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.

My First Surgery – The Surgery, and Recovery.

I know, this post is far overdue. This semester has been kicking my ass, and because my surgery was two days before the fall semester started I haven’t had a break to actually write this up. So, this will be like taking a little trip back in time.

August 22.

I had to be at Dr. Y’s office for my pre-op appointment at 8:00 a.m., and we live approximately 2.5 hours away from his office and the hospital where I’d be having my surgery- which meant it was a very early morning. I walked the dog, got dressed in my long stretchy skirt and “Ova achiever” shirt, snapped a quick photo to post to Facebook (as seen below), gathered up my things and climbed into the car.

My “Its far too early in the morning, and I’m nervous about this whole surgery thing” look. Please ignore the super messy house in the background.

The hardest part about the morning was not being able to have anything to drink (except a tiny sip of water to take my omeprazole- the only medication I could have, and was told to take, before the surgery), so I had really bad dry mouth.

The pre-op appointment lasted maybe 20 minutes. The nurse took my blood pressure, temperature, and weight. Dr. Y explained where the incisions would be, and asked if I had any questions. Then they sent us over to the hospital to check in.

It took a little while to figure out where we were supposed to go, but we found it and I checked in. That’s when I got my id-bracelet, and the sheet of stickers to give to the surgical nurses. From there we were directed to the women’s surgery waiting room on another floor. We had hardly found a seat when the nurse came to get me. I had to leave A waiting there.

Once we were back in the pre-op area (it was a lot of beds around the walls, surrounded by curtains), the nurse took my weight and height again. She led me to my bed, gave me a gown and socks to change into, and then directed me to change into them. She also gave me a little bag to put my glasses in, so that they could put them back on me as I woke up.

After I changed she opened the curtain up again and had me get into the bed. I sat there a while before another nurse came by and started my IV, and hooked it up to some saline. She was a sweet-heart, and made my experience much more pleasant. Another nurse came by to get my pre-op information again. It was the third time I had given information to the hospital (twice on the phone), but apparently they had just switched to a new system and kept having issues. The nurse who was typing in my information kept getting called away, and then would have to come back and start again, so taking down all my history took a long time.

Another nurse came by and took some blood, and they made me pee in a cup for a pregnancy check- even though there was no way I was pregnant. Better to be safe than sorry I guess. After about an hour, they when and got A for me, and he got to sit with me until they started to take me in for surgery. The really sweet nurse who put in my IV asked me if I get motion sick, and I told her I get very motion sick, very easily. To help me feel less nauseous from the anesthesia, she gave me three different anti-nausea medicines. The first was a patch behind my ear. She also put some stuff in my IV. She said that people had told her that the IV medicine felt kind of like CT contrast (that burning feeling), so she was going to put it in suuuuper slow to avoid that. She spent about an hour putting it in my IV, and I didn’t get that burning. I’m really thankful for that particular nurse.

Just a few moments before I was going in for the surgery Dr. Y stopped by and told the nurses that he wanted me to be awake when they brought me into the operating room, and to put my legs in the stirrups first, to make sure it didn’t hurt my hip. Everything went pretty quickly after that. The nurses brought me the final anti-nausea med. It was this liquid which tasted like a really salty warhead candy. It was pretty gross, but it was certainly better than the bowel prep stuff! Then I had to take a pain pill. It was too big for me to swallow so they had to cut it into quarters and get meme extra water. The nurse who did my IV and anti-nausea meds then gave me an initial sedative, I said goodbye (and I love you) to A, and they wheeled me into the operating room. This part is all a bit fuzzy. I had to switch from the bed I was in, onto the surgery table. It was very padded. They had me put my legs into the stirrups (which , the position for this surgery is like sitting in a chair, but laying down, with your knees bent up that way) and confirm it didn’t hurt my hip. Then I put my legs back down. My arms had to be by my sides, and they strapped them and my head into these padded things, and put the mask over my nose and mouth. Apparently that is when the anesthesiologist put me under, because I don’t remember anything else. I don’t even remember seeing the Da Vinici machine.

