Pausing for Six Months

Follow Me Over Here, Okay?

2009-10-26T15:18:00.000-07:00

Hello, and apologies for the lack of updates!

I've been using mymedworld.com for most of my updates, and I should have reminded you.

Mostly I want you to visit because it's a great site. It's social-networking for your health concerns. Set up an account and share your info, because someone out there is looking for your experience.

Now go read my latest journal post there at: journal entry.
I'm about to leave menopause, and you won't want to miss that.

Physical Therapy and My Med World

2009-09-10T12:58:00.000-07:00

Hi there. Please read my post here about my first physical therapy appointment.

While you're there, take some time to visit the site. It's a great new site to help friends better understand their health. I support it and would love for you to do the same.

Thanks!

Physical Therapy Starts This Week

2009-09-07T19:58:00.000-07:00

I will have my first physical therapy session on Thursday. I have no idea what to expect.

In the past week, the pain has been a little better. I've had some bad days, but I've also had a few days where the pain didn't come on until 4 p.m. I think that dropping the norethin add-back has helped.

I'll let you know what happens at therapy.

Welcome Back, Menopause

2009-09-01T19:55:00.000-07:00

I forgot to mention in my last post that Dr. Nath also recommended that I drop the "add-back" that was part of my therapy. I was taking Norethindrone Acetate to help curb some of the menopause symptoms. It totally worked; when I started it in May, the menopause symptoms subsided.

But she was worried that the hormone production it encouraged was hindering my treatment, so we dropped it. I haven't taken once since last Thursday (5 days) and wow, can I tell. Two nights ago, I woke up in night sweats, followed by shaking chills. Tonight I've been sitting with an icepack on my neck and my heating pad on the pained abdomen.

Yeah, about that pain. I've had it everyday, ranging anywhere from mildly annoying to doubled over in pain. Today it felt like I have my period, with the pelvic pressure, cramps, and irritability. But no bleeding of course.

My estrogen level came back at 13, which is super low and proves that my hormones are suppressed. I am waiting for an authorization for PT to start.

In the meantime, I have hot and cold going on here. Welcome back, menopause.

Most Recent Doctor's Appointment

2009-08-29T11:44:00.000-07:00

Before the appointment, my husband kept reminding me that the pain wasn't going to be solved in the doctor's office. We were just going to discuss the next course of action. But I expected something different than what occurred.

Dr. Nath asked me what I had been feeling. I told her that I was back to daily pain, distracting fatigue, and pain with intercourse. She listened, paused, and said "I think you need physical therapy."

I blinked. What? Did I say anything about back pain, muscle pulls, or pinched nerves? I said that my girl parts are causing me pain. And you want me to go do some stretching?

Then she said the sentence that made me cry, and that she restated much better later in the visit: "I don't think that the pain you're having is from endometriosis."

I think all of the air was sucked from the room. I was crying, my husband looked shocked, and I felt we had been whisked back to January of this year, when no one knew my diagnosis. Then we let her continue to talk.

She said that the pain cycle certainly started with the endometriosis. But then my neural pathways became programmed for pain, and when the endometrial tissue was removed, the messages to my brain were still sending pain messages. So the physical therapy would help reset my neural pathways. She knows of a clinic that specializes in chronic pelvic pain.

If the PT didn't work, then she suggested we try accupuncture. If that didn't work, then maybe some Chinese medicine. But she is convinced that my hormones are suppressed by the Lupron, and that the endometriosis tissue has not grown back. She thinks we need to widen our view from the narrow window of western medicine.

Ok. I am totally willing to try PT. I will try anything that will help the pain. But what I hear when she says that my neural pathways are confused is this: "It's all in your head." I know that is not what she said. I know that's not remotely what she said. It's just what I hear.

Also, I did have three months free from pain. What was going on with my pathways then? And I have a psychiatrist friend who says that six months of pain doesn't re-program your neural pathways.

She did order bloodwork, to find out if my hormones truly are suppressed right now by the Lupron. We should know Monday if my hormones look like a menopausal woman or not.

Anyone out there have experience with this? Do you buy it? Am I just looking for an "easy" fix and so am disappointed in her answers? Or do her answers leave you puzzled as well? I welcome any feedback you have.

Welcome Back, Old Friend!

2009-08-24T10:33:00.000-07:00

Ok, so here's the latest and greatest, everyone.

Menopause seems to be M.I.A., but Endometriosis is in full swing. Hot flashes are long gone; daily pain has checked in. I'm starting to think that the second Lupron shot was a dud, as I've seen no significant change since I got it two and a half weeks ago. I'm going to see Dr. Nath on Friday to figure out what we do next, since spending the day with a heating pad and Vicodin is not what I like to do.

But guess what! There is one little friend who is back and I did actually miss, and that is Lack of Appetite! I know that I shouldn't be excited about this. I know that healthy eating is better than no eating. But I'm walking three miles a day right now with no weight loss. (Damn you, Lupron.) But when I was sick and had no appetite (and did no exercising) I lost 20 pounds. So maybe there will be some change now. Let me enjoy the little benefits to being sick, ok?

Working With Pain

2009-08-17T20:51:00.000-07:00

I started a new job two months ago. I love it. They seem to be happy with me, too. I've done well on the assignments I've been given so far, and I feel I've already contributed to the team.

