Surgery for Diaphragmatic Endometriosis

I’ve sat down to my computer a few times in the past few weeks and written a few different things here and there but never been able or ready to fully commit and finish a blog and for that I apologise. I was prompted by my surgeon in our post-op telephone conference this morning to ensure that I share my story as much as possible as although he has only performed somewhat similar surgery on a handful of women, he, as I, believe there are many other women suffering the same symptoms and are yet to come to a diagnosis or know how to get help. Thankfully I have been able to reach out and speak to a few in just this week alone again and as ever I try to see this as one of the few positives to rise from this absolutely shit situation. I’m going to keep it pretty factual and light and hope that in time I will be able to write some more about the emotional toll this has played out on me and the repercussions of this situation and others actions have had on my life recently.

I went to Sydney on the Sunday 5th March the night before surgery with my mum, we enjoyed Aladdin the Musical at Capitol Theatre (I’m still trying to get Prince Ali Ababwa out of my head and Mum if you’re reading this sucked in, it’s in your head again) to help me forget for 2 hours that I had to go back to the apartment to enjoy the absolute refreshing and beautiful lemon taste of Picoprep the bowel preparation of champions, used to clear out everything you digested since you were in the womb or so it feels like.

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The surgeons do this so they have easier access to everything in your stomach without excess risk of perforating your bowel or intestines. Awful at the time but in the morning, I think I saw the first sight of abs in a few years, however 10/10 do not recommend as your new #skinnytea option. I was first up on the list for the morning as the team had no idea how long they would be in there for, so arrival time was 6:30 at Royal Prince Alfred Hospital, it was the first time I’d been up that early in a while and I think it helped that I was still half asleep to calm the nerves. By 8am I was prepped, gowned said goodbye to mum, not without first ensuring “I Wanna Dance with Somebody” by Whitney Houston was 100% my funeral song and that under no circumstances was I to have a shitty lame Facebook status to inform people of my death (super morbid, but just covering the essential basics really)

The anesthesiologist and his sidekick came in, talked about how much pain etc ill be in afterwards with worst case scenarios etc, tried 3 times to get the larger canular into my shitty veins and then ended up putting a smaller one in and attempting again while was under, and for that my arms and I are grateful. As there were 3 surgeons going to be present and then their sidekicks it was a party in there and although I’m glad I was asleep at the time I’m sorry to have missed it, my surgery was performed by Professor Cooper Gynaecologist, who oversaw the excision of each location, as this is the gold standard for Endometriosis and the fight in stopping it growing back, please always ask your specialist if they are going to diathermy or (burn) the Endo or remove it completely as studies have shown that burning it can actually make it grow back faster. Professor Cooper found large amount of Endo (about the circumference of a tennis ball) on my pouch of douglas.. yes that’s a thing, its located here:

pouch

Large amounts of Endo in this area cause: digestive and bowel problems, pain during sex, pain in the bladder and during/after urination, frequent urination and burning sensations, yeah the girls….

endo on douglas

The white and black spots and film are the Endometriosis in this area. 

After further inspection there was a few more spots on my bladder and bowel, but thankfully nothing penetrating. The investigation then lead to my diaphragm, liver and kidneys where extensive amounts were found and removed by Dr James Gallagher an upper GI/General Surgeon.

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Views of the diaphragm, kidney and liver.

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As per the middle photo, 8cm of my diaphragm was removed (this is the lining between stomach and chest cavity) and you can see my lung peeking away there, just saying hey. Because of how much was removed instead of a thorocoscopy a thorocatomy was performed where a 10 cm incision is made, my ribs were cracked open and right lung deflated to allow entry into the chest cavity for Dr Matthew Bayfield a Cardiothoracic surgeon to go in and pack the area with a type of gauze and plastic. I am now a bionic woman 😉 at the time he also went through the bronchial pipes of my lungs through my mouth and checked for any involvement of inside the lungs, which there was none of thankfully.

I woke up after 4 hours in recovery feeling very sore and sorry for myself, to be honest its the first time I’ve remembered actually waking up in pain from surgery, as usually they have you so medicated you’re groggy but okay, but this time because I was having to move my lung to breathe the pain was instant. I had 8 incisions in total, a chest drain inserted into the incision that was just under my right boob and a nerve blocker at top of my right shoulder just above the large incision, which funny story, Mum and I didn’t know about until we took the bandage off at home 5 days later… in the haze of everything we didn’t think I had been opened up largely at the back and my stomach incisions were checked everyday but not the back.

Post Op in Recovery, Day Two with Chest Drain still in, Day 6 Thorocotomy Scar. 

I was originally booked to stay in the gynae ward, but because of the extent of the surgery and the chest drain I had to stay in the cardio ward. They were unable to find me a bed for almost 12 hours and so I waited from 11:45am – 11:30pm in recovery, which I can say hands down was the worst experience in a hospital in my life. Through no fault of the nurses who were amazing as (almost) always but by being in such a large open area in so much pain with people that, to be quite frank didn’t wake up from surgery with much of their dignity left in tact. Due to the fluid in my lungs and a small pneumothorax I had to have an X-Ray straight away in the recovery area which was excruciating to say the least as I had to move to suit them with the right side of my body numb but also in so much pain making it even harder to navigate.

Because of the amount of fluid in my lungs it was really hard to take a deeper breathe without coughing or wheezing or generally sounding like this…

darth

and to cough, fuck, I can’t even explain. But ironically to breathe deeper and to cough helped clear the fluid and to ease the pain afterwards. It also stops you from getting pneumonia or infection so that is also a plus?

On day two I had the chest drain removed, it was less painful than I had anticipated and definitely not as bad as the stomach drain removal of 16′. I also had my PCA medicine swapped from fentanyl to hypermorphone, which I was informed is 5x stronger than morphine, ya not bloody wrong, holy moly. I spent the next day or so in and out of sleep and even remember seeing the golden snapchat filter butterflies flying around the room at one point. Each day there were things I noticed I could do that I couldn’t do the day before, day two was getting up, day three was showering, day four was being able to move without it feeling like my chest was falling apart, day five I could finally put my hand to my head, day six my shoulder was up in the air and so on.

My progress almost two weeks later is so much further ahead than expected. Do not get me wrong, my chest and lung still hurts, I can’t sleep on the right side which is KILLING this stomach sleeper.. and I still can’t lift, pull or hold anything too heavy or wear a bra, so basically I look like a boy thats been hacked at but I feel SO much better, the Endo pain has pretty much completely gone, I can’t quite believe it, and I’m hoping it lasts a LONG time this time. I feel so grateful that I was able to have this surgery, quite literally, thankyou to my mum for paying as it cost alot more than my private health insurance covered (pays to be the best doctors in your field) but it was completely worth it, every setback, every consultation, every drive down to Sydney. I feel like in the past two weeks I have got a quality of life back that I haven’t had in the past year and while emotionally I’m not doing so great (save that for another blog) physically I feel fantastic (minus the surgery pain and nerve pain from having my ribs cracked open)

If you are experiencing symptoms of shoulder, chest, upper stomach pain, breathlessness that starts off by coming around 1 week prior to your period or a few days during menses. GET IT CHECKED OUT!!! I cannot stress this enough, the pain will only get worse and it may become completely debilitating like it did for me. Some instances of hormonal treatments don’t work for everyone, aka the whole 6 months of Zoladex that stopped only one period and made me a crazy person.  Surgery can be the only option and although it is “rare” and doesn’t work for everyone, it can also be the best thing that you can do for yourself.

I also want to say thankyou so so so much to everyone who was there for me and supported me during this time and sent such beautiful messages for surgery. You have no idea how much they have meant to me and have got me through some really dark times when people I expected to be there decided not to be.

Wishing you health and happiness always,

 

xoxo-ally
 

 

 

 

 

 

 

Women’s Health Rights, am I right or are you right, aren’t they OUR rights?

Jump aboard the rant wagon…TOOT TOOT, prepare as we are about to leave the station headed for Rantville. I am fired up and ready to unleash. The Women’s March in Washington was something I had planned to blog about in the coming days but I’m raring and ready to go now…

triggered

Tonight, A Current Affair ran a story about a Mother with Women’s health issues, specifically Endometriosis and a Prolapsed Uterus. She is fighting Centrelink as they have denied her the disability support pension that she has tried to claim as she is currently bedridden with chronic illness taking a cocktail of hormonal and pain killer medication 22 times a day. I can barely function when I drop 2 Endone let alone that many pain killers. So I’m already empathising with her.

Now you might be thinking, WTF was Ally doing watching that shit of a show? I wasn’t, I can’t, sorry Trace GShaw, ya show’s shit and I don’t need to know every 6 weeks which washing powder is best and which is rorting us… I was scrolling through my Facebook feed and noticed a few Endometriosis acquaintances had liked the link ACA had shared with the description of the story and a short clip..AND then I read the comments….. Don’t get me wrong I’m glad I did and happy the story was run, it’s always great when a platform this large opens up a discussion on this condition and sets us up (for those educated and informed) to be able to better educate, but my oh my I was not ready for the onslaught of trolls with the most nasty ill informed comments, judgements and “advice.” I’ve covered their names and photos for privacy purposes but please see a few below….

These comments are just the tip of the iceberg, other’s I didn’t even want to give the time of day posting but they question why she has so many tattoo’s if she’s ill and why she’s expecting a “hand out.” Excuse me while I go get my 7 tattoo’s lasered off that I got prior to diagnosis and try to get the cash back for them….?

huh

I can’t, I just bloody can’t. Just incase this is your first time here, you don’t know or have forgotten…
hysterectomy-not-a-cure

endometriosis
ˌɛndə(ʊ)miːtrɪˈəʊsɪs/
noun
a condition resulting from endometrial tissue growing outside the uterus and causing pain. 

