I heart my new doctor. I am filled with the lurve for him.
We had our appointment with the RE, on August 4th. The office was very, very nice, and his staff could not have been friendlier. My first specialist, Dr. Ok-but-not-great, told me he was referring me to the 'best guy in the game'. My thoughts were "well ok, it's about time you actually helped me, rather than just violating my most private of private spots with your fingers".
So Dr. Genius (as he will be known), is the HEAD GUY at the infertility clinic where I was. I signed in, 40 minutes early, and a mere 30 minutes later, Dr. Genius comes out to get us HIMSELF. This is unheard of to me!
A DOCTOR who comes out to take HIS OWN patient to the exam room???? Surely, you jest. But, no, he really did.
He spent seriously an hour taking our histories, and going through forms. Since he technically is an infertility specialist, they wanted to know all about Phil too. (which kind of geeked him out)
He asked us if we were currently trying to get pregnant (we are not), and then asked if we ever wanted to. Yes, we do, thanks.
Then he says "well you're not here for infertility, let's talk about this duplicate uterus." He asked me what the pain is like, where it is located, how often it comes...then he says..
"Generally there's not much we can do with this, other than prescribe medication to help you manage the pain"
My face must have turned 5 shades of red, because he said "I take it that was not the news you wanted to hear"
He went through some more of the reports from the other doctors, and then he said "you know what? I want to do an exam, let's take a look at this thing"
10 minutes later, I'm nude from the waist down, and we're doing another transvaginal sonogram. Again, Dr. Genius did the sono HIMSELF. He didn't send me off to some sono tech who might half ass it, HE did it. I was impressed.
He's taking pictures in there, when suddenly he said "oh. well, that changes things"
I FROZE. I said "I can hear you, you know that right??" He said "relax", and finished the sono..
Then he said "the duplication is sitting on top of your working uterus. It's blocked off. It's filling with fluid, and the fluid has no where to go, so that's why you have pain. This is probably going to have to come out after all."
He told me that one of my ovaries seems to be attached to the duplication, and is useless. I cried when he said that. I just thought "I'll never have a baby". He said "This does NOT mean you can't have babies" Dr. Genius and I must have some kind of Vulcan Mind Meld thing going on.
He said I have to have a test called a "hysterosalpingogram", and then I'll have to have a laparoscopy, and when he's actually doing the lap, he'll decide if he wants to just make the incision and take out the duplication. He said basically: The sonogram showed him the problem. The HSG will "light it up" and he'll be 90% sure it has to come out. The lap will make him 100% sure. He said there's a 10% chance that he's wrong, and that's why they do the lap--the camera will absolutely tell him what's in there. My question? "Dr. Genius, why do we have to do the HSG, when you're going to do the lap anyway?"
His answer "we have to do all the tests to rule out all possiblities"
Yay me.
Test is scheduled for Sept. 3. I will freely admit, that I am scared shitless of this test. I have heard horror stories about the pain associated with it.
Dr Genius told me that in all the years he's been at his job, he has never caused a patient pain with the HSG. I am trying to trust him...but years of "oh this won't hurt a bit" followed by my deafening screams, is not dying down easily.
I have to say though, that I am confident in his ablities, and I'm just so damn happy to have finally found a doctor that isn't afraid to touch me.
Friday, August 28, 2009
First visit to Pittsburgh
First of all no offense to any Pittsburghers, but I hate your city. HATE it. I can't stand the traffic, and the layout of the streets, and the SMELL. Ugh.
Oh and I hate your football, baseball, and hockey teams too.
The drive was not fun for me, but thank God for the verizon navigator on Phil's phone.
We make it to the West Penn hospital to see my specialist about 45 minutes early! I was pleased about that. The office was not that hard to find, and the front desk staff was friendly.
I was told that the day I was there was usually the doctor's OR day, and he was coming in to see a handful of patients in between OR times. A nurse took me back to a room...and very kindly offered Phil and I use of the bathroom, since we'd been driving for 2 hrs! Then she took my vitals, and said the doctor would be in "shortly".
"Shortly" in Pittsburgh must mean an hour and a half. I could hear the doctor in the hallway, laughing and joking with everyone, while we sat in an exam room and waited. I was getting a bit irritated. I understand that docs are busy, but over an hour??? I finally opened up the door and stood in the door way, and flagged down a nurse and asked her if they'd forgotten about me.
5 minutes later the PA comes in, to take my history. Another 15 minutes and the doc himself comes in. Nice guy, don't get me wrong. He decides he needs to do an internal, and he also wants an internal sonogram and blood work to rule out cancer. At this point, I have become used to all kinds of strange people looking in my vagina and sticking things in there.