And now my bitchy friend Endo is threatening to rear her ugly head. Here's the thing: no one will ever be able to convince me that my Endo didn't play a part in me losing my last job. It's ridiculous, I know. The company laid off 5% of its staff the day I got laid off. They eliminated my position, meaning they can't hire someone to replace me. They merely decided the position was no longer needed.

But what part did my illness play in that? I was on medical leave for three months. During that time, didn't I show them that they could get by without my help? Didn't I prove that my position wasn't needed?

I guess I don't fully believe it, because I didn't take any legal recourse. I signed separation papers to the effect that I didn't hold them liable for any bias in my termination. But how could they not be biased?

I started having pain in November, and I was out for one week. We thought it was stomach flu, and I stayed home. Then a few weeks later, it was clear that it was not flu, and the ER doc gave me a prescription for Vicodin to help me manage the pain. I needed the Vicodin for 4 and a half more months. In January, I tried to work through the pain. I worked from home a lot, or had to leave in the late afternoon so I could go home and take a Vicodin. In early February, I followed the advice of my doctor (who believed at the time that my body was just stressed-- see here) and was going to take a week of sick leave. Work told me I needed to go on short-term disability. I know a lot more now than I did then, so I don't know if I would have given in as easily as I did. But I also know that for the next few months, my job was to get better. And I was lucky to have a paycheck while I got better. But work had to go on without me, and figure out a way to do that. When they successfully managed that, it wasn't too hard to figure out whose job to cut at the time of lay-offs.

And on my end, even though I was getting paid, money was still extremely stressful. I wasn't getting my full paycheck, because I couldn't get approved for official short-term disability. I didn't yet have an actual diagnosis, so I was on voluntary medical leave, which provided only 60% or so of my salary. I ended up getting back pay when my diagnosis finally came through, but the interim was very stressful.

Anyway, my lap happened, I was diagnosed, and the pain went away. Yippee! I called work with a Return to Work date, and was very excited to get back to it. I was worried my mind was turning to mush, that I was only identifiable through physical problems, and that my business skills were lacking. I couldn't wait to get back to working.

And a week later, they laid me off. Ouch. My scars were still wounds! I wasn't even due back to work until the next week. Legally, they could lay me off while I was on leave, because the CA Notification period extended past my Return to Work date. Personally, it sucked.

So fast forward, and I found a job (paying more!) two weeks later. I had two more weeks off, and started at the job June 8. I had no pain, vastly improved energy, and a new, positive outlook on life. I was so grateful for everything. I AM so grateful for everything.

But just two months later, I'm having pain and fatigue again. The fatigue is what is so depressing, oddly enough. I hate the pain, and all that it keeps me from doing. But the fatigue seems unfair. I'm in pain-- do I really need to be exhausted, too?

And here's the thing about this new, better-paying job: I love it. I absolutely love it. It's a great fit, culturally, personally, and professionally. I am working on really fun projects, have a great boss, and am making friends in the office.

So if Endo gets in the way of all of that.... I don't know. I don't want anyone at work to know the pain and suffering I have going on. I don't want to be known as the sick girl. Or worse, as the girl who takes sick days. I want to be well, and do well, and impress my boss and colleagues. I don't want to work through this again. And I definitely don't want to lose any more opportunities because of this.

Lupron Side Effects

2009-08-14T16:22:00.000-07:00

There are women on-line who will tell you that Lupron is the worst thing to have ever happened to them. I think they hate Lupron more than they hate their Endometriosis. I'm not one of them.

I had very few side effects with my first shot. In fact, I'm not sure I had any side effects. I had the effects of menopause, but that is intended. I had trouble losing weight, which was surprising since I started walking 15 miles a week. But since some women say they gain 40 pounds on Lupron, I guess I'll be ok with maintaining my weight.

But lately, I've noticed the dizziness that some women have reported. Oh my the dizziness. I am sitting at my desk right now, feet firmly planted on the ground, and I feel like I am standing on the ledge of a 75-story building. And can someone PLEASE stop shaking this very tall building? There's a woman standing on the ledge, after all!

Sometimes the dizziness is while I'm walking down the street, and I wonder why no one else feels the damn street shaking. This side effect can go away any day now, thanks.

New Site- Will Still Post Here Too

2009-08-13T20:32:00.000-07:00

Hello to the three of you who read this.

There's a new site I love: www.mymedworld.com. I have a journal there, under "Sandra." I will be posting there regularly.

To let you know what's going on though, I have had my second Lupron injection, which can't start working soon enough. I've had pain almost every day now for more than a week. I don't have it all day, and ibuprofen takes care of it. (Have only taken one Vicodin.) But it's there, and it scares me a little. I don't ever want to be back where I was six months ago.

So come on, Lupron. Do your stuff.

Can't Wait For Tomorrow

2009-08-06T11:23:00.000-07:00

I have never in my life looked forward to a shot before. But tomorrow's Lupron injection can't come soon enough.

This week, the old recurring pain has been around a lot. Last night, it felt like it used to feel: lying in bed, trying to fall asleep, unable to sleep on my stomach. The hopelessness threatened to come back too, but I clung to the hope of the upcoming shot.

I spoke to Dr. N yesterday about the pain, cramps, etc. coming back. She thinks that, based on what I've explained, the last Lupron shot likely started to wear off a few weeks ago. So she's also glad that I'm getting another one tomorrow. But since six months is the maximum time you can take Lupron, she's concerned about what we'll do when I'm done with this next round. She thinks we'll put me back on the Pill, and maybe start it in two months. The Lupron is supposed to last three months, but it obviously isn't for me.

