One of the other missions of the week during my NIH visit was to get an IUD inserted. I hadn’t blogged much about this, but it’s really been a time issue and not because it’s too personal.
Women with Hermansky-Pudlak Syndrome frequently develop problems with their female cycles. We often experience exceptionally heavy bleeding etc. As a younger person this was never an issue for me, but during the last few years it has become worse and worse.
There are days when I can bleed so badly that I’m in the bathroom every 45 minutes taking care of business. I can’t sleep through the night without creating a major mess. It can last for days and days, making one very tired. I’ve also noticed in these last few years that my cramps have become increasingly worse. My GI issues can be fine the rest of the month, but suddenly when it’s that time I’m also in the bathroom constantly with an upset stomach. My joint pain gets worse. It’s like being sick for a week or more out of the month.
Yet some months things can be almost what I’d regard as “normal.”
During the past few years I’ve made a few attempts at birth control pills to help with the bleeding, but each time the experiment has been a disaster. I guess I’m sensitive to hormonal changes or something. I don’t know. Every time it has created a very acute emotional response (making me teary at everything). I suddenly have an appetite that just won’t quit, even at night (and Lord knows my large butt doesn’t need that!). My blood pressure also has a tendency to get out of whack.
This may sound silly, but I’ve been thinking about this IUD for several years now. I was afraid to do it. As my mother will readily tell you, I’m a pain wimp. I just didn’t like the idea of having this thing put in, and after being at the NIH when another friend got one with some difficulty, I was really afraid of the process. What can I say, sometimes logic goes out the window and fear takes over. I was very anxious about this whole thing.
But, I was tired of the birth control experiments and this is an option that has worked very well for other HPS’ers. I decided I just had to suck it up, be a grown up, and take care of business.
Dr. Merideth is the OBGYN that sees HPS patients at the NIH. I discussed with her my extreme anxiety about this whole idea. I love Dr. Merideth. She is so patient and understanding. My first experience at the gynecologist as a 19-year-old girl was so horrible that I didn’t go back to one for eight years. I wonder if that horrible experience contributes to my anxiety about such things.
Essentially back then I was at the height of my Crohn’s issues and had completely stopped having a period. So, my mother took me to “the doctor.” This may sound stupid, but I had no idea what to expect. No one explained anything. The doctor was an older German man (we were in Germany) and he was very stern. I found the exam painful, probably because I was so overwhelmed. There was no nurse in the room so there I was, having no warning about how this works, with some strange old man. Eventually he gave up on the exam and essentially yelled at me for being “uncooperative.” To make it worse, after I got dressed and joined my mom in the waiting room, he came out and in front of everyone lectured my mother about what a horrible patient I’d been. I was so embarrassed and humiliated.
So to find a doctor I’m comfortable with for such issues has been a blessing. Dr. Merideth listened so patiently and didn’t dismiss or downplay any of my fears, even if they surely must have seemed silly to her having done this sort of thing routinely forever.
She sent me for a vaginal ultrasound. Yes, it is what it sounds like. It was yet another extremely unsettling experience for me. The tech was a woman, however, and very sweet and patient.
We got through the exam and I thought I was all done, but she told me to stay put for a few minutes and disappeared. She came back with another doctor and I had to do the whole thing over again. Then Dr. Merideth appeared – so now here I am with my legs spread and this probe in a very personal spot with three people standing around looking at the screen. Then in came the radiologist, a man doctor. That was almost too much for me. He walked in, looked at the screen, grunted a few times, and left. I was just not liking this week very much at all.
It turned out that everyone was looking at something they weren’t sure whether to call fibroids or polyps. More tests were needed. They sent me for an MRI.
I’d never had an MRI. It didn’t seem like a scary test at all. All you have to do is lay there, maybe even fall asleep. I really didn’t expect to have any trouble with that test. Turns out that tube is extremely tight. I started to have a panic attack inside the machine. The thing was Kevin had really gone to great lengths to schedule this test so that I could have another test done later that evening. Major strings had been pulled and favors called in. If I wigged out, it would really be bad for everyone concerned. I decided I just had to survive the test.
