ENDO CHAMPS

As a sufferer of Endometriosis for over 17 years I have experienced the entire spectrum of problems faced by many girls and women who have Endo.  The delay in diagnosis, miss-diagnosis, doctors who believed there was nothing wrong and it was purely psychological, strains on relationships, difficulty working and general lack of understanding.

Despite having over 30 surgeries for treating Endo and it's related issues (adhesions, bowel problems, infertility) I am one of the lucky ones who've found a great team of doctors who understand, support and are willing to try 'out of the box' solutions to my problems.  I, like many other sufferers of this devastating disease have had points of feeling defeated by the disease, but in late 2013 when I came across this campaign I realised it was time to fight back and take control. I have always been open about my disease and been willing to educate where I can, but now we have a platform on a national and global scale to help educate people on what Endometriosis is and how it affects women and their friends and family.

 

My goals?  Well it's simple really, to be an Endo Champion!  To fight back and win, to share information, raise awareness and to help the next generation of 1 in 10 young girls who will be diagnosed with this disease.  I don't want them to face the challenges I and so many others have faced and to help avoid the stress that comes with the 7-10 year delay in diagnosis, the social isolation and the long term affects this has on girls self esteem.  I want to help and thank the friends and family that travel this difficult road with us and show women around the country there is support for them, and be a voice for those that aren't able to get involved.

 

If you want to help me achieve these goals then join with me and become an Endo Champion, help us win and raise awareness.

Jo
WA

I am participating in the EndoMarch to raise awareness of Endometriosis. Many women live with this illness undiagnosed. It took me years of presenting symptoms to my general practitioner to eventually get diagnosed and presented with treatment options. I want to help empower women. I want women to know they are not alone with their symptoms and that there are support networks, specialists and treatment options out there. Endometriosis isn’t ‘women’s business’ it effects relationships with partners, friends and families. It affects businesses, governments and communities though time off work and medical expenses. Endometriosis has wider ranging impacts than the physical disease alone. It can affect woman’s fertility, mental wellbeing, self worth and the side affects of medical treatments can be as debilitating as the condition itself.

 

I was diagnosed with endometriosis in my early twenties. I had presented symptoms to my GP for years, symptoms like cramping so bad I couldn’t move, extreme fatigue, stabbing pains, shooting pains, back pain. After hearing ‘everybody gets tired’, ‘food poisoning’, ‘you’re vegetarian’, test results came back clear for other conditions I started to question myself.

 

It took collapsing at work in extreme pain, being taken to hospital and sent home with painkillers and no diagnoses, a follow up appointment and finally a laparoscopy for my diagnoses. After waking up after surgery in a maternity ward and being told if I wanted children I would need to start trying straight away at the age of 21-22 I burst into tears. I remember feeling so alone in a world where I was having to explain over and over what endometriosis was and how it impacted my quality of life.

 

After four laparoscopy’s and years of unsuccessful fertility treatments and IVF I am now starting to work through the prospect of never being a mother. Infertility itself is isolating in so many ways without the pain and isolation of living with endometriosis.

 

The symptoms I have experienced include extreme fatigue, stabbing pains, lower back pain, the shakes, extreme cramping, and bowel pain. The treatment I am on gives me side effects like hot sweats, sleeplessness, mood swings, aching joints & bones.

 

Endometriosis has impacted my relationship with my partner as he feels powerless when he watches me in pain; he will most likely never have children because of my infertility. He struggles with the isolation and grief of infertility as much as I do.

 

I don’t see much of my family as watching my brothers and sisters children get pregnant and have families of their own is too painful at this time. I feel like my family and my husbands family feel powerless. We rarely see family or friends with children anymore.

 

I want women to know they are not alone! I want employers to know women with endometriosis want to work and have a life and want to be treated equally. I want partners of women with endometriosis to know they are loved! I want everybody in Australia to be aware of this debilitating condition.

 

Martia
Victoria

Being recently diagnosed I started to do a little bit of research to find out some information and figure out a plan that was best for me. In doing that I found Endometriosis Australia on Facebook and started to follow them. Then I saw they were looking for volunteers and since I’m always up to helping a good cause, this one was the first one that directly affected me, so there was no question. I was in!

 

The first sign was approx. 3 years ago when I started to feel an odd pain in my pelvic area which escalated to situation where I had instant extreme pain, I was completely debilitated, fell to the floor and couldn’t move from the agony for about 3 hours. After scans and tests it turns out I experienced a cyst popping. 