If the Pill therapy doesn't work, then we might have to get more radical. We'll burn that bridge when we get there.

Cross your fingers that this injection wipes me clean of any endometrial cells. Come on, big needle!

Two Days Until Next Lupron Shot

2009-08-05T10:42:00.000-07:00

I'm gearing up for the next injection. I think I am really looking forward to it, actually. Lately, the pain has been a little more common than I'd like, as have been the cramps. I was starting to think that my menopause was done until the next shot, but I've had a couple of hot flashes this week, as well. Yesterday, my whole face was flushed for about an hour. I was cold in the rest of my body, but my face felt white hot.

And then last night the mood swings came back. I was having an excellent evening. Tired, but otherwise I was fine. Then an emotional topic came up and I was overwhelmed by depression. I cried for the first time in months, and the crying felt really good. Like I just wanted to give into it and keep crying.

I have a call in to my doctor, to discuss with her if this is all normal, and if the Lupron shot will help get me back on track. Primarily, I want to know if I should still be having pain. I'll let you know what she says.

Hello, Newman

2009-07-23T15:49:00.000-07:00

And there it is again, that pain. So much for boring.

Actually, this past month has been a bore, as far as menopause goes. I had one more hot flash, just before my 34th birthday. (On my birthday? Can't remember. Ah, the memory is the first to go!)

Other than that, there haven't been many problems. No mood swings, no meanopause, no complaints. Yes, there was that pain back a little while ago.

And now again today. It's so familiar and brings such despair with it. I know, based on last time, that the ibuprofen I just took will help. I will not (most likely) spend the evening curled up in bed with a heating pack on my tummy.

And it is a good reminder why Dr. N's nurse and I just scheduled my next Lupron shot. My damn hormones are robust and determined, and we need to beat them back so they stop with the tissue production!

My New Goal is To Bore You

2009-07-06T15:31:00.000-07:00

When I started this blog, I wasn't sure what I would share with you. I was prepared to share horror stories of what Lupron was doing to me, as well as (hopefully) humorous stories about my menopausal rage and mood swings. I wasn't prepared for this to be the most boring blog ever.

And yet, I am thrilled to be boring you! I am thrilled that I don't hate my husband, and that my menopause symptoms are minor. I'm over the moon that I have very little pain to report, and that I've only had two hot flashes. But, I have no good stories for you, and I'm very sorry for that. But I'm also very happy about it.

Ok, since you stopped by, I'll share one somewhat unrelated story so that you don't have to leave empty-handed.

I've been suffering from flu for the past five or six days. Yesterday, I just didn't feel like it was making any progress, so my husband and I went to the weekend clinic at my doctor's office. (They gave me antibiotics and nasal spray, and I'm feeling a bit better 24 hours later.) But during the exam, the nurse asked me when my last period was. Hmmm, good question. I told her about the Lupron, but I don't think she knew what it was. So I said, "Well, the shot they gave me in May put me in early Menopause, so I haven't really had a period since then, but intentionally." She squinted at me. But then I remembered: "Oh, except I did have a sort of period for about 8 days, and I guess that was a few weeks ago. Was that really a period, though? I guess it was. I'm not sure."

And she looks at me, totally blank, and says, "I just need to know if you think you could be pregnant."

"Oh, right!" I say. "Nope, that would be a miracle, my doctor says. So I really don't think so. Um, doubtful, anyway."

I have no idea what she wrote in my chart.

You Again? Really?

2009-06-28T11:57:00.000-07:00

Ugh. Last night, I spent about two hours in that old familiar pain. This time, Tylenol kicked it for me (woohoo for over-the-counter drugs and no narcotics!) but it was an unpleasant couple of hours. It reminded both me and my husband of what we used to live with on a daily basis. We both knew last night, though, that it was temporary. That knowledge made it much easier to deal with. That was something we never had this past winter.

It was also a good reminder of why we deal with the Lupron/menopause/random spotting and cramping of these six months. We don't EVER want to go through days, weeks, or months of that pain again.

Has the Menopause Paused?

2009-06-21T11:35:00.001-07:00

Most days lately, I don't feel like I am in menopause at all. No more hot flashes, mood swings have leveled out, depression is managed. Oh, and that pesky period shows up now and again. Sometimes I just have a few hours of bleeding, (like last night) possibly accompanied my cramps (like this morning.)

But I'm not complaining. I didn't enjoy menopause symptoms. And the other night I had about an hour of the old abdominal pain, and I remembered how awful and hopeless I felt for so many months. So menopause or no menopause, some bleeding and some cramps... whatever it takes to keep that awful pain from coming back, I'll put up with it.

Surgery Was 54 Days Ago

2009-06-15T21:19:00.000-07:00

My last "dissolvable" stitch came out last night.

On another note, the menopause menses continues, with her normal, vindictive vengeance. It's now been seven days.

Robust Hormone Supply

2009-06-12T20:50:00.000-07:00

This is what Dr. N told me today, to explain my (very heavy) period. "You must have a very robust hormone supply." She also said "Well, aren't you the very complicated gyno patient?"

I try folks, I try.

Now I'm working out how to turn my robust hormone supply into some green energy.

Caution, Boys: This One's a Girlie Post

2009-06-10T20:42:00.000-07:00

I'd always assumed that in exchange for hot flashes, irritability and mood swings, I would enjoy the real benefits of being a woman in menopause. You know, like an AARP discount, preferential seating on the train, cheap coffee at McDonald's, and NO PERIODS. Has my menopause come with any of this? NO, it has not.