I woke up in a recovery room that looked similar to the pre-op room, but with less beds. It was really slow coming out of anesthesia. I’m pretty sure I drifted in and out for a while. The nurses checked my blood pressure a few times, and encouraged me to breath deeper- I apparently was breathing far too shallow.

Once I was more awake, they took off the leads to monitor my heart and had me sit up a bit. And they brought me a Coke, which was amazing. And, thanks to the really sweet nurse, I didn’t have any nausea at all.

After being awake for a bit, they went and got A.  He said the surgery had taken about 2.5 hours, and Dr. Y came and talked to him after the surgery, but he didn’t really remember what he said, he just wanted to know I was okay. The nurses then came by and took me to the bathroom to encourage me to try to pee. I was having a lot of trouble trying to move around with my IV still in, so they took it out. I also made a bit of a mess everywhere, as one of my incisions was bleeding a bit and I had some vaginal bleeding from the manipulator they use to get the uterus in the correct positions. The nurses were really kind and helped get everything cleaned up. They asked if I wanted A, and went and got him for me. I don’t know how long I sat in the bathroom, leaning against A’s leg. It took a long time for me to relax enough to pee. It was really nice having him there for support though.

After I managed to pee, I was allowed to go sit back in the bed. I had heard that after the lap. many people experience really bad shoulder pain from the gas they use to inflate your abdomen, so I was expecting that. Instead I got incredibly sharp pain under my left ribs, and a really hard time breathing. The nurse recognized immediately that it was from the gas, and reclined my bed back further, which really helped.

I’m not sure how long we stayed in recovery. But before I knew it, I was being released. I changed back into my loose maxi-skirt and t-shirt, and was taken in a wheel chair by one of the nurses out to the parking garage. Then A helped me slowly navigate back to the car and drove us home.

I think we were home by 5:00pm that night. Maybe a bit later. I climbed right into bed. Since we have a dog and two cats, we built me a protective “fort” around the bed. We blocked off the edge I was laying on with our 48″ x-pen (you know, those fold-able metal gates to contain dogs or other pets). Then I had my adjustable laptop table over a really soft pillow on my abdomen/pelvis, so none of the pets could step on it if they got on the bed from the other side. All and all, the set-up worked pretty well. I don’t remember much else from that day. I think I ate something, but I’m not positive what.

Initial Recovery.

My mom came down sometime the next morning. She and A went and filled my pain prescription for me, and she made me some soup. She also made me get up for a bit and move around- which I really didn’t want to do. For the rest of the weekend she made me move around and eat things. I really didn’t have an appetite and was pretty nauseous from the Percocet I was prescribed, so I mostly picked at food. The Percocet also made me really itchy and feel awful. And, it after taking it for a few days I noticed it also made me stop breathing periodically- which is pretty frightening. So, after four days of higher pain management all I was stuck taking naproxen. It didn’t quite help the pain, but at least I didn’t stop breathing.

The first week after surgery I was useless. I couldn’t think clearly and just wanted to sleep. I did walk around the house a bit each day, and braved going really slowly around the grocery store a few times. I also took a short shower everyday, to help keep my incisions clean. I had four incisions: one at the top of my belly button, two on my right side, and one on my left. They were closed with surgical glue, so there was surgical glue all over my abdomen. My belly was a bit swollen, and a little bruised, but nothing too bad.

I took the week after my surgery to initially recover, but in doing so I missed my first week of classes. So I couldn’t miss the next week. I wore a lot of dresses and loose skirts for the first few weeks of recovery, and took everything extra slow.

On the second weekend after the surgery (Sept 6), A and I got married. That was a really long weekend, but I was already feeling better and in less pain than I had been for ages. I didn’t need to take any pain killers that day, and didn’t use my cane either. I did have to take rest breaks, and forgo dancing though (not that I would have danced anyway- I’ve got no dancin’ skills). And, needless to say, there was no honeymoon.