He tells me after my sono I am free to go home, and to call them in a week to talk about the results.
I call and talk to the PA, she said they confirmed my doctors diagnosis of the uterus didelphys, and she tells me my blood work is fine. She said that the doctor wanted to talk to me, and would call me himself within the next 2-3 days.
He actually did! I was floored.
He tells me that he believes surgery is the only way to resolve my pain issue. BUT, he doesn't want to do the surgery. He tells me that the "abnormality" can lead to fertility problems, and because my fertility might be compromised, he was afraid that he might adversely affect what I have left. He refers to me another doctor.
A Reproductive Endocrinologist.
Oh and I hate your football, baseball, and hockey teams too.
The drive was not fun for me, but thank God for the verizon navigator on Phil's phone.
We make it to the West Penn hospital to see my specialist about 45 minutes early! I was pleased about that. The office was not that hard to find, and the front desk staff was friendly.
I was told that the day I was there was usually the doctor's OR day, and he was coming in to see a handful of patients in between OR times. A nurse took me back to a room...and very kindly offered Phil and I use of the bathroom, since we'd been driving for 2 hrs! Then she took my vitals, and said the doctor would be in "shortly".
"Shortly" in Pittsburgh must mean an hour and a half. I could hear the doctor in the hallway, laughing and joking with everyone, while we sat in an exam room and waited. I was getting a bit irritated. I understand that docs are busy, but over an hour??? I finally opened up the door and stood in the door way, and flagged down a nurse and asked her if they'd forgotten about me.
5 minutes later the PA comes in, to take my history. Another 15 minutes and the doc himself comes in. Nice guy, don't get me wrong. He decides he needs to do an internal, and he also wants an internal sonogram and blood work to rule out cancer. At this point, I have become used to all kinds of strange people looking in my vagina and sticking things in there.
He tells me after my sono I am free to go home, and to call them in a week to talk about the results.
I call and talk to the PA, she said they confirmed my doctors diagnosis of the uterus didelphys, and she tells me my blood work is fine. She said that the doctor wanted to talk to me, and would call me himself within the next 2-3 days.
He actually did! I was floored.
He tells me that he believes surgery is the only way to resolve my pain issue. BUT, he doesn't want to do the surgery. He tells me that the "abnormality" can lead to fertility problems, and because my fertility might be compromised, he was afraid that he might adversely affect what I have left. He refers to me another doctor.
A Reproductive Endocrinologist.
Fighting to get answers, any answers. Or why I am a Genetic Freak.
I left off after being told I need to immediately call my OB/GYN. I call his office and his nurse has no clue what's going on. I was drugged up and frustrated. I said "I want to know what the MRI says, I want to know why ER Doc said I wasn't formed correctly" She says "well we don't have any MRI for you, did you have one done?"
I wanted to throw the phone. I explain to her that I had one done the week prior, and no one called me about it. Again, she tells me that they don't have the results on my chart, and I need to schedule a follow up with the doctor. No shit. I already had another appointment the following week, so I asked if that could just be my appointment and follow up all in one. "Sure" she says. Then she tells me to call them on Monday (this was a friday) to find about the MRI.
I call them and am told that per the doctor NO ONE is discuss the MRI with me, and I am to wait for him to talk to me about it at my appointment. Immediately the worst scenarios are running through my head. "Do I have cancer?" "Am I infertile?" "Am I dying?" and I have a WHOLE WEEK OF THIS to live with.
One week later we get to the doctor, and he gets ready to do my exam (I have a problem with dysplasia every now and then, so this was supposed to be a follow up PAP for one 3 months earlier). He says "so, any questions?"
I just stared at him. I said "Do you have ANY notes at all about me being in the ER last week, and asking about my MRI?"
He leaves the room, and comes back in and apologizes. He said his staff neglected to update my chart after I called the last week. He also didn't have any notes saying that he told me I wasn't to discuss the MRI with anyone other than him.
Here's where it gets interesting.
He tells me that the "mass" in my uterus, is not just a mass. It's a whole OTHER uterus. He says this is not a cancer, it's not life threatening, and it's likely the cause of my pain and discomfort. Uterus didelphys, I guess is the term for it. He says that he sees a case like mine, maybe once every 3 yrs. He said my "abnormality" goes beyond the reach of his experience and he needs to refer to me to an Oncological Gynecologist. The closest one is 2 hrs away. I asked him if I was going to be able to have babies someday. (I'm 33--make that someday SOON). He said "I don't see why not".
So, let's recap.
1) I'm not dying, yay!
2) I should be able to have babies.