If you aren't on Lupron and haven't had a hysterectomy, then the medical community defines menopause as 12 consecutive months without a period. But if you are on Lupron, you are apparently grandfathered into the club: no 12 month waiting period, no entry fee. No need for birth control, no menses, no mess. But not so much for me.

Today I was at work (thank you very much! I have a new job!) and noticed cramping. Menstrual cramping. I dismissed it because maybe that happens occasionally on Lupron. (To hear some women on the interweb tell it, I'm lucky I still have my memory and haven't grown a tail since my first shot.) But then during a restroom break, who did I find visiting? My Aunt Flo! What the hell was she doing there? She's supposed to be on a six month vacation.

That bitch is so mean and so unpredictable. She just showed up without warning, without a phone call, without a knock on the door. And who knows how long she'll stay? I don't think guests (especially uninvited ones) should show up without letting you know how long they'll stay. She used to be pretty considerate. Before my surgery, I had a little spotting between periods, and that was useful because it helped diagnosis the endometriosis. But other than that, I had nice, short, light periods of about 2 and 1/2 days.

I suspect she knows that Dr. N and I were kicking her out for a while, and she got pissed. So she's back, and with a vengeance. Bitch.

I'm Back!

2009-06-06T20:00:00.000-07:00

Hi folks! My husband and I just returned from a fabulous 5 night trip to Moloka'i, Hawaii. It was quiet, peaceful, and exactly what we needed.

Moloka'i has a population of less than 8,000 people. It is 40 miles long and 10 miles wide. There are no stoplights or fast-food restaurants. It was paradise.

Also of happy note: I have been basically symptom-free for nearly two weeks. I had a little spotting while in Hawaii, and I'm not sure if that's normal or not. But it was so slight, I wasn't worried. But no hot flashes (thank goodness, because it was already very HOT in Moloka'i) and very little irritability.

If this is menopause, I can handle it.

Meanopause

2009-05-28T21:20:00.000-07:00

My friend just said "Maybe we should call it 'Meanopause.'" Do you think she's implying that I'm being a bitch?

Pausing for Thanks

2009-05-27T17:50:00.000-07:00

The past five days have been busy, busy, busy. And I realized today, sitting here exhausted from all of the fun that I've had, that it took me five days to get exhausted.

From December through April, it took me about 30 minutes to get exhausted. Just yesterday alone would have done me in back then. Here was the day:

7 am Up with Hubby and made his lunch
8:45 Out the door with our visiting Aussie friends to get up to Napa early
10:15 Made it to Napa so early we hit the outlet mall
12:30 First winery
1:30 Lunch at Cuvee in Napa
2:30 Second winery
3:15 on the road to SF to find extra special soccer shoes destined for Australia
4:30 Circling Niketown in Union Square while Aussie friend buys extra special soccer shoes
5:30 Back in Mountain View to meet up with Hubby
6:15 Out the door to dinner
9:00 Back from dinner; uncomfortably full

I could never have done even a third of that before my surgery. And that was just one of the past five days. I love being well!

Second Hot Flash-- I Hate These!

2009-05-25T22:24:00.000-07:00

I should be counting my blessings that this was only number two, but OH. MY. GOD. These suck. My face was burning, I had a bag of ice from the freezer, and for a moment, I actually had my head in the freezer. Seriously? Is this necessary? What biological or evolutionary need does this satisfy?

The Monster Within

2009-05-23T09:34:00.000-07:00

So far, I've had it really easy with menopause. One hot flash? Fine. Hating my husband? Nope. But irritability? Oh hell, yeah.

I've never suffered from PMS much. I've been on the pill for so long that I have to think back about fifteen years to remember real PMS. You know, where you cry for no reason, don't want to talk to anyone, and find yourself to be the ugliest person alive. But menopause is bringing it out in me. I haven't cried much, though I feel like I could (and should! You know that pressure behind your eyes where you just want to put on ET and cry your eyes out?).

But more than the occasional need to cry, I am feeling irritable. I don't want to write about it too much, because so many of the great friends I see on a daily basis read this. And I'm not necessarily irritable AT them, just near them. And considering that they like me as I am right now, I'm a little worried about making them NOT like me if they see what a bitch I feel like in my head. I'm not annoyed at things they say or do, I'm just annoyed. Annoyed. At nothing. And all I want to do is sit on the couch and read, or maybe just not move an inch because if I do move, I might bump into something that will then deserve my wrath.

Example: my kitchen is small. For someone who likes to cook, this is tragic. But I've been living with a small kitchen for three years now and had become used to it. I'm used to limiting what small appliances I can have because I don't have storage for them. (Goodbye, bread maker and waffle maker. I hope you went to good homes.) I'm used to the fact that I have to move the trash can to load and unload the dishwasher. I'm used to the lack of counter space. Or at least, I was, until my friend Annoyance moved in. Now I put off unloading the dishwasher. And when I finally can't find a clean coffee mug (and oh my word you don't want to see me without coffee these days) I give in and empty it. So I move the trash can, lower the door of the washer, pull out the racks, and start emptying. But with the dishwasher door open, I can't reach the high shelves above it to put away the big pasta bowls. I have to put the racks of the DW back in, close the door, then stand in front of DW to put bowls away. Such a travesty, I know. Three weeks ago, this was not even a minor annoyance. Now when I do it? I sigh heavily. I throw the bowl onto the counter. I slam the door shut. I wonder (aloud, to myself) "Who the HELL thought this was a good kitchen layout?" The dog hides in the bedroom as I slam the cupboard door. Then I throw the DW door back open and finish unloading. And if I had missed one of the bowls and have to do it all over again? Well, then I usually give up, stomp back into the other room, and take solace in Buffalo Ranch Doritos.

