August 10, 2015

Visanne Day 1

sylvia Uncategorized awareness, emotions, endo, endoactive, endometriosis, fertility, fitness, goals, healthy eating, hormones, kayla itsines, motivation, pain, the pill, treatment, Visanne 1 Comment

Side note: I wrote this post on July 3rd but it mysteriously got deleted. I started again. Now it finally makes it’s way back onto my blog. However I am back-dating it so it is clear which date I started taking Visanne.

3.7.15

So today is Day 1 on Visanne. I’ve had my box of Visanne sitting in my bathroom draw since it was released on March the 3rd this year. Since our wildly successful campaign on change.org to have it released here in Australia, so many people have asked me how I’m going on it – assuming that I’d be taking it as soon as was made available. However, the campaign to have Visanne released in Australia & NZ (unfortunately it was not released in NZ sorry Kiwis!) was not just about me, nor was it ever designed to only benefit me. It was based on the principle of equal opportunity and that if there was a treatment option for Endo available overseas, we all deserve the opportunity to try it if we want. All of us. And that is what we achieved.

BUT. Many of you would argue that the price of Visanne means that you do not have equal opportunity, that you remain excluded because you can’t afford it. That is absolutely true and completely unfair in my opinion.

About a month ago there was a lot of talk about Visanne and the price discrepancies between each pharmacy on EndoActive’s facebook page. So, we did a shoutout and the best price we were informed of was $59.95 for 1 month’s supply from Payneham Rd Chemplus Compounding Pharmacy is SA. Pharmacist Lewis Pounentis kindly offered to accept your scripts via mail and he will then post your order to you plus a delivery fee. That offer still stands but I would encourage you to talk to your local pharmacy and ask them to match his price.

I agree that the steep pricing is totally unfair and while (over on our EndoActive page) we have always been adamant that Visanne won’t work for everyone and isn’t a magic bullet, our campaign to have it available here was built on the foundations of equality and social justice. If you’ve read my blog for a while or watched my presentation at the EndoActive Conference, you’ll know that I’m very much into natural & holistic ways of managing Endo – positive psychology, food, exercise, mindfulness, supplements, acupuncture – whatever works! But if others have access to a treatment option for Endo, so should we. That continues to be the reason why, through EndoActive, we are pushing for a ‘fair go’ – not because we are advocating a singular drug but because it is the only one designed specifically to treat Endo and therefore you should all be able to access it at an affordable price, should you decide to try it.

Having Visanne released here was about RAISING AWARENESS that there are 1/2 a million Australian women who live with a disease that is not even recognised as being a serious, chronic condition. This is not just about a drug – it’s an ongoing movement about fairness, people power and making our voices heard. As EndoActivists, it’s our responsibility to get Endo OUT THERE and make those changes happen so that’s what we’re gonna do.

Moving on… Last year at the time of the petition I was in terrible condition. Endo was destroying my life and I was experiencing chronic pain every single day. Amazingly, this year my health has improved so much that by the time Visanne hit the shelves, I didn’t have the same sense of urgency to try it. I’ve felt fantastic nearly all year but knowing that Visanne has been proven to reduce the size of endo lesions (and the Pill has not) makes me really want to try it.

I’ve remained on the same OC pill, (Zoely) for 18 months or so but have really focused on the natural side of things like diet (SO IMPORTANT), pacing, positive psychology, exercise and lifestyle. (Admittedly I have seriously slacked on the exercise since winter settled in just over a month ago but am trying to kick my arse back into gear!)

It’s difficult to pinpoint which thing has made the biggest difference or what suddenly made me turn a corner with Endo as it can be so random but I believe that those daily changes I’ve been making have definitely contributed to me feeling so much better. With the exception of a flare-up in March, which coincided with me having the flu, I have been pain-free for the whole of 2015. Yewww!

One thing that’s really important when you have Endo and particularly when trying a new medication is DIARISING. Keeping a health journal can be really useful to help you keep track of how you’re feeling each day, week, month. If your health is changing then what’s the cause? Is it the pill you’ve switched to? Something in your diet? What’s the reason behind your mood changes? Exercise? Lack of sleep? My pain psychologist taught me the importance of keeping a daily diary (which admittedly I go through phases of slacking on) but it can really help you crack codes and figure out why you’re feeling a certain way when your memory would otherwise fail you.

I use an app in my phone and on my laptop called Day One. I suggest you guys do too! It’s going to help you so much and may even be what drives you to focus on taking care of yourself each day. It’s a great tool for improving self-awareness. I use the same formula each time. You’re welcome to copy it. As an example, this is my entry for today so that in a month’s time I can look back on this post and see how I was feeling pre-Visanne and compare it. That way I can know exactly what effect switching medication has had on me.

How am I feeling? Mostly great. Endo pain-free for months. Good mood. Mostly lots of energy. Happy.