 

From then on I noticed unusual pains at random times throughout my cycle but I always seemed to come up with an answer to make it sound ok. E.g, must be ovulating, my period must be coming etc. And this pain was so constant that I learnt to live with it without questioning it too much. Earlier this year the pain had reached new levels, my periods became more random than usual (with cycles lasting almost 60 days) so after telling a friend, she put the fear of god in me and made me see a doctor.

 

Throughout all this, I actively thought and said that I was fine, this is just my normal.

 

The initial doctor's appointment lead to weekly appointments for over a month. Blood tests at each appointment (with new findings that surprised me), many scans and finally an appointment with a gyno. After a blur of an appointment with the gyno I left with a dizzy head and a booked in laparoscopy. From thinking that it was my normal I now felt very confused to think that there might be something there that shouldn’t be there.

 

Meanwhile the pain continually was getting worse. I was finding myself low on energy after work, the corner of the couch became my nest as I was constantly curling myself up there dealing with the pain. I would have random burst of sharp pain on top of the constant dull pain that never went away.

 

My laparoscopy proved that I had endometriosis, and my case was between stage 2-3. My recovery was terrible. To add to my terrible recovery it seemed as because I was not ‘trying for kids’ my gynaecologist didn’t seem to give me any more information about my situation. They also had no answers about my pain management, other than I should go on the pill.

 

I felt a little alone.

 

After a weekend where I wasn’t able to stay out and be social because my pain was so bad that it took over my brain and I couldn’t think about anything but the pain. I decided I needed to make a change for myself. I am now exploring ways of dealing with my situation, by changing my diet and trying to be more self-conscious of my body.

 

My symptoms include;

  • Constant period like pain including a dull pain and a pulling/tugging sensation and random bursts of isolated pain.

  • Once my period comes I am almost unable to move off the couch

  • I find myself sometimes getting emotional and crying for no reason (happy and sad things).

 

What I have learnt;

  • I now understand that no case is the same and each body reacts differently. 

  • Its something that effects you both physically and mentally and there is so structure to when and how it strikes.

Rachel
SA

I got my period when I was 10 and it was hell from the beginning. My Mum thought I was lying about the heaviness and the pain to get out of school. I was mortified. I lived in Broken Hill and my GP put me on the pill which was just a band aid. It wasn't until 15 years later when I was working in the outback that I was taken seriously. A wonderful Camp Doctor prescribed medication to manage my pain and told me when I returned to Adelaide that I needed to tell my GP I had endometriosis and needed to be referred to a specialist gynaecologist.

 

My symptoms have included pelvic pain, headaches, bladder discomfort, painful intercourse and general discomfort. I have actively avoided being in relationships for 8 years due to the impact endometriosis has on my life. I have only just started going on dates again. I often have to take time off work due to pain, it also takes me a long time to recover from a bad night of pain.

 

I wish there was more support and information available for women with endometriosis. I know many feel as though they cannot talk about periods and what can go wrong, which I think is crazy. We should be able to talk about something that is such a big part of being a woman and not feel ashamed or judged when we do.

 

I believe appointments and treatment need to be timely and effective. In order to be effective doctors need to hear women and girls when they talk about their symptoms. It is not a one fix fits all,  the pill is not the answer for everything to do with periods. They need to listen and work out what is right for the individual.

 

You probably know many women with endometriosis symptoms and are undiagnosed. So when your friend/partner/girlfriend/daughter/wife talk about issues they are having with their periods it would be great if you could listen, assist them in finding help and understand that period pain is not normal.

Bridie
SA

Since my first period in year 7 my periods had always been awful. I always thought what I was going through was normal, every girl complained about bad cramps so I thought everyone must be going through the same amount of pain as I was! It wasn’t until I found out that I had medium sized cyst on my left ovary in late 2013 that I really thought there may actually be a reason for all this pain. Fast forward to July 2014 when I had a laparoscopic cystectomy to remove the cyst once and for all. After what was supposed to be a short surgery, I came out of theatre 2.5 hours later to hear that I have stage 4 endometriosis.

 

Hearing this at 19 years old wasn’t the best thing I could hear, but I am glad that I went through with the surgery. I can now move forward and try to live a normal life as best I can, considering the circumstances, with an amazing support team around me. Yes, I do have days where it really does get to me, my symptoms get worse and I am scared about what my future holds and my chances of having children. But I try to stay positive about the whole situation and take each day for what it is.

I’m still in the process of learning how to manage my symptoms and knowing when I’ve reached my limit for the day. Cold juice and dry biscuits tend to help if I’m feeling nauseas or fatigued, and jumping into a warm shower and/or using a heat pack helps with any abdominal pain. I try to limit the amount of deep fried/oily food I eat as that seems to aggravate the indigestion! Honestly, emotionally it sometimes helps to just have a little cry and have some alone time on the couch with a good chick flick. At the same time, it’s good to talk about how you’re feeling with someone who truly understands what you are going through!

