So I've had ostepoenia for the past 5 years, since my last round of Lupron. It doesn't affect me, I feel fine. I had a DEXA scan the other day to see how my bones were doing, and since the last idiot doctor I saw for endo thinks I should go on Lupron a THIRD TIME. I'm obviously not doing that, but I thought since I had the script for the scan I may as well get it done and have the results sent to me, since by now I may as well be a freaking doctor. (Let me add that I was the youngest person in the waiting room by say, 30 years). Anywho, I was happy to see that everything stayed the same. My spine is fine, and my hips were in the 78% percentile for my age range, which isn't great, but I think with exercise and being more religious about taking my calcium, I can get that a little higher.
I'm a little concerned because my mom was just diagnosed with osteoporosis at age 52, so I definitely need to watch and be careful. Even though I've never felt better on it, there is no more Lupron in my future. Certainly is crazy though how doctors will dole that stuff (well, anything really) out like candy.
Friday, February 27, 2009
Tuesday, February 17, 2009
How Romantic...
You know what's romantic? GETTING YOUR PERIOD ON VALENTINE'S DAY. Not that I had any big plans, but seriously? So I spent all weekend in bed. I was in a lot more pain than last month's strangely pain free period, but it wasn't horrible. It was a week early, like it has been for awhile now, which sucks. I hope other people had a better weekend than I did!
Thursday, February 12, 2009
On hold, for now.
Well, barring any unforeseen circumstances, my plan to go to the CEC is on hold for now. I feel bad that I wasted their time, but I just don't feel right about it and I can't put my finger on it. The fact that I also had NO cramps last month (which brought me great fear and confusion, not joy like you would think) I think is clouding my judgement. It's been almost 60 days since I've been in horrible pain (Christmas Day to be exact, fun!), so it's almost in the back of my mind.
I think in the next few months my husband and I are going to make a decision about having kids. If we decide no, then I think that's when I'll make the decision to go to the CEC. If it's yes, then I need to think about how much fun being in pain with a baby will be, and how once I have said baby, I will be even more reluctant to travel 700 miles and pay out of pocket for surgery.
So, the saga continues.
I think in the next few months my husband and I are going to make a decision about having kids. If we decide no, then I think that's when I'll make the decision to go to the CEC. If it's yes, then I need to think about how much fun being in pain with a baby will be, and how once I have said baby, I will be even more reluctant to travel 700 miles and pay out of pocket for surgery.
So, the saga continues.
Thursday, February 5, 2009
Can't Decide
I can't decide what to do about going to the CEC for treatment. I spoke to Muriel from there today, and she seemed very anxious to schedule me, and I'm just not ready to make the decision. One major factor in all of this is money. I really need to get at least an estimate on the cost of the procedure, then figure out what I will ultimately be responsible for, plus the airfare and hotel, meals etc. I know my health is more important than money, my husband will be the first to say that, but for me personally it's something I need to know up front.
Also, she said since they do surgeries on Tuesdays, I'll be there for about 5 days, since I will spend one night in the hospital. I've never had to spend the night in the hospital after any of my laps, and how does this qualify as outpatient surgery if I will indeed be an inpatient? Looks like I'll be giving Muriel a call back.
Then there's the whole work issue, although I found out today that I am earning about 2 sick days per 2 months I am there, so if I can get about 6 days in the hopper before we go down, I might be good. My job is not physically demanding and they might even let me do some work from home once we would get back from Atlanta, so I wouldn't have to tap into my vacation days. Of course, this is all dependent on the fact I just have endo excised, and don't need (or want) a hysterectomy.
Also, she said since they do surgeries on Tuesdays, I'll be there for about 5 days, since I will spend one night in the hospital. I've never had to spend the night in the hospital after any of my laps, and how does this qualify as outpatient surgery if I will indeed be an inpatient? Looks like I'll be giving Muriel a call back.
Then there's the whole work issue, although I found out today that I am earning about 2 sick days per 2 months I am there, so if I can get about 6 days in the hopper before we go down, I might be good. My job is not physically demanding and they might even let me do some work from home once we would get back from Atlanta, so I wouldn't have to tap into my vacation days. Of course, this is all dependent on the fact I just have endo excised, and don't need (or want) a hysterectomy.
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
Medical Treatment History
Treatment: Lupron Depot
Duration: 2, 6 month treatments (2001 and 2004)
Toleration: Completely pain free during this time, minimal side effects (hot flashes), caused osteopoenia
Treatment: Oral Contraceptives (Mircette, Ortho-TriCyclen, Ortho-TriCyclen Low, Yasmin, Mini-Pill, Nuvaring)
Duration: Stayed on each treatment for 3-4 months at a time, throughout a 7 year time period.
Toleration: Little to no relief of pain, spotting, exacerbated migraines, anxiety, depression.
Duration: 2, 6 month treatments (2001 and 2004)
Toleration: Completely pain free during this time, minimal side effects (hot flashes), caused osteopoenia
Treatment: Oral Contraceptives (Mircette, Ortho-TriCyclen, Ortho-TriCyclen Low, Yasmin, Mini-Pill, Nuvaring)
Duration: Stayed on each treatment for 3-4 months at a time, throughout a 7 year time period.
Toleration: Little to no relief of pain, spotting, exacerbated migraines, anxiety, depression.
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...
First Post!
Creative title for my first post, no? So I figured I'd try my hand at this blogging thing, since so many endo ladies are doing such a great job and beautifully sharing their stories. I'm hoping to share my story with others and use this as a forum to give and get advice and to vent to the only people who understand! Here goes nothin'!
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