How Am I Supposed To Love A Body Like This?

If you want to include both my battle with endometriosis and with an autoimmune condition, I have been fighting my body, and medical professionals, for ten long years. Ten years of chronic pain, chronic illness, and chronic anger towards my body for never giving me any relief.

With Endometriosis comes not only extremely painful periods, but also back pain, urinary tract infections, diarrhea, constipation, nausea, extreme mood swings, pelvic pain all month long, fatigue, general malaise – and the list goes on and on.

With my autoimmune condition comes chronic fatigue & malaise, severe chest pain & palpitations (occasionally landing me in the ER,) tachycardia, panic attacks, muscle pain, joint pain, chronic migraines, brain fog, muscle weakness, rashes, and just a general lack of discomfort and feeling like shit to be honest.

So, how does one love their body, when their body only ever causes them distress and discomfort on a daily basis? It’s not easy – it usually feels impossible. I spend so much time pushing through the pain and illness every day, that I’m left feeling extremely pissed off and frustrated with my body. Why can’t you be pain free for just one day? Why can’t you let me live my life? Why do you have to take everything from me? Why can’t you give me a break?

One day it occurred to me, as I looked at myself in the mirror, that I had started feeling separate from my body because I spent all of my time fighting it. It was no longer a part of myself, but instead a monster that I had to slay. That one thought shocked me. This sounds ridiculous, but I stood there and had to touch my arms, my face, my neck, my stomach, and my legs, just to feel connected to my own body again. To remind myself that it’s a part of me and that I still need to love and care for it.

So started my self care regime. Pilates twice a week, higher quality skin and hair care, meditation, walking every day, and most importantly, attending each doctors appointment with the goal to fight FOR my body, rather than against it.

It’s not really enough just to dutifully take our medications, just to push through pain and deal with the frustration and anger, to let ourselves hate the very part of us that keeps us alive and who we are. Our broken bodies aren’t actually stopping us from living our lives – they’re giving us the ability to keep living it, even if limited.

So keep caring for your body, no matter how broken it may seem. Stay connected to it and keep loving it. Nobody can love and fight for our bodies like we can. ❤

The Mirena

For lack of a better way to describe this, let me tell you about the time my body tried to give birth to a Mirena. That’s right, I was suffering contractions for 2 months because of this apparant magical Mirena that was supposed to ‘solve’ my Endometriosis for the next 5 years. Winning, right?

I’ll start by explaining what a Mirena is. A Mirena is a hormonal IUD, which us a small device that is placed inside the uterus to prevent pregnancy. Or, my my case, prevent endometriosis from growing. Pictured below. You really wouldn’t think something so small and unassuming could cause so many issues!

I’d just gone through my 3rd surgery for Endometriosis, and while the surgeon was in there he’d inserted the Mirena, after explaining to me that this would be a great solution to keep my Endo at bay for the next 5 years.

After the surgery I felt a lot more ‘cramping’ than usual, but didn’t question that it could have been from anything other than the surgery.

A week after surgery I was in so much pain that the only relief I could get was through morphine and lying on my side with a pillow in between my legs. I called my surgeon the next day and got no answers or sympathy there. Everything looked fine in surgery, so everything therefore must be A-OK! 👍🏻

I continued on with life, all the while getting excruciating pain every single night, along with most days. I could be at work doubled over in pain, high as a kite on morphine and seriously considering pulling the damn thing out myself. I didn’t have the pain before this, so what else could be causing it? My gut was, quite literally, telling me that this ‘amazing’ device was the root to all my recent issues.

That being said, the Mirena is so effective for so many women. I just happen to be one of the unlucky ones because, as it turns out, you’re more likely to get issues and pain from it if you haven’t had kids, which I have not. My uterus was too tight and did not expect to have a sudden foreign object in there, and simply wanted it gone.

And so began the contractions, which is exactly what I was having for those two months. My uterus was trying to push it out, with no such luck. I was depressed both from the pain and from the hormones being pumped directly into my uterus. I was bleeding none stop. So I made the very easy decision to get it removed.

Doctors don’t warn you of these things. The likelihood of mood changes from the change in your hormones, the possible pain from a device if you haven’t had children. My GP, who is an awesome doctor, was actually the one to finally explain this to me when she removed the device.

I truly believe that the hormonal treatments women go through for conditions such as Endometriosis, need a lot more light shed on them. I truly believe that doctors should warn us of these possible downfalls, especially for hormonal treatments such as the Depo Provera injection, which once given, you cannot take back for 3 months. For me that ended with months of severe depression (which you can read about in my post ‘The Depo Darkness’.) Yes, I most definitely should have been warned about that!