I had my post-op appointment three weeks after the surgery, and finally got to see the surgical images and pathology report. Dr. Y used the CO2 lazer to cut out areas of vascular abnormality. Cutting out endometriosis is far more effective than having ablation or burning it; those types of procedures can actually make endometriosis worse. Dr. Y cut out 7 areas that he sent to pathology, and drained a large endometrioma (chocolate cyst) from left ovary. The pathology confirmed that I had endometriosis in my right uterosacral ligament, and in some recto-vaginal areas.
Since Dr. Y and I suspect that I may still have adenomyosis, and pain related to that, he also kept me on the letrazole and progestin pills.

Continued Recovery.
I’ve had some aches and pains which felt very similar to before surgery, but have to remind myself that I am still recovering. I had large sections of my body cut out and that takes time to heal. Slowly but surely my appetite is increasing, and my fatigue is decreasing. I still bloat though, so I’m not sure if that is going to end.

A couple of weeks ago, I did start having some joint pains with the cold weather, and with my continued migraines, my primary care physician started me on amitriptyline. I have not felt better in such a long time. There are days that are mostly pain free now, which I hadn’t had in over a year.

I’m not sure of Dr. Y got all of my endometriosis, or if any endometriosis will come back and I’ll need another surgery for it. And I’m sure at some point I’ll need a hysterectomy for the adenomyosis. And while I am not eager to have surgery again (boy did recovering with that Percocet really suck), I am glad I had it when I did. I can’t imagine getting through this semester with out it. And it’s so good not to feel absolutely awful all day, every day, anymore.

My First Surgery – Prep.

As the days creep closer to the surgery, I’m trying not to think about it too much, lest I become far too anxious.

But of course, the surgery will be taking me “out of the game” for a while, so there have been a lot of things I’ve needed to prepare for.

First, comfort after surgery:

• All summer I’ve been on the look out for loose clothing, like maxi skirts and dresses, and loose dresses I can wear with leggings. I’ve heard laparoscopic surgery will leave you bloated for quite a while, so I wanted enough loose and comfortable options to last longer than just a day or two after surgery.
• A couple of weeks ago, when I first found out we’d be moving forward with the surgery but I still didn’t have a date, I bought a wedge pillow to use during recovery. I also bought some Arnica gel, which I have heard is very useful for resolving bruises and reducing pain while healing. Once my incisions are completely healed, I’ll have that on hand.

• I’ve also stocked up on Thermacare Heat wraps, to apply to my shoulders following the surgery. I’ve heard the gas pains that travel up to your shoulders can be awful.

• In the same vein, I bought some Gas-X and some Miralax to help things get moving after the surgery, and hopefully keep from having any bowel gas build up. After a bowel prep (yes, I did get the go ahead), surgery, and narcotic pain meds- which are known to cause constipation… and given my current bowel workings… I’m sure I’ll need these two products.
• I also checked my cabinets for some peppermint tea, and peppermint candies, that I can sip or suck on after the surgery. Peppermint should not only help with the gas, but with any nausea- which I’ve heard can be a problem after surgery.

Second, arrangements that need to be done BEFORE surgery:

• One of the most important things I needed to have completed before surgery was find someone to watch the pets. We’ll have to leave the house by 5 am to get to Dr. Y’s office for the pre-op appointment at 8 am. And who knows when we will get home- could be Friday afternoon or evening- or they could hold me for longer. My mom is coming down Saturday morning to help out, but couldn’t make it Friday- leaving one day unaccounted for. The dog has to go out, get fed, and take his pill after all. And the kitties would like their wet food- though they would be fine if they didn’t get it.Thankfully, A worked it out with one of his coworkers that we both trust, that they will come over and take care of the boys throughout the day Friday.
  
• Of next importance was writing up a sort of living will- except nothing official or legally binding. Just something that I’ve put together to give to my mom and A before the surgery, so that if anything goes wrong they know my wishes. Growing up my dad went into a coma after an aneurysm ruptured; there was A LOT of drama about what he would have wanted versus what various members of his family thought was best or what they wanted. I don’t want that kind of drama if anything ever happens to me, so wanted to make sure there was at least a document somewhere where I made my wishes known.
• And wedding stuff. Since we will be getting married two weeks after the surgery, I realized there would still be a lot I would be limited in doing- and would therefore have to get done before the surgery instead. This past week we got our marriage license. Then, this past weekend we went and did the venue (campus horticulture gardens) walkthrough. And tomorrow I’ll be mailing off the photographers list. Plus our last few deliveries should all be here before Thursday. Although this isn’t all that needed to be completed for the wedding, the rest I should be able to easily manage even while resting and recovering- or A will have to do it.
• Laundry! Last night I washed all the clothes that needed to be done, and a bunch of blankets. Although I won’t be needing all the laundry I cleaned, it is nice knowing they are all taken care of.
• A bit of cleaning. My apartment is a mess. Between the dog, the cats, graduate student mess (papers, binders, books, and school work everywhere), wedding mess (there is little stuff everywhere and the cornhole boards are taking up a lot of space), and generally not feeling well enough to really clean… well you can get the picture. I’m not going to spend a lot of time cleaning or organizing (like I usually would before my mom comes to visit) because I frankly don’t have the energy… but I will make sure the bathroom is at least nice and clean.

Odds and Ends:

• For a bit of confidence boosting before surgery, I bought this awesome shirt to wear to Dr. Y’s office and to the hospital.I’ll post a picture of me rocking it day of, sometime after the surgery.

• I also bought a giant plush ovary (I named her Penelope) to take with me in the car.
• Thursday morning I’m going to go get my hair cut and my layers touched up. A bit of pampering has to be good, right?
• I bought a little sleep mask and some aloe socks to take to the hospital to make me feel more comfortable (and hopefully prevent any light sensitive migraine triggering with the bright florescent hospital lighting).

For my hospital “bag” (some things will stay in the car), I’ll be bringing:

• Loose clothes for leaving the hospital
• Comfortable, non-binding underwear
• Toothbrush and toothpaste
• Hairbrush
• Deodorant
• Gas-X
• Peppermint tea bags and candies
• Penelope, the ovary
• A soft pillow for the car ride home- to go in between the seatbelt and my abdomen
• Eye mask
• Aloe socks
• Normal socks
• Phone Charger
• Heat packs for shoulder
• A few cloth pads of varying absorbancy (they will be using a uterine manipulator during the surgery, to keep it out of the way; this often leads to some bleeding after the surgery)
• Chapstick
• My inhaler
• My usual meds, in case I do have to stay the night.

There are just a few more things I need to do, like pick up the things for bowel prep, show our lovely pet sitting coworker the routine, pack a hospital bag (in case I need to stay longer than I’m expected), and actually do the aforementioned bowel prep.

Just a few days left to go!

My First Surgery- PreOp Call(s)

I’m going to write a series on my first surgery. Hopefully it will be helpful for anyone else preparing to go in for endometriosis excision.

My surgery is scheduled for August 22. It will be taking place at my specialist’s (Dr. Y) hospital, 2.5 hours from my house. Thankfully, most of the pre-op management will be through phone calls, and then I will have a pre-op examination the same day as the surgery.

This week has been full of pre-op calls. Because I have never been to the hospital my surgery is being conducted at, I’ve received two calls to pre-register with the hospital and verify my information. I also received a call informing me that I would be getting a call for pre-op questioning on August 15th, between 8 and 10 am, and I should have a list of all my current medications available.

Sure enough, at 8:40am I received a call from a lovely nurse. After confirming my identity and what surgery I was going in for, we went through all of my medications- both daily and as needed. She told me to stop taking my multivitamin, tums (calcium supplement), and any Aleve or NSAIDS from now until after the surgery. She also said to make sure I take my omperazole the morning before the surgery with a sip of water, and to bring my inhaler with me to surgery.