I do this when I'm alone. I haven't subjected my husband to it. I haven't let my friends see the steam come out of my ears. I separate myself from the group when I feel the green monster within me coming out, and keep this all a secret. I only share it with the interweb.

I know it isn't all that bad, in reality. I haven't thrown anything at anyone, haven't yelled at anyone (though I use road rage more productively now, to channel Annoyance) and don't think that anyone around me has noticed anything. But I'm not willing to take chances. I'm keeping the monster inside.

Four Weeks Later: Post-Op Appointment

2009-05-20T19:50:00.001-07:00

I had my diagnostic laparoscopy four weeks ago today, and on that day was finally given the diagnosis of endometriosis.

Since then, my husband and I have moved, I was laid off at work, I started Lupron, and I got a new job. Sounds so simple, doesn't it? I can't believe all of that happened in just four weeks. I have such a different life now.

I saw Dr. N today, for the post-op appointment. We discussed my recovery, the move and the job changes (she's a very thoughtful doctor!) and the Lupron. The recovery was pretty standard, and she likes how my scars look. One has a little stitch that still needs to dissolve, but other than that, no problems. I told her that the move went very well. And then we talked about the Lupron, and the new partner in my life: menopause.

For the most part, menopause hasn't been too bad. Yes, I have some mood swings. Sometimes I want to crawl out of my own skin. I have some back pain, some joint pain, and some cramps. But those last three complaints are so minor that I sometimes feel like I wouldn't even think of them if I weren't paying such avid attention to my body. The one thing I do feel a change in is my depression level.

I've lived with a little bit of depression for six years. I've been on Prozac, though, and that has always done the trick. I tried to go off of it back in Chicago a few years ago, but it just didn't go well. So various doctors have thought that there is a chemical imbalance in my brain that needs a little Prozac. I take a low dosage every day, and it keeps me from sitting on the couch all day, feeling sorry for myself. But my little bit of depression had no idea that it was about to collide with menopause. (And why would it? I'm 33!)

I made a decision not to write about my depression initially. I thought that I wouldn't need to, and didn't want to throw in any other crazy health issues with this blog. I also haven't written about the impact of the Lupron on the depression, even though I had noticed it. It's just not fun or funny or something I can be witty about. So I guess I just have to be honest about it.

I've had some incredible highs the past month: getting a diagnosis after so many months of uncertainly, getting pain relief after months of pain, and getting a job two weeks after getting laid off. Since the Lupron shot, though, each high seems to be followed by a harsh low. During those lows, I'd really like to just stay in bed, or sit on the couch, or just not talk to anyone. It doesn't happen every day, and it certainly isn't debilitating. But it is a change, and it scares me.

So I mentioned it to Dr. N today, who agreed we should increase the Prozac dosage. She also said we could add a tiny estrogen supplement to my daily regimen, but that could decrease the effectiveness of the Lupron slightly. I'm not willing to chance that yet, since I'm not lying in bed all day crying or anything. We'll give this new dose a chance and see what happens.

I told Dr. N that she's a rock star who has improved my quality of life significantly. She hugged me twice during the appointment, and wished me the best of luck. I have a few weeks now before I start the new job, and in that time I'm headed to Hawaii for a few days with my husband and adjusting to the new Prozac dosage. It's been a good four weeks and I just hope the same for the next four.

Two Weeks In

2009-05-18T16:17:00.001-07:00

Two weeks ago today, I had my first Lupron shot. I still seem to have just one head, no tail, and normal-colored skin.

I also continue to be thrilled at how amazingly good I feel. I have very minor twinges of pain, and those are treatable with Ibuprofen. I love being narcotic free. And (I really didn't expect this) I have three times the energy that I had December-April. Seriously, I slept half the day away back then. I'd go to bed around 11:00 and, if was lucky, got out of bed by noon. I was just always tired. Maybe I was sluggish from the Vicodin. Maybe it was just the fatigue that Endo can bring. Either way, I have none of that now. I get up at 7:00 three days a week with my husband, and usually by 9:00 the other days. I get more done in a day now than I did in three days before.

Yes, I am feeling a swell of depression sometimes, along with those nasty mood swings. But they are minor and manageable. The pain I had before was neither minor nor manageable.

So far, I'm happy with the Lupron!

Best Left Alone

2009-05-16T20:38:00.000-07:00

Hello, interweb. I'm only here for a minute, because I really don't want to talk. To anyone. OK, I do still want to talk to my husband. But other than that, I'd like to be left alone to sit by myself.

Is this hormones? Or just my natural tendency to need alone time every now and then?

(Crawling back under my rock now.)

Street Rat Crazy

2009-05-13T22:39:00.000-07:00

We just saw a Jack in the Box commercial that shows a menopausal woman all happy and picking roses because of the new smoothies JITB offers. The creepy big JITB head says she won't go "Street Rat Crazy" now. OH. So that's all I need to do: drink a smoothie. Sweet.

