A wake up call for every time that I think I am being a wimp...

This week I have had some bad pain (described in my insta post below) and ended up missing a class at uni because of it. As always I had a voice in the back of my head niggling me, telling me that I was just too weak, being dramatic and a wimp. Looking at the situation from an objective point of view I know that I push through everything and despite dealing with quite a lot in the last six months, that class is the first uni class I have missed and it's kinda insane that I haven't missed more classes (as my friends keep telling me).

Anyway, my friend Sarah sent me this video (below the insta post) and it gave me a much needed wake up call. I know that having some radio hosts and one woman with endometriosis filming something is not a robust experiment from a scientific point of view, but it's all I needed to remember that while other people have their own battles, not many people my age have to deal with extreme acute or chronic pain, and I should be proud for all I have achieved despite it. I'm not a wimp, I'm not being dramatic, I have a disease. I have developed incredible coping skills for dealing with pain and discomfort every day.

The thing about #chronicpain is that it’s multifaceted and unpredictable. Since my last surgery 18 months ago I have almost no pain that I recognize as my old ‘endo-caused’ pain. Instead I have lower back pain (sharp and around my kidneys) that tends to happen when I’m stressed, I’ve eaten too much inflammatory food, not slept enough or done too much exercise that stresses my core; a little bit of cramps pain around my period that tends to resolve itself with anti-inflammatories and gentle movement; sharp random pains in my pelvis and upper abdomen that affect my ability to breathe and walk, and that I can’t figure out a cause for so I figure must be #neuropathic; and the #vulvodynia pain/itching/burning that is constant. I’m 99% sure these pains are all due to my body’s maladaptation to being in pain from the #endometriosis tissue for so long, and not due to any new endo growth. ~ For the last week I’ve had a pain that is quite unusual for me and really difficult to deal with. It’s sharp and stabbing level 9-10 acute pain, like I’m being stabbed in my vagina. It’s incredibly difficult to deal with this kind of pain without showing any outward signs of pain, or without eventually wanting to cry from exhaustion if I’m under any stress at all when I experience the pain. It’s led to me acting weird and potentially seeming rude around others and walking out of class even though the topic was really interesting to me. ~ Thankfully heat helps so I’ve just been surrounding myself with hot water bottles and my @smacs_packs heat pack.

A post shared by Libby (@thechroniccaper) on Mar 20, 2018 at 3:32pm PDT

Come find me on Instagram

I haven't updated here in awhile, but I have a few posts planned since a lot has changed since I last posted. If you want more regular posts then follow me on Instagram on @thechroniccaper where I micro-blog on a semi-regular basis.

International Women's Day

Wearing my favourite phenomenal women Tshirt in honour of IWD

I've been struggling a bit around here lately. I've been involved in the endometriosis awareness/support scene pretty much since I was diagnosed in March 2012. I appeared in my newspaper article about endo in May 2012. I met the other Canberra Endometriosis Network co-founders around the same time and we tried to start to get things rolling in the ACT. In 2013 I managed to get endo into Cleo and Cosmo, if only small articles. (Syl Freedman kicked things up a notch a year later.) Later on that year we had our first yoga classes that got things rolling a bit faster for the network, and in 2014 the facebook group started going nuts and we had our first proper meet ups, with more than just a handful of people, at the Women's Centre for Health Matters. At last count the network has 250+ members.

But dealing with other life stuff has just gotten too much recently, and I haven't been able to handle my commitment to the network. Even seeing endometriosis awareness posts everywhere is overwhelming to me at the moment, even though I am so glad that they are out there and I am so thankful for the honesty and bravery shown in the women that choose to share their experience. So last week I resigned from the board of the network. It was a really hard decision but it's what I need to do right now to give myself some space to deal. Resigning inspired me to say yes to another commitment, a panel that I had been asked to participate in at work on International Women's Day.

So when today came around, I did one of these things that I do where I speak first and then overthink later. I shared my experience of being dealing with my symptoms with an unsupportive manager, in front of a crowd of at least 50 people (the details of which I'll leave in that room lest I end up on the receiving end of a defamation lawsuit). I cried in the process, remembering how hard my life was at the time, how confused I was by the pain I was in and the fatigue I was experiencing, how I struggled to come to work every day, how I cried in the car park for two hours one day because I just couldn't cope, how I felt utterly defeated by how HR treated me when I escalated the issue and took it to them. It is far and beyond the hardest, most isolating, period of my life so far. I just wanted to cease to exist.

