Day 30: Recap of the National Health Blog Post Month Challenge

Well, it's been a big month.

Day 1: Why I write about my health
Day 2: Let it go
Day 3: My favourite endo blogs
Day 5: List of 3 things that I'm thankful for and excited about
Day 6: Celebrities with endometriosis
Day 7: A conversation with my doctor
Day 9: Endometriosis survival kit
Day 10: Posting about health on Facebook - a do or a don't?
Day 11: Polka dots and curls
Day 12: Myths about endometriosis
Day 13: My favourite books
Day 14: Tips for visiting the doctor
Day 15: Nominations for the WEGO Health Activist award
Day 16: Over halfway
Day 19: Advice for new (and not so new) doctors, nurses and caregivers from a patient's perspective
Day 20: Alternative treatments
Day 21: Put your moustache on
Day 22: What I'm thankful for
Day 26: I want to change "THIS" about healthcare
Day 27: Busy-ness
Day 28: Laparoscopy 101
Day 29: Unexpected blessings

It's been tiring, but it's also been fun to write about a new topic related to health every day, and read about other conditions that I didn't know much about before.  I'm looking forward to reading some more of the posts now that I don't have to blog every day. There are some thoughtful, well-written blogs I have discovered through this challenge - so if you want to check out posts from other people participating in the challenge, go here.

Since I didn't actually end up blogging every day about endometriosis, I've got a few good prompts saved up. So look out for posts on travelling with endometriosis, the history of endometriosis (hint, vibrators and "wandering" uteruses were involved), the pros and cons of surgery, progesterone intolerance (or why some women go crazy on the Pill) and some discussion on the perception of "invisible" illnesses by society in the coming weeks!

If you're interested, here are some other endometriosis related posts that I have written in the past that were not part of the NHBPM challenge:

Explaining Endometriosis
Pain scales: what it's like to have endometriosis
Endometriosis and feminine hygiene products: my campaign

Thanks for reading and I hope you stick around :)

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This month I took part in National Health Blog Post Month. Click the hyperlinks above to read some of my daily posts and learn more about living with endometriosis.

Day 29: Unexpected blessings

I participated in a focus group on the effect endometriosis has on women's lives a couple of months ago. One of the questions they asked during this focus group was "What have been the positive outcomes in your life from having endometriosis?" When I first heard the question I couldn't think of anything at all. What could be positive about having a chronic illness?

However, after thinking about it for awhile I could think of quite a few things.

For one - this blog. Through writing here, particularly through the NHBPM challenge, I have received a lot of support. I've had people email, facebook message or call me to say that they have been reading and enjoying this blog. It really makes my day when I get one of these messages. I also used to write in a diary and also blog a lot when I was a teenager, which has fallen by the wayside as I got older, and getting back into it through this cause has reminded me of my passion for writing. (Believe it or not, my first grade prediction of my adult self was that I would be an author.)

Through being diagnosed with endometriosis, I have met some funny, strong, spunky women that I would never have met otherwise. Particularly being new to Canberra, being part of a support group has allowed me to branch out of my usual circle of friends. Endometriosis does not have a certain kind of women that it picks to be its host - these women have lives that are very different to mine and it has definitely broadened my worldview.

I take care of myself a lot better since I was diagnosed with endometriosis. I eat healthier (a lot less sugar!), make more effort to exercise and allow myself to rest more. I never used to take time out for myself at all, but I'm slowly but surely learning how to.

The experience of having endometriosis and fighting to get diagnosed and treated has made me a stronger person. I'm not as scared now to speak up and have my voice heard, no matter how "gross" or taboo someone else might find it. I also have more empathy, and you won't hear me saying stupid statements like "People shouldn't have IVF, because if they were meant to be able to have a baby, it would happen naturally." (Very ashamed of that one.)

Lastly, endometriosis has actually improved my body image and made me more relaxed. Sounds a bit odd to have that as a side effect of endo, but after having numerous doctors prod me and see me in all kinds of compromising postions, as well as having to go out in public looking like hell when I don't feel well, I really don't care too much anymore if I wear a dress and a little cellulite is showing, or an outfit doesn't match completely. Being internally examined by complete strangers (or close friends' mothers - that's another story) can do that to you...

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's prompt is to write about the unexpected blessings of your health condition.

Day 28: Laparoscopy 101

via xkcd

I have a friend who's about to go in for laparoscopic (also known as "keyhole") surgery, so I thought I'd share some tips from my experience.

For those who have never heard of a laparoscopy before - it's where a small camera (called a laparoscope) is inserted through a small incision in your navel to see the inside of the abdomen. More small incisions are needed to allow the surgeon to use tools to remove the endometriosis. I only had two incisions during my surgery - one in my naval and one where my jeans' button sits. The abdomen is also inflated with gas (carbon dioxide or nitrous oxide) during the surgery to separate the abdominal wall from the organs and allow the surgeon a clearer view.