Severity of Pain: 0

Type and Location:
no pain (except for right hand side rib/intercostal pain which is always always there but right now not bothering me too much)

Mood: 7

Sleep:
Woke 9am
Bed 10:30pm
Sleep… who knows when?
Very broken sleep, haven’t been sleeping well for weeks/months… up and down in severity but getting pretty serious lately. Sometimes I’m only getting a couple hours a night for consecutive nights in a row. TORTURE!

Alcohol/Drug/Medication:
MORNING
2 x fish oil capsules
2 x Curcuma Active (Turmeric tablets)
1 x Glutathione capsule
20ml Chlorophyll
1 x ProFlora sachet (probiotic)

( Previously took 2 x Ultra Biotic Urinary Care daily which is probiotic x UTI prevention but my acupuncturist explained to me this week that there are so many different types and strands of probiotic that having the same one all the time means your body misses out on other probiotics it needs, so it’s good to switch types every month or so. Also with the regular allergies I’ve been getting and several rounds of anti-biotics since March, my gut really needs healing and a different probiotic may do the trick. Good to know! )

NIGHT
2 x fish oil capsule

Triggers/Stressors:
Health-wise mostly been feeling really great. Sleeping and allergies have been torturous though.

ALLERGIES
Sometimes allergies (extremely itchy face and nose like it’s covered in fur or fluff eughhh) at night are waking me up. This has been consistent for a couple weeks and is driving me mad. Have cleaned entire room, bedding, all of that and no difference. Acupuncturist thinks it could be an allergic response to poor gut health which would make sense as my gut feels extremely tight and tender to press and I have had 3 rounds of strong antibiotics to treat flu and sinusitis since March. Hoping with new probiotic and focus on anti-inflammatory diet things will improve. If not, will see my sinus doctor again soon.

SLEEP
I’ve had trouble sleeping on and off since high school. Sometimes it gets much worse however and becomes almost unbearable. Goes through phases. Have noticed I have been relying on over the counter sleeping tablets to help me fall asleep and stay asleep lately which is not good. Has been particularly bad lately with many sleepless nights. Giving me terrible fatigue and affecting my work. Separate issue to allergies.

Exercise:
I have not been exercising lately which is unlike me. Exercise does not help me sleep, in fact sometimes it makes me more wired because it gives me so much energy! But I will get back into my training guide (Kayla Itsines BBG) soon.

Pain Strategies:
Acupuncture today for rib pain, gut, liver and sleep

So that’s where my health is currently at today. Going on Visanne, like any hormonal pill, I would expect to see changes in my mood, possibly pain, hopefully not weight but potentially, hormones, appetite, skin, energy levels.. lots of different things could change so I will just have to see what happens and use this post as a comparison. For example, if I have sleeping problems or allergies in a month, I’ll know that those issues existed before I started taking Visanne and were therefore not caused by switching pills.

With regards to weight, this is often a concern girls have when switching pills/hormone therapies. I threw out my scales and stopped weighing myself 2 or 3 years ago. Judging myself on a fucking number was shitting me to tears and I found no matter what the number was I was never happy. What a crap way to live life.

After I stopped weighing myself I became so much happier. I began to feel content. I stopped judging myself so harshly. I stopped calorie counting. I stopped putting restrictions on myself. I put an end to dieting or not eating as a means of losing weight (such a sad existence) and focused on eating to nourish my body, reduce inflammation and try to heal my Endo (or at least treat the symptoms). I decided to freeze my eggs. I ate to preserve and increase my fertility. I thought about the babies I so desperately wanted. I was determined to fill my body with the most amazing nutrients at every opportunity so that my eggies had the best chance of growing and flourishing. I thought about how I would want my future children to eat and wanted to make sure they had the best chance at being healthy. I wanted my health back and I desperately wanted to produce healthy eggs. That became my focus.

My attitude to food completely changed and I began to see it as my daily medicine. The more I learn about the healing qualities of certain types of food, the more empowered, energised and healthy I feel. Changing my eating habits has had an incredible effect on my Endo, my body, my physique and my mood. I’m so in tune with my body that I can easily tell if I’m gaining weight and can use my own judgment to make informed decisions rather than a set of scales. If that happens, I’m sure I’ll be able to figure out if the weight gain is a hormonal thing from Visanne or something I can control myself through eating different foods.

Very long post I know but it’s an important one! Keep you posted with how things go.

Syl x

PS
Here is the list that I keep in the ‘Notes’ app on my phone which I copy + paste into my Day One app each time I diarise. You can copy past it too and add in, remove or adjust anything that’s relevant or not relevant to you.

How am I feeling?

Severity of Pain:

Type and Location:

Mood:

Sleep:

Alcohol/Drug/Medication:

Triggers/Stressors:

Exercise:

Pain Strategies: