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.
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.
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 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.
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.
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?
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.
Endometriosis is the presence of endometrium (the tissue that lines the uterus) in places other than the lining of the uterus. It causes pain, sometimes excessive bleeding, sometimes infertility.
For me, it caused severe abdominal pain. My doctor said my pain was referred pain, since it showed up in places other than my endo growths. I was on Vicodin for five months, off work for three, and in pretty foul spirits. We zapped the growths and are now doing an aggressive treatment with Lupron.
Lupron causes temporary menopause.