Cross section of the body during laparoscopy

So what's the point? Laparoscopy is currently the only definitive way to diagnose endometriosis. Some doctors may claim that a clear pelvic ultrasound can rule out endometriosis but it is not true (it happened to me). Laparoscopy is also one of the main treatments for endometriosis, with ablation (burning) or excision (cutting) of the endometriosis conducted during the procedure.

*Note: Do no search google images with the word laparoscopy if you are faint hearted. You have been warned...*

How to prepare

• Give your workplace as much notice of the procedure as possible. I only found out the date of my operation two weeks before it, but I had let work know that I was on the waiting list for the operation, so they knew it was coming up.
• Go on the Pill for a few months before surgery if you can. If you are going to have a Mirena inserted, its best to go on the Pill for a few months before to thin your uterine lining. I didn’t, and I bled for about 2.5 months straight after my operation
• Read about surgery on blogs like this. Don’t read so much as to stress yourself out, but read enough to know what to expect so you aren't shocked. (I wish I'd known about these blogs before my operation)
• Find out if your hospital has a gynaecological triage that you can access 24/7, just in case you start vomiting after the op (this would've been of incredible use to me).

What to take to the hospital

• An overnight/maternity pad. You will most likely bleed (although I didn't bleed very much for the first couple of days) and the gauze the hospital gives you is not adequate if you are moving around (ie from the hospital bed to your car)
• Loose, clean clothing to put on after the operation. You’re going to feel pretty gross, so you might as well be clean! I recommend a low, loose waisted jersey or floaty material skirt with a loose tshirt. You won't be able to stand up straight after the operation so take that into account when choosing your clothes.
• A family member/friend for support if possible. If you have someone that can wait with you and meet you when you come out of the operation, that is optimal, but basically get as much help as you can get. It's nice to have someone there.
• Something to entertain and relax you while you’re waiting to get called in to the operation. A book and an ipod are a good idea, depending on what your hospital allows you to bring into pre-op.

If this is your first operation, make sure you tell the anaesthetist to make a cocktail that won't make you nauseous. You don't want to vomit on a stitched up stomach.

This is the skirt I wore (waistband was nice and loose), with a looser t-shirt. Image via etsy

What to expect after the operation

• Your stomach is going to hurt, and it will be hard to walk. I was wheeled out of the hospital in a wheelchair - if you can wrangle this I highly recommend it!
• I was strangely devoid of pain for the first twenty minutes or so that I was awake. Then it hit me, and was not very pleasant at all. I found it hard to communicate to the nurses that I needed more pain relief, so I just freaked out all the other day surgery kids with my moaning.
• You may get shoulder pain from the gas that they put into your abdomen. In my experience, it's not too bad, and goes away after a few days. Hot water bottles are great for this.
• I cried myself into a big blubbery mess when I was first coming out from anaesthetic, but I didn't care. You probably won't either if you do.
• I was quite peppy the first night when I got home (I think it was the icy pole my nurse gave me). The next two days were the worst - I was vomiting for the first three days and it only stopped when we went to the hospital and got me put on a drip with anti-nausea medication. I was also pretty nauseous for the first couple of months afterwards.
• You aren't really going to feel like eating - well you will, you'll be really hungry, but you might not be able to keep it down.
• It's going to take your guts a few days to wake up from the general anaesthetic - take this into account when you eat, even if you aren't nauseous. Go for bland, easy to digest foods.

If you have someone there, have them talk to your surgeon after you have been operated on if possible. They tried to tell me about the extent of my condition while I was coming out from under anaesthetic and I hardly remember anything.

Tips for recovery:

• Ice blocks are your best friend, and after that, pre-made chicken soup. Don't count on being able to cook for yourself for awhile.
• Take it easy on the codeine/other opiods if you don't know what your sensitivity to them is - you'll either end up majorly constipated and/or vomiting. Trust me.
• Don't plan anything major for the next couple of months. In total, I had two and a half weeks off work. You may need more or less, depending on your operation, but make sure you have the flexibility to cope with either. (ie don't plan a holiday a month after your op). You won't have much energy for the first few days at least, most likely more.
• Book an appointment with your gynecologist for a week after the operation (or less). My gynecologist booked my follow up appointment for 6 weeks after my operation, but I needed to see a doctor just two days after my operation. I ended up going to a few emergency gynecologists because of small complications.

*Disclaimer: There can be some extreme, but rare, complications that come with a laparoscopy, as with any surgery. Make sure that you talk to your doctor about all the potential outcomes. (I don't have the expertise to advise in that area...). Also, no two surgeries are the same - these tips are from my experience, hopefully you don't get as nauseous as I did!

Click after the jump to see my scars 8 months on. (I was always curious as to how the scars faded after my surgery)

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's post is a bonus prompt - tips for the newly diagnosed.

Red and blue, the perfect hues

I had the chance to wear one of my favourite dresses to a wedding recently. I may have had to not eat chocolate for a week to get into it again... it was a little snug. It is so much fun to wear and I always get lots of compliments on it. Definitely a good buy. (And who says that glasses wreck formal outfits!)

Note: my hair was curled for the event, but along came some rain and the curls disappeared... hence wonky hair.