And what about the rest of the population? What do you really know about the treatments for Endometriosis? Since awareness on the disease itself is pretty sad, I’m guessing not much at all. Surgery is the most well known, but there’s definitely a lot more to it. And NONE of it is pretty or easy.

So… let’s talk about it more. Start a conversation, tell people what you’re going through. Or better yet, ask another woman what they’re going through, ask them if they’re okay. Be open, be real. Because, at the end of the day, we’re not doing ourselves or these diseases any justice by hiding it.

Endo Facts

Recently I received feedback that my messages were great, but that I still hadn’t explained much about Endometriosis. And I thought holy crap, it’s time to get down to the point!

So here it is. What is Endometriosis? Endometriosis is defined as a condition resulting from the appearance of endometrial tissue (which usually hangs out inside the uterus where it’s meant to be) outside the uterus and causing pelvic pain, especially associated with menstruation.

To explain that further, this means that when a woman with Endometriosis menstruates, endometrial tissue sheds and grows in the pelvic region (like the bladder, bowel, ovaries and rectum. Or very rarely the abdomen, lungs or brain.) In short, it causes a whole lot of shitty widespread symptoms and pain, occasionally all month long if you’re really unlucky, like myself. In the later stages, it can cause infertility due to internal damage. It’s basically your body attacking itself during what should be a natural and harmless process for a woman.

I don’t know many people that are actually aware of Endometriosis, even women. Which surprises me because 1 in 10 women suffer from it, and that’s just confirmed cases! So many still go undiagnosed because women are brought up to believe that severe pain with their period is normal, or that they’re just bunging it on. Guess what, it’s NOT normal! And most definitely should not be tolerated.

There are 4 stages of Endometriosis. I myself suffer from stage 2, which is considered a mild form. It has spread far and wide, but hasn’t caused damage to any of the organs, but the implants are deeper into the tissue than stage 1. However, I do also suffer from scar tissue forming from the 5 surgeries I’ve gone through to treat the Endometriosis, which is also quite common. Guess how you fix that? More surgery! Fix one problem, cause another. *Face palm*

I’ll move on to stage 4. This is the most widespread. There are many deep implants and thick adhesions. There are also large cysts on one or both ovaries. In many cases, this takes a few invasive surgeries in one go to treat, and is likely to cause infertility without treatment. On many occasions, women with stage 4 Endometriosis don’t actually experience many symptoms apart from some period pain, so never realise they have it until they have difficulty having children. Whereas stage 1 & 2 Endometriosis could result in severe and debilitating symptoms. Who would have thought?!

Unfortunately, there is no cure for Endometriosis. Some doctors say having kids will rid you of the disease, while for some people, having kids brings on the disease. There is no rhyme or reason to how Endo acts or what brings it on and the symptoms are different in each and every person, so even doctors are still confused by this common condition. This causes huge delay in treatment. Which brings me to my next point…

Treatment for this disease is different in everyone. Some people fair quite well on the contraceptive pill, while others only respond to surgery. Some women even have one surgery and never have any problems with it again. In my experience, every hormonal treatment has caused nightmarish symptoms, including almost having a stroke. For now, surgery is my only go to – and because of the complexity of my condition, this happens almost yearly. For the future, after children, a hysterectomy has been placed on the table as the next form of treatment.

In conclusion, Endometriosis is a hellish condition that turns a woman’s life into a living nightmare simply from menstruation. I hope that sums it up well enough! Try to have compassion for a woman with this disease, they may be struggling more than they let on ❤

The Depo Darkness

I often hear men and women alike joke about women’s hormones. She’s angry, so she must have PMS. That’s hilarious, right?

It’s not often lately that I get really bad PMS, mostly I just get extra jittery and anxious. But now and then it really hits me, and I spend the better part of a day crying or just feeling really low. I don’t really see that as funny. Emotions are all valid regardless of the cause. More than anything, it makes me really feel for the women that deal with that monthly, or the women suffering through menopause.

That brings me to my Depo Provera disaster.

Approximately 5 years ago I was prescribed a treatment for Endometriosis after a surgery, in the form of a Depo Provera injection. This is a reasonably common form of birth control that get’s injected into your butt cheek (hehe), and lasts for 3 months. The main ingredient of this injection is Progestin, which effectively stops ovulation. This in turn also prevents Endometriosis from growing outside your uterine wall.

However, what my gynecologist at the time forgot to take into consideration was my sensitivity to medications, especially the hormonal kind. Within a week of getting this injection, I was too depressed to even make it into work. And guess what… There are no medications to counteract an injection that stays in your body for at least 3 months.

I proceeded to spend the next few months with severe insomnia – sleeping a maximum of 2 hours a night. Spending the rest of the night either tossing and turning or simply crying and wondering how I was going to get through this. Of course, I didn’t actually realise at first that it was this injection causing my sudden depression, no one had explained to me that it was a possible side effect. I was only 6 months into dating my boyfriend, Aiden, and we both started to believe that it was my relationship with him that was giving me grief. This caused a tremendous strain on our new relationship, and left a few of his friends that I’d just met thinking I was an emotional wreck, and rightly so! Let’s face it, that’s exactly what I was.

So what happened after 3 months? Well… turns out that emotional side effects caused by this injection actually get worse before they get better. And so, I spent the better part of a year severely depressed . Not even being able to work most of the time – and when I did work I spend most of the day counting the minutes until I could curl up in bed and hide again.

I kept everyone in that dark about all of this. My parents saw the severe anxiety and panic attacks it caused in the beginning, but no one knew the true extent of my depression until I broke down crying in front of my mum in a cafe.

I would like to take a second to point out that I very rarely cry, and I basically never cry in front of anyone else. It’s not because I’m emotionally unstable, it’s just generally not what I do. So my mum seeing me cry for the first time in probably 15 years… Well it really kind of freaked her out, to say the least. She finally saw what I was going through. But despite that, I still felt embarrassed to share this with anyone else. I often laid awake and cried while Aiden slept without saying a word to him about it, and I never let my friends in on the whole truth. No one saw the real darkness that was caused by one simple hormonal ‘treatment’.

Do you still think it’s funny when a woman is being hormonal?

Mental illness is no joke. When it’s caused by or coupled with hormones, to put it plainly, you feel like you’re losing your god damn mind! Imagine feeling perfectly fine one day, and losing all control of your emotions the next. This is a lot more prominent in women with conditions such as Endometriosis or Polycystic Ovarian Syndrome, but no one seems to talk about it. It’s a very real side effect, especially to so many of the treatments for these conditions. Do you see why I can’t see the funny side to that?

I’m not laughing, and neither should you. The seriousness of this needs to be recognised. Next time a woman is “just being hormonal,” stop and think for a second. That thought, that realisation, could save your wife’s, sister’s, mother’s or daughter’s life.

To all the women out there struggling, please believe there is light at the end of the tunnel. Speak out, get help and support. It’s 100% okay to need that 💙

Post Surgery – The Facts

So often people tell me that they’re jealous when I ‘get to’ have two weeks off after a surgery. Like I just get to chill out and relax, have a little me time, you know? Incorrect.

Let me share with you my last experience with surgery, which was in December last year for the latest occurrence of Endometriosis.

I’ll start in the recovery room. I wake up in excruciating pain, not from the incisions, but from every part of my abdominal and pelvic region that they scraped, poked, and prodded during the surgery. I’m in so much pain that I’m crying and vomiting, until they give me just enough morphine to dull the pain (along with a happy button that allows me to access pain killers as I need through the night through the IV.)

The night in hospital isn’t so bad thanks to the extra strong pain killers. But I can never sleep properly after surgery. I lie awake watching TV, while lightly sleeping now and then. Luckily (and unluckily) for me, I have a catheter in so I don’t have to move from bed. Uncomfortable – but convenient!

The next day the real struggle starts. They’ve switched me from morphine to Nurofen (until I can get home and actually use the good pain killers that the doctor left me,) so the pain is starting to get real again. That along with the fact I now have to pee a certain amount before they let me go home, makes life slightly annoying.

Then I get home to my boyfriend’s house, and the stairs… They kill me on even my best days, let alone after surgery! But it’s all okay once I’m tucked in bed binge watching Netflix with my Husky and boyfriend by my side.

Or so you’d think…

It doesn’t sound so bad when you put it like that. But the reality is, a few hours after I arrived home from hospital, not only was I in pain but I was also struck with feeling incredibly ill. In the spirit of honestly, I didn’t know if I wanted to throw up, pass out or shit myself… Not a great combination.

So here I am, begging my boyfriend to help me get to the bathroom. Very very slowly (after sitting down a couple of times because I’m going to pass out,) we made it there. Once there, all I can do is lie down on the floor. I tell my boyfriend to get out and then yell at him to come back. This happens several times. Poor guy didn’t know which way he was going!

As I lie there on the bathroom floor, I contemplate two things. One – when was the last time this floor was cleaned, and two – maybe I should just let myself pass out so I don’t have to suffer the humiliation of shitting myself on my boyfriends bathroom floor.

However, it was the panic after I realised I would never live it down if he found me lying unconscious in my own poop and/or vomit, that gave me the strength to drag myself off the floor, quickly use the toilet and then lie back down on the floor again, awaiting rescue from Aiden to take my back to bed. Phew! Nothing like a little humiliation to get your ass into gear (no pun intended.)

Things didn’t improve from there at all for about a week. I was in constant pain, forever lethargic and still feeling incredibly ill. There were many nights on the bathroom floor almost exactly as described above. But after a week, as my body started to recover from the ordeal, I noticed something else troubling.

Anxiety. Anxiety that turned into panic attacks. Daily, undeniable, debilitating panic attacks.

That’s the thing about something as traumatic as surgery, it doesn’t just affect your body. It also affects your mind. More often than not, people suffer mood changes, depression, and anxiety in the weeks or months after a big surgery. The impact is huge in EVERY way.

So the next time you start to think someone is ‘lucky’ for getting time off to recover after surgery… Catch yourself and remember the truth.

Dear Doctor

Dear Doctor,

Two years ago I came to you for help. I sat in front of you, a desperate and broken woman in unbearable pain, and you broke me down further. You hammered me into the ground until I truly doubted myself. Am I crazy? Is this all in my head?

When I saw you that day, my UTI had gotten so bad that I was peeing straight blood. I was ill, I was hurting, and I knew in my gut exactly what was going on… My Endometriosis has returned only one year after you performed your last surgery. You believed in your own skills so much that you didn’t believe me. You took my concerns about my health as a swift kick to your balls, because somehow this was about you.

You sat there and laughed at me. You told me it was most likely psychological because I was just ‘used to’ being in pain. You told me I probably had back problems. You were grasping at straws for any explanations that weren’t that my body was growing Endometriosis at an insane rate, because that simply didn’t fit in with your text book information.

But in the end, you knew that I wasn’t leaving that office until you agreed to perform surgery the next week. I wasn’t going anywhere until I got help, even if it was from someone like you.

The day I had surgery, you still tried to convince me that you wouldn’t find anything. That there wouldn’t be Endometriosis on my bladder like I suspected, because it’s “SO rare” that it causes UTI’s, almost impossible. You smiled condescendingly at me while you patted my hand and told me this was all pointless.

You made me feel like I was being violated, because you had become the last person in the world I trusted to perform my surgery. But I was desperate, I knew in my heart that I needed surgery, and I needed it now.

When I woke up in my hospital bed, you visited me. And with a polite smile you said that you had found small amounts of Endometriosis throughout my pelvic region, as well as on my bladder. Dear Doctor, am I allowed to say I told you so?

A few months later I went for a follow up appointment, but not with you. I found a new gynecologist down the hall from you, one with more skill, understanding of complex Endometriosis, and above all, empathy. She told me that my surgery with you had absolutely shown substantial amounts of Endometriosis and that, though rare, it definitely could (and in this case did) cause UTI’s. You lied to me to save your pride, and you should be ashamed of yourself.

Dear Doctor, you’re a fantastic surgeon, but your bed side manner sucks to say the least. Next time, with your next patient, do better.

Kind regards,

Your Ex Patient

The Burden of Endometriosis

Now this is a hard one for me, especially posting that feature image. Everyone who knows me know that I’m not the type of girl to flaunt my body every chance I get. In fact, wearing a bikini makes me self conscious because of my surgery scarring. I’ve actually been asked before if I was stabbed. Well… Technically yes! But being vulnerable is important in raising awareness. So let’s do this!

Now these scars are very hard to see in the photo. But I have 4 scars for every laparoscopy. So that’s 20 scars on my stomach alone. While they are small and unassuming, each surgery comes with more and more unbearable pain.

I have stage 2 Endometriosis, which is considered a ‘mild’ form and I have had 5 surgeries for it since I was 19, with talk of hysterectomy mentioned for after I have kids.

And that is just for stage 2! My pain starts quickly and all month long, along with a whole list of other nightmarish and occasionally embarrassing symptoms. Now, in the spirit of being honest and vulnerable, here are some examples…

The last time Endometriosis grew on my bowel, I had diarrhea every single day. That was a fun one. Or there was the time that it was affecting my bladder quite badly. That caused almost constant UTI’s, and one time when I actually wet the bed in my sleep. Yep… That happened. Not my finest moment to say the least!

The saddest part, that’s just the tip of the iceberg.

Here’s another fun fact. Some women with stage 4, the most aggressive form of Endometriosis, don’t even realise they have it until they find out they’re infertile or they have further (possibly permanent) damage requiring several aggressive surgeries.

At least 1 in 10 women suffer from this debilitating disease to some degree. So why are we so afraid to talk about it? Why is it so unacceptable to miss work because the pain is just too much to bear that day? Why are we considered ‘weak’ by even other women because our symptoms don’t match their own common period symptoms?

More than that, why is this disease so misunderstood even by those in the medical field, just because it can’t be seen by the naked eye and because some parts of it can’t be explained?

Why should we isolate the women in our lives who are suffering, simply because we don’t understand? Well… Compassion doesn’t actually require understanding. Nor does support or kindness