 

I think my family were all shocked at my diagnosis, mostly by the severity of the endometriosis. Since the surgery, my family and friends have been able to help me manage my symptoms, understanding that there are days where I just don’t have the energy to stomach going out. Since it wasn’t long ago that I had the surgery, we are all still learning to deal with it but maintain a positive attitude about the future. It can be hard on your loved ones as they can’t really do anything to help.

 

I didn’t really know that endometriosis affected that many women! I knew that it existed, but my knowledge on it prior to surgery was limited. I am volunteering to raise awareness for an incurable disease that is so common, yet many women don’t realise they have it.

Renee
Victoria

Excruciating, debilitating, nightmare! That is how I describe this disease.  My story is too horrific to describe briefly but as my surgeon says I'm a soldier!

 

This disease has had a huge impact on my partner , he cannot hold a stable job as he is forever looking after me , I'm stage 4 endo and suffer excruciating paralysing pain , he cooks for me , cleans  runs me to doctors / hospitals I'm sure he had no idea when we met 3yrs ago how hard it would be.  It's not only the physical elements, my pmt is scary and how he puts up with it I don't know, but I literally turn into the devil.  I'm at the stage now they don't know what to do with me , so my amazing patient partner is on this ride with me and I'm so grateful .

I cannot work due to the amount of pain and pain medications I take.  I'm at a point after 9 surgeries nothing is working , I have been told I need to be induced for menopause to get rid of this pain , without a child and only being 34 that's not an option for me so suffering and pain it is . To help manage my pain I have hot baths, some pain relief and a good movie in bed.

I am sharing my story to help raise awareness; you kind of know there is a problem with awareness when your gp says they don't know what to do! I have created a Facebook page to help with awareness and hopefully help some women with information as at times I feel like I know more than some doctors.  You can never have enough information and with this disease information is a big thing that's missing.  Support is very crucial with endo sufferers as we feel alone and misunderstood a lot.

 

My message to others, please please please try to understand it’s a debilitating disease that takes a massive toll on the body and mind, I urge other women to go to a doctor if you get pain that's unusual, don't ignore your body.

Yarna Hempstead
Qld

So it all started years ago before I even knew what was happening, my periods started at age eleven, and my mum freaked out more than me when the first one came. The first few years weren't too bad but it became a nightmare when i reached year 10.  I would be in so much pain with a period at school but I would be too embarrassed to tell anyone, and of course some would say it’s just normal cramps you’re fine, but I would and stay home in bed and not face anyone or anything while my uterus threw a hissy fit. 

 

I was never regular like my friends with but of course you think ‘oh it’s just me just the way my body is’. So I believed it was normal. The years went on and when I was 18 I fell pregnant, it was a shock to the family and all hell broke loose but I powered on with my partner, we built a life together moved into our own place and got all prepared for our bundle of joy that was on its way.   It was the best 9 months for my uterus because instead of throwing a hissy fit it concentrated on growing a baby instead. Then the day came and we welcomed our baby boy.

Time went on and my uterus fell back into its own unreliable routine with hissy fits, with a baby I decided to look for options to help regulate my periods.  The doctors tried me on many pills and other form of contraception including the Implanon implant but it was hell for me, making the pain ten times worse, so out that came. Then I fell pregnant with our second child 14 months after our first, by this time we had moved to the sunshine coast away from our home town of Toowoomba so i was feeling alone being so far from all my family and friends but time went on as it does.

Again my uterus stopped hissy fitting and I was free of pain again for nine months, after the birth of our daughter i again battled with my uterus to regulate and stop the pain that felt like it was killing me from the inside.  I went back to the doctors trying the pill then another go at the implanon implant, only for it to fail again.  The tests and trying new medications seemed to go on forever, then diagnoses of polycystic ovary syndrome.    This resulted in more pills and medications and then the horrible mirena was inserted.  It was the worst thing i ever did, i bled continuously for nearly twelve months before they removed it, they insisted on continuing to use it as well as other medications until one day i screamed in so much pain and threatened to remove it myself.  Finally it was out but then left me with an infection that took months to heal. I then had a uterine ablation and uterus inspection performed.  After only a few months the pain return so they decided on more pills and tubal ligation, which also didn’t help. My first laparoscopy was then performed and a diagnosis of endometriosis finally at the age of 23!  I was scared and relieved all at once, i had an answer but then how were the going to fix it? A second laparoscopy and endometriosis ablation was performed but then I had constant bleeding, becoming anaemic almost to the point of needing blood transfusions.  Then the horrible decision was made to have a hysterectomy, keeping my ovaries at the age of 25 as I was under the impression that i would be cured.