Another wedding of a dear friend

A couple of years ago at my graduation ball - I always match it with a dash of red.

Dress - Miss Gladys Sym Choon (Fever London designs)

Cardigan - Kookai

Shoes - Miss Gladys Sym Choon

Day 27: Busy-ness

via Pinterest

"I'm too busy."

"I just have so much on."

"I'm so tired."

How often do we hear these statements from people around us? How often do we say these things ourselves?

I cringed at myself recently when I wrote this in a message to someone. Yes, it's true, I have a lot going on in my life, and having to manage extra rest and doctor's appointments plus travel with work can make it a little more complicated, but that doesn't mean that I should be "too busy". Really, if it's reached the stage where I am always saying "I'm so busy", that probably means I need to take a step back and re-evaluate.

One thing I've realised as I've gotten older (not that I'm that old - definitely not claiming to have much wisdom here!) is that to a large extent, you control how busy your life is. You can say yes or no to many things, even things that may appear unavoidable.

Unfortunately, sometimes choosing to not be busy means saying no to things that you really would like to do. I think that is definitely the hardest thing for me - since I want to do everything! I like to jump on opportunities when they come my way, so it's hard for me to let them pass me by with the chance that the opportunity may not come up again. But sometimes that is what I need to do to take care of myself.

I particularly have to be mindful of how I need to put limits on myself, otherwise my body will put limits on me and I will have no say whatsoever in the matter. If I put limits on myself, I'm more in control of what I can and can't do, and can usually end up doing a lot of things that I want to do. If I just say yes to everything (like I am prone to doing), I end up in a heap not being able to do anything. I don't think that this is necessarily unique to chronic illness/endometriosis, but I think having a chronic illness makes you more susceptible to collapsing earlier on in the game.

If you're anything like me, after reading this post you're going to be hearing yourself saying "I'm busy" all the time. Let's see what we can do to change that...

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Since I'm behind, I've taken a mish mash of previous topics I have wanted to write about and rolled them into one, particularly strengths & weaknesses and how you take time out for yourself.

Day 26: “I want to change THIS about healthcare...”

Two words.

electronic records

Do you know how much hassle and upset would be avoided if all medical records were electronic and were transferable from hospital to hospital? I know this is something that the medical profession is working towards, and that there are issues with privacy. However, I feel like the rest of the world has caught on to the e-trend already and the medical profession has fallen a little behind.

Throughout my journey with endometriosis, I have had to explain my symptoms, treatments and extent of my endometriosis countless times to different doctors. I had to move between doctors as with each one I hit a brick wall where they couldn't help me anymore. I have also moved states - from South Australia to the ACT. Having to remember every single detail of your condition every time you see a new doctor, so that they can give you the best care possible, is a lot of pressure to put a patient under. It's easy to forget things in a short visit, even when you have a designated folder or prepared list. It can also be quite upsetting to have to recount every bad experience every time you see a new doctor.

The worst of these times was when I was about to go in for surgery to see if I had endometriosis or not.

My surgeon was not who I thought it would be (not my regular gynecologist) and apparently had no idea of my history. All he had was a few short notes on what had been requested to be done. Laparoscopy (to see if I had endometriosis), diathermy (to treat it if I did have it) and nerve ablation. My gynecologist had also chucked in something about putting dye in my fallopian tubes to see if there was scarring and to give me a better indication of my fertility.

He saw the dye request, saw my age and marital status, and automatically questioned it. He didn't understand why I would need to have that done at my age when I was single and not planning on having children in the immediate future. My gynecologist had actually suggested it to put my mind at ease, and I figured, if they are going in anyway, they might as well!

This surgeon, however, didn't see the point, and so he made me feel embarrassed about it (pretty much the last thing you want to feel when you haven't eaten or drank in 16 hours or so, and are about to find out whether or not you have a chronic condition through your first surgery) and he ended up not doing it.

During this same conversation, I outlined my symptoms to the surgeon. He asked if I had tried the pill, and said it was "probably just PMS", again not the words you want to hear when you are hungry, thirsty, scared and emotional, and have already gone through all of this a million times to actually get to the stage of surgery.

Context is important. If the surgeon had had my medical file, with a list of all the symptoms I had ever reported, all the doctors I had seen, and all the treatments that I had tried (and had failed), maybe he would not have questioned me. Maybe one of the doctors would have figured out that it was endometriosis earlier if they had seen the number of doctors I'd been to, the different pills I had tried, and the ultrasounds I had had on an official document, and not just from my mouth.

When I was coming out from under my anaesthetic, the surgeon explained to me the severity of my condition (stage III) and where it was in my body. I don't remember much since I was pretty drugged up, but they handed me an envelope with the surgical notes in it - the only record that I have access to with details of my condition. This kind of information would be perfect to send over email (it could be an opt-in thing, if people are worried about privacy), so that the patient has a copy that they can access no matter where they are.

Patients in other places - do you have electronic records in your healthcare system? Healthcare workers - do you see any problems with this scheme?

In the future, all doctors will be this excited to use electronic health records.

