Worse Appointment Ever.

I met with the reproductive endocrinologist, Dr. E-H, today. I almost jumped across the desk to punch her. I’m still too angry to write the whole thing out, but I WILL NOT go back to see her again!

The gist of the appointment went like this: I get taken back to her office. She starts talking about my referral notes saying I was being sent to her for osteopenia following chemical menopause to treat endometriosis, and she has my bone density scan results. And that’s were things stop going well.
ALL she wanted to talk about was my endometriosis. Which was NOT why I was there; I was there to address bone density loss- which I actually had before starting the aromatase-inhibitor – the letrozole didn’t make it go down that drastically. So she starts asking why I got of the letrozole, which I tell her is because I ran out of pills and my new insurance doesn’t cover it. Then she starts pushing lurpon. –insert collective groan–

I tell her I WILL NOT, under any circumstances, go on lupron. I don’t believe it is a sound choice for managing endometriosis, and the only reason I agreed to go on the letrozole was because it makes more sense than just shutting down the ovaries, since the endometriosis lesions can produce its own estrogens whereas lupron is a GnRH-atagonist and only shuts down the ovaries. So she tells me, “endometriosis can be activated by the ovaries so shutting them down works, and letrozole doesn’t get rid of all the estrogens either.”  Which, may be technically true, but it just because both don’t suppress all the estrogens you produce, that doesn’t mean lupron an attractive option.

So then I tell her that I don’t know how my periods will be, since I’ve been on it since I had the surgery, and the excision of my disease should have removed it. She decides to tell me the disease can’t be removed completely, and I answer that that is controversial. Her reply, get this, “No it isn’t. I research endometriosis”

.. Okay BITCH. I’m no stranger to research, and while I may not conduct endometriosis research 1) I DO have a Master’s of Science in Reproductive Physiology, so I’m not clueless, and 2) stay as up-to-date as I can on contemporary endometriosis research. And I haven’t seen your name anywhere. And I’ve seen data from surgeons that shows 0 recurrance of the disease that has been properly excised (thank you to all the talented surgeons and researchers who share their data and opinions on EndoMetropolis) AND 3) JUST BECAUSE YOU MAY CONDUCT RESEARCH IN SOMETHING DOESN’T MEAN YOU KNOW EVERYTHING ABOUT IT. I’m a PhD student – I clearly know a thing or two about research. You can’t tell me any researcher knows everything about a particular topic. And anyone who does, I know is full of bullshit.

So I’m FUMING by now. And she looks at me and goes “Well I don’t know what you want me to do, why are you here?”
UM. Because a doctor I trust thinks I have loss too much bone mass for my age, and thinks why should be investigated. Because of the OSTEOPENIA that the referral said.

So she starts talking about how if I go back on letrozole, she’ll have to add back some estrogen. And I tell her, again, that I won’t be going back on the letrozole because my insurance doesn’t cover it (I think I told her that at least 4 times).

…

She repeats “Well I don’t know what you want me to do.”

ARE YOU FUCKING KIDDING ME?!?!

So she finally agrees to check my parathyroid hormone (PTH) levels, since my thyroid panel was just checked and came back normal. And “your thyroid or parathyroid hormone usually are the cause of bone density loss, I’ll run the PTH but I think it will come back normal. So if you go back on letrozole to control your endometriosis I’ll have to put you on some estrogen and progestrone too.”

o.O

What great listening skills she has.

THEN, to top it all off, she asks me and A (he drove me, because he’s the best and the appointment was an hour away) if we’re planning on having kids anytime soon. No, not until we’re out of grad school. So she’s like “well, you’ll need some birth control pills.”  … So I laugh. I literally laugh. And tell her that won’t be a problem. We don’t have intercourse. And I look to A for back up, and he collaborates that we’ve had sex once in the past year. And Dr. E-H goes “well it only takes once.”
…

Yes, I know. I have a Master’s of Reproductive Physiology. I literally MADE BABIES during my master’s (cow embryos anyway). AND, OH YEAH. THERE ARE THESE THINGS CALLED CONDOMS. I don’t need to be on pills to have safe sex.

I mean, talk about pushing hormones. Damn.

I left so mad. When I seem my PCP again I will tell her I will NEVER go back to Dr. E-H. And if she is really concerned about why my bone density 80% of age matched peers, then she’ll need to send me to see someone else – maybe a regular endocrinologist would be a better approach.