 

All was well until 9 months later when i could feel something was wrong so i started to research, thinking, no it couldn't possibly still be endometriosis.   Scans showed my polycystic ovary syndrome had got worse, so maybe that was the cause but to be safe i went on the gynaecological review list yet again, then finally another laparoscopy to confirm endometriosis has spread like wildfire, adhesions connected organs to abdominal tissues and cysts on my ovaries have popped and causing bleeding. But due to the location of the endometriosis i was closed up and sent home to return for a full surgery that will be done soon. That is my journey in the short version but there will be more to come.

 

Information is great when looked for it, but this condition is still very unknown and not understood.  The Endometriosis Australia Facebook Page and talking with other sufferers helps.  If only other people understood that it's not in our head, the pains are not phantom pains, you may not be able to see it but we constantly battle with our bodies.

When I was 12 I was put on the pill because my periods were extremely heavy and unbearably painful. Throughout late primary school and all of high school I was hospitalised numerous times with suspected appendicitis - yet they never removed my appendix until I was 23.

 

As PCOS runs in the family, it was fairly easy to come to the conclusion that was the underlying cause of all my pain; that was when I was 13. The pain would be so intense, I would often miss out on a week of school / work. Of course when you miss that much time, you have to make up the hours outside of normal operating hours.

 

I was bullied for the last few years of high school – people claiming that I was making the pain up in order to get out of assignments and tests. The bullying got the point where I would hide in classes, and study or catch up on work I had missed; just to avoid the playground trolls. My best friend in high school even turned on me just before Leavers. This day was perhaps the hardest most humiliating day I recall. Publically giving me back (some of) the money I had paid for the holiday house we had hired down south. This was carried out in the main ‘hang out’ area in front of a group of about 25 peers. Who then laughed at me and chanted “No Friends Nay, No Friends Nay…” over and over again. Thankfully there was only 3 days of school following this ordeal and life began to turn around when I met my now fiancée, at a friend’s birthday party not long after.

 

After many appointments with GPs and Gynaecologists to try to understand why the pain was coming and why I had not had a period for 2 years I finally met a Gyno that wanted to perform exploratory surgery to have a better look. That is when she found the cause to more than 15 years of pain, Endometriosis. I had spots of Endo removed in February and then again in April. It was then when the Gyno advised that we would not be able to conceive naturally, due to having completely blocked tubes, with not a drop of dye spilling into my uterus. Since then I have been having regular periods again. That was until July when we found out we were 6 weeks pregnant, only to miscarry a few short weeks later.

 

The plan from here? I have recently completed my qualifications in Personal Training and I will be launching a business later in the year that will specialise in training women wanting to fall pregnant and help with some of the symptoms of PCOS and Endo.

 

The main symptoms I suffer from are chronic fatigue, cramps and heavy periods. My partner and my Dad often have to take days off work, to take me to hospital or care for me at home. It also requires a few phone calls to arrange a dog sitter for my longer stints in hospital. To deal with my symptoms, I find that regular exercise helps to relieve the milder cramps. I have recently started seeing a naturopath and nutritionist who has helped me structure a diet that gives me a good balance of the vitamins and minerals I need to help my body deal better with the cramping and fatigue.

 

Having Endometriosis frequently impacts my ability to do my job.  As an event manager I am required to be across all events and ensure smooth running. When I am experiencing pain that limits me to a fetal position - I have to reschedule meetings and change plans at very short notice.

 

I’ve found that information available to sufferers has become significantly better in the past few months. The awareness raised during this period for non-sufferers has also been great.

 

I have found speaking with fellow sufferers has been great in receiving support from others who understand.

 

If I could give one piece of advice to doctors, it would be for them to listen to patients more closely and to not make us feel like we are 'junkies' for pain meds and one message across to people who don’t understand or suffer from Endometriosis it would be that it isn’t all in our heads. The best way for me to describe Endometriosis in 3 words would be Spasmodic roller-coaster ride. 

Renee
WA
Teena
SA
Rebecca
WA

“Stop crying, you'll just make it worse.” Those were the first words I heard from my GP. Finally she sent me for an ultrasound, where they found a huge cystic tumor on my left ovary. The tumor completely destroyed my ovary and I had to have it removed. I was then told that my pain would be gone. Nope!! Didn't happen.