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's topic is about something you would like to change about healthcare.

Day 22: What I'm thankful for

Today is Thanksgiving in the US and the NHBPM prompt is themed accordingly - write about what you're thankful for! It's so easy to get caught up in all the things you don't have when you're health is less than stellar, so I'm glad they chucked this prompt in. (Hey, it's so easy to get caught up in the negativity even when everything is perfectly fine!)

So, today I was thinking about how much better my life is at the moment than it was this time last year. Last year I had no confirmed explanation for my pain and fatigue, I felt very isolated in the house I was in (although my housemate was actually quite good, just not social) and I hadn't yet gotten the job that I have at the moment, which I so desperately wanted.

One thing that has made a huge difference is my awesome housemates and our adorable house. I really feel like I've hit the jackpot with these guys. It feels like home. It's nice to come home to people who really care about you and a house that reflects your personality and I think I take that for granted just a little bit. So thanks for making my life better, guys!

Samples of some of the things I love about my house: roses from the garden, our huge tea collection (what's in the photo is by no means the extent of it), cute pillows, fairy lights and comfy couches

I also have such lovely, supportive, friends and family here in Canberra and all over the world. I like that even though I have been in Canberra for almost two years (!) many of my friendships from Adelaide are still flourishing. It's nice to have people who care and put in that extra effort to see you when you're only back for a little while, who send little notes of encouragement or who make the effort to come visit, so I hope you all know how much I appreciate it. It was also so good to see my US family a few weeks ago. I miss them terribly but I am glad that I got to spend the time over there.

While we're talking about things I'm thankful for - I thought I'd mention a few things that make me feel more at home here. Tonight I got a haircut and it just reminded me that I really do have it good. I have a great hairdresser who I trust implicitly with my hair. I've never had that before in my life, so its nice to actually get excited for hair appointments and not have to worry while I'm sitting in that chair. She always makes it look amazing and I walk out feeling like a movie star. Having favourite cafes and restaurants and even a regular dry cleaner that I know won't wreck my clothes makes this feel all the more like home.

I'm also thankful to have found a great GP and a good support network of endo girls here in Canberra. My GP always fills me with hope when I leave her appointment and I no longer dread the visits. I had dinner with one of the endo girls on Tuesday and it was refreshing to be able to talk about my experience with endo and know that the person I'm talking to knows exactly what I'm talking about. We went to a yummy Ethiopian restaurant in Pearce, and again it reminded me of how lucky I am to live in a country that is so multicultural, where I can go out and eat this yummy food.

One thing that I know I take for granted too much, but I am also very thankful for today, is my job. I never in a thousand years would've dreamed that I would be able to do the stuff that I'm doing right now at my age. I am so thankful for the opportunities I have to do some pretty cool stuff and also the fact that I am be able to get the medical help I need without stressing about money. (Flexible hours are also a total lifesaver).

I could probably go on forever, but I'll stop there. So, happy Thanksgiving.

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's topic is thanksgiving.

Day 21: Put your moustache on

November Movember is one of my favourite months of the year. The weather is warming up, summer is nearing and many men decide to display their facial hair. So to support this I decided to not only donate to a great cause (prostate cancer and mental health charities), but to put my ears where my mouth is and buy some cute moustache earrings so I can join in on the fun.

Prostate cancer and mental health aren't the most comfortable topics to talk about in the world, and it is great that there is a quirky awareness campaign to make it more comfortable. I hope that one day endometriosis will have a quirky awareness/fundraising campaign like this to take away the stigma, increase funding for research and get more women to get checked out and take their pain seriously. At the moment I am planning on doing a fundraiser in March (endometriosis awareness month) but am yet to think of any good ideas for something I can do. If anyone has any ideas, just give me a shout out!

I have to say that I don't think I will be limiting my wear of these earrings just to the month of Movember. Also - check out the awesome skirt I got last weekend in a Sydney antique shop for just $10. I love finding gorgeous bargains!

Shirt: Forever 21

Skirt: vintage - random antique store in Sydney last weekend - $10

Shoes: Acoustic Stomach

Earrings: from this store on Etsy - $6.95

*While the proceeds of the earrings did not go to charity, I did donate already. In fact, if you are doing the moustache thing for Movember, feel free to comment with your donation page and I will donate! For some reason the friends that I usually donate to are not doing it this year, so I'm looking for more people to support.

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's topic is a bonus prompt: Raise awareness for another condition!

Harvest Festival Review

I went to Harvest Festival in Sydney over the weekend. It was one of the best festivals I have ever been to (second only to Womadelaide.)

Good points:

The excellent line-up. I had never seen any of the bands on the line up before. It was a 90s music lover's paradise. I had three absolute highlight acts when usually there is only one.
The good natured crowd. For me the one thing that can ruin a great festival is the crowd. At Harvest there were no neon singlets in sight, drunk/drugged people were at a minimum, there was no shoving and there were a limited number of people on other people's shoulders. People really seemed to be there for the music, not to be seen. Great crowd.
Great style. At some stages during the festival my friend and I just sat and watched everyone walking around. As another friend said earlier this week - I've never been somewhere where everyone looked so effortlessly effortless. It was fun to see what different people were wearing.