Oh, and I looked up Dr. E-H’s publications. She has 8 publications total, and only 1 of those is related to endometriosis. The entire publication is 1 page long, and the study is incredibly poorly designed. Like the kind of publication I’d tear into during a journal club meeting, and throw out completely if doing a literature review. … And she says she researches endometriosis. Apparently not well …

Unexpected Side Effects

I knew coming off the aromatase-inhibitor and progestin would lead to my uterus waking up. And I anticipated everything that came with that… although, it surprisingly my withdraw bleeding wasn’t that bad. But what I didn’t anticipate or even consider is the horrendous breakout that would come with my body getting used to estrogen again.

I have the worst breakout down my armpits and the sides of my breasts, as well under my cleavage and up my neck. My shoulders and back usually are the areas where I get the worst breakout, and I may get one or two little zits on my forehead, cheeks or nose; but those areas aren’t bad right now. But boy around my armpits, cleavage, and neck are horrendous.

I hope my body adjusts to its new hormonal normal soon and clears this up.

The beast has awoken.

I ran out of letrozole and norethindrone on Thursday, and my new insurance won’t cover anymore of the letrozole. It didn’t take too long for my uterus to take advantage of the lack of regulation. The beast is back.

Zoloft

Met with Dr. B this morning. I didn’t give her the list of I keep of what’s been going on since my last doctors appointment; she hardly ever addresses my concerns anyway. I even mentioned I had a neurologist appointment in September, and she didn’t ask why or who was sending me there.

She did conclude that I have depression (which, we’d discussed before), and apparently an anxiety disorder (I’m unconvinced).

We were discussing the efficacy of amitriptilyne in treating my migraines. Which it isn’t anymore. And she wanted to change the drug, rather than the dose. She mentioned the other options were blood pressure medication, or topamax- but topamax can make you foggy. I told her that cognitive issues were currently my biggest complaint and I couldn’t handle being foggy anymore than I already am.

She concluded that I am too anxious to concentrate, because I’m already focusing on the next thing to worry about. …I’m not.

I think my level of anxiety is appropriate for what is going on in my life.

But, I do agree that my depression needs to be treated. It has gotten really bad lately. And while I think the depression is a result of my inability to concentrate or think clearly and get done what I need to, I think the depression feeds my cognitive issues. Hopefully treating it will help.

I’m also out of letrozole and norethindrone on Thursday, so we’ll see if coming out of chemical menopause helps my cognition any.

We did opt not to change my amitriptyline until after I see Dr. C, the neurologist. Since I was only ever given the ocular migraine diagnosis by opthomologists who couldn’t see any other retinal problems, I’m looking forward to getting a neurologist’s opinion.

Updates

Well, the garlic test was inconclusive. I didn’t have any bloating after eating the rosemary lemon chicken and  was feeling good the next morning too. But then I made a mistake. A and I went to the grocery store and I picked up some gluten-free pretzels AND I DIDN’T READ THE LABEL. Dumb me. So I’m really excited to eat pretzels, I love pretzels, and since starting the low FODMAP diet obviously haven’t been able to have any. I get home, start eating them with some Brie, and realize that maybe I should check the label. …Yep. Right there at the end of the list- Onion Powder. Garlic Powder.
I hadn’t even had more than 20 pretzels and my big ol’ bloated belly was back. I don’t know if it was the onion powder, garlic powder, combination of having garlic the day before, or something else entirely.

Later in the week I finally get a call from Dr. Y’s office about the ultrasound results. It wasn’t the normal nurse who called me- and all I got was “Dr. Y wants you to go off the pills for a week and then go back on them.” No other indication on if the endometrium measurements were to be expected, or concerning, or anything.
So now I’ve been of the letrozole and norethindrone for three days- and my uterus is back for vengeance. Cramps, back ache, stabbing vaginal and rectal pain that catch my breath, joint pain…oh and of course, bloating! So far just a bit of bleeding, so I know the real fun is still waiting to begin. Plus, three days of my pills and everything is back to BABIES! which always causes some emotional turmoil for me.

On top of that I’m having another breakdown about this diet. All I want is normal, easy, comfort food. But of course none of that is low FODMAP friendly.

It’s going to be a long week. At least the semester is over, now all I have to worry about (academically) is my prelims.

I’m SO MAD. The ongoing saga of my uterus.

I’m still bleeding. Thankfully, no longer overflowing the Diva cup, but still bleeding.

Yesterday, I got the student health center to write me a referral to my local GYN, Dr. H, so that it would be more affordable. I called her office immediately after I got the referral page. That was around 1pm. I had to leave a message for Dr. H’s nurse- who I hate, she’s a moron.