I started trying to do relaxation techniques, but they weren’t working. I tried thinking about happy places, but I just couldn’t get over that feeling of being trapped. I started making up math problems in my head and solving them. I started thinking of the lyrics to my favorite songs and trying to recite them backwards. Anything to keep my mind occupied and make the time go faster.
I got through the test and learned that from now on, no MRI’s without some drugs. I really am such the wimp. It’s so embarrassing!
The results of the MRI were inconclusive. This suddenly made my wimpy nature even more problematic. If they were looking at polyps, then the polyps would need to come out. If they were fibroids, then likely this was no big deal and we could proceed with the IUD.
It was decided we’d do this under general anesthesia, which further complicated things too. While I’m a wimp, all of this hoopla seemed a bit overkill to me. The anesthesiologist explained she wanted to do this under general anesthesia because of my sleep apnea. They wanted to have control of my airway. Okay – I gave in.
Because we didn’t know if I’d have to have polyps removed, it also meant getting a blood platelet transfusion.
I seem to have had a possible mild reaction to the blood platelets and now have to have some follow up blood work this week. That kept me at NIH a bit longer than expected while they debated when, and if, to let me out.
Thankfully Dr. Merideth was able to put the IUD in and so far so good. I am having some very mild cramping, but I think that’s to be expected. I’ve also had some bleeding, but not too bad. I think I’m glad I got those platelets regardless, even if they did cause a bit of a hassle.
I can’t help but think that if I’d tried to do this at home, it would have been an even more horrible experience. I can’t imagine that a doctor that barely knows me would have been so understanding of my anxiety about all of this. Nor do I think they would have been so incredibly cautious or careful. I’m so grateful for Dr. Merideth!
So, that’s the IUD saga, and I’m still not finished recounting the dramas of the week – grin!
Women with Hermansky-Pudlak Syndrome frequently develop problems with their female cycles. We often experience exceptionally heavy bleeding etc. As a younger person this was never an issue for me, but during the last few years it has become worse and worse.
There are days when I can bleed so badly that I’m in the bathroom every 45 minutes taking care of business. I can’t sleep through the night without creating a major mess. It can last for days and days, making one very tired. I’ve also noticed in these last few years that my cramps have become increasingly worse. My GI issues can be fine the rest of the month, but suddenly when it’s that time I’m also in the bathroom constantly with an upset stomach. My joint pain gets worse. It’s like being sick for a week or more out of the month.
Yet some months things can be almost what I’d regard as “normal.”
During the past few years I’ve made a few attempts at birth control pills to help with the bleeding, but each time the experiment has been a disaster. I guess I’m sensitive to hormonal changes or something. I don’t know. Every time it has created a very acute emotional response (making me teary at everything). I suddenly have an appetite that just won’t quit, even at night (and Lord knows my large butt doesn’t need that!). My blood pressure also has a tendency to get out of whack.
This may sound silly, but I’ve been thinking about this IUD for several years now. I was afraid to do it. As my mother will readily tell you, I’m a pain wimp. I just didn’t like the idea of having this thing put in, and after being at the NIH when another friend got one with some difficulty, I was really afraid of the process. What can I say, sometimes logic goes out the window and fear takes over. I was very anxious about this whole thing.
But, I was tired of the birth control experiments and this is an option that has worked very well for other HPS’ers. I decided I just had to suck it up, be a grown up, and take care of business.
Dr. Merideth is the OBGYN that sees HPS patients at the NIH. I discussed with her my extreme anxiety about this whole idea. I love Dr. Merideth. She is so patient and understanding. My first experience at the gynecologist as a 19-year-old girl was so horrible that I didn’t go back to one for eight years. I wonder if that horrible experience contributes to my anxiety about such things.
Essentially back then I was at the height of my Crohn’s issues and had completely stopped having a period. So, my mother took me to “the doctor.” This may sound stupid, but I had no idea what to expect. No one explained anything. The doctor was an older German man (we were in Germany) and he was very stern. I found the exam painful, probably because I was so overwhelmed. There was no nurse in the room so there I was, having no warning about how this works, with some strange old man. Eventually he gave up on the exam and essentially yelled at me for being “uncooperative.” To make it worse, after I got dressed and joined my mom in the waiting room, he came out and in front of everyone lectured my mother about what a horrible patient I’d been. I was so embarrassed and humiliated.