Good organisation. The timetable was set out really well so that you could catch most of the acts if you wanted to. Beirut cancelled on short notice and you couldn't even tell, everything was seamless and to schedule.
Great stages and setting. The Great Plain was my favourite stage - a massive natural ampitheatre which was never overcrowded. The stages were close together without too much sound crossover. It was also lovely having it in a park with the trees and shrubbery (Monty Python anyone?)
The sideshows. I've never been to a day festival with so many sideshows - it was nice that they put the effort in to put random artists on the side and have so many wandering art installations (eg the dancing robot complete with girls in lab coats and the forest on stilts.)
Free bananas. They had free bananas - yummy, healthy, instant food that you can eat while dancing up a storm at the stage that you made it to since you didn't have to wait in line. Best festival idea ever! They are also great dance accessories.
Lots of free water. I get really dehydrated at festivals but don't want to lug around a massive 2 L bottle so it was nice that they had water stations at all the main stages.
Toilets. We all know that festival toilets generally leave a lot to be desired. However, at Harvest there were only a few messy ones, they were all flush toilets, they never seemed to run out of toilet paper and  you never had to wait in line for more than 2 songs for a toilet. Speaking of which - the toilets were right next to the stages with a great view so you didn't feel like you were missing out anyway!

Not-so-good points:

Crowded trains are fun

The food. It wasn't as multicultural/vegetarian/interesting as I expected. There was one vegetarian booth that was great, but next year it would be awesome if they had more like that.
Post-festival transport. The concert organisers appear to not have notified the police or train systems that the concert was on. They told everyone to take public transport but then didn't get the train system to put on extra trains or open extra ticket machines so there was only one train going every half an hour and a huge line for the ticket booth. It ended up taking me 2.5 hours to get home from Parramatta to Maroubra via train and then taxi when it should have only taken about 1.5 hours with room for delay. However, the crowd was so patient and helpful that it ended up not being too much of a bother.

Who I saw

Sigur Ros

Dexys (Highlight: Come on Eileen)
The Dandy Warhols (Highlight: Bohemian like you)
Mike Patton's Mondo Cane (Highlight: Urlo Negro, but to be honest, any time he was on stage was a highlight, particularly when screaming or loudspeakers were involved. He's the ex-frontman of Faith No More and this endeavour involves him covering various 1960s Italian pop songs with an orchestra. Amazing.)
Cake (Highlight: Never there)
Ben Folds Five (Highlight: Song for the Dumped)
Grizzly Bear (Highlight: Yet Again)
Sigur Ros (Highlight: Sæglópur, but really, anything. At one point they were playing their guitars with bows which was amazing. Much heavier live than on CD but I liked that.)

I recommend

Watching this concert.

Day 20: Alternative treatments for endometriosis

I think there is definitely a place in medicine for "alternative" treatments. If there is one thing I have learnt through this process, it's that western medicine does not have all the answers and often it can have a bit of tunnel vision. I think it is important to have a holistic view to medicine and try as many different treatments as you need to before you find something that works.

Currently the only supplements I am taking are Krill Oil supplements. The omega 3s in this oil has been found to reduce the risk of developing endometriosis and improve immune function by a few studies. From my own experience I have found that particularly in the first few months after having surgery, I could tell when I had forgotten to take my omega 3 supplements for a few days as the pain would be worse. I've been a bit slack lately so it's not quite so obvious as I don't think I am taking them regularly enough (I've been good this week). I take Nature's Own 1000 mg at the moment as they are the cheapest, but I have taken Nature's Way 500 mg krill oil + fish oil before. (I'm trialling the higher dosage to see if it makes a difference.)

I'm not sure if people would consider nutrition an "alternative treatment" but I consider it to be one as it is not something that my gynecologist told me to do. I talked to a nurse at the Canberra Endometriosis Clinic and she recommended that I limit my intake of alcohol and coffee and to make sure I get enough sleep and exercise. I already had stopped drinking coffee a few years ago because I recognised that my guts reacted to it quite badly and I got severe cramping after drinking it, but this year I also discovered something else it gives me - terrible anxiety. So my sneaky coffee every six months when I drank it because I craved it so badly and just dealt with the pain has now been abandoned. I'm also trying to go completely alcohol free for a few weeks to see if that helps with pain/anxiety. They also say that cutting out sugar helps but I haven't tried that yet.

Massage is another alternative therapy that I find really improves my condition. I had my first Thai massage today and it was amazing. I have a lot of tension in my back from the pain (lower back) and changes in my body from the Mirena (upper back) so it helps to "decongest".

Alternative therapies I would like to try in the future include acupuncture and hot rock massage. Has anyone ever tried these therapies before? Have they improved any health complaints? Do you recommend them? (Any recommendations for the Canberra area?)

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's topic is: Write about alternative treatments / regimens / medicine. What do you support? What is crazy?