Sharing this experience made me cry. I've tried almost to forget that period existed, particularly as none of the issues were really resolved. At the time I was frustrated in myself for letting emotion get in the way of me expressing how I felt about some weakness in how my workplace is run. I felt like I lost my train of thought a bit, and just felt like a bit of an idiot. However, some amazing colleagues of mine in the audience spoke up and shared their own experiences, and I felt like I'd hit a nerve. I thought it would be a prime time to ask the CEO to support people with chronic illness in the agency by arranging training for managers in dealing with employees with chronic illnesses, so I did. We can't expect managers to know how to deal with people living with chronic illnesses without training, when those people themselves spend their lives learning how to best deal with their illness.

Afterwards I received overwhelming support and I'm thankful to everyone who reached out to me. A lot of people called me brave, which I thought was odd since I didn't really think much of what I'd said at the time. Later in the day I started spiralling in anxiety a bit, worrying about the fact that I had cried in front of everyone, and that I had addressed the CEO so directly, and been so open about an experience that could reflect so poorly on my employers. I started to think that maybe it had been a really stupid career move. (Particularly as I had made some rather black and white comments on feminism as I tend to do when I'm hyped up about these issues. I realise that the day to day reality is a lot more grey.) That all changed when I read a post made by a colleague and fellow member of the network calling me courageous and a superstar. I burst into tears. I knew that I was being silly for beating myself up, but I couldn't stop it. It took her posting to snap me out of it.

I am proud of the person I have become over the past four years since being diagnosed, and I am proud of how open I am about my experiences. Sometimes I feel a bit dumb for making myself so vulnerable, but I have seen such great things happen out of that vulnerability.

Modibodi Period Panties: Undies for the Lazy Menstruator

Over the last year I've been trying a variety of reusable menstrual products in the interests of saving money, reducing waste and exposing my body to less harmful substances. I've already been using a menstrual cup and reuseable pads for about a year, and recently I decided to hit a height of laziness by investing in Modibodi Period Panties. A product that promises to literally change nothing in your routine to cope with having a period? No need to worry about changing tampons or sterilising menstrual cups? One less thing to think about when you're trying to make sure you take your painkillers at the right time so don't end up rolling around on your office floor in agony? Sign me up!

The Sensual Hi-Legs in Black

So that is basically the promise - no worrying about changing tampons or pads, or emptying a cup, one pair of panties, all day, no leaks. I thought it might be too good to be true, so I originally just bought one pair of Sensual Boylegs in Light Absorbency (because that is the only level of absorbency available in that style) and one pair of Sensual Hi-Legs in Moderate Absorbency. I went for these styles because I cannot deal with too-tight elastic waistbands pressing on my belly when I've got my period... or pretty much anytime.

The shipping was pretty standard - about 5 days (that's what I expect here in Australia if it's shipping from somewhere else in Australia) and they arrived just before the start of my last period, so I got to test them out straight away. And boy did they live up to their hype! Both pairs were incredibly comfortable to wear, and didn't dig in at all. They also managed to contain my flow for an entire day (around 16 hours, after which I changed into a night pad because I didn't have enough pairs for that first period, but you could use another pair of Modibody instead), no leaks*, no smell. They were a lot less bulky than wearing a pad, and only marginally bulkier than normal underwear. They are extremely well made and I can tell they aren't about to fall apart after a couple of wears. Also, I've now washed these pairs a few times and they look brand new every time they come out of the wash, no staining or anything. Not exactly what I expected after years of heavily soaking bed sheets in stain remover due to period accidents, and still having the stains hang around.

The Sensual Boylegs in Black

So after my first good experience I went online and took advantage of their pre-Christmas sale and bought a few more pairs, this time in Violet (or in my opinion - Fuschia!) Can I just say that wearing bright pink underwear while I had my period and knowing that it wouldn't get ruined made me feel so much better? Who knew that underwear could be such a mood booster. I also love that you can wear these throughout the month in case you have any spotting (which I am unfortunately having quite a lot of at the moment). They even have beige panties for when you want to wear lighter clothing.  My only complaint is that they can sometimes get a little sweaty towards the end of a warm day which can cause a little irritation, but much less than what I experience with pads. It probably just means I need Moderate to Heavy Absorbency instead of Light.

If you can't tell, I'm official sold on period panties and am pretty much switching to them full time. I love the amount of mental energy that they save by removing one more thing that I have to think about when I have my period. Maybe I need to take out some shares in this company...

The Sensual Boylegs in Violet (aka the best thing to happen to periods since chocolate was invented.)

*Thankfully since I've been on Qlaira my periods have become much lighter than they would be naturally (for me day one and two are now as light as day 4 or 5 used to be). I don't think these light absorbency period panties would've dealt with my flow when I wasn't on the pill, but I might've tested the Heavy Absorbency ones on day 2 or 3.

