Hereditary Endometriosis

Hey there lovelies!

I want to touch on a subject that is highly influenced by endometriosis. And that is the link between endo and genes. Now, in my own personal case, women on both sides of my family have it. On one side it seems to have skipped a generation, but I am surrounded by endometriosis. And therefore obviously was fated to inherit it. Recently coming to the realisation that genes have a lot to answer for, I’m wondering why I wasn’t born a male. But then I think I wouldn’t be able to wear mascara so it puts things back into perspective. Despite feeling like I was destined to be burdened to have this illness, it also provides me with an unlimited amount of support - and from family members! Which actually feels amazing although I definitely wish they didn’t have it in the first place. 

What is so confusing about endometriosis is that there seems to be so many factors than can explain how and why some women have it, however none of these factors have actually been proven because there is no stability and proper evidence to support it. But I am a firm believer that endo is being passed on in the family as one avenue of how women inherit endometriosis. It’s plausible that endo is caused by multiple factors, and it seems that mine is caused by genes. Of course every woman who has endo will have a different story; some will be the only ones in their family who has endometriosis, or maybe their grandma has it, or their auntie. It seems like endo picks and chooses whomever it wants. If only I could go back in time and somehow fight off that gene with a light saber. Then it would see who’s the boss.

Seeing a trend in that women in both sides of my family have endometriosis, it does raise concerns with me in the future. Having children is not on my radar at the moment - in fact it’s far from being in the forefront of my thought process however I am certain in the future when I meet the right person I will want to have children with them. And I do fear that there is the chance of a child of mine will be a girl and could so easily inherit endometriosis from me. Which is why I would ideally want to have a boy, I’ve seen the repercussions from my own mother on how she feels that her daughter has a chronic illness and is in pain almost everyday, and cannot do anything to make it go away forever. So body, if I could have a boy when I want to have a kid that would be great, thanks.

Lots of love,

Brie xx

A Quick Rant

Hello lovelies,

I haven't had much time the past week to write anything substantial about endometriosis - having to deal with a collection of things such as study, a death in the family and still getting through the emotional rollercoaster of a break up as well as the side of endo pain has been quite overwhelming to say the least. So take this blog post as a quick update on how everything has been going for me recently.

1. I had my first cervical smear last Friday, and the nurse was so fantastic and explained to me how the process works and the possible outcomes of the test (and thank God it came back normal). She had read over all my notes and commented on her sympathy for all women with endometriosis which was actually really nice to hear and nearly made me tear up. Now for the gruesome and extremely personal side of this and what my experience was like with my first smear. I have to say that I was extremely intrigued by the 'broom' that was used by the nurse. It seemed like the brushes of the 'broom' were really soft and kind of like the silicone baking brush that you use to smother butter over the top of pastry with. Since I am sexually active I had to get it done whilst I am 20, otherwise it would have been 25 I believe. Do correct me if I am wrong because I am in no way 100% on that. The speculum used to open my cervix was normal like all the other ones I've seen over all my gynaecologist visits in the past. Once the speculum was in place it felt like a huge gust of wind was going up my... yea you get the mental image... sorry about that... it was time to get the broom up in there. And it was painful, extremely painful. It felt like I was having sex all over again but without the emotional and obvious pleasure side of things. The cramping and jabbing feeling that vibrated all over my pelvis was terror. There was also blood resulting from this which was also what I had sometimes after sex. The nurse said it happened as soon as the 'broom' touched my cervix. Thanks endo, you're the bees knees sometimes. The positive out of that was that I have no trace of cancerous cells or HPV and anything along those lines. I am all squeaky clean, seems like my room is not the only thing that is a result of my OCD. Anyway, for the rest of the night I was crampy and cuddled up with my heat pack and my cat. And maybe some cake. But I'm willing to overlook that concept of my night for emotional stability reasons.

