No more cysts….

No more Mirena…

No more hormone surges driving me crazy…

Because on Sept. 23 my uterus and ovaries will be taken out of me and I will go through menopause.

I went to the Gyno this morning and it was decided that it’s time for the hysterectomy. I’m nervous. It’s understandable. But it feels like a new chapter openening. My hubby and I are trying to figure out how to manage the kids during my 6 week recovery. I’ll be in hospital for 2 days. I’ll have a lovely abdominal incision - oh great. But the prospect of no more endo pain makes me feel hopeful.

I gave in. It hurt too much. I had to.

When the pain reached a 3.5 out of 5 (my doc’s office uses a 5 point pain scale, don’t ask), I knew it was time to call them. I wasn’t expecting a miracle - or even an appointment. It was already 3 and they close at 4. And they were booked and couldn’t get me in but a nurse called me back at 4:30 and advised me with that high of pain I should be in ER. Not going to happen. But she said if I can manage at home over night, if the pain doesn’t intensify, then that’s ok. But if it’s get worse or changes, then go straight to the ER. And I will. I know better. Really, I do. But I will be going in at 9:50 tomorrow morning and have this cyst looked at. This should be fun - not.

Now I’m just trying to get through the night without going to the ER. Wish me luck. I just managed a slice of pizza and hoping it stays down. I’m so queasy and I know if it comes up that’s a sign I need to head to ER. This sucks major time.

I thought my cyst had burst this morning, but now I thinking maybe it hasn’t.

I was driving the car when I felt some pain by my ovary (nothing new lately) and then a very sharp pain in my right shoulder. This is usually a sign that it’s ruptured. Right? This is what I’ve been told in that past, at least.

Well, I assumed this and carried on my activities. But now I’m in PAIN! I’m talking time-to-pop-the-pain-pill pain and lay-in-bed-with-heating-pad pain. Ouch! My whole side and that ovary area hurt. I have this insane urgency to have a bowel movement. I’ve been nauseous since I woke up this morning.

My shoulder doesn’t hurt anymore - that was a transient thing that only bothered me for about 5 minutes. But it was so sharp that if it had in my left shoulder, my car would’ve been heading to the ER. Seriously.

I just wish the two kids running around my living room playing Indiana Jones were at their Aunts so I could lay down and try to sleep through this pain. It sucks. And I know going to the doctor is pointless as I already have pain meds and I don’t feel like getting an ultrasound to tell me what I already know.

But if it gets worse - I start throwing up, or the pain becomes unbearable, I’ll have the hubby take me to ER tonight. I just hope it doesn’t get to that point.

I get my letter - “your annual Pap is due, make an appointment… blah blah blah.” So I call this morning thinking maybe I can get in soon cause of this cyst. It’s still there and still annoying!

But the nurse looks me up and my pap isn’t due until Sept. 25th, which was what I was thinking when I got the letter. But whatever. So I said well give me Laurie. Then she tells me this is Laurie’s last week. WHAT?!?!? She’s my favorite nurse practitioner in the world and one of deciding factors why I left my old gyno. I liked knowing that she had had endometriosis and had a hysterectomy at a young age because of it. When I asked her questions I didn’t get clinical answers I got real life experience answers. I got “this is what it’s going to be like..” answers. She also knew the pain of cysts because she had cystic ovaries before her hysterectomy as well. She knew that even the small ones can hurt when you have ENDOMETRIOSIS. This is something that the other NP Susan doesn’t grasp - because she doesn’t have endo. My NP took the time to talk with my neurologist about why I can’t be on hormonal BC pills because of my migraines. Susan, the first time I saw her for a cyst she tried shoving the pill down my throat even though I have a Mirena. “But it will help because the Mirena increases cysts.” Duh, I know this. But the Mirena is the ONLY thing keeping my uterus inside my pelvis right now! I was comforted knowing that Laurie was in the operating room when I had my lap. She saw the endo with Dr. She knew where my pain was. When I described something she would shake her head and understand. And that’s important for chronic pain patients. Honestly, I don’t know if I can handle going back to practioner who doesn’t grasp what I’m feeling when I walk into her office and say “I’m hurting.”

This is the third day I’ve been hurting with this cyst! Why won’t the darn thing just pop or disolve already? It’s leaving me in a constants state of blah, and cramp, and blah again. And I’m tired. It’s ridiculous.