You Wouldn't Like Me When I'm Angry

2009-05-11T22:48:00.000-07:00

Is it starting? Not sure, but a combination of factors just turned me into a bitch (at least in my head-- I didn't act on any of the ugly thoughts I had.) The new laptop I've been working on decided the wireless switch wasn't on. (But it was.) The neighbor is having a very loud party. (On a Monday night.) And horror of horrors, my husband had turned on an annoying show about magic, at a volume which he and our friend found acceptable and I found UNacceptable. Suddenly the world was loud, annoying and without the interweb. I contemplated hurling the laptop through the TV to shut up the magician with the monotone. Of course, then I would still have to deal with the neighbor.

I left the room while my husband fumbled with the laptop. While in the bathroom, I wondered if I would be more annoyed to re-enter the room and find the laptop still not working, or if it would be worse that my husband had figured it out for me.

What? I was annoyed the laptop wasn't working, but was going to be more annoyed that HE fixed it? No! That doesn't make any sense. An hour earlier, I had him help me put together and take apart the power drill. He fixes the computers, the wireless modem, the dishwasher, and anything else I just can't figure out or deal with. His willingness to help, to step in, to take care of it is fabulous and saves me many gray hairs.

So was my sudden mood change fatigue from a busy day? Or was it the Lupron? I really hope that this isn't a sign of things to come. I love my husband far too much to be annoyed with him. And as you can see, the wireless is working just fine now.

Happy Mother's Day, To All Kinds of Moms

2009-05-10T21:47:00.001-07:00

I found out I have endometriosis because I had five months of disabling, drive-me-to-narcotics abdominal pain. I am going through this Lupron treatment to make sure my pain is gone for a while.

But a lot of women find out that they have endo because they are infertile. To those women, I send out a virtual hug. My husband and I have not decided yet whether we will have children, and I'm fortunate that we found my endo the way we did (painful as it was) and not through a struggle to get pregnant.

Who knows what waits for my husband and me in the future? But to all of the women who are moms, or who want to be moms but are struggling with endo, I send out interweb love to you today.

Symptom Alert: My First Hot Flash

2009-05-09T23:51:00.000-07:00

At the tender age of 33 years, nine months, and I don't know how many days, I experienced my first hot flash.

We were playing cards with our friends and all of a sudden someone had turned up the temperature to an uncomfortable level. I took my socks off, drank more water, and tried to ignore it. Then I felt like I could have just stripped my clothes off, but it wasn't that kind of card game.

My face was on FIRE. We took my temperature (mostly because these friends just got a fun new thermometer; oh the FUN we have on Saturday nights around here!) and it was only 98.3. Within a few minutes, most of my body felt cooled down. Most of it. My face was still burning. Now 30 minutes later, I feel like I got a bad sunburn today, but I'm still pasty white.

So then I started to worry. I love the sun. I spend a good part of my summers at the pool. I invariably get at least one sunburn a summer (Yes,I use sunscreen. Yes, SPF 8 does count as sunscreen.) What will a real hot flash (because I think this was just a beginner one, to ease me in) feel like with sunburn? Crikey.

Day 5: The Eating Switch

2009-05-08T11:05:00.000-07:00

"It's like I flipped the eating switch, and I can't flip it back."
-Jenna Maroney, "30 Rock"

During the five months that I had daily abdominal pain, I also had nausea and decreased appetite. Somedays I could eat three small meals, but most days I barely ate two. There was just no appetite there.

My appetite had always been with me before, but during those months, it vanished. My whole adult life I've been trying to lose weight, but suddenly I was dropping pounds effortlessly. In three months, I lost twenty pounds, and it certainly wasn't because I was exercising. I was sedentary, actually. Exercise hurt, and even running more than a few errands a day hurt. A big day was making it to Target and the grocery store. (I've since learned that endometriosis pain is worsened through not just exercise, but also normal daily activities.)

What was different was my food intake. I rarely ate breakfast, and most days not even lunch. I looked forward to dinner, since that was the only time of day I had any appetite. I love food and love cooking. Love, L-O-V-E, love. So I tried to make great dinners and try new recipes. I became obsessed with dinner. I would spend hours looking up new recipes to try. When I finally got to eat dinner, it was often the highlight of my day. There were a few days that I ate lunch (maybe meeting up with a friend, or going out to lunch with my husband) and then I couldn't eat dinner. I haven't heard of this symptom being common with other endo patients, but I think it just went hand-in-hand with the pain.

Well, now I don't have much pain to speak of. (I've had a couple of busy or active days when I feel some pain, but I can take two Ibuprofen and it's gone.) What I do have is an appetite. I eat three meals a day now, without fail. So far I haven't gained back much weight, but I'm terrified that I'm going to. This week I've been busy and walked at least 1-2 miles every day, so I'm glad for that. But next week I'm going to start exercising again. It will have been six months since I last exercised, so I'm a little nervous about the fitness of my body. But I'm excited to try this thing out and see if it still works.

In the meantime, I will try not to eat the contents of our kitchen for lunch.

***

By the way, an anti-aging cream commercial just came on: "You may not be able to control menopause, but you can control the way your skin reacts to it."

My husband said "Are you listening?"

"My skin's going to sag? Seriously?"

I mean, seriously?

Day Three: Symptom Watch

2009-05-06T21:25:00.001-07:00

A few cramps, and a backache. I still love my husband.

It's Not You, It's Me

2009-05-06T14:25:00.000-07:00

Dear Dr. C.,

I'm writing to let you know that our relationship is over. I know that we have been Primary Care Physician and Patient for three years, but I think we both know the relationship has run its course.