If there is anything you can take away from reading my ramblings on this blog, please let it be this……….THERE IS NO CURE FOR ENDOMETRIOSIS. Yes many women get some or a lot of relief from having a hysterectomy (my mum included) but it is not a cure and for those in my position not an option that would even be considered as a treatment/relief option as I am way too young to completely remove my reproductive organs unless life threateningly necessary and even if I did, who’s to say that I would get any relief?

Here’s the thing that gets me about all of this, that’s a lie.. there’s more than one.

1. Women are already at a disadvantage when it comes to our equal rights, there’s a reason we’ve been fighting and protesting for them for so long and still to this day.. WHY THE FUCK (sorry) are we then turning on each other and making it harder or putting down other women battling similar situations, illness’s or condition and judging them for how they are feeling/coping/dealing with their illness and spreading misinformed information based on exactly what happened to them and them alone? It’s great that something worked for you that didn’t for me, or vice versa, but it doesn’t make either one gospel. It carries over and applies to so many situations, including one that social media influencer Ashy Bines has been snap chatting about recently on the absolute attacking behaviour of some Mother’s who constantly troll other Mum’s on what they are doing and how they are doing it. We’re stronger together and tearing another Woman down won’t make you any happier or any less sick, rich, successful, skinnier, prettier, nicer etc. We should all be feminists. Not to compete with Men or to say that their problems and rights don’t also matter but because we are all human and we all deserve the same basic rights.

2.  WHY aren’t women’s health issues and preventive tests taken more seriously?! Why in 2017 are pretentious white privileged men deciding for us what we can and can’t do with our own bodies? We are so lucky to have more than most in terms of options for Women’s Health Care in Australia but we are NOT 100% there and discussions regarding the cuts to many bulk billed preventative and diagnostic tests such as Pap smears, STI Checks, Ultrasounds and MRI’s are scary, especially for women as they rely on these services to detect early symptoms of a range of illness’ that do not apply to men.

3. Why is there not a better system put in place to assist those who need support and assistance from the government? I speak from a place where I am very lucky to have the support of my partner who earns enough to be able to support us both currently. But what if I didn’t? My insurance claim for salary assistance has taken 3 months so far and is still at no point of being close to getting me any kind of income. If I didn’t have a partner a mother and friends in positions to be able to assist me during this time I would 100% have been well and truly fucked and also in a position where I would have to sacrifice my level of care and expertise in a surgeon to be able to afford to get treatment, that’s if the healthcare provider I would then be seeing BELIEVED my pain/knew what they were doing/were able to further assist me. Which I have already been in the position to have to move to someone who does and can try to get me some further relief so I can work and earn an income and not pop pain meds like they are Pez, some women are not in this position, their pain is overwhelming and consuming, there ability to earn an income severed and their ability to get good treatment also altered. I am fully aware that there are ALOT of people who do “rort the system” and take advantage of the tax payer, but I bet there is also a lot that would be in much more vulnerable and deserving positions for support than some already receiving it. This is the conversation that surrounds invisible illness’ and why they need to continue to be discussed and advocated for. How sick is sick? Who should be able to question my pain? When are you sick enough?
4. Why won’t large media outlets go to specialists who SPECIALISE in the discussion topic ie. gynecologists that specialise in Endometriosis. The doctor questioned in the segment gives a substandard description of Endometriosis at best listing the symptoms as… “stops you having intercourse, pain when opening your bowels pain when using your bladder, pain around a period” and also saying “theres lots we can do to treat them.” Yes those symptoms are all true, and symptoms I have had. But they aren’t all and they are all helping to continue the stereotype that Endometriosis is centred only around your period and pelvic pain. I can assure you when I’m lying on my bathroom floor, crying and struggling to breathe or coughing up blood from Endo on my diaphragm the last symptom on my mind is the fact that sometimes my pelvic Endo makes it too painful to have sex with my boyfriend or is it okay for them to go creating a false impression that there is a cure, some treatment options work but they also may not. Everyone is DIFFERENT, but we are all fighting the SAME battles.
The Women’s March created a discussion across the world and it also felt like we were all banded together for the day across the internet over seas, fighting for the same basic human rights, equal rights, equal healthcare, equal pay and DAMN did it feel good. So all I’m asking is why can’t we do the same every day?
womensmarch4womensmarch3womensmarchwomensmarch2
If you want more information or to better educate yourself on Endometriosis I encourage you to go to http://www.endometriosisaustralia.org. And as always I encourage you to always think before you speak.
Wishing you health & happiness,
xoxo-ally

Blood, Sweat & Tears.. Literally

Finally that shit of a year is over! Although 2017 is here and it’s automatically given me a sense of relief and almost cleansed like state, my immediate battle to get back to “normal” whatever that is, is still a little ways off. It may be a new year, but I still plan to serve it up straight and honest and remind anyone going through a shit time that it does get better and YOU ARE NOT ALONE. queue Michael…

michael

So, what went down in the last few weeks….?