I could go into my gyno’s office and have the standard ultrasound. But what would that prove? Yes, I have a  cyst. oooh. Like I need confirmation on that one. And it’s most likely a small one since I’m not hunched on the floor throwing up and crying like a baby. I’ve had worse, truth be told. Frankly, it’s just annoying.

And I know why I’m getting them again - Topamax. For some reason Topamax causes an increase in ovarian cysts. Add to that that Mirena is increases ones chances of getting ovarian cysts, and I’m a happy camper. But I haven’t had one in a while. And the last time I had one, it got to the point where after 2 weeks the pain was unbearable, I had to be sent for ultrasound. It wasn’t even that big, either! But when you have endo on your tube, a cyst pressing on the ovary just aggrivated the heck out of that area. This was the doctor’s visit when I decided it was time for the hysterectomy.

And that led to the urologist, which led to the endocrinologist, which led to the passing out, which led to the neurologists, which led to being put off of work, which all in all is now being called the Summer of Med School - because I’ve learned enough to probably take a med school entrance exam and pass. lol j/k

And I always feel so silly going to the doctors for cysts. It’s not like they can do anything for them anyway.

I was in pain all night - again. It began under my rib, and then showed up around my left ovary at the same time.

It’s still there today.

I’ve been living with heat and rest, and trying to cope. It’s taking everything in my will power not to call Dr. Endocrinologist and say “Listen, these aren’t your ovaries, I’m taking them out!”

* I had to edit this to say how much I wanted to elaborate on this but couldn’t because of the junk on my plate right now - which isn’t helping! Unfortunately, I still can’t find the time to elaborate but may later tonight when things have calmed down. Until then, take care everyone in Endo land.

It was 3:45 and my daughter was at the edge of my bed: “Mommy, I don’t like my bed.”

Well, I wouldn’t either. It’s a bunk bed with a bunk bed mattress. It’s hard. You’re brother’s in there snoring and the cat wants to sleep on your feet. I understand. Just crawl in bed with me. At this point I don’t care.

But as I try to fall back asleep I realize that I am very, very nauseous. I could vomit, and now I have a kid blocking my easy access to the bathroom. Great. But I’m not sure why I feel so ill since I was perfectly fine when I went to sleep? Then I roll on to my back, to get into a more comfortable position, and it hits - the twinge.

If you get ovarian cysts, then you are surely familiar with “the twinge.” It’s that sudden stabbing pain that takes your breath away. It never last long, but leaves a trail of discomfort in the region. Yes, that “twinge.” I can cope with this while sitting at my desk at 4 in the afternoon or even 9 in the morning, but at 3:45 am when I’m trying to go back to lala land, not too well.

Instead of being lulled back into a nice rhythmic sleep, I laid there for the next hour or so with periodic stabs (in my left side because my right ovary must either be dead or it likes me too much to cause pain), and with this overwhelming feeling that I just needed to vomit. It was terrible. And I didn’t want to vomit - who does after all, but I couldn’t drink anything for another 3 hours because of my desmopressin. I couldn’t even get up to get a heating pad because I didn’t want to risk waking her back up. I was literally stuck between my daughter - who had one of my arms pinned down, and my husband - who was facing the wall totally oblivious that she had even come in there. And there I laid, cursing myself for letting her crawl in bed with me. If I had gotten up and put her back in her own bed, then I could’ve gotten my heating pad from the living room.

Eventually I fell asleep cause my husband woke me up at 7. And I’ve been nauseous all day. The twinges weren’t there this morning - thank goodness - but they’ve since come back this afternoon. Along with a headache and that “oh, I want to throw up” feeling. I tried to eat, thinking it was because I hadn’t eaten lunch, but the few crackers I got down made me feel worse.

I really, really, really, really hate ovarian cysts. And I’m really, really, really mad that I haven’t been cleared for that hysterectomy right now. Although, then I would probab;y just be waking up with hot flashes instead.

I have 4 projects on my plate and would like one off my plate by the time I hit the pillow tonight. Two are portfolios, so I would at least like to make progress in them. I know they won’t be completed by the end of the night - but possibly the end of the week. The other is a short story. I could get this done in no time. Tonight. I need to be relaxed before I can be creative. The other is a piece copywriting assignment. This won’t take long, so I know it will get done tonight. Maybe even this afternoon, if I’m lucky.