3) I have to go to Pittsburgh to see a specialist.
I wanted to throw the phone. I explain to her that I had one done the week prior, and no one called me about it. Again, she tells me that they don't have the results on my chart, and I need to schedule a follow up with the doctor. No shit. I already had another appointment the following week, so I asked if that could just be my appointment and follow up all in one. "Sure" she says. Then she tells me to call them on Monday (this was a friday) to find about the MRI.
I call them and am told that per the doctor NO ONE is discuss the MRI with me, and I am to wait for him to talk to me about it at my appointment. Immediately the worst scenarios are running through my head. "Do I have cancer?" "Am I infertile?" "Am I dying?" and I have a WHOLE WEEK OF THIS to live with.
One week later we get to the doctor, and he gets ready to do my exam (I have a problem with dysplasia every now and then, so this was supposed to be a follow up PAP for one 3 months earlier). He says "so, any questions?"
I just stared at him. I said "Do you have ANY notes at all about me being in the ER last week, and asking about my MRI?"
He leaves the room, and comes back in and apologizes. He said his staff neglected to update my chart after I called the last week. He also didn't have any notes saying that he told me I wasn't to discuss the MRI with anyone other than him.
Here's where it gets interesting.
He tells me that the "mass" in my uterus, is not just a mass. It's a whole OTHER uterus. He says this is not a cancer, it's not life threatening, and it's likely the cause of my pain and discomfort. Uterus didelphys, I guess is the term for it. He says that he sees a case like mine, maybe once every 3 yrs. He said my "abnormality" goes beyond the reach of his experience and he needs to refer to me to an Oncological Gynecologist. The closest one is 2 hrs away. I asked him if I was going to be able to have babies someday. (I'm 33--make that someday SOON). He said "I don't see why not".
So, let's recap.
1) I'm not dying, yay!
2) I should be able to have babies.
3) I have to go to Pittsburgh to see a specialist.
Pelvic MRI, the adventure continues....
I get my MRI done (and if you haven't tried it, I HIGHLY recommend having one, as they are oh so pleasant and comfortable, and the people really, really give a shit if your arms are falling asleep).
Yes, they see the mass, no they can't tell me about it. My OB/GYN has told me that if I get the pain again, I am to call his office, no matter the time or day, and leave a message. The week following my MRI, I get the pain. It's about 5 am, I take some of the left over meds, and try to ride it out until the office opens. The medication (Lortab) did not help. I finally cave and call his answering service at 0630. The very helpful "nurse" tells me she doesn't know why I'm calling there, because there's nothing she can do for me. "Page the doctor, please" I ask her, and her response "I'm looking at his office schedule and he's got nothing available, so just go to the ER".
I have to call Phil, who lives about 30 miles from me, and ask him to come get me, and drive me to the hospital. Thank God this man loves me. I call in to work, and get ready to spend another day in the ER. An internal exam, CAT Scan, and ANOTHER internal sonogram (we're up to 3 of those) later, the doctor thinks it's kidney stones. I said "it is NOT kidney stones, this is an ongoing issue for me, I just had a pelvic MRI last week" Doc leaves room. Doc locates and views MRI. Doc comes back to room and asks me if I have ever been pregnant/do I have children. The answer is no. I begin to feel a little panicky. I ask "WHY?" He tells me that from looking at the MRI, my uterus seems to be formed "incorrectly", and asks me what my GYN plans to do about it. "I don't know," I say, "he has not talked to me about the MRI, yet" The ER Doc then refuses to discuss it further.
I am again loaded up with pain meds, and sent home. I am told to call my OB/GYN immediately.
Yes, they see the mass, no they can't tell me about it. My OB/GYN has told me that if I get the pain again, I am to call his office, no matter the time or day, and leave a message. The week following my MRI, I get the pain. It's about 5 am, I take some of the left over meds, and try to ride it out until the office opens. The medication (Lortab) did not help. I finally cave and call his answering service at 0630. The very helpful "nurse" tells me she doesn't know why I'm calling there, because there's nothing she can do for me. "Page the doctor, please" I ask her, and her response "I'm looking at his office schedule and he's got nothing available, so just go to the ER".
I have to call Phil, who lives about 30 miles from me, and ask him to come get me, and drive me to the hospital. Thank God this man loves me. I call in to work, and get ready to spend another day in the ER. An internal exam, CAT Scan, and ANOTHER internal sonogram (we're up to 3 of those) later, the doctor thinks it's kidney stones. I said "it is NOT kidney stones, this is an ongoing issue for me, I just had a pelvic MRI last week" Doc leaves room. Doc locates and views MRI. Doc comes back to room and asks me if I have ever been pregnant/do I have children. The answer is no. I begin to feel a little panicky. I ask "WHY?" He tells me that from looking at the MRI, my uterus seems to be formed "incorrectly", and asks me what my GYN plans to do about it. "I don't know," I say, "he has not talked to me about the MRI, yet" The ER Doc then refuses to discuss it further.