2. My brain is fried. Being in an accelerated course for law is causing my head to hurt quite often. I am studying what others have over the time of 9 months, in only 3. And it is the hardest thing I have ever studied. Ever. It makes me feel like I belong back at college. It's dawning on me that between now and October, when my exams are, I will be in educational, mental turmoil. And then after the exams I will most likely collapse and find somewhere sunny to lay down and have a platter of cinnamon dusted mini doughnuts next to me to lazily reach out and grab whenever my taste buds scream for them. Looks like my summer has been sorted. I felt like a smart ass doing NCEA... law makes me feel like my brain is the size of Homer Simpsons'. *bangs head repeatedly on desk* pray for me people, I'm going to need it.

3. I have a fun ass night coming my way. Now I know it's not for everyone, but karaoke to me is like a haven that needs to be visited extremely often. And I have not done it for over a year so it its going to be epic! I have some portable heat pads that I can stick to my belly and it hides under my clothes (thank you Libra, I love you so much) so I can have a good time without worrying too much about pain. Like, can life get any better right now??

Thats all for now! 

Love Brie xx

Medication For Endometriosis

Hello lovelies,

There are so many options to attempt decreasing the pain that endometriosis can bring to you everyday. Natural or pharmaceutical, trying multiple things lift your chance of finding a solution to live as pain free as possible. Now, in terms of what to discuss with your doctor, I would air caution around this one. Unless you have acquired yourself an alternative doctor, stick strictly to the pharmaceutical side of things with your GP. From my experience, that’s the side that they stick to and are familiar with, the rest like your diet, natural remedies etc are left up to you. They don’t really have much to say on that side of things. Of course you can tell them if you are on a new endo diet, they will choose wether to listen or not. It can be frustrating when they don’t exactly listen and take notice to it, but always consider it a bonus when they type it out in your medical notes. Going on the alternative treatments is something that you will have to monitor yourself. 

In terms of pharmaceuticals, I say this; question everything. From my experience, there can be way more side effects than what a drug can actually fix. Do your research and despite popular opinion, do search google - but get your information from reliable sources. I cannot count how many times I have been told not to trust the internet but for myself, most times it has been correct. Except Web MD, I don’t like that website at all. A slight side effect and all of a sudden I have 2 months to live. Not good. Remember that doctors are heavily influenced by drug reps, so always be speculative and always get an answer on what a drug is, what it does, and what to do in case of an emergency after you take it. After all, you are putting more chemicals into your body. You need to know exactly what is going on. And document it! Have a diary where you write down what drugs you take and what day and time you took them. It takes a lot of effort to do, especially when you’re feeling quite under the weather but it is so important.

For myself in terms of pain relief that helps relieve whatever endo decides to throw at me, I have the Mirena IUD, am on the pill (contraceptive), amitriptyline, panadol and ibuprofen. At first the Mirena caused me some pain, I’d say around a couple of months and I had contraction like pain as one would experience going through labour. Now it’s just the matter of keeping the pain at bay with the Mirena, contraceptive and pain killers.

Finding what works for you really is a process of elimination and it can be a very very long process but it is worth it when you feel the pain lifting from your pelvis and anywhere else the pain may be lingering. Going to your doctor is worth the money to figure out what will be the best pain relief.

Much love,

Brie xx

Relationships & Endometriosis

Wow, now this is going to be an interesting one. Speaking as someone who is recently single, I will point out that my knowledge in this area isn’t that vast. 

As shared in my first blog post, when I found out after surgery that I have endometriosis, I was in a relationship. It definitely took my ex and I a while to get into the swing of things in terms of learning what endometriosis is and what effect it was going to have on us for the future we had wanted together etc. After a while I feel that he got sick and tired of me talking about it and having to put up with me in terms of pain. It was not something that he had signed up for.

It wasn’t a long relationship, it was a very short one. And didn’t last as long as I had wanted it to which does hurt. I had personal standards that needed to be met for myself in a partner, and I lowered them for him because I was in love with him. And I believed that he would change.

