A pain in the gut is worth a pill (or two) in the hand...

Tomorrow (technically today, since it's after midnight, but feels like tomorrow since I haven't gone to sleep yet) marks the 3rd week of being on Lupron to try to help with my PCS.  I haven't posted about this since I went in for my shot, so I figured that now (while I'm not sleeping) would be a good time to kind of document the past 3 weeks, pain-wise.

Dr Stitt is an amazing woman.  I am so happy to have found her and have her treat me while I'm here.  She listens, she advises, and she takes time to spend with each patient.  I'm pretty sure I've mentioned this in my other posts on the subject, so I'll get right to the nitty gritty.

As scared as I was to start the injections (hello - if something happens, it takes at least a month for the drug to wear off!... not even mentioning 'normal' side effects and stuff like that...), when I got to the office and spoke with Dr Stitt, I felt better about the decision.  Gary and I had decided it wasn't the right time to have kids right now, especially if it was just to put off this treatment and hurry and get one in so our 'child timeline' would work out right...  This was the thing to do.  And I was going to do it.

I picked up my injection from the pharmacy on my way to my appointment, but they were out of the hormone replacement drug, so I'd have to go back the next day to get that.

The shot & I made it safely to the dr office, where we waited, for not very long, if I remember right, in the waiting room and even in the actual exam room.  I was pretty upset about what the scale said (but that's a vent for another post. promise.), but kinda blew it off.  whatever. It's just a number, Right?

Once I was in the exam room, Dr Stitt came in,  talked to me about what was going to happen, just to go over the details again and answer any new questions I may have come up with since I'd seen her last.  We talked, then she removed my Mirena IUD, the nurse gave me the lupron shot in my butt, and that was that.

I left with a prescription for percocet for the pain, which she assured would get MUCH worse, a prescription for Neurontin- a new drug that's being tested - it's actually a seizure medication, but has shown signs of being good at treating chronic pain, so she's trying me on that as well.  I also got a prescription for an anxiety medication, just in case I can't handle something (mood swings & all... and I need it anyway), a HUGE hug from Dr Stitt, and the thought that I could do this.

I've been very good at taking my drugs that are supposed to suppress the pain - the Neurontin (supposed to take it 3x/day) and Celebrex (2x/day), and also the hormone replacement (1/day), in addition to my sleep aids and my depression meds... I feel like I could open a full pharmacy for crazy ladies in pain over here!

Ok. So on to the real stuff. The side effects...  if you remember, there was a looong list of potential side effects from taking this drug:

burning/pain/bruising at the injection site, hot flashes increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, insomnia, reduced sexual interest, vaginal dryness, vaginal bleeding, swelling of the ankles/feet, increased urination, dizziness, bone thinning, depression, weight gain, anxiety 

Of these, so far, I've experienced the increased pain. lots and lots of it.  My feet have been swelling more, my boobs have shrunk and are now smaller than they've been since my sophomore year in high school (which might also have something to do with the fact that I just stopped nursing).  I'm not much more tired than usual, headaches aren't any worse, no acne... depression and anxiety are normal anyway... So really, the only thing that's bothered me enough to somewhat change anything I do, is the extra pain I'm feeling.  Because, seriously, with a list like the one above, I'm sure at least half of women who read that would come up with multiple symptoms they could claim, and blame it on the drug, rather than just deal with the fact that that's the way it is? make sense? (i know my caps & punctuation suck tonight. it's 3am. bite me.)  

But the pain. omg. I have literally been taking percocet around the clock.  I was given 40 pills that were supposed to last me 4 weeks... but the dosage instructions (and dr stitt) said to take one every 6 hours for pain. that would equal out to 4 per day, if it were a bad day.  those pills would last me 10 days.  So they were surprised when i called after over 2 weeks and said i needed more.  I had to go to an after hours clinic because they were closed and on call dr couldn't call anything in for me... so i got 15 more from the clinic, and then an rx for 15 more from the dr... should last me. 