My beautiful, kind and caring uterus served up my period TWICE #blessed. Most days I have some level of chest and right shoulder pain, what I would call a 2 or 3/10. I can only best describe it as a heavy feeling deep in my right side of my chest and shoulder pain as if you’ve had a big session of shoulders at the gym…

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(if you haven’t watch along came polly then you should) …if like me you cant really remember the last time you went to the gym..LOL …then that feeling if you’ve slept on shoulder wrong and wake up with it tight and sore and a small amount of pelvic pain. But, when the red bus rolls around, it turns it up to about 7 or 8, its bearable with opioids, but sometimes the breakthrough pain is absolutely horrendous, it almost feels like what it would be like I imagine having a heart attack, a really sharp winding pain where you struggle to catch a breath. If I don’t catch this pain with medication before it really starts, I really struggle to get it under control. This happened once while my Mum was staying just before Christmas and so we went down to the hospital ED and they were able to give me further pain medication. The other symptom I had during that time was coughing a very small amount of blood up on both of my last two periods, during the first or second day. Not gonna lie, but my mind automatically went full Satine in Moulin Rouge the first time it happened..

moulin

“Tell a story Josh….” Obviously it’s not an ideal situation but not this morbid.. When I discussed this with my specialist he decided it was time to book in surgery with him and a Upper GI/General surgeon who specialises in laparoscopy the earliest I could get in being March. All going to plan I will be having VATS (Video Assisted Thoracic Surgery) which is a fancy wording for laparoscopic chest surgery AND pelvic resection at the same time – unless they have to open my chest up with a large incision, I would then have pelvic surgery again at a later date. The chest surgery to check my diaphragm and lung, explained to me in simple terms that my lung will be blown up with air and checked with a camera. Ideally my specialist prefers to refrain from doing this surgery on patients who have not had children yet, and Josh and I were asked to discuss if we would consider having children in the next few months, which is not an option we want to even consider, we aren’t in the position we would like to be in to have kids nor do we want or are ready for them. I won’t lie personally I find it frustrating to constantly be told this or have it almost expected of you to do from professionals, it adds so much pressure to not only an already overwhelmed and exhausted mind but to your relationship…

triggered

….but Ill leave that for another blog. Now I am not a Doctor and can only explain as explained to me by my specialist, the risk is that when removing pieces of your diaphragm, once pregnant, the pressure of the baby etc can allow the possibility of your liver or other organs to hernia into your chest cavity, which can create a lot of further complications, and is something that my specialist has had to previously treat in a few of his patients that had Diaphragmatic Endometriosis. I have weighed up the risks and decided the life I have now, sidelined and constantly popping pain killers is/was not the best outcome possible of my previous surgery and I want to take every opportunity I can to feel significantly better.

I mentioned earlier that my Mum visited, this was not a planned visit. I had a really bad day/night, overwhelmed with everything – the constant pain, financial situation, strain on my relationship, the side effects of Zoladex (aka. the implant devil that makes me a crazy hormonal psychopath) – which I have seriously considered stopping, but have decided that being my surgery is in March at the same time I have to cease treatment I will hold out until then. I was in a really bad place, my Mum, side note: the best person I know, asked my beautiful friends to go to my house put me in the shower, dress me and put me to bed and got straight in the car and drove the 6 hours in the middle of the night to make sure I was okay. Depression is scary and in the lows clouds your mind so much that you can’t see past anything apart from the bad, I am so grateful for a support system and can’t imagine what it would be like for those that don’t have close friends and family they can rely on to help them and get them to see that depression is temporary and not worth loosing your life over. Mum and I spent a few days doing some stuff out of the house, trying to help me relax with a massage and some shopping, food and helping me organise an amazing Christmas dinner with my friends..

Which turned out to be when my absolutely fucking fabulous friends told me in a beautiful card that they had created a gofundme page, that so many amazing kind and generous people had donated to and raised $1180. I couldn’t believe it and all I can say is I am so genuinely grateful it REALLY helped me pay off some of my remaining medical bills, as its now been 3 months with no income. 

I had a very restful Christmas period, it was really hard to miss out on so many events I would usually not think twice about going to but it was also nice to relax and make the most of doing a whole heap of nothing. I slept ALOT to make sure I was okay for New Years and was lucky enough to make it out to a NYE house party and my favourite day of the year Field Day. I have a lot of guilt surrounding trying to balance being off work and still leaving my house so I don’t get committed, legit, but it’s not humanely possible for me to stay indoors 24/7 and I am reminded by those close to me what I already know, Endometriosis is an invisible illness, I am unwell and shouldn’t have to feel guilty for trying to get better. So if you ever feel like you should be doing more or less, or feel like you’re not well enough or not unwell enough, do whatever you need to do to feel better, good, sane, happy. Modify everything you can so you can enjoy or complete what you usually do at whatever level you can accomplish that day. For me currently that looks like, a 20 min walk instead of 1 hour, doing the housework in 20 minute incriminates, sleeping in a little later and still having a nap throughout the afternoon, preparing myself with rest before anything I want to go to, sitting down almost the entire festival/party. And (trying) not to feel guilty if I just can’t that day.