This was my first endo relationship, and I do worry for the future of meeting someone I like who also likes me and having to tell them I have endometriosis, and will not physically be able to be intimate all the time and always having that risk of infertility. Which is part of the reason why it was incredibly hard for me to let go of my ex. I know some will run in the opposite direction, and others will stay but find it frustrating. But after a little while I came to the realisation that the right person will accept me for who I am, and look at endometriosis not as a part of me, but a common enemy for the both of us. I believe I was given endometriosis for a reason. And that reason has not come to my attention yet but I know it will in the very near future. Perhaps it could be that it will show me who is reliable in a moment of emergency and who isn’t. 

I feel for ladies who have endometriosis, it’s never weak of you to ask for help and to make sure that you have support people around you who can assist and help you in times of need. And I can also not stress enough, do not put your all into a new relationship. Do not use all your spoons to make the other person feel loved. Do what you can do and what feels right. Match their input into the relationship, do not go above and beyond when they don’t respect you because it does end in heartbreak and stress, for me anyway, results in more endo pain and emergency hospital visits. It’s absolutely without a doubt not worth it. Do not put your health at risk for someone else.

At the end of the day, you need to learn to love yourself and who you are first before being able to love someone else. You need to accept what you have (chronic illness) instead of trying to put it to one side and think it’s not real and you don’t really have it. You have every right to feel normal of course, but you also need to work with what you have and what your body is physically able to do each day. So I cannot urge this enough, please, don’t waste your precious spoons. It’s okay to be selfish.

Lots of love,

Brie xx

Living With Endometriosis

The title is quite self explanatory although I’m going to dive into the deep end on this topic. So get your snorkels out, folks. 

Living with endometriosis is… difficult. And personally, I think that’s the perfect way to state what it is like to wake up every morning not knowing what is going to happen. Sure, us ladies with endometriosis can try to control what we have - some of us with great success. We can still go on trips, walk around feeling as normal as possible and still catch up with friends to see a movie or have a girls night. However, some of us aren’t so lucky. What is especially difficult about this condition is its inconsistency. One day you can be perfectly fine, no pain whatsoever and as happy as can be. The next day it could be the complete opposite. It will be a ‘lay in bed and don't even think about moving’ day. What is even more frustrating is the fact that even on a great day, pain can come along within milliseconds and your day is somewhat screwed. 

But us endo sisters take the punches as they come. We try and control this pain as much as we can with pain killers, diet, positive thinking, specialist visits and the support that we have around us. It is so important that when we are out in public, we have a back up plan just in case something goes wrong and we get a pain attack/flare up. We always have a bag which has our pain killers in it. And we can’t be too far away from the nearest hospital. If we travel, health care and where the nearest medical facility is, is of the upmost importance. Come to think of it, endometriosis defines every aspect of my life. Everything that I do, endometriosis is a factor in there somehow. I cuddle my cat but - nope she can’t lay on my stomach right now. Going for a driving lesson but having to make sure to take pain killers beforehand so nothing happens while I am driving. It’s all inclusive.

I wish for the day when my daily cramps subside, and I have the ability to go out and not be paranoid about what my body has in store for me. It’s going to take a lot of hard work, a lot of things/people to cut out of my life but my health comes first, and so does my happiness. Keeping positive is such a hard thing to do when you have a chronic illness but its so important. And keeping positive people around you is also important. As is letting go of the people who constantly bring you down. Keep the supportive people around you - let go of the ones who don’t and take you for granted. Another aspect of living with a chronic illness is having to explain to people why you can’t do certain things, or why you need to cancel plans at the last minute. I have come across people who completely understand. Either because someone they know also has a chronic illness or they just get it, and take your word for it. Others, not so much. They lose contact with you, or find no interest in your company anymore. And that is what you take as part of having endometriosis. 

On the positive side of it - endometriosis filters people for me. It shows me the people who care, the people who don’t, and the people who pretend to care when they need something from you. And that’s just life. Endometriosis has showed me what is important in my life right now, and to be straightforward and honest. Lots of people see me as being incredibly blunt and brutal. And I’m proud of that. It has taught me to stand up for myself when it really matters and counts. It has thickened my skin. Yes, I have scars from surgery. But it’s a daily reminder every day that I’m a fighter. I came into this world with clear skin. Assessing what my skin is like now, I can see that I have lived in my short 20 years on this world. I’ve loved, hurt, laughed, cried and been through every emotion possible. Endometriosis has matured me far beyond my years, and has given me the strength to let things go. It’s given me the opportunity to look at people around me from a different perspective. And for that, I’m extremely thankful.

