, nausea and fatigue. My cramps were also starting the week before my period, and then increasing in pain up until 3 days after my period started. I had one more laparoscopy in 2006 due to a ruptured ovarian cyst, unrelated to endometriosis.
In July 2008 my periods started arriving 7-10 days early, when I had always had a perfect 28 day cycle. As of right now, my periods come anywhere between 20-30 days.
In December 2008, I made an appointment with a reproductive endocrinologist. I had done years of Internet research on endometriosis, and he was supposed to be a specialist. The only suggestion he had for me at my appointment, which lasted about 10 minutes, was to go BACK on Lupron. For a third time! He said that if I went on it with an add-back therapy I would not experience bone loss. Although it is tempting to go back on Lupron and be pain free for 6 months, I also know I need to treat the disease, not the symptoms. He also said that because surgery has not helped me in the past, it would not make sense to do it again.
It is now February 2009, and I have been dealing with this pain for 15 years. I’ve seen 4 different doctors, and they all seemed to want to treat the symptoms, not the problem.
Big Busted History, Part 1
In 2000, I went to my ob/gyn complaining of severe menstrual cramps, which had begun at age 14. My doctor at the time insisted it was gastrointestinal issue. When I told her that I only experienced the pain on my period, she persisted that it was just IBS. A few months later, after being put on birth control pills, I went back to her and insisted something was wrong. My doctor finally “gave in” and said she would cut me open "if she had to" to determine if I had endometriosis. I found a new doctor!
In 2001, I started seeing another local ob/gyn. I told him about my painful periods, and he immediately said I had the classic signs of endometriosis. I had a laparoscopy and was diagnosed with minimal to mild endometriosis in my posterior cul de sac region. A right, paratubal cyst was also removed at that time. I believe the method he used was ablation; I do not believe he excised the endometriosis. After surgery, I went on a 6 month treatment of Lupron Depot, during which I have never felt better. I tolerated the minimal side effects extremely well. After that 6 month time period, my cramps resumed. Because Lupron is so damaging to bones, the doctor suggested I go on continuous birth control. I was put on Ortho Tri-Cyclen continuously, and had a little relief at first, and then the pain started coming back. I decided this was something I just had to deal with, and dealt with the pain for the next 3 years.
In August 2003, I started seeing a new doctor. At my first appointment, I told him about my pain, and how it was getting increasingly worse since my surgery. He decided rather than doing surgery, I go on Lupron Depot again, since I responded so well the first time. I also had a bone scan at this time and was diagnosed with Osteopoenia, but he still suggested Lupron. After another 6 months of being pain free, the pain immediately came back my first cycle off of Lupron.
In May 2005, he decided to do a laparoscopy (my second), since I had exhausted Lupron and birth control pills did not give me any relief. My pain had gotten so bad at that point, I was missing work at least once a month. After the surgery, the doctor told me he did not find any endometriosis. I asked him why I was in so much pain, and he seemed unconcerned, telling me it looked like endometriosis could start growing, because my pelvic region was inflamed. He said I should go on continuous birth control again, to stop the endometriosis from growing back. I was confused, but figured he knew what she was talking about. I then went on a continuous cycle of Yasmin birth control pills, and stopped after 3 months. The side effects of anxiety, depression and frequent spotting were too much.
To be continued...
In 2001, I started seeing another local ob/gyn. I told him about my painful periods, and he immediately said I had the classic signs of endometriosis. I had a laparoscopy and was diagnosed with minimal to mild endometriosis in my posterior cul de sac region. A right, paratubal cyst was also removed at that time. I believe the method he used was ablation; I do not believe he excised the endometriosis. After surgery, I went on a 6 month treatment of Lupron Depot, during which I have never felt better. I tolerated the minimal side effects extremely well. After that 6 month time period, my cramps resumed. Because Lupron is so damaging to bones, the doctor suggested I go on continuous birth control. I was put on Ortho Tri-Cyclen continuously, and had a little relief at first, and then the pain started coming back. I decided this was something I just had to deal with, and dealt with the pain for the next 3 years.
In August 2003, I started seeing a new doctor. At my first appointment, I told him about my pain, and how it was getting increasingly worse since my surgery. He decided rather than doing surgery, I go on Lupron Depot again, since I responded so well the first time. I also had a bone scan at this time and was diagnosed with Osteopoenia, but he still suggested Lupron. After another 6 months of being pain free, the pain immediately came back my first cycle off of Lupron.
In May 2005, he decided to do a laparoscopy (my second), since I had exhausted Lupron and birth control pills did not give me any relief. My pain had gotten so bad at that point, I was missing work at least once a month. After the surgery, the doctor told me he did not find any endometriosis. I asked him why I was in so much pain, and he seemed unconcerned, telling me it looked like endometriosis could start growing, because my pelvic region was inflamed. He said I should go on continuous birth control again, to stop the endometriosis from growing back. I was confused, but figured he knew what she was talking about. I then went on a continuous cycle of Yasmin birth control pills, and stopped after 3 months. The side effects of anxiety, depression and frequent spotting were too much.
To be continued...
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