I can feel the beginnings of a stress headache forming on my brow, and I’m desperately hoping it’s not going to put a damper on my plans of having a productive afternoon and evening. I mean, no kids!! Just as long as this stupid headache doesn’t turn into a storm raging inside my head, I think I’ll be fine. I know I need to learn to pace myself, but I work better under deadlines and pressure.

Where did my morning go? I woke up at 6 and so I should’ve been able to get so much accomplished, but I haven’t. Now it’s already noon! I haven’t eaten since 8. Not hungry. But will make myself eat something small. I’ve been logging computer time at my desk and neglecting the things around this house that needs my attention. Problem is: I still have computer work to do! Ugh!

My endocrinologist’s nurse called me - she had called me back last week because I had phoned them. This when my med had stopped working and I was going to the bathroom once again like crazy. I told her at that point about my theory that it’s bad because I had left the fridge door ajar overnight. She agreed that this was a possibility and told me she would call back Monday. I was shocked, though, when she did because most doctor’s offices are such blahs at that. They say Monday and in Dr. langauge it turns into Thursday.

Well, I told her the dissapointing news that while the new batch is working great at night, it’s doing poorly during the day. I’m still experiencing frequent urination. She said Dr. is still out of office until next week but she was going to email him because my current fluid intake could dehydrate me if I’m not careful (and with DI you doin’t want to be dehydrated!). I told her over the weekend, when we were at my in-laws visiting, it was warm and I had to drink more water than I usually do and this just worsened the condition. So I’m stuck. I can’t decrease my intake any more, and I can’t increase it. I’m screwed.

She said they are in contact with Dr. via email (well, hmm, I have his email. I wonder if he’d respond if I emailed him?). So who knows when I’ll hear from him. And where is he? He’s like never there or something. She did say if he said I needed to be seen, there were two there who could fit me in. So I don’t know what that is about. I just need to know how to adjust my stinking fluid intake!!!!

I’m also trying to get this portfolio done for school. And I have this other class to work on that I’m doing a portfolio for so I can get credit for the class without taking it. I’m trying to show that I know the subject matter well enough that spending $312 a credit hour is a waste of my time and money. My first one is coming along great! I just need to buy more printer paper cause I just ran out.

And my phone has been ringing off the hook - or off the cell all morning! It’s like I’ve become popular. I would like some peace and quiet. No kid’s tv in the background. No “she took my slinky!” No “Mommy, I want Dora back on!” Just quiet. But maybe I’ll get that tonight from 6-8:30 when they go to VBS at church. But then my hubby will be home and he’ll probably have the xbox on again. I’ll go to the bedroom and “hide.”

Busy day and it’s getting away from me…. yikes!

My fridge was left open over night - just a hair, really. But it was enough to make it really warm in full-of-freshly-bought-food fridge. I tossed all meat and cheeses and anything that looked bad. But I forgot one vital thing in the fridge that apparently needed to be kept at 30-40 degrees and hadn’t been - my desmopressin. Yeah. I’m an idiot.

So, it’s no wonder then that the next few days I was drinking like a fish and going to bathroom like a 78 year old man with a bad prostate (believe me, I’ve been around enough of ‘em so I know from experience that that’s the best description). But I hadn’t made the connection. I hadn’t even considered that my medicine would’ve gone bad! And I kept taking it, and worrying that I was going to get water intoxication cause I was drinking too much water and taking the medicine at night. Yet - it was barely effective. So, no harm done.

But it dawned on me last night when I was getting my spray out of it’s box and I noticed that the label was messed up from water condensation. And then it hit me like a mac truck! Maybe it was that my medicine needed adjusting, but that I needed new medicine. So I went to Walgreens, talked with Pharmacist, and lo and behold - had it refilled. Thankfully my insurace ok’d it and I wasn’t slapped with 200 buck bill.

Then my endocrinologist’s nurse calls back from my call to them the other day re: “this stuff isn’t working anymore.” And I explain all of this to her, and she agrees this is likely it. Doctor was going to have me double the dose, but lets hold off on that over the weekend and see if the new batch of med works. If not, we’ll go with the new instructions from doctor. Sounds good to me. Also, she doesn’t think I’m getting enough to drink ( when the meds are working), and I expressed my concern over not knowing how much I need to limit. She’s checking with the doctor.

And now I have to dash out in this nasty heat (with ice cream cupcake in tow) for my daughter’s 3rd birthday party. They grow up way too fast.