I feel like there are so many things to explain about living with endometriosis and it can’t all be covered in one blog post so it’s something I can touch back on in the future. Thank you for reading this you lovely, beautiful people and I hope you are having a fabulous morning/day/night wherever you are!

Lots of love,

Brie xx

A Brief History

Bonjour! And welcome to my new blog. My name is Brodie Joyce (but you can call me Brie) and I was born in the land down under (aka Australia) but moved back to New Zealand with my mother to be with my kiwi family when I was one year old. And little to my knowledge, and my mothers, my future was going to be a roller coaster - a constant up and down with health issues. The first twelve years of my life were as normal as any other twelve year old girls who I went to school with. I had a few fainting episodes at school but it was looked at as a mental health issue which completely confused myself and my parents. Fast forward a year or so, the pelvic and abdomen pains arrived, even before my period had started - but I suppose, my body was preparing itself to begin my menstrual cycle. And when my first period did arrive, it wasn't the best experience of my life, that's for sure. I got it during the night while I was asleep, and woke up in the morning feeling a little bit sick. Once I noticed there was blood in my sheets, a huge wave of nausea came over me to the point I was dry reaching over the toilet. It was not from the sight of blood as I'm completely fine with that. My parents told me that was normal when you get your first period, however now that I know what illness I have, it was far from normal. 

Once I had started getting my period every month, the intense pain started. I went through ultrasound after ultrasound, hospital visits and emotional turmoil. And the confusing thing was, the pain wasn't prominent just at 'that time of the month', it was consistent every week of the month. Being told by doctors and specialists that it was normal and just one of those things, and the pain can be controlled by birth control (the pill). It took a while to find the right type of birth control, around a year. One type gave me morning sickness, another made no difference what so ever. 

To make a long story short - my GP ordered another ultrasound, but this one was different from all the others that I had. The radiologist actually wanted to find out what was wrong and did an internal scan. That is when she found something. A dermoid cyst on my left ovary. It seemed like a negative thing at the time, but endometriosis was found during the surgical removal of the cyst as well as having the Mirena inserted. When I got told by the surgeon I have endometriosis, I had no idea what it was at the time and to be honest, it wasn't explained to me in the detail in which I deserved. So it was up to me to do my own research.  I found out endometriosis is a chronic illness, that there is no cure and no sure explanation as to how it has come about and what causes it. Which did break my heart. The risk of infertility, more surgeries in the future was crushing. Knowing that having this illness will create issues in my future for finding a husband and life partner. I had a boyfriend at the time when all of this happened, but unfortunately we are not together anymore. Endo did make it difficult on the both of us, although he didn't know or was aware of the half of it. One thing that needs to be important to a person with any chronic illness is this; respect. Never take anything less than that from your significant other.

I am making changes in my life that are necessary in order for me to live a normal life as much as I possibly can. Dietary changes and positive thinking. I constantly have a heat pack on my pelvis when Im at home, and am on multiple pain killers. Possibly in the process of having yet another surgery but I'm a very lucky lady. I have so much support in my life from family and friends, I'm so grateful for what I have. I have the opportunity to study, to live, to love, to have fun. In comparison to other ladies, my endometriosis is light. And that, my dear friends, is a blessing for myself. And I wish that I could help every woman with endometriosis.

This is just a light overview of my experiences as an introduction to this blog. My intention is not to complain or anything in that sense. It is to educate others on this illness, this one that is near the top of the most painful chronic illness list. If I'm correct, it's the third one. I am going to share what my life is like, the struggles that I go through and what every day is like for a person going through something like this.

So if you'd like, check back in every now and then to see my new posts. 

Lots of love,

Brie xx