But here i am, 6 days out (if you count today (thursday) and tuesday (my appt is in the pm), which i do), and have 5 total pills left.  I have been subbing in 800mg of ibuprofen when I can, but it doesn't do anything... This is so frustrating.  I don't even know what to do.  I'm going to call the office first thing in the morning and see if she can see me tomorrow or friday and go in then, and if not, just write me an rx to get me through the weekend... because i'm seriously dying here.  

I've been able to deal with my daily pain.  It hurts, but if I have meds, i can take them and deal.  Right now, I can't.  I HAVE to take the percocet, and even that barely takes the edge off.  I am so sick of my body not working right and being in constant pain...  physically, and don't even get me started on the emotional crap. 


Anyway, it's 3:16am. I think I'm gonna go forage for a snack and then try to read myself to sleep.  

loves... xoxo

My Battle With Pain: Part 2

I am so beyond frustrated today. I had my appointment scheduled with my gyn to get the first Lupron injection at 3:30. The Hubs was going to get off work early so he could go with me, and a friend was going to come watch the kids. I still had to go to the pharmacy to pick up the actual  shot (for some reason I had to get it as a prescription and bring it in to the office).  When The Hubs came home from lunch he said he should be getting off between 1 & 2, so I figured I'd have enough time to go to the pharmacy after he got home, and get back before we had to leave for the appointment.  Our friend couldn't be here until 3 anyway, which is when we needed to leave to make it on time. Well, The Hubs didn't get home until sometime around 2:30, which didn't leave enough time to get to the pharmacy (on the way off post), come back, pick him up, and make it to my appointment on time... and our friend was in a class, so she couldn't come early. I had to go alone. I may sound like a huge wuss, but I've been really apprehensive about the whole situation, and I really needed The Hubs to be there with me. Whatever.

So I get to the pharmacy around 2:45... figuring that 45min would be long enough to get the prescription and leave for my appointment. In the hospital here on post, when you check in at the pharmacy with an external prescription, they enter into the computer the medication, then give you a number. I waited. And waited. And waited. Finally, at 3:25 my number was called. I got to the window and was told that they didn't carry the hormone replacement medication she had prescribed me, (there are certain 'tiers' of meds that the military insurance won't pay in full, so you have to get them at a civilian pharmacy), and they were all out of the Lupron. Seriously. I waited for an hour & a half to be told that they didn't have what I've been waiting for. That the girl who entered it into the computer should have told me it was out of stock. I was livid.

I called the doctor's office (10 min after my appt was supposed to start) and told them what had happened, and the nurse was so sweet, and rescheduled me for this Thursday.   I'm really nervous to start the treatment, but it seems to be the best thing to do, so I'm diving in head first.

My Battle With Pain: Part I

My whole life, I've had pretty rough periods, and the older I've gotten, the worse they've gotten - heavy flow, bad cramps, mood swings, etc...  Since about 2004 I've been blessed (hah) with intense pelvic pain. Think menstrual cramps constantly, and during/after sex, and during periods, to the point of being curled up in a ball, unable to move. The only time it's gotten better is during pregnancy. Sounds strangely like endometriosis. Enough like endo that multiple doctors have suggested that's what it was, but couldn't make the solid diagnosis because a laparoscopy has to be done to diagnose.  Since I've mostly had crappy or no insurance since then, I'd never been officially diagnosed.

Jump to this past February.  Zadie was 7 months old, and the pain had returned almost full-force.  I was still nursing exclusively and had the Mirena iud, both of which should keep periods away, but my periods had started around 3 months after she was born.  I went in to see the midwives who discussed my options with me, and then sent me to see the OBGYN to discuss the surgery.  I finally had good insurance that paid 100% of the procedure, and was just excited to have the pain gone for a while. Imagine my surprise when I woke up from surgery and the doctor told me that not only did I NOT have endo, but everything looked perfect, and he had no idea what was wrong with me. He suggested just dealing with the pain, having whatever kids I wanted sooner than later, and having a full hysterectomy, and hoping that would solve my problems.

I was angry. I was depressed. I felt almost every emotion you could think of. When I followed up with my pcm, he said that he'd just had another patient who was dealing with the same symptoms, and he had an idea. He sent me to a vein specialist, who diagnosed my pain as a result of Pelvic Congestion Syndrome (PCS). Basically, he explained that the main vein connected to the left ovary (and they're not sure why it's usually the left) can somehow get damaged and the valves don't work right, causing backflow of blood into the pelvic area, and that causes pain. It has almost all of the symptoms of endo, but the only known ways to 'fix' it permanently all have high risk of causing infertility.