So to find a doctor I’m comfortable with for such issues has been a blessing. Dr. Merideth listened so patiently and didn’t dismiss or downplay any of my fears, even if they surely must have seemed silly to her having done this sort of thing routinely forever.
She sent me for a vaginal ultrasound. Yes, it is what it sounds like. It was yet another extremely unsettling experience for me. The tech was a woman, however, and very sweet and patient.
We got through the exam and I thought I was all done, but she told me to stay put for a few minutes and disappeared. She came back with another doctor and I had to do the whole thing over again. Then Dr. Merideth appeared – so now here I am with my legs spread and this probe in a very personal spot with three people standing around looking at the screen. Then in came the radiologist, a man doctor. That was almost too much for me. He walked in, looked at the screen, grunted a few times, and left. I was just not liking this week very much at all.
It turned out that everyone was looking at something they weren’t sure whether to call fibroids or polyps. More tests were needed. They sent me for an MRI.
I’d never had an MRI. It didn’t seem like a scary test at all. All you have to do is lay there, maybe even fall asleep. I really didn’t expect to have any trouble with that test. Turns out that tube is extremely tight. I started to have a panic attack inside the machine. The thing was Kevin had really gone to great lengths to schedule this test so that I could have another test done later that evening. Major strings had been pulled and favors called in. If I wigged out, it would really be bad for everyone concerned. I decided I just had to survive the test.
I started trying to do relaxation techniques, but they weren’t working. I tried thinking about happy places, but I just couldn’t get over that feeling of being trapped. I started making up math problems in my head and solving them. I started thinking of the lyrics to my favorite songs and trying to recite them backwards. Anything to keep my mind occupied and make the time go faster.
I got through the test and learned that from now on, no MRI’s without some drugs. I really am such the wimp. It’s so embarrassing!
The results of the MRI were inconclusive. This suddenly made my wimpy nature even more problematic. If they were looking at polyps, then the polyps would need to come out. If they were fibroids, then likely this was no big deal and we could proceed with the IUD.
It was decided we’d do this under general anesthesia, which further complicated things too. While I’m a wimp, all of this hoopla seemed a bit overkill to me. The anesthesiologist explained she wanted to do this under general anesthesia because of my sleep apnea. They wanted to have control of my airway. Okay – I gave in.
Because we didn’t know if I’d have to have polyps removed, it also meant getting a blood platelet transfusion.
I seem to have had a possible mild reaction to the blood platelets and now have to have some follow up blood work this week. That kept me at NIH a bit longer than expected while they debated when, and if, to let me out.
Thankfully Dr. Merideth was able to put the IUD in and so far so good. I am having some very mild cramping, but I think that’s to be expected. I’ve also had some bleeding, but not too bad. I think I’m glad I got those platelets regardless, even if they did cause a bit of a hassle.
I can’t help but think that if I’d tried to do this at home, it would have been an even more horrible experience. I can’t imagine that a doctor that barely knows me would have been so understanding of my anxiety about all of this. Nor do I think they would have been so incredibly cautious or careful. I’m so grateful for Dr. Merideth!
So, that’s the IUD saga, and I’m still not finished recounting the dramas of the week – grin!
Comments
Sorry you had to go through all that stuff.
My doctor does that sonogram every time I go. As a result I don't go that often any more...I even stretch it to over a year between each visit. As a matter of fact I was considering switching doctors. I have known him for
14 years; he was also by obstetrician. Otherwise I would have changed already. It would not be so bad if it was just him, but it's usually at least two women doing the test, and then he comes in to look at the monitor.
Like me, you need to have an open MRI. I am extremely clostrophobic and will not get get into a regular MRI machine. My first question when I have to have one is, "is it an open MRI?". I was wondering why at the NIH they don't have them. I also heard that when you need a colonoscopy they don't give you anesthesia.
I heard that if you get hungry at night, when you should not be eating, you should munch on ice. Unfortunately I did not hear this when I was on prednisone.
Hugs,
>Ana<
You have had quite a week, one you won't likely forget any time soon. But, hopefully you are through the worst of it and that the pay off will be sweet monthly bliss, hopefully. Hang in there and take it easy for awhile. You certainly deserve it.
Julie