Dr. H’s nurse called me back around 1:50pm. She said Dr. H didn’t know anything about the letrazole, which I find interesting for two reasons 1) Dr. H and I talked about it together over the summer when we had to find Dr. Y again, and 2) if you have a degree, and specialize in reproduction, you should know what an aromatase-inhibitor (AI) does- even if you aren’t familiar with the specific drug. …So the nurse says I need to call Dr. Y’s office. I explain that 1) I have talked to Dr. H about this drug/treatment before, so I don’t believe she knows nothing about it, 2) an AI should not be causing this, that’s not how they work, this level of bleeding after being on an AI for almost a year is very unusual, and 3) I cannot afford to see Dr. Y again as he is not in my insurance network – so even if Dr. H doesn’t feel comfortable with the drug, she can take me off it now, and this needs to be seen. This was after having a long discussion with the nurse about if this bleeding was near when my normal period would be? HELLO WHAT DOES MENOPAUSE FOR ALMOST A YEAR MEAN TO YOU?! No, it’s not near my normal period time, as I haven’t had a period in over a year (I was on continuous BC- prescribed by Dr. H nonetheless, before that for 9 months). Then on the amount of blood I was loosing- and the nurse couldn’t get it into her head how mL as a measurement of blood works. She only wanted to know how many pads I’m going through- I’m using a menstrual cup, I can’t tell you how many pads I’m going through. I can tell you that I overflowed my 30mL cup, and an average disposable pad holds 5 mL, so that’s approximately 6 pads. She couldn’t understand that math either. … So after having that discussion, and me explaining the numbered list above, all she would do was insist again that I call Dr. Y’s office, and then call her back.

So I call Dr. Y’s office and get forwarded to his P.A.’s answering machine. I left her a message explaining the whole situation.

5pm comes and goes, and I don’t receive a call back. At that point I decided to send Dr. Y’s P.A. – we’ll call her J, an email. I have her email address from trying to plan my surgery this summer. I explain the entire thing again, in email, and send it off before I head out for my class.
Within 30 minutes I get a text message from J, asking if she can call me in about a half hour. I text back that I am walking into class from 7-10pm and unable to talk in a half hour. She says to text her as soon as I can speak to her on the phone the next morning. As it turns out, my class takes a 10 minute break at 8:00pm. I text J that we have a break so I can talk right then, if she wants, and she calls me immediately.

She says that Dr. Y is now in-network with my insurance…but unfortunately she has my old insurance information. I tell her my new provider, and of course, that is the one company he is not associated with. She says she understand the situation then, financially. So, she says she’ll fax my local GYN an order for an ultrasound, so that Dr. Y still gets the results but I’ll be billed through my local GYN (who is in-network). That I shouldn’t be bleeding at all on the AI, so after the ultrasound results- she’ll try to see if it can be handled up here, or if I’ll have to come down and see him. And she’ll have Dr. Y decide if we need to change my dose. I then had to explain that my new insurance won’t cover the AI, so I only have what I last ordered on my old insurance left- a 90 day supply. After that, I can’t afford it anymore. She asked if A and I were planning on having a baby in the next year or so, and I laughed and replied we’re second year PhD students. We’ll only do that if the ultrasound comes back that everything must go soon and we HAVE to. She expressed that we may be able to try other pills then, that are sometimes more affective after surgery than they were before, but we’ll revisit that after the ultrasound results come back. And, that if I text her my local GYN’s fax number, she’ll send them the order first thing in the morning.

Remember, this is after 8:00pm, on her personal cell phone. I can’t express how much I love J. She is wonderful.

So, this morning I get a text at 9:12am letting me know the fax had been sent, and I should be able to schedule the ultrasound soon. Great!
I spent all morning and afternoon at a conference for work, so I made sure to pick a seat at the back of the room where I could easily leave, and kept my phone on vibrate and on my lap, so that when Dr. H’s office called I could easily answer it.

Fast forward to 1pm and I still hadn’t heard from Dr. H’s office. We were on lunch break at the conference, so I took the opportunity to call. I reached a receptionist and explained that my specialist had faxed over an order for an ultrasound that needed to be scheduled. The receptionist forwarded me to Dr. H’s nurse’s line. Once again I got the answering machine and left a message.

So, I wait for them to call. The conference ends, I go to the grocery store, I go home, and still nothing. At 4:30pm I decide to call them back. I want this scheduled before the weekend.