So I finally had a diagnosis. Sweet. You have no idea what relief that brought me.  Instead of just having the pain and not knowing why, I finally knew what was causing it, and I knew that there were specialists that dealt with this condition.  Not so sweet was the fact that I still didn't have the power to do anything about it, while still retaining my ability to have the rest of the children we want, when we want them. The outcome was still the same - have your kids quickly and we can fix the problem. 

When we moved here to Georgia, I was really frustrated with my medical experiences. The doctor we'd been assigned to here at the hospital on post (thank you, socialized medicine) sucked, and I had to jump through hoops to get assigned to another one. I finally got someone to refer me to an obgyn, off-post, so she was in a civilian practice, and she is AMAZING!!!!!!! The first time I met her, she gave me a huge hug, and talked to me like we'd known each other for years. She seemed to genuinely care about me, and was almost excited to have a reason to research PCS (she'd never had a patient with it, since it's a newer diagnosis). She told me to come back in 4 weeks, and in that time, she would be getting in touch with some other doctors she knew in Atlanta and DC, and would hopefully have some answers for me when I came back.

My return appt was last Tuesday. She said that of everyone she'd talked to, so far there are really only three options - either manage the pain with meds (usually narcotic i.e. Vicodin, Percocet, Lortab, etc...), the closing of the veins (different ways to do it - coil, cauterize, etc...), or put me on a drug called Lupron, which would basically put me into menopause for 3-6 months. It works by making your body overproduce estrogen, and when it realizes what's happening, it stops the production of estrogen, essentially allowing the reproductive system time to repair itself.

We talked and decided that Lupron would be the best choice for right now. I will be able to retain my fertility after treatment, and in patients that she's treated with it, for reasons ranging from endo, fibroids, cysts, or undiagnosed chronic pelvic pain, it's worked on every one to reduce or rid them of pain for at least a year after treatment.

I go in for my first injection tomorrow. I will receive one every 4 weeks, for 6 months, as long as I don't have any severe side effects after the first injection.

I am terrified. She gave me a few different packets of information to read, and I've been reading up on it online (sites like www.webmd.com, www.lupron.com, www.womenshealth.com), and also on forums where people have posted their personal stories. The possible side effects are staggering:
burning/pain/bruising at the injection site, hot flashes increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, insomnia, reduced sexual interest, vaginal dryness, vaginal bleeding, swelling of the ankles/feet, increased urination, dizziness, bone thinning, depression, weight gain, anxiety

Since I already have depression, anxiety, insomnia (explains why I'm writing this at 1am), I'm worried about how I'm going to feel on this drug. She said that my current symptoms (pain) will be worse for the first 3-4 weeks, but after that it should subside, but it will be bad enough that my current pain medication will not be enough, so she'll give me a stronger pain treatment to help me cope.

I really hope this works. I hope i don't go crazy. I hope it is the best thing for not only me, but for my family. I don't see any other option than to do the treatment. I'm just scared...

Also, The Hubs leaves in less than 2 weeks (Sept 12) for at least 2 months. He's going to training called Ranger School, which is 3 phases of about 20 days each. If he completes each phase, he will get an 8 hour break before the next phase starts. The first phase is done here on Fort Benning, so he'll be able to come home after that one, but after the second, he'll be either in north Georgia, or in Florida, so we'll just get to talk on the phone. Those 2 days will be the only times we'll get to talk the whole time he's gone. Also, if he doesn't pass one of the phases, he has to recycle, or repeat the phase, causing him to be gone 3 weeks longer. He'll miss my birthday, and if he recycles, Thanksgiving as well. So I'll really be a single mom for 2-3 months. The kids & I are planning a trip out west to visit family in Colorado, Utah & Vegas while he's gone, but I'm SO dreading this time apart with no contact. And I'm wondering what that, in addition to the menopausal side effects of the drug, are going to do to my mental state... Oh, this crazy life.