I still have a few shingles left on my face. So if you see me around with no makeup on and I look like I’m straight out of one of those heroin comparison memes, I apologise.I’ll leave you here before this turns into a short novel.

I am going to start uploading more regularly to our instagram page @newyendosupport for my everyday life with Endo and give some tips on things that I’m discovering help, so if you’re interested and don’t already, give me a follow there! 
Wishing you health & happiness always,

xoxo-ally

If you or someone you know is suffering depression, please reach out.

Lifeline 13 11 14
beyondblue 1300 224 636
Kids Helpline 1800 55 1800
MensLine Australia 1300 789 978

What 2016 and Endometriosis has taught me so far…

Update: Seeing the new specialist was amazing!!

praise-jesus

Not once did I be made to feel like any of my symptoms weren’t possible and that surgery to remove Endo from areas such as your diaphragm, lung or chest cavity are certainly achievable, albeit risky, and something I would most probably be having done. He requested I  have some further scans (another contrast chest CT & ultrasound of my lower pelvis including a transvaginal ultrasound.. basically the base model of dildo looking things straight up ya hooha by a stranger that then stays in there for around 10 mins while he moves it around to see and feel anything and you’re just trying to make some sort of small talk…

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That shit is awkward AF. But along with all the other crappy painful or awkward things, its necessary, and I would just recommend you relax, take it for what it is and it will be over as soon as you can say “warmed lube..”

honey-givI wish I was kidding..

Those results are with the specialist waiting for my follow up appointment via phone next week. Since then however I was diagnosed with the shingles…

shingles

When life kicks ya down it really makes sure it hurt, these little bad boys are itchy, painful and make you wonder what you honestly did in a past life.

 

Yes that is my bum, you’re welcome. The one on my arm was the first, a blister that burst then turned into several smaller scabs, the others popping up about a week later and doing the same. From what I’ve read shingles pain is up there but to be honest either being that I have a relatively mild case or that dealing with the indescribable intense pain that is Endometriosis has made other pain bearable in comparison. Apparently you get shingles from a suppressed immune system and/or stress.. not sure how I got it then really tbh…? The pain medication for shingles is a nerve blocker and it literally sat me on my ass and made me really unwell in the stomach, vomiting for 4 hours straight kind of sick, the anti viral medication also really dries you out so I had a sneaky trip to the E.D on Friday to restock my fluids and flush out the drug which made me feel a lot better. I have staggered it to my regular pain medication since and that seems to have helped.

Im not sure if its the shingles, the extra pain medication but I’m feeling reflective and thought I would share the things I have Kylie Jenner’d this year…

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  1. NEVER EVER TAKE YOUR HEALTH FOR GRANTED!!!!! Bold on that baby. Or anything else for that matter..
    Never ever again will I ever take for granted- my ability to be able to look after myself, go to work, exercise, not have to take several medications just to be able to function, spending the day awake and not in bed, making and spending my own money, going to work, being able to look forward to or plan events, attend events, my friends, family and boyfriend, having purpose in my day, getting to dress up and wear makeup, not having to spend thousands on medical bills did I mention work?

    **Side note about women’s health in particular, that women definitely hit the raw end of the deal when it comes to their bodies; there is a serious lack of UPDATED information that Doctors NEED to educate themselves with when it comes to fertility & illness within the female body and reproductive system, especially with Endometriosis and its many stereotypes and in a billion dollar industry run predominately by men it is CRITICAL we fight for our voices, equal rights, research & awareness and empower other women to do the same.

