Monday, August 30, 2010

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,,, 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.