PS A friend of mine bought the classic boyleg briefs and she says they do cut in a bit, so if you don't like undies that cut in, you might want to stick to the lace versions.

~This post was not sponsored and I paid for the undies myself. All opinions are my own, I just really love these undies! I have signed up for their referral program, so if you buy undies from the links in this post, I will apparently get a small amount of money. Who knows? This is a first for me.~

The power of community

Goofing off with some endo sisters during a wine and food fest.

It's been hard recently. Work has been stressful, moving continents is never easy and I've had more endo pain again - partly due to the stress and not sticking to my diet as well as I usually do + running out of krill oil last week and not having the time/energy to go buy more from the store (putting in all the detail so you know how much I have to do to keep functioning, and how tiny things can throw me off!) but also I think my endo is growing back. I knew it was going to happen sometime, they didn't get all of it in the last surgery, and it was pretty aggressive.

You know what has made my day though?

• Getting an email at work on Monday from a colleague who remembered me campaigning for endometriosis awareness a couple of years ago, writing to me to let me know that her friend was going through the process of being diagnosed with endo, and asking me if I would be happy to talk to her about it because she was feeling a bit overwhelmed and isolated.
• Having a tea break at work with an endo sister who apparently came to the Canberra Endometriosis Network through my campaigning at work a year and a bit ago, who I've only just discovered works with me. It was so lovely to talk to her during work hours and share stories.
• Having an endo friend to message while trying a new treatment that involves putting capsaicin (as in the active ingredient in chillies) on my lady bits to try and desensitise them and put an end to this nerve pain once and for all. That is not a fun experience but it was made so much better by having someone to go through it with.
• Reading Lena Dunham's endometriosis special in Lenny Letter. She had UTI symptoms too! I wonder how many other women have them and are dismissed like we both were.

These are just a few of the ways that I have felt loved and supported by the endometriosis community recently. Some days it really sucks to have this disease, but at the same time I am so thankful for the opportunity I have to reach out and make a difference in others' lives in really simple ways by sharing my experiences, and for them to make a difference in mine. I have so much love for my endosisters.

The surprising costs of endometriosis

Guest post from my dear friend (who also has endo) Sarah MacLeod. We met through the Canberra Endometriosis Network last year just before I left for the UK and bonded over having the same gynecologist.

I want to talk about something that’s not very widely discussed – the financial impact of living with endometriosis. Endometriosis is finally making it into the news! Usually the aspect of infertility is discussed and pain is mentioned, but the financial burden is not. There are a couple of research papers, however I want to give this the personal touch.

The one thing that people like to talk about as little as ‘Women’s Problems” is money. In the 5 years that my endo was under control I spent $60,000 on medical bills, that’s not including any over the counter medication. These were my healthy years. I was lucky to be healthy enough to work to allow me to afford this. However because of my endo I never managed to save for the future.

What the future brought was unhealthy years. I am one of the lucky ones again in that I have both a partner and parents who could support me, and this amazing thing called a credit card. For approximately 18 months I could not work for more than 3 hours a week. I had the sudden onset of chronic pelvic and nerve pain caused by endometriosis and complications with a Mirena. In this time I had botox injections every 6 months to help relieve my nerve and muscular pain. This is not covered by medicare and also not available where I live, in Canberra. This meant that each lot cost $1000 plus travel costs, which were usually about $800. On top of that my weekly chemist bills were $100 and I was having a weekly remedial massage at $70 a week just to relieve my pain enough to work those 3 hours a week. On top of this there were regular GP visits and unfortunately I could not find a bulk billing GP who knew how to manage my pain so this was an extra cost. I am so grateful that through all these things I have been able to return to work full time (although it is still an ongoing battle). Although things are looking up, we are still chipping away at the credit card debt that allowed me to become healthy enough to work. Those bills regularly make me feel like crying.

I would like you to now imagine that I was not one of the lucky ones, that I did not have a partner and family to support me emotionally, physically and financially. I have a friend who is in this situation, only her problems are worse than mine so she is unable to work at all and hasn’t been able to for a couple of years.

What prompted me to write this tonight is this -   I made a gofundme page for my friend to try and raise funds for her to have treatments she could not afford. The page raised $760, which I was incredibly happy with. However today I saw a gofundme page set up to help people with a wedding deposit that had made $2500 in 4 days. I do not begrudge these people that money in the slightest, but I can’t help but feel put out that people are so willing to donate money to that, and not to help someone have a better quality of life. People like the idea of a happy ending, they like to know that their money is going to help someone. Us girls with endo can’t give them that, we do not have a guaranteed happy ending. One thing that is guaranteed is that without help, nothing will change, and people will keep suffering. I also can’t help but think that perhaps if people knew the impact this disease has on all aspects of our lives then this would make a difference. I am hoping sharing my story might educate at least one person on one more impact that this disease has on us, who then might be able to tell one more person until no aspect of this disease is in the dark.