  2. Your friends, family and colleagues have your back no matter what in absolutely every way, in ways that you didn’t even know possible. Their love and support is worth its weight in gold, it could literally cure you (if it had the power.) I do not know what I would do or have done during this time without their constant ability to lend an ear, shoulder, a dollar (or five), their kindness, driving ability, good taste in food, trashy mag and inappropriate hospital banter, the flowers, the calls n’ messages and the unwavering sense of them being there, sometimes even literally taking the shirt off their back wherever possible to make me comfortable or to make it a little easier. All I suggest and hope I have and will continue to do is be there in any and every way possible for those that make time and effort for me, and occasionally even the ones that don’t because being a kind person will never ever go out of fashion and will always be noticed.
  3. The people that tell you to love yourself first are on to something.. and its not a crock of self loving b.s. You are the absolute gatekeeper of your universe, and as much as all the above can and will help, if you’re not willing to help yourself; you will never really feel better. You know yourself better than anyone, I can only reiterate, if something is not right, if you do not feel okay, mentally or physically SEEK HELP! Someone out there is willing to wade through your mind and help you understand yourself better, what you need to do to feel better, to help you cope with whatever makes you feel anxious, unloved, shit about yourself or life- whatever it is. There are also Doctors out there willing to go the extra mile or that have researched extensively in the field in which you’re diagnosed, be it Endometriosis, Diabetes, Lupus and they want to make you feel like yourself or help you on the road to better manage your chronic illness. They aren’t going to seek you though, so do your research, invest your time and money with someone who treats you with respect and dignity. Also put in what you put out, if I would have known what I knew now I would have spent the better half of the year exercising and fuelling my body with better food, not for any other reason than to feel good, not to look any different. I am by no means ever going to give up bad or “junk” food, I do not have the will power, but I think I’ve finally learnt to accept that, and am going to follow a principle of all in moderation the coming year. #newyearnewme #dietstartsmonday #notthismonday #january1
    new-year-new-me
  4. Go after what you want and don’t get distracted by time fillers or money wasters. This means SAVING MONEY! Yes it is all well and good to spend money having a good time ..no-regratsBut not thinking even slightly about your future is not going to pay your bills when you can’t and it’s not gonna get you your dream house to renovate and interior design the shit out of (house goalz). Work hard, play hard, but take after your boyfriend and think about a few months further ahead pls and stop buying stuff that you don’t actually want but are just buying to make yourself feel better. Save and wait to buy the item you wanted, not the one you bought on a whim that you didn’t. Be a planner. Write it all down. Less seat of pants and more money in pants for pants. This also means stop buying food when theres food in the house. Sorry Maccas, its not you its me.
  5. Everyone is fighting a battle you know nothing of, do not judge people and be as honest as possible so that people who do fight similar battles can relate. I hope and think I already had this one kinda down pat but I’m even more conscious of it now. This even goes for those little negative thoughts you had about peoples actions or why they act a certain way or do something.. it might be something that HAVE or HAD to do in order to make themselves feel better, think better, be better. When you see someone has something wrong with them you don’t treat them like shit so just because they don’t look unwell or depressed doesn’t mean they aren’t and your act of kindness or supportive words, or sharing your story might help even if for a minute, hour, day, week or it might be so moving it changes them forever. So many people and people I watch on youtube to relate to or be influenced by have changed me in ways I didn’t know possible and those who were negative hurt me in ways I could imagine.

2017 can only be better,  I am DETERMINED to get to a point where I can manage my Endometriosis. I am gonna tell it to pack the fuck up and get out of my lungs, recover. I’m going to water my grass where it grows in myself, my relationship, my friendships. Try to be a better version of myself and as a Daughter, Girlfriend, Sister, Aunty, God-Daughter, Niece, Grand-Daughter, Friend, Colleague, Foe, Acquaintance, Stranger.  I’m going to continue to spread this message so women of future generations don’t have to fight so hard to be heard, or take so long to be diagnosed or have to just “deal” with debilitating pain everyday, I want that for my possible daughter, my niece, my friends daughters, sisters etc. I hope you will take the time to think about what you realised in 2016 and what you’re going to do in 2017 to better yourself and make yourself feel better. 2017, we’re a little worse for wear but we’re ready..

 

you cant fuck it up any more than 2016 did…

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xoxo-ally

Endometriosis and Depression.. bffs?

I feel like a bit of a broken record but I do want to apologise again for the length between blogs. I’ve certainly realised how hard it is to write about what’s happening or happened to you when you’re upset about it or struggling to find any kind of motivation for daily life let alone sharing it with others.

The past fortnight has been to put it simply, fucking terrible. I’m starting to really notice the effects of Zoladex. I am beyond moody; basically a sensitive, marshmallow centred, snappy, sooky bitch.

ursula

It makes it very hard to stay positive and mindful of whats going on outside of pain and my situation. The pain in my chest and shoulder has begun to radiate further down my right arm and I have noticed some of the similar pain in my left hand side as well. I have been taking Targin and Endone religiously and still getting severe break through pain at times.

flare-up

painkiller

Last Monday after vomiting twice in the morning due to intense pain, I decided to go back up to the Emergency Department as advised to do by my specialist when a major flare up occurs and was basically told to go home and continue taking the same medication and in as much words, suck it up and deal with it.

I cannot even describe the affect having a legitimate argument with the Emergency Department Doctor has had on my self esteem or the depression I’ve been sucked into. I am angry, hurt and again disappointed that people that are trained to look after you when you’re unwell can be so cold, blunt and tell you things about Endometriosis or your situation that you know are not true based on hours of research and speaking to women that are having or had the same pain your experiencing and had several further investigations, treatments and help given to them.

I was receiving several mixed messages from my specialist via the doctors at ED  and previous statements made to me about my condition and an second opinion appointment I had made with my previous General Surgeon had been cancelled as he believes he cannot further assist me. This led me to make the decision to call Professor Michael Cooper who is head of Gynaecology at RPA in Sydney and specialises in Endometriosis and specialist management teams related to rarer cases.