Then we went through a list of questions about my medical history, including my current pain levels. She also asked if I consented to receiving blood products if I need them, and if I had any religious objections that they would need to know before surgery.

She gave me some instructions for the day before surgery, including don’t eat anything spicy that day, drink lots of water, don’t eat or drink anything after midnight-except that sip of water to take my pills, take a shower before bed with antibacterial soap, bring my insurance and ID to the hospital, don’t wear any jewelry or metal the day of surgery. She said to call and ask my surgeon about bowel prep (after I asked about it), and to call him if I start running a fever anytime before the surgery.

She also gave me a number to call the day before surgery to call and verify the time of the operation, and a number to call if we got delayed on the drive in.

Finally, she asked who was bringing me to the surgery (A is of course), said he’d have to stay at the hospital the whole time I was in surgery, and then told me where we could park and how to get to the women’s center where my surgery would be. She asked where my primary pharmacy was, and then she asked if I had any additional questions for her.

All and all I must say it was a fairly pleasant experience. She was very nice, in contrast to some of the medical professionals I’ve talked to. I usually have a lot of anxiety about talking on the phone, but I am glad I could talk to her on the phone- I was a lot more comfortable and put together than I would have been face-to-face in an office.

Now I just have to work up the nerves to call Dr. Y about the bowel prep…

August 22

I finally got my surgery date.
August 22nd, at 11:05 am. I’ll have pre-op at 8am that morning.
And the hospital will call me on August 15th with the pre-op instructions.

I’m so excited that I finally have a date. But I’m super nervous at the same time.

And it seems I will be missing the first week of classes, which start August 25th.
And my wedding is September 6th- so that’ll be a really long day.

But at least I have a date. A glimmer of hope that I will feel better soon.
And at the very least, at least I will have an idea of what is going on in that pelvis of mine.

Dr. Y- Revisit

A lot has been going on this summer- planning A and my wedding (were about a month away now), numerous veterinary visits for our one-eyed cat Icarus for acupuncture and trying to manage his worsening arthritis and luxating patella, work, and of course health.

In all of the drama, I have found Dr. Y again. He left his previous practice and now has a private practice. I had a lovely chat with him today and we will be scheduling my excision surgery for the next couple weeks (before classes start).

I’m excited, relieved, and terribly nervous about this decision.

Dr. Y

I just got a phone call. I was expecting it to be about scheduling my surgery. Instead I find out Dr. Y has left the practice (remember, we were just there on the 9th- had no clue). The nice lady on the phone said I could go back to my referring GYN or see another doctor there since “it’s just a simple surgery.” Ha. I said I’ll go back to my GYN to regroup.

I don’t know what to do now.

Not a phone call you want to get a work… on a bad pain and bowel day… I just have to hold it together for a few more hours and then … then I’m not sure what to do next.

Quick Update

Appointment today with Dr.Y.

He did an ultrasound and found a big ol’ endometrioma on my left ovary. Where’d that come from? And why’s most of the pain on my right side?

Since I’m still in pain, we’ll be doing surgery. I’ll hear from his office sometime this week on when it will be scheduled.

Aromatase Inhibitor Update

I have my second appointment with Dr. Y on Monday. This time won’t just be a consult; there will be an ultrasound and pelvic exam. And we will be discussing how the aromatase inhibitor (Letrozole) with progesterone (norethindrone acetate) has been going.

I’ve been on the new pills since May 14th. That makes just over 3 weeks that I’ve been on them.

I was trying to describe how I’ve felt while on them to A last night. I think they’ve done some to help, but a lot not to as well. I told A last night, that the when the pain is low, I feel better than I have in a while- less fatigued, less uncomfortable; the pain is still there, but I feel better. I can do more around the house- do the dishes, make dinner, clean the house… things I had struggled with before.
Despite feeling better on the low pain days, there are still plenty of high pain days; that pain is severe or very severe, and sharp- usually tugging too.

I went and checked my Catch My Pain graph today to see the pain levels I reported over the three week period.

As you can see, there are are more points below 5 than there are above 6, but the pain is still up and down.

I also wanted to see if the pills had made noticeable difference in my overall pain levels. I found this graph to be the most interesting. I wasn’t expecting the results, given that I’ve been feeling better. You can clearly see how the pain has been increasing over time. There haven’t been any really low, or no, pain days since late April/ early May. And still plenty of high pain peaks. So even though I have been feeling better my pain hasn’t actually gotten any better- at least not on average.

 

 

I’ve been trying to come up with a decent analogy, to how the pills have made me feel, and I think I have come up with a successful one:

Being chronically ill is like been like being in the thralls of winter.

In the winter the low temperature where I live in the blue ridge mountains averages 24 Fahrenheit; the high averages 45 Fahrenheit. On bad days, the wind is fierce, and there may be an accumulation of snow and ice. On good days, the air is still, despite it still being cold it isn’t biting.

Then polar vortex blows through and gives some -11 Fahrenheit days with cutting wind. And those days absolutely suck; you can’t be outside for long without fear of frostbite on any exposed skin, so you bundle up and get inside as soon as possible. Even inside you have to bundle up because your heater can’t keep up.

As spring approaches there are some warm days, maybe 50 Fahrenheit; if it was summer you would think that was cold, but since the weather has been so frigid, that 50 Fahrenheit is wonderful. You shed some of your thick winter layers,  and actually enjoy some time outside. When the weather switches back and dumps a few inches of snow with whipping wind- and you’re back to bundling up,or it drops back below freezing over night, it doesn’t seem quite so bad.

The pills have given me those 50 Fahrenheit days. Before, it was just days of cold and wind that I managed to get through. Even when the the temperatures were bit warmer, the wind was biting and it was hard to be outside. Now, I get to enjoy just a little bit of warmth- a small reminder of what it was like not to be winter. And those 50 Fahrenheit moments help me get through the times where it once again drops below freezing. And the wind has died down; even when it is cold outside, the wind isn’t biting at me, so the cold doesn’t seem quite as bad.

With the aromatase inhibitor and progesterone, it’s still winter, and the polar vortex still rears its ugly head. And while those 50 Fahrenheit days are nice, I don’t think they’re enough. I think it’s time to discuss excision, and hopefully move into spring.

 

*Note: As far as actual seasons go I love winter. I actually hate summer- it’s too hot, and makes me feel awful. But winter makes a much more apt analogy.

 

 

Dr. Y

I had my consult with the specialist today, Dr. Y at Wake Forest Baptist Hospital. Despite the rainy weather, the two hour drive there, and two hour drive home, and the terrible brain fog it was a good day.
I enjoyed meeting Dr. Y and his resident. Sadly, I don’t remember the resident’s name, but he was pretty awesome. Dr. Y seems very knowledgeable about endometriosis. He seems more of a ‘Professor-type’ than your typical MD, but enjoyed that about him.

From this appointment we’re going to start a 6 week protocol of an aromatase inhibitor (Letrozole) with progesterone (norethindrone acetate) (and extra calcium supplements), before further discussing surgery. He doesn’t want to jump right into surgery because of my age, and because I haven’t had any prior abdominal surgeries- so he doesn’t want to start excising things and cause any problems that could possibly be avoided, especially since I haven’t had children yet and do want them in the future so don’t want to risk compromising my fertility in any way. Plus, given that possible clotting disorder in my family, its always best to keep surgery as a last option.
I was happy to hear he didn’t want to do depo or lupron. I refuse to do either of those because of the possible side-effects, and inability to quickly stop taking them if they make my ocular migraines worse. Plus, they generally aren’t effective- which Dr. Y completely agrees with.
I go back on June 9th to report how the drug protocol is working, and do an ultrasound and pelvic exam if surgery is still on the table. Hopefully during that 6 week period I’ll get some pain relief from the drug protocol and can avoid surgery all together (at least for now).

All and all, a very positive day.