Day 19: Advice for new (and not so new) doctors, nurses and caregivers from a patient's perspective

1) Don't be condescending or dismissive. Be respectful and take their concerns seriously.

I think this should be a general rule when it comes to interacting with anyone, but unfortunately I have come across a few doctors who don't appear to agree with me. (Not all doctors are like this, of course!)

2) Be aware that they may be fragile.

This one unfortunately partly follows on from number 1. Your patient may have been dealing with pain and fatigue for the better part of a decade before they get to you. (The average time between onset of symptoms and diagnosis of endometriosis is 8 years.) They may have been dismissed by previous doctors and their workmates, friends and family. They may also start doubting themselves and downplaying the symptoms they are experiencing.

which leads to...

3) Recognise the link between chronic illness and mental health

Many people who have chronic illnesses also have issues with their mental health. Whether it be anxiety, depression, or both, having to deal with the uncertainty of the future and the symptoms in the present takes its toll. It is important to take this into account when treating your patient. A referral to a psychologist or counsellor may be needed, or even medication if counselling is not effective on its own.

The good news is that if you recognise the link between chronic illness and mental health, your patient will probably feel more sane, more supported and this will lead to more effective treatments and a happier patient overall.

4) Stay positive but be realistic. Tell them everything you know.

Don't tell your patient that they are going to be completely fixed by whatever treatment you are prescribing. Let them know that it may not work, but it is worth trying, and that if it does not work, you have other options that you will explore further. This will give the patient hope without raising their expectations too high and again it will make them feel supported.

I have a friend who was told by a nurse that she will probably need assistance to fall pregnant due to her gynecological conditions. This was despite having many doctor's appointments prior to this where her regular gynecologist made no mention of any potential problems she may have with fertility. This was rather traumatic news for my friend to hear so late in the game from someone that she was not familiar with. Make sure you cover all the bases.

5) For gynecologists: if possible, have a session dedicated just to people with infertility and/or endometriosis.

Someone who is having trouble conceiving generally is not going to have fun at their appointments if they have to sit in a sea of pregnant women. It only reminds them of what they don't have. Having sessions at your practice dedicated solely to those with infertility and/or endometriosis solves this problem. (Even those with endometriosis who are not thinking of having kids in the immediate future will benefit from this as it is not a reminder of something that is uncertain.)


And finally - we know you're not perfect. No one is. So this is just a list of things that I think would help me and other patients in receiving treatment. Don't beat yourself up about it if you haven't done these things or forget to do these things - I'm just trying to show my point of view.

For my post on tips for patients on getting the most out of your doctor's appointment go here.

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today I'm taking a bonus round and giving advice for new doctors, nurses and caregivers.

A great weekend

So I ended up having a crazy awesome weekend that feels like it is still going (I just got home from the Banff Mountain Film Festival Radical Reels tour). I'm having the day off work tomorrow (hooray!) so hopefully I will find some time to catch everything up with the challenge and do a review of Harvest. Here's a teaser - my favourite act ended up being this guy:

Totally unexpected!

(And for good measure, here is the Radical Reels trailer)

Harvest Festival

These are all the bands that I will be enjoying today (listed in terms of how excited I am for them in increasing order):

and last but not least....

Yes - it reads a little like the best hits of the 90s with a few random recent bands in there too. I'm going to love it.

Have a happy Saturday!

Day 16: Over halfway...

Ever felt like this?

I had a tiny-little-mini-freakout last night when my phone inexplicably died. One minute it has 40% battery, next minute it is black screen and unresponsive. Not even the hold-the-power-and-home-buttons-down-and-cross-all-your-fingers-and-toes was working. This was the last thing I needed, which is partly my fault, but more on that another day. My to do list at the moment is actually a full A4 page long, with a lot of stuff that involves money and paperwork (everyone's favourite), and I'm planning on heading to Sydney* this weekend to see a festival which I have done absolutely no organising for in true current Libby style. (Thankfully, eventually my phone started working again!)

So today I'm going to not push myself too much and leave you with a short video with stories from some women with endo. It's worth the watch just for the sweet kiwi (New Zealander for all you non-Aussies) accents.

*to all the potential robbers out there that may read my blog and potentially know where I live - nice try, but I have housemates who will be home this weekend...
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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's prompt is to use a picture or video to inspire a post.

Movie Roundup

I've seen a lot of good films lately due to the Canberra International Film Festival (CIFF) being on. I'm generally fairly hard to please when it comes to movies so I was quite surprised when two of the movies I've seen in the last few weeks have made me want to go out and buy the DVD. So if you're looking to see a good movie check these two out:

Poster courtesy of IMDB

I saw this movie last night as part of my CIFF membership. It details the final year of a coach's run of coaching at Mannassas Highschool in Memphis, Tennessee and the stories of some of the kids on the team. It will make you bawl while you are grinning your face off. It's out on DVD, so hightail it to your DVD store and check it out.