We've spent a lot of time together during the past six months, and it has become clear to me that we are not right for each other. I need a PCP who is proactive, resourceful, and intelligent. You need someone who doesn't expect answers to medical questions. I think you would also benefit from someone who appreciates quick, thoughtless answers. (Remember when I came in to see you in December of last year with my first complaints of abdominal pain? You diagnosed stomach flu within 3 minutes. And then the next week, when I was back, and you said it was from a microscopic kidney stone, even though the urologist disagreed?) I'm sure there's someone out there for you who finds such quick judgements endearing. I've just learned that I prefer doctors who listen and then, after careful consideration, have a discussion with me.

Yes, I've been seeing someone else. She's my Ob-Gyn. Before you get upset, please know that my insurance company has completely approved of the relationship, even without a referral. And she makes me so happy! She performed laparoscopic surgery two weeks ago and I've been 99% pain free since then. We have a six-month plan together, in fact, to make sure that this happiness lasts. I'm sure you'd like to see me happy, right?

This is not an easy letter to write. I have given this break-up a lot of thought. But yesterday, when I learned that you filled a prescription for a drug we've never discussed, just because the pharmacy used the wrong generic name, I realized I had to do this. I can't run the risk that you will make a larger mistake than that in the future.

I wish nothing but the best for you in the future. Maybe you can subscribe to a trade journal, or take a new class to learn more about diagnostics. I think that would be really good for you.

I'd like to say that we could remain casual, and that I would come to see you for a sore throat or a migraine, but I think we both know that isn't a good idea. Please know that I will always appreciate that you taped pictures of your vacation destinations to the ceiling above the exam table. That was always such a nice touch.

My best to you,

Vander

Day Two: Researching On-Line

2009-05-05T15:46:00.000-07:00

Day two and I feel good. That left bum cheek is a little sore, but that's what happens when you get stuck with a big needle.

I got up with my husband today at 7 am to get a jump on the day. I've felt tired, but that's likely just because this is the first time I've been up that early in months and it wasn't for a doctor's appointment or procedure.

I've been doing some research on-line about Lupron. There is a lot of controversy out there on the interwebs about it. Hoo-boy. Reading some women's accounts was scary. I'm trying not to read too much about it, because I don't want to freak out. But at the same time, I want to be informed and know what's going on with my body. The main thing I keep reading is that Lupron causes a wide variety of reactions in women. Some women have night sweats and hot flashes, some women have major depression, and some women blow up the local Blockbuster when "Sex and the City" isn't available for rental. OK, that one hasn't been documented. But I've read more than a few testimonials that say "If I knew then what I know now, I never would have had the shot." I think it's a good thing I didn't see any of that until after my shot.

Day One: First Lupron Shot

2009-05-04T23:33:00.000-07:00

Today was both my husband’s birthday and the scheduling of my first Lupron shot.

When Dr. N suggested that we do this treatment, I asked her what the side effects would be. Dr. N doesn’t mess around with the negatives; she lays it out in the worst possible scenario possible. She did this for the surgery, so I was a little used to it. (She was discussing the risks of the surgery, and said “Well, first of all, I could cut an artery. That would be a disaster. You’d be bleeding all over the place, we’d transfer you to the hospital in an ambulance, and your life would be changed forever.” Ok, so there’s a possibility.)

About Lupron, she said, “Oh, it will be awful. You’re going to cry, have mood swings, get hot flashes, and hate your husband.”

So maybe starting this treatment on his birthday was odd timing.

Anyway, I had to go in to Dr. N’s office for the shot, but I wasn’t going to see her. I wasn’t terribly comfortable about this, as I still had some questions. I’d read on the interwebs that even though Lupron causes menopause (which literally means “end of all normal female sex life stuff”) some women still ovulate and have even become pregnant. We aren’t sure if or when we want a family, and I know that being on Lupron is not great for babies. So let’s make sure there’s no pregnancy happening in the next six months, ok?

Before I got in the room, I was reminded once again that many of Dr. N’s patients are not as hesitant on the baby thing as I am. Five pregnant women sat in the waiting room with me, and one of them parked her stroller in the stroller room. Not kidding, they have a stroller room. All of the magazines are baby-related. All. Of. Them. Not even a “Good Housekeeping” from 2007.

OK, so the nurse called me in, and I gave her my list of questions and was told Dr. N would call me later. Then the nurse told me to pull down my pants a little, turn around, and bend over. (Offer to buy a girl dinner first, geez!) She asked me which cheek I wanted it in, and I made a lame joke about not being right-butted or left-butted. She didn’t laugh, and I think she thought I was serious. But she did compliment my tramp stamp, so that’s something.

And then she said “You’ve had this shot before, right?” No, this is my first time. “Oh, well then this is going to hurt.” As my friend Dan said, they were putting three months of menopause into me, damn straight it was going to hurt. But I’ve been poked and prodded so many times during the past half year, I figured it would be fine. I was wrong.

Seriously wrong. Here’s the words and noises that happened next:

Nurse: OK, a poke and then a sting.
Me: Ok. That’s not bad.
(Sharp intake of breath)
Me: Oh, yeah, that hurts….Um, ouch. UM, hey, that hurts. (Lots of deep breaths while I stared at the table.)

About 15 minutes later, she took the needle out of my butt. Ok, maybe 15 seconds, but still. Day-um. That hurt. I’m pretty glad I don’t have another for three months.