I reach another receptionist, and explain “my out of town specialist faxed an order for an ultrasound this morning, so I can have it done locally. I called around 1 and got forwarded to [Dr. H’s nurse], but got her answering machine. I left a message but haven’t heard back from her, and want to get this scheduled before the weekend.”

And what does the receptionist say? “Oh she left at noon today.”

Logically, I ask “why did I get sent to her line if she wasn’t here?” because, shouldn’t they have said she wasn’t in when I called, not say, I’ll forward you to her?

Here’s where I start to get really mad. The receptionist starts to get snippy.She says “its medical, all that stuff immediately goes to the doctor and nurse, we can’t do anything with it until the doctor signs it. Dr H left before [her nurse] did.”

Okay. The fax got there well before noon. I know because J texted me. I explain this to the receptionist, and ask if it’s possible Dr. H has signed it already, as there was time from when it came in to when she left the office.

And snotty receptionist replies “other thing can come in before yours” like that justifies Dr. H not paying attention to things that are faxed to her that morning while she was in. (And since I called yesterday about the bleeding, and she said to talk to my specialist, you’d think that something from my specialist’s office would get her attention).  I ask if the receptionist can see if Dr. H had signed it before she left. ..and surprise surprise, of course she can’t.

I’m already mad, and you can hear it in my voice. Her snippy attitude isn’t making it better. I know, its Friday, and you may have had a long day. Usually I am super sweet to receptionists, and others in the service industry because they’re doing what they can. But I am a patient clearly invested in my health and being ignored. I have to wait over the weekend to find out the cause of my unusual bleeding, that my specialist’s P.A. was concerned enough to talk with me far after hours about. My being short was justified. I reply with “fine, I’ll call back first thing Monday then” and hang up.

At this point, I’m so mad I’m in tears. I mean are you fucking kidding me. I get people are busy and can’t always be in the office- my whole office was at a conference today so not there to answer phones. BUT WERE FUCKING CAREER COUNSELING NOT SOMEONES MEDICAL CARE. And Dr. H works in a fucking practice with a bunch of other doctors. IF A SPECIALIST CALLS IN A TEST FOR UNEXPECTED HEAVY BLEEDING (WHICH I FUCKING TALKED TO DR. H’s OFFICE ABOUT YESTERDAY AND THEY PUSHED ME OFF TO HIS OFFICE) THEN YOU SHOULD MAKE SURE TO GET THAT TEST SCHEDULED. ESPECIALLY RIGHT BEFORE THE FUCKING WEEKEND. NOW I HAVE TO WAIT UNTIL MONDAY FOR THEM TO EVEN SCHEDULE THAT SHIT, AND WHO KNOWS HOW LONG IT WILL BE BEFORE THE IMAGING CENTER CAN GET ME IN. I MIGHT NOT EVEN BE BLEEDING BY THEN. ARE YOU FUCKING KIDDING ME.

Oh I hate her office staff so much. They’re shit at contacting patients too- one time they scheduled me on a day Dr. H wasn’t even in that office, and said they called me to tell me that and give me a new time BUT I NEVER GOT A CALL FROM THEM.

GAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

How can you justify not taking care of your patients?
Things like this make me thankful for medical professionals like Dr. B2, and J. But it shouldn’t. All medical professionals should care about their patients as human beings concerned about their well being. It shouldn’t be the exception.

Hello Uterus. (And low FODMAP Day 8: Chicken with Green Chili Currry and Roasted Veggies)

I missed my low FODMAP entry yesterday because I felt awful. I’ll give you a warning here, if you’re just here for the low FODMAP recipes, and are uncomfortable with menstrual related talk,  then you’re going to want to skip to the bottom of this post.

Doctor Rant

Visited Dr. B today, after a very stressful morning (my poor doggy woke us up early with bloody diarrhea, so we’re off to the vet this afternoon). I always leave her office upset. She increased my amitriptyline prescription to double the dose, since it had stopped being effective at controlling my ocular migraines. It also had stopped helping me sleep and wasn’t doing a good job of controlling my aching muscles and joints. I tried to talk to her about my aching muscular-skeletal system, but she brushed it off- asking me “do you spend a lot of time sitting, reading?” which of course I do- I’m a graduate student and she knows it, I spend a lot of time reading or working at my computer. But I always have, and I don’t think this pain is a result of that. Then she said, “well have a good day” and left. I know I can be a frustrating patient, but its frustrating for me too, especially when I’m (well, my insurance anyway) paying you to give me your attention and help determine ways to actually make me feel better and have a decent quality of life! And, I was so worried about my dog that I completely forgot to ask her what inflammation test she ran last time she did my blood work. Endometriosis is an inflammatory disease and I want to know if the test is sensitive enough to pick up the inflammation as a result of it. I don’t think it is, but I want to make a well-informed decision about remaining on the letrazole once I have to switch insurance companies in March. The new insurance won’t cover it, and I need to determine if it’s worth paying for it out of pocket. I’m just so frustrated about doctors who blow you off or ignore you, that I’m not sure I can even muster up the strength to call her office to talk to her about it.