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Poster courtesy of IMDB

This movie is still in theatres in Canberra so hopefully it is where you are too, because you should go and see it! It is based on the true story of a quadraplegic man in France (yes, it has subtitles), the man he hires to care for him and the hijinks they get up to together. I loved every second of this movie. Stellar acting by both of the leads. For those who have known me for a long time, take note of the fact that it almost beats 500 Days of Summer in how much I love it. That is a big statement for me...

Day 15: Nominations for the WEGO Health Activist Award

Today's NHBPM prompt is to nominate someone for a Health Activist Award & explain why you nominated them.

I've chosen two blogs to nominate for the awards - Endohope and Mind Your Body.

I nominated Endohope for the Best in Show: Blog Award (Someone who exemplifies the use of blogging.) Michelle's clear and concise blogging style gives practical tips for living (not just surviving) with endometriosis. The blog lives up to it's name and you are definitely filled with hope upon reading. This blog is one of the reasons I decided to start blogging about endometriosis.

I nominated Mind Your Body for the Silver Stethoscope award (A healthcare professional who utilizes social media to make the world a better place). The people at Mind Your Body epitomise the attitude that I believe healthcare professionals should have towards patients with chronic conditions. Their empathy shines through.

Nominations are open until December 31st, 2012.

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Todays' prompt is to nominated someone for a Health Activist Award and write a post about why you nominated them.

Day 14: Tips for visiting the doctor

Comic thanks to xkcd

1) Have a pain/symptom diary and know what the symptoms of endometriosis are.

When I visited the Canberra Endometriosis Centre (a centre that I highly recommend if you are in the ACT area) after my diagnosis I had a meeting with one of the nurses there. She listed off a number of symptoms and asked me if I had them and to what degree they affected me. Some of the list I had always thought were normal before - like constipation or diarrhoea with your period, pain with bowel movements and painful urination, as I had had them for as long as I could remember and so never thought any different. (And when you do ever talk about these things with anyone? For all I knew, they were normal!) After she pointed them out to me (and this could be seen as a bad thing, I guess), I noticed just how often I experienced these symptoms.

It's important that your doctor knows all of your symptoms and how often you experience them, so they can judge whether it might be endometriosis or something else, like irritable bowel syndrome. I often found that when I was not in pain it was easy to forget how bad it was and I ended up playing down the severity of it to the doctor. It's important to record your pain while you are having it so that the doctor gets the full picture.

Pain/symptom diaries can also be handy when trying to plan your life around when you are likely to get pain. If your pain was fairly predictable like mine (most months it was the 7 days before my period, and the first few days of my period, as well as a day or so for ovulation), you can then plan to take it easier and get more rest during that time by scheduling less activities.

Pain/symptom diaries are also useful when trying different treatments to see if the treatment is actually having an effect.

Pain scale thanks to Hyperbole & a Half

Useful things to include in a daily pain/symptom diary include:

• intensity of the pain on a 1-10 scale. (this is hard at first because it is very subjective but at the same time it is useful for communicating differences between different pains to your doctors)
• location of the pain
• type of pain (eg dull ache, pulling, tugging, sharp twinge, tenderness, throbbing, contraction-like)
• any time dependence of the symptoms (eg worse in morning, better in evening)
• triggers (eg overdoing it, stress, drinking coffee, spicy food, forgetting to take supplements, not doing enough exercise)
• remedies and whether they were effective (eg hot water bottle, exercise, different medicines)

To keep record of your pain you can use a chart or app. I use My Pain Diary Lite from the App Store. (There is also a paid version for $5, but I find the free version works just fine.)


2) Be aware of your options.

Read as much as possible about endometriosis and pelvic pain itself and the treatment options out there. One of the problems with getting treatment for endometriosis is that many doctors aren't aware of the less invasive methods that can be tried first before the more extreme surgery option. Some people can manage their endometriosis using hormonal methods (such as the Pill, Mirena or Implanon) or through diet, supplements and exercise, and surgery is not needed, so it is important to explore these pathways first.

When it comes to surgery, excisional surgery is the "gold star" treatment. Not all surgeons do this surgery so find a surgeon in your area who does it, or consider going elsewhere for surgery.

Other treatments for pelvic pain include acupuncture, yoga, and pelvic flood physiotherapy to relax the muscles. A holistic view to health including treating associated depression and anxiety may also improve pain.

There are many resources for learning about different treatments out there. There are a number of different blogs like the ones listed in this post or books like Susan Evans' Endometriosis and Pelvic Pain (free e-booklet available, but the book is also well worth the money). Check 'em out!


3) Don't be afraid to push for treatment.

I only got diagnosed and treated for endometriosis because I went to my GP and told her to give me a referral to a gynaecologist I had heard was good. Once I went to that gynaecologist he basically left it up to me whether I wanted to have the surgery or not (not that he gave me another option for treatment other than having a baby, I can't say he was the best gynaecologist after all).

Before this, I had a few different doctors who tried a few different things. I had one doctor that did a pelvic ultrasound and when that came back clear, he sent me on my way. Do not accept this. Endometriosis can never be ruled out by ultrasound. I have stage III endometriosis and it didn't show anything. Another doctor I had put me on the Pill for pain, but it didn't work and just gave me worse symptoms than before.

