I was just approved for Lupron. I should be getting my first shot w/in a few days, and then get a shot every 4-5 weeks for the next 6 months.
First, my ob/gyn said it will prove or disprove if I have endometriosis without surgery. He said if my cramping/pains aren't present anymore, walla...it must have been from the endo. Also, I am currently having blood issues. My hematologist is still trying to figure out what is wrong with me. (I guess I'll explain this all at the end of this post).
ANYWAY..I've heard some massive horror stories about Lupron when used as cycle prevention. Lupron can be used short-term to help when doing IVF and such, too...so this is not concerning that use. This is the long-acting Lupron.
I was told it basically throws your body into a chemical menopause, and it will literally be just like menopause. I was warned about mood swings, crying fits, cold/hot flashes, weight issues...and more. I am just wondering how bad this will really be, or if maybe some people luck out and don't get too bad. They said since i had PCOS and already have issues with my hormones, it might not be much of a difference for me. But still.
I was also given enough Xanax to keep my calm, as needed. I was on Xanax before, taking as needed (2-4 times a week) because of my other issues, so I don't 'mind' taking it to help with any mood issues I might run into.
So anyone ever done the long-term Lupron injection?
*Now to explain my other situation, since some ladies here might know me and haven't heard from me in a long time.
I have some major issues with my blood. First, it started with low-iron anemia. My iron and ferritin (what stores the iron supply in the body) were in the single digits (normal/healthy people have iron levels 50-100+). So first my PCP sent me to endocrinologist. She put me on iron, as well as metformin again because she said my hormones were out of whack and agrees that metformin is good for treating PCOS. Little by little, my iron finally got to about 15-20, and my ferritin rose a little too. But then she noticed things getting weird, and also said I was taking enough iron that my iron should be fairly high, which it was not. She then decided to send me to a hematologist.
That is where the circus began. First my hematologist had to rule out an malabsorption issues. For the most part, she has, although I'm getting a endoscopy with small bowel biopsy on the 14th as a final step to make sure I'm able to absorb things properly through my digestive track. Then she was doing bloodwork on me, taking blood every two weeks, and noticed things. I then went through a slew of tests to see if I have any clotting disorders. I already knew I had one, which she confirmed, said it was minor, and just noted it on my chart and told me to tell a Dr. before surgery that I do have a clotting disorder. Nothing big, she said.
Then I have some abnormally shaped? (don't remember) platelets. again, she said nothing big, no big deal, just slight explanation as to why I don't heal well. But then the poop really hit the fan.
My iron was not going above 25, it was holding steady in the low 20's, and my ferritin levels stopped rising. Keep in mind, I was taking 3 iron pills a day, and I simply should have been doing better than that. But, usually with low iron, you also have low hemoglobin/platelet counts. I did not. My hemo/platelet was always 'normal'. Soon, they noticed my red blood count rising. It kept on going up and up each time they checked. They bumped my iron down to 1 pill a day, versus three. My iron stayed around 20, my hemo/platelet count remained normal, but my red blood count kept on going up.
Finally I was told to stop taking iron, because my red blood count was so high, I was at a high risk of heart attack, stroke, or blood clot. They were about ready to start 'bleeding' me weekly, to help remove some of the red blood cells, because they were afraid of giving me blood thinners. I stopped iron, my iron is back down to single-digits, but my red blood count is still sky-high. They said I was just bordering on where they'd need to treat it, so for now they are just going to keep on eye on me.
They don't know what is causing this, so they have done so much testing. I had this one test, blood volume/mass/red blood mass test. Weird test. I got injected with 2 different radioactive isotopes, long story, but that was how they could tell how much blood i had in my body total, and how much of that blood was red blood cells, and how much was serum. I haven't been explained the full results yet, all I was told (by a different Dr. who I asked to at least clue me in now so I don't have to wait until my next appt on the 21st) is that I have 1/2-1/3 the normal blood supply of a person, and my blood is more red blood cell vs. serum than it should be.
No idea what that means. I went through lung testing/function, to make sure my body is able to intake oxygen (when it's not, the body makes more red blood cells to help carry the oxygen to make up for things). Well, yeah...my lungs are pretty good, aside from my asthma, and that is not the cause. So far, my heart is looking OK. I do have a high-risk of heart problems, but as of right now, it seems to be fine.
Next step is bone marrow biopsy, which I do NOT look forward to
They were going to do my bone marrow biopsy at the same time as my endoscopy, but alas, the hospital requires those things to be done in different surgical suites with different staff present, and it cannot be done at the same time. So I'll be knocked out twice, but oh well. I think my bone marrow biopsy is at the end of this month/begining of next month.
I guess I'm worried. Although leukemia usually presents itself with white blood count issues, it can also be present with red blood count issues. I didn't know until last week, but there has been leukemia in my family (great-grandmother, and her siblings, all died of it).
Anyway...I'm busy as hell with all these Drs and testing. It sucks. I'm tired, and can't sleep much. I have no energy. It's a fight just to get into the shower every day, because I'm simply too tired to get out of bed 99% of the time. They can't put me back on iron, which helps my energy levels. Every sleeping aide they've tried has not worked. They can't try stimulants to help wake me up because they are afraid my heart can't take it. So until they figure things out, I'm s**t out of luck.
I'm given Xanax to help when I get really bugged by all this. Flexeril and pain killers to help my fibromyalgia, which acts up because of stress and lack of sleep. All I can do is sit and wait, and HOPE they find something they know how to treat. They keep on freaking me out, because they all keep saying they've never seen this before. They've seen one part, they've seen the other...but never the combination that I have. They joke around with me, and told me to think of a name for a new disease/condition...they said if I have something new, I can name it. Nice, eh?
I just hope the last test will be that bone marrow biopsy. The bone marrow is what tells the body to make cells and such, so mine might be...miscommunicating with my body for some reason. I hope not. I hope it's not leukemia. (not just because cancer is bad, along with most diseases that cause bone marrow issues, but because from what I remember, my dad is the only one in my family who is my blood type, and he is sick, too and could not donate to me).
So yeah.
I need the Lurpon to help see if I have endo, and because they're worried what getting my period does to me. Drops iron even more, blood loss, clotting issues...they said it's just not worth the risk until they find out what is wrong.
I'm just so tired, and flippin' bored. I'm not allowed to do much, even if I could, because my immune system is shot and I get sick so easily.
All I do is sleep, watch TV, play on the computer...it gets old after a few weeks of this.
Lupron: What can you expect? 