Why are we still so silent on endometriosis?

Today is World Autism Awareness Day. It's a day I probably wouldn't have given a second thought if their awareness campaign didn't include taking a selfie while wearing blue, and I hadn’t just dyed my hair blue yesterday.

Good marketing ploys aside, it’s important that we learn more about this condition that is so little-understood, so that children can grow up to reach their full potential, and we can empathise with those who interact with society in a way that we don’t understand. I honestly don’t really know much about autism, apart from it having an effect on behaviour and learning difficulties, so I decided to look up some facts online.

Roughly 1 in 100 people have autism. 1 in 100.

Endometriosis is five times more common than autism. 1 in 10 women.

So why is it, that when I mention endometriosis, every second person I talk to says “Endo-what?” Why do the people I do mention it to say that I should “just have a hysterectomy”. (Like anyone would ever expect a guy to cut off his testicles to ‘cure’ a non-cancerous disease.) It’s exhausting.

But I can’t help feeling that we are 10 steps behind them with endometriosis awareness. If half of the community doesn’t even know that endometriosis exists, how can they even begin to understand the condition, or have empathy and support for those that suffer from it?

Last month was my three year anniversary of waking up from my anaesthetic to hear my doctor say “You have endometriosis.” At that time, there was one endometriosis network (on Yahoo groups) and no endometriosis charity active in Australia. Things have changed for the better in those three years. Out of a hunger to meet others like us, Katie and I got the ball rolling with the Canberra Endometriosis Network. Then, soon after, Endometriosis Australia was founded. Last year, with the petition for Bayer to release Visanne in Australia, EndoActive was founded, then the Pelvic Pain Foundation of Australia, and most recently KnowEndo in Sydney. There are plans to set up an Adelaide network and many other local networks have popped up around Australia.

I am encouraged by the exponential growth of pelvic pain organisations in Australia. It makes me hope that one day in the near future I won’t have to explain my disease every time it comes up in conversation, and the diagnostic delay will decrease. But we can’t afford to sit on our laurels. There is still misinformation and poor treatment even among those conscious of endometriosis (including GPs and gynecologists). Regularly new women join the Canberra Endometriosis Network facebook group and demand to know why their doctors won’t just rip out their uterus already. They ask how we cope with dealing with the fact that the doctors can’t help us beyond oral contraceptive pills and surgery.

They’re wrong. This is not a hopeless disease. My quality of life is a thousand times better (not an overstatement, just ask my parents) than it was 3 years ago when I was diagnosed. I’ve gone from bedridden and depressed to having the time of my life on the other side of the world. But it’s been a long road from there and it’s far from over. I’m going to live with this disease and its effects for the rest of my life. (Even after menopause I’m expecting to have to manage the scar tissue, nerve damage and pelvic floor dysfunction.)

In the meantime, to stay as healthy as I can I:

• Eat a (mostly) gluten, caffeine, alcohol, soy and processed-food free diet to reduce inflammation and alleviate digestive symptoms
• Take daily drugs to return my over-sensitive nerves to normal functioning
• Take agomelatine daily to deal with the fatigue and mood swings that come with chronic pain
• Take an oral contraceptive pill to try to slow the growth of the endometriosis, reduce the likelihood of further ovarian cysts (endometriomas) forming and to lighten my periods [the research on this is inconclusive though some people can find it helpful]
• Take krill oil daily to reduce inflammation
• Do stretches, use trainers and see a pelvic floor physiotherapist to treat my pelvic floor dysfunction
• Occasional Botox injections into my pelvic floor and sidewall to relax permanently tense muscles
• Make wise decisions about how and where I spend my energy
• Have excisional surgery when all the other treatments aren’t keeping the pain at a manageable level

Increased awareness would mean more funds and more resources. Today, the available treatment options (as detailed above) focus on the symptoms. A substantial research effort would likely result in the discovery of a drug that works on the root cause of endometriosis instead. This could lead to the development of a routine blood test for endometriosis for girls when they have their first period. If this test came back positive, they could take the targeted drug, which would help correct the rogue DNA pathways responsible for the disease. There would be no nasty complications (oversensitive nerves, pelvic floor dysfunction, scar tissue, infertility) from years of chronic pain and inflammation because there would be no endometriosis. I hope that world is our future.

So if you’re new to being diagnosed, you’re coming in at an exciting time. Join all the networks, read all the books, seek out an endometriosis specialist. Use your newfound knowledge to educate those around you. You will need all the support you can get.