My GP who was absolutely amazing in calming me down after my experience at the hospital advised me to “think selfishly, this is your pain, only you can describe it, feel it; we will keep searching until you find someone who will listen to you, your concerns and not dismiss you.” He wrote a special referral to request an emergency appointment and thus getting me in this Thursday.

I really needed to hear that and be helped from a health professional, to hear that from your friends and family is one thing, but to be reminded that there are Doctors on your side is sometimes needed to be reminded not to give up hope. But sometimes and somedays that is a lot easier said than done and yesterday was one of those days.

Somehow between that and yesterday this happened aswell…
lol

From what I have read it is possible to still get period after your first Zoladex injection, all I can say is fuck

triggered

…nek level pain. 

Depression and Chronic Illness’ do seem to go hand in hand and based on the research I’ve completed it seems as though Endometriosis suffers are so much more likely based on lack of information, hope or help, to just give up. When all of the things that make you feel like you are taken away from you or impossible to do because of chronic pain, a pain that only some people believe or that some get over knowing about it’s so hard to see the light at the end of the tunnel it is just utterly depressing.

As much as you want to sit in the bottom of the shower, cry your heart out… aka exactly what I did yesterday…

shower

You do need to take the time to feel what you’re feeling, your feelings are validated, its painful, exhausting, frustrating, disappointing, upsetting, the list goes on. But after you’re done feeling those things, you need to pull your socks up do what you can to feel better for a few moments, whether thats taking a nap, using your heat pack, taking a shower, a walk, seeing friends, watching television. Anything you can do to preoccupy your mind.

You can also do what I’ve done to help and get yourself a furry companion..

Daisy.jpg

Daisy, my little 1/3 Ragdoll, British Shorthair & Tabby kitten that is keeping me occupied, motivated and bringing me happiness with her hilarious version of fetch the mouse and her adorable sleeping positions. She is a very welcome distraction and I’m glad she has come into my life at a time when I really need her.

Only a day until my appointment so it won’t be long between posts, I’ll discuss what happens from here. Fingers crossed for some good news!!

As always, wishing you all happiness and wellness.

xoxo-ally

 

Zoladex and me.

zoladex

Can’t say we’ve gotten off to the best start. Literally, you hurt like an absolute bitch to get put in. I wouldn’t call us bffs or even friends, more like allies. I know you’re helping me, but you’re definitely also hurting me.

What is Zoladex?

Zoladex (goserelin) is a man-made form of a hormone that regulates many processes in the body. Goserelin overstimulates the body’s own production of certain hormones, which causes that production to shut down temporarily.

Zoladex is used in men to treat symptoms of prostate cancer. Zoladex is used in women to treat breast cancer or endometriosis. Goserelin is also used in women to prepare the lining of the uterus for endometrial ablation (a surgery to correct abnormal uterine bleeding).

Zoladex implant is inserted through a big ass, thick needle into the skin of your upper stomach, once every 28 days. You will receive the implant in a clinic or doctor’s office.You are not likely to be able to feel the implant through your skin…..and it should not cause pain or discomfort…..

wrong

I’m not going to lie to you, I’m not a sook, I’ve had several tattoos, take needles like a champ (unlike when I was a teenager and would get myself so worked up I once vomited in a pathologist’s bin at her feet) I’ve had approximately 36 canular’s inserted this year alone and this son of a gun needle HURT. It is up there second to having that drain removed from my stomach at the time of my laproscopy. I don’t tell you this to alarm you, I tell you this because Doctors are so blaze! They don’t give it to you straight. “Little sting coming up” my ass.

What should I avoid while receiving Zoladex?

Avoid drinking alcohol. It can increase your risk of bone loss while you are being treated with Zoladex.

no-alcohol

Yep we get all the fun don’t we? But wait there’s more..

Side Effects

  • hot flashes, sweating – waking up and ringing out your own shirt you’re that sweaty..along came polly.gif
  • mood changes – its a god damn emotional rollercoaster
  • increased or decreased interest in sex – thankfully so far it’s on the ↗
  • headache – all day evreeday, varying in severity and location
  • swelling in your hands or feet – thankfully haven’t noticed this one
  • vaginal dryness, itching, or discharge – you’ll be glad to know this also isn’t an issue
  • changes in breast size – didn’t get them in puberty or now, bummer
  • acne, mild skin rash or itching – skin is definitely itchier all over, no acne (yet)
  • painful or difficult urination – no pain just difficult, very stop start 
  • anxiety – have noticed that my overall anxiousness is worse, there are also several contributing factors to this so wouldn’t just be the drug
  • deepening of voice – nope, and I hope it stays that way, i already have a deep enough voice!
  • mental depression – yes, overall feeling very low 
  • fatigue – literally what I spend 80% of my day doing is sleep
  • increased hair growth – nothing more than normal… 😉hairy-legs

The side effects while horrible when they happen are tolerable. I had bled for 2 weeks post op and have since completely cleared up since the implant was injected. The pain in my pelvic region for the most part has settled down, I am however still getting very strong and frequent pain in my chest, right upper quadrant radiating to my shoulder and right arm and was hospitalised again last week for pain management. I am currently taking the same combination again of Targin 12 hourly, Nurofen & Panadol 4-6 hourly and 10 mg of Endone prior to bed which keeps the pain somewhat under control.