I am again loaded up with pain meds, and sent home. I am told to call my OB/GYN immediately.
Let's get this blog started, already
So, 2009 has been a hellava year for me. Not in a good way.
It started with the onset of migraine headaches in February. My doctor sent me for a MRI of my brain, and told me not to worry, it's just to rule out some stuff. She said it would probably come back normal, and then we'd just try some medication.
Well, I have never claimed to be normal, and apparently neither has my brain. They found a tiny spot on the pons of my brain (in the brain stem). So after a weekend of FREAKING OUT, I got a referral to a neurologist. He said it's not a stroke, it's not a tumor, but it did look like an enlarged blood vessel. Had to get another MRI, and a shit load of blood work. Blood work comes back a little wacky, but not to worry, I'm not dying. They suspect I have something called "antiphospholipid antibody syndrome". Treatment= low dose of aspirin a day. Imitrex for migraines. Repeat blood work in September.
Now it's March, and suddenly I am waking up in the middle of the night with this annoying, stabbing kind of pain on my left side towards my groin. I let it go the first time, but when it happened 2 weeks later again at 3 am, I called the doctor. She has me come in for an exam, and thinks I injured myself. Tells me that she can't help me unless I'm presenting with symptoms, but if I DO get symptoms I need to go to the ER. Fast forward to the next week, and I'm in the ER with excruciating pain. Blood tests, sonograms, INTERNAL sonograms, and they have no idea what's wrong. The doctors think I have kidney stones, but there's no evidence of that on the sono or in my blood/urine. The sono does, however show a "mass" in my uterus, so they load me up with pain pills and send me to the OB/GYN.
My GYN decides I must have ovarian cysts, but he wants his own sonogram. So that gets scheduled for 4 weeks out. This was in April, which takes the sono out to May. He says he wants to give it 4 weeks, to let "mother nature" fix it.
4 weeks later, I am in pain again, and having the sonogram, and now they think I'm having an ectopic pregnancy (I wasn't). The mass is more pronounced, and now I'm told that the doc still thinks it is ovarian cysts, but he needs an MRI to be sure.
MRI gets scheduled for June 12.
That's enough for this blog...
I'll post the rest of my adventures in a separate blog, because oh yes, there's more.
It started with the onset of migraine headaches in February. My doctor sent me for a MRI of my brain, and told me not to worry, it's just to rule out some stuff. She said it would probably come back normal, and then we'd just try some medication.
Well, I have never claimed to be normal, and apparently neither has my brain. They found a tiny spot on the pons of my brain (in the brain stem). So after a weekend of FREAKING OUT, I got a referral to a neurologist. He said it's not a stroke, it's not a tumor, but it did look like an enlarged blood vessel. Had to get another MRI, and a shit load of blood work. Blood work comes back a little wacky, but not to worry, I'm not dying. They suspect I have something called "antiphospholipid antibody syndrome". Treatment= low dose of aspirin a day. Imitrex for migraines. Repeat blood work in September.
Now it's March, and suddenly I am waking up in the middle of the night with this annoying, stabbing kind of pain on my left side towards my groin. I let it go the first time, but when it happened 2 weeks later again at 3 am, I called the doctor. She has me come in for an exam, and thinks I injured myself. Tells me that she can't help me unless I'm presenting with symptoms, but if I DO get symptoms I need to go to the ER. Fast forward to the next week, and I'm in the ER with excruciating pain. Blood tests, sonograms, INTERNAL sonograms, and they have no idea what's wrong. The doctors think I have kidney stones, but there's no evidence of that on the sono or in my blood/urine. The sono does, however show a "mass" in my uterus, so they load me up with pain pills and send me to the OB/GYN.
My GYN decides I must have ovarian cysts, but he wants his own sonogram. So that gets scheduled for 4 weeks out. This was in April, which takes the sono out to May. He says he wants to give it 4 weeks, to let "mother nature" fix it.
4 weeks later, I am in pain again, and having the sonogram, and now they think I'm having an ectopic pregnancy (I wasn't). The mass is more pronounced, and now I'm told that the doc still thinks it is ovarian cysts, but he needs an MRI to be sure.
MRI gets scheduled for June 12.
That's enough for this blog...
I'll post the rest of my adventures in a separate blog, because oh yes, there's more.
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