Then I got a Snoopy band-aid on my left cheek, was promised the doc would call, and sent on my way.

Day One done, and I don’t hate my husband at all.

How We Got Here

2009-05-03T22:31:00.000-07:00

Six months ago, I started having abdominal pain every day. That kicked off a six month period of chasing down a diagnosis and, ultimately, treatment. I saw my primary care doc, an ER doc, a urologist, my gynecologist, a GI doc, a second GI doc, and a psychiatrist. I had three CT scans, two endoscopies, one colonoscopy, two X-Rays, and two ultrasounds. My veins were poked at least monthly for blood tests, and I’ve given more urine samples than seems reasonable. I even gave a stool sample. That was loads of fun, no pun intended. I never got to meet Dr. House, but I was hoping to.

My symptoms were indicative of many possible diagnoses, and no certain ones. I had abdominal pain every day, all day, to the extent that I took four Vicodin every day. I had occasional nausea, loss of appetite, and some weight loss. I had slight diarrhea, and fairly significant (to me, at least) fatigue. (But that could have been the four daily Vicodin, I suppose.) Friends and family tried to guess at my diagnosis. Doctors admitted they were stumped. Every test conducted came back negative or (and this drove me crazy) “unremarkable.” Each doctor told me I should be happy that I didn’t have something seriously wrong with me.

I was. I was thrilled to pieces that they didn’t find cancer or a baseball-sized tumor. That was great. But what I did have was pain that affected my quality of life. I went on medical leave from work. Without a diagnosis, I couldn’t get my full salary. I was extremely fortunate to have stellar health insurance and an employer who wanted me to take time to get better. But making less money just caused more stress. And I still had pain, plus a new narcotic habit. (I joke about the “habit.” I don’t think I was ever addicted, but I guess that’s hard to say. When I finally got off of it, I had no withdrawal and no trouble leaving it behind.)

OK, so to make a short story long, I eventually had new symptoms. That’s what always helps House, too, you know. It’s the new symptoms that come up in the 40-45 minute mark of the show that helps him and his team figure out a medical mystery. My new symptoms were bleeding between periods and pain during sexual intercourse. The night I first felt that, I thought my husband had introduced some new painful trick into our act, something that included knives. (When I realized I was just having new pain, I got so distracted by the hope of a diagnosis that I had to remind myself we were in the middle of something.)

I had done so much research on-line during my months of pain that I knew which symptoms suggested which internal conditions. I knew that night that pain during intercourse often pointed to endometriosis. I called my gynecologist the next day, and had an appointment within days.

Dr. N is now my heroine. She listened to what had been going on for the past five months. I had seen her in January, so that we could cross gynecology off of the list of possible culprits. She did a pelvic ultrasound, Pap smear, and basic pelvic exam. My symptoms back then were mainly gastro-intestinal, and we checked her off my list of specialists. But when I saw her in early April and told her what had been happening, she said “Someone needs to take a look inside of you, and I’m willing to do it.”

She thought there was a ten per cent chance that she would find endometriosis during the diagnostic laparoscopic surgery. But she also thought that just the act of opening me could help rearrange things enough that the pain could go away.

I’d like to point out at this point that my PCP had been counseling me that “one day, you’ll just wake up and the pain will be gone.” My GI doc referred me to another GI doc, who didn’t even return my calls. And my shrink? He told me I’d made up the pain to somehow punish myself. So Dr. N saying that she would take a look inside to see what was actually going on? A breath of fresh air.

I had a pre-op appointment where my husband and I got to ask any questions we had. Then surgery was scheduled for a week later. It was to be out-patient surgery, taking anywhere from 45 minutes to 2 hours. At the end, we would know if there was anything in there that was causing problems.

I remember the pleasant sleep I was put into in the Operating Room, where Dr. N promised to look “extra hard” to see what was causing the pain. I also remember waking up in the Recovery Room to find Dr. N standing over me, smiling and holding my hand. I was groggy and tasted medicine and had a sore throat. But I croaked out, “What did you find?”

She smiled even bigger. “We found endometriosis.”

I felt ten times lighter, smiled at her and said “I love you.”

Then I cried to myself for the next ten minutes, until they brought my husband in to see me. We were both stunned. For five and a half months, I’d had daily pain. Our quality of life had deteriorated. Our faith in doctors had been eroded. Our sex life, our social life, and our financial stability had all changed. I was depressed, not sleeping well (I was a stomach sleeper, and that was, remarkably, one of the hardest issues I faced) and unsure of my mental health. I had started to wonder if the shrink was right. Then Dr. N took away the pain and told us we’d be fine.

I had a few days of post-surgical pain, and within 5 days, I was sleeping on my stomach.

What a long, drawn-out story. At least it had a happy ending.

But here’s the thing we’ve learned about endometriosis: it’s not curable. It’s totally treatable, but the work Dr. N did during surgery wouldn’t do the whole job. She burned off six spots of endometriosis. But there could still be more that could cause me pain.

So Dr. N, who I trust implicitly at this point, has suggested that we do a course of treatment for the next six months. The treatment is a drug called Lupron, and it will put me into menopause. Now, I haven’t told you this yet, but I’m only 33 years old. I wasn’t banking on hot flashes and mood swings for another 20 years.

I have my first shot of Lupron tomorrow, and another in three months. I plan to write throughout the treatment to catalog my symptoms, reactions, and experience.

That’s the basics of my health so far. Check back in to see how menopause in my thirties goes.