How does Zoladex work?

The GnRH agonists are very powerful drugs that mimic this hormone and therefore travel to the brain, but they are up to 2,000 times more powerful than the natural hormone. They therefore cause exhaustion of the pituitary gland in the brain and this means that there is no longer any stimulating factors controlling the ovary. The ovary goes into a pseudo-menopausal state and refuses to work. Therefore in most instances halting regular monthly periods and stopping the hormone oestrogen feeding or essentially growing the endometriosis.

I hope this honest and open information was helpful for anyone considering using this hormone in their treatment plan. So far it is hard to say if there will be further side effects or further pain relief but I will be sure to keep you updated closer to my next injection in a month and any changes after the second time.

I’ve been having some amazing chats with women on Instagram & Facebook who have reached out to me and discussed my current situation, theirs and offered advice and for that I am so grateful and hopeful for how much further this page and blog can go! A few wonderful Endo sisters have offered to share their stories and we will be posting those soon so keep your eyes peeled.

As always, sending positive vibes, love and hugs to all of you and extra to those suffering flare ups or preparing for surgery.

xoxo-ally

 

 

 

Ref:
http://www.gynaecologymolloy.com/what-is-endometriosis/endometriosis-hormone-treatment.html
https://www.drugs.com/sfx/zoladex-side-effects.html

Dear Nurse

I’m sorry that my pain is an inconvenience to your day. I’m sorry that the countless hours I spent writhing in pain and worrying about whether or not I should just go to hospital or if I’m wasting yours and your colleagues time causes you stress. I apologise that my chronic illness though at times under control appears to be something that I make up in my head, just because you can’t see it. I may look okay, but inside I am hurting and you should know that your words can cause just as much pain.

Until you’ve been on my side of the bed, don’t judge me. I may be young, but I am not stupid. I’ve spent almost 24 years in this body of mine and I know when it is failing me. Tell me, are you constantly feeling guilty for missing work? Do you feel the sadness that comes with missing events you’ve spent months waiting for? Is it you who feels like a burden on your partner financially, your friends emotionally and family distantly? Do you wonder if all this trouble with be in vain and that you’ll end up struggling to conceive or be back here again in a few days, weeks or months time? Are you sitting in a hospital bed lonely, waiting gratefully for any time that your friends and family can spare time to visit?

In any situation I would choose health. I would choose to be the happy healthy version of myself I was at the start of the year. The one who could exercise, stay awake all day without having to have at least 2 naps, walk to work, work a full-time job, go out and enjoy myself as a 23 year old, have a above regular sex life with my partner, spend my money without guilt or worry, plan to travel, without copious amounts of drugs that make you spaced out, unable to drive, function or sore. Don’t get me wrong, I don’t want your sympathy, but I do deserve your respect. If you can’t empathise with my situation or if you don’t know the debilitating symptoms endometriosis brings, don’t open your mouth. Don’t question me as to “why I’m here” or “what can we do for you that you can’t do at home?” No, “its not in my head,” I might be “emotional” as you say, but thats because after dealing with several illness’ and a few people like you the majority of the year I am frustrated, overwhelmed and to be completely honest, over it. When my specialist Dr who has just completed major surgery on me has asked me to take myself to hospital, when she has personally liased with and requested my transfer from the Emergency Department to a different hospital under her care for pain management and to set up further management plans, don’t question my intent, my integrity and frankly don’t be such a god damn bitch.

I won’t ever be that person lying here screaming or carrying on, I’ve learnt to fight like a girl, like all of us with Endo have no choice but to do, I’m tough, so don’t take my chirpy nature and kindness as weakness or fraudulent. I’m sorry if over the years your compassion has left you, or if it was never there to begin with I wonder, is this the right job for you? You might have ruined my afternoon but I won’t let you, or people like you ruin my attitude. If I needed to pop two nurofen, chuck my head pad on and lie on my couch I would have, but instead I’m here with you, listening to the old man who keeps yelling and complaining about the air-conditioning temperature, now you tell me who’s the most the inconvenience on your day?

Thank-you for being the stark contrast between the nurse who sat with me patting my head and wiped my tears while I cried over how you made me feel, or the nurse who made me a cup of tea and stole an extra packet of biscuits for me to choose between, or the nurse who went against policy and put my heat pack in the microwave to give me some relief.

I’m sorry if my complaint gets you in trouble or pisses you off, but I wont accept the way I was spoken to and I hope you learn from your mistakes before you make someone else struggling with this awful condition doubt themselves or wonder why they are bothering trying to seek help from the people who are trained to care for them.

 

love-endo-warriors