I wish my doctors were as good as the veterinarians I take my pets to. I work with them a lot (one of my kitties Icarus just had major knee surgery and was doing continuous acupuncture before that) and they never second guess what I tell them. If I want to test for something, they’ll tell me the cost, and if I agree they’ll do it- not tell me its too expensive so we should just wait and see. They are always kind and compassionate with my animals, and have gone out of their way to make their veterinary experience less traumatic and more enjoyable. They remember me, even when I’m in with a different pet (which is impressive, as I take my pets to a veterinary teaching hospital- part of the local veterinary school, so we’re always seeing different veterinary students, etc.), and always ask how the others are doing. They’ll even call around to the local pharmacies and check with their own to find the cheapest place to get a prescription filled. And, best of all, they don’t brush me off or make me feel bad when I come in with some concern over my pets- even if it turns out not to be anything serious. Yeah. I really wish my doctors were as good as my veterinarians.

So easy to forget.

It’s so easy to forget just how much pain you were in. You’d think when you were in severe pain, or pain every moment of your life, it’d be something you’d recall easily, but it’s not. Once you get a taste of what it’s like to be pain free, or really, just in less pain) you quickly forget how hard it was.

I noticed this before I was in constant pain- when I’d have two weeks of horrendous period related pains and then be pain free for two weeks. It was like every time my period came around, I was floored- not just from the pain but that I’d just done this two weeks before. Like my body was tricking me, to make it not seem so bad, until it was here again.

After my surgery most of my constant abdominal pain was gone, or greatly diminished. I started noticing my joints, all over my body, really hurt- especially when it turned cold, and my ocular migraines were picking up in frequency again. Dr. B prescribed me amitriptyline; 25mg before bed each night. And that really helped. I’ve had two ocular migraines since I started the amitriptyline two months ago (two months ago tonight, actually!), and much of my joint pain and body aches were reduced.

That is, until recently.

The sharp stabbing pain in my lower right quadrant has returned. I think it might be ureter pain, since its the same pain as before surgery and clearly wasn’t resolved with the excision done in that area (right uterosacral ligament; although my hip had been feeling better!). And the fatigue has been creeping back into my life. This past week, my uterus has been crampy and angry. It’s an awful beast. Even on letrazole and progestin I spot every day, and for the past few days have been spotting pretty heavily with pain shooting down my right leg and cramping. I’m blaming the full moon.

I forgot just how bad I could feel. I crawled into bed the other day, curled tightly into a ball, and though “and this is only part of what I was dealing with a few months ago. HOW DID I DO IT?”

It’s so easy to forget how much pain we’ve be in. Sadly, it’s just as easy to forget how we were able to deal with that pain.

In closing, although my new year has started off painfully, I hope it has been relatively pain free for you.

Aromatase Inhibitor Part 2

A short follow up to my aromatase inhibitor post.

I have been able to do a lot more around the house, like actually doing dishes. And this ability has made me feel a lot better, because I don’t feel like I’m being such a burden on A. I get to feel like I am actually being a contributing member of my household, even if I do have to recuperate after helping out.

I may have been giving the aromatase inhibitor credit for this- decreasing my fatigue even though it’s only mildly affected my pain; I realized the however, that the effect of pills have been confounded with the end of the semester and beginning of summer. It’s hard to say which is the contributing factor, or-if they both are-to what degree. I am fairly certain that the semester being over is likely the reason I am able to do more around the house. Almost all of my energy and effort goes into school during the semester- which means the vast majority of my daily spoons go into school; now that it is summer, I’ve been able to use those spoons around the house.

So, in connecting with my previous analogy, while the aromatase inhibitor has given me more warm days in winter, I have to wonder how much of those warm days are also a result of the end of the school year too (or instead).

*If you aren’t familiar with spoons, and spoon theory check out the link under Resources.