What I'm trying to say is, if one doctor will not help you, keep going, try other doctors. Ask friends for recommendations. Search the internet for endometriosis specialists in your area, and read the reviews. Of course, internet reviews should always be taken with a grain of salt, but generally, if your doctor is getting averages of 2.5 stars, then you're probably not going to have as good an experience as you would with a doctor who averages 5 stars.

I had to be persistent and brave the setbacks. The sad fact is that you probably will have to too, but just know that if you persist, you may get answers and things might just get better.

I'm still having to do this now, even after diagnosis. When I told my doctor that I have bladder pain she tested me for a UTI, and when that came back negative, she didn't keep investigating. I've brought it up again at subsequent appointments and she has referred me to another doctor to keep investigating.

4) Have realistic expectations.

If you have pelvic pain, it may not be completely fixed by whatever method of treatment your doctor uses. I think that if the doctor had told me that surgery didn't always work, I may have had an easier time recovering mentally from the diagnosis and the operation. It's important to know that you may actually have to live with at least some pain for the rest of your life. Hopefully not, but at least this way you are not let down.

5) Have a plan of what you want to discuss with your doctor.

This should probably be number one on the list - you generally only have 15 minutes that you may have to wait a few months for, so make it worth your money and time! I generally make a list of my concerns and take it with me to the appointment - I also have a folder dedicated to all of my health related paperwork. Rehearse your first few sentences if you need to, just so your doctor knows exactly what you are concerned about and why you have come to see them. Doctors see a lot of patients and you want them to do the best job possible for you, so help them out a bit and make it clear what your concerns are.

I know for me, this tip has made my life much easier - lately I've been going to at least one appointment a week, more often two, so it's important that it's worth the time I take out of my work day.

6) Know that you are the one in control.

No doctor should force you to try any treatment you are not comfortable with. It is your body and you are the one that will have to deal with any repercussions, not the doctor. Also, you need to be the one to be active and involved in your health - a doctor can talk to you all day about how you should do this or that, but in the end, you need to be the one that makes productive steps to improve your health.


For more tips go to this post in Mind Your Body - a blog focussed on managing the mental health of chronically ill patients by two psychologists in the US. Just shows that there are some really great doctors out there - don't give up hope!

Also stay tuned - later this month there will be a post with tips for health care professionals and caregivers for dealing with people with endometriosis.

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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. This post is just me taking liberties and writing about what I felt like writing about today (seeing as I had two appointments scheduled today).

Day 13: My favourite books

Recently I have been on a bit of a reading binge and have come across a bunch of new favourites. They have been especially comforting to read while coming to terms with my diagnosis. Here are a few:

Pretty is What Changes: Tough Choices, the Breast Cancer Gene, and Learning How to Live in the DNA Age - Jessica Queller

I started reading this book about 5 months after my surgery/diagnosis. I was starting to realise that the pain was not going to go away and that the surgery had not completely fixed everything, and had made some things worse. In this book, the author writes about her struggle to deal with being told that she has the BRCA "breast cancer" gene mutation. What really hit home for me was the shock and grief that the author described feeling after her diagnosis. While endometriosis is a different disease and is not fatal, I had and still do have very similar feelings about my diagnosis and this book made me feel sane again. It is very readable and I recommend it to everyone - you will leave with a more open mind and a greater capacity for empathy.

Wild: From Lost to Found on the Pacific Crest Trail - Cheryl Strayed

I devoured this book soon after my surgery. It is the memoir of the writer of the online column "Dear Sugar". At the age of 26, after her mother passed away from cancer and her marriage broke up, she decided to walk the Pacific Crest Trail (PCT) solo. A pretty crazy and stupid idea in reality but an enthralling read. Reading this book filled me with hope that if she could overcome her setbacks and hike the PCT,  I could deal with my health problems and come out on top. I also heartily recommend this book to everyone - the honesty is unlike anything I have ever read before.

An Exact Replica of a Figment of My Imagination - Elizabeth McCracken

First up - this book is about a woman who first baby is still born. The predominant reaction I get when I tell people that I read this book and enjoyed it is that I must be a masochist. However, although I know that I am in a completely different situation, I also identified with how a veil of secrecy is put over still births. Before I read this book I had no idea that miscarriages and still births were so common. Before I was diagnosed with endometriosis, I had no idea that it was so common. Both are issues that are harder to deal with in secrecy and need more awareness so that people who have to deal with them do not feel so alone and broken.

You may see the theme of memoirs running through this post - interestingly enough I don't think I had ever read a memoir before my diagnosis whereas at the moment it is almost all that I read!

On a side note... any book lover should check out Goodreads. I used to have little slips of paper all over my house or random notes on my phone with lists of books that I wanted to read - now I have it all on there! (They have an app too.)
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This month I will be taking part in National Health Blog Post Month. Check back every day to see the new topic and learn more about endometriosis. Today's topic is: Book report. What’s your favorite book and how can you tie it to your health or life?