 

I had three rounds of IVF, and four more surgeries before they finally found Endometriosis, I was 31. I'm unable to have kids and I'm going to start menopause in a few years. I hate that this choice wasn't mine to make and I have to live with that reminder every month.

 

Dr’s need to stop telling us that it's all in our heads! If you can't find an answer you’re not looking hard enough.

 

I have days when I feel so exhausted I can barely lift my cuppa, let alone do anything else! I also have severe pain and cramping. I haven't been able to stay employed; nobody wants to hire someone who has to take a lot of time off work! To help with some of these symptoms I take Tramadol, use heat packs, take hot showers and do yoga.

 

My family thinks I'm just lazy and my husband and I have grown apart, Endo affects even your sex life. With Endo you need to pick your battles, if your having a good day, you make the most of it, because those bad days are hell.

 

I have a gorgeous stepson who is happy to help me when I'm tired or just build a fort and we will climb in and watch movies all day.

 

Three words to describe my experience with Endo are heartbreaking, depressing, and painful.

 

I think the quality of information available to people like myself is poor, we need to talk about it more! If 1 in 10 women have Endo, then why don't I know anyone with it?  The best source of information I’ve found has been from Endo groups, and receiving advice from women who have experience with this disease.

At the age of 26 I was diagnosed with Endometriosis. The pain is unbearable, it feels like labor pain, I also used to lose a lot of blood and thought that was normal until I was told otherwise. I finally started to listen to my mum and went to see a gynaecologist, he diagnosed me with the disease and I've since had 3 operations on it. I still have on going treatment for it as it keeps returning after about 6months to a year after each operation though.

 

The worst symptoms I have to deal with are unbearable pain in my abdomen and legs, weakness and exhaustion.

 

This disease impacts my sex life with my husband because it sometimes causes me to bleed during intercourse. At times I need to take my son to his grandparents place due to the extreme pain I may be in. To help with the pain I take nurofen every 4 hours and take a warm shower and massage where I'm in pain.

 

I haven’t been able to find a lot of information on this disease and all my doctor told me that it was just period pain. I have found the Endometriosis Australia Endo March website to be the most helpful when searching for information. I hope one day that a cure will be found.

 

If there was one thing I could tell my Dr it would be that I want this to be over. For people who don’t suffer from Endometriosis, I want them to understand that they have no idea of the pain we go through. 

Diana
Sydney
Adrienne Le-Guier
NSW

I am almost 20 and every year since I was diagnosed at 16 I have had an operation... My first gynaecologist told me after my first surgery that he had "cured" me. The next year before the next operation he told me that my Endo had been cured and that it was all in my head...I wish I could tell my Dr that it’s not in my head and please help me!!!

 

I am in constant pain, every day; it is exhausting and draining. It makes me so miserable and takes everything out of me. I’ve tried wheat packs and acupuncture to help ease the pain.

 

I think there is still such a long way to go in getting information out to sufferers of Endo. I have joined some Endo support groups on Facebook and have found that to be the most helpful to me but I would still like to find more information and support.

 

I want people who don’t understand what I go through to know that I am not faking it. I did not choose to feel this way.

I was diagnosed via surgery at the age of 13 and had a very long road to acceptance. My teen years were extremely isolating, I felt a lot of pressure in relationships not to mention generally being very ill. Starlight foundation accepted me into their program and granted me a wish at 16. I married an Angel and had my miracle baby boy 9mths ago.

 

Helplessness and misunderstanding is always hard, it has cost me relationships but ultimately led me to the right one because despite a lot of trouble, money and heartache, we got through it together (my husband has since passed away). Our son was born in January this year after 16yrs of hormones, countless surgeries, 12 hellish months of zoladex and lots of wishing on stars!

 

I have to deal with a lot of pain, as well as massive problems with bowel, painful intercourse and long term (6mnths) non stop bleeding.

 

Endo really affects my ability to work but I have an understanding and flexible employer, which makes a huge difference. I have struggled enormously to travel and some days even just get to the office. My pain and bowel symptoms can be very severe. My experience with Endo has been challenging, painful and heart wrenching.

 

I manage by taking things one day and one moment at a time. Becoming pregnant has by no means cured me but it has lessened the significance of my pain. I'm still on hormones and I have a fortnightly cycle but that's life and I just have to deal with it.  I find speaking with others on Facebook, sharing experiences and support helps.

 

I wish there was more awareness of Endo out there but I feel that it is getting better, however it's still frustrating that only a minority of people have the right idea. Doctors included! Although, if I could say one thing to my Dr it would be “thank you”. To others who don’t understand, it would tell them that it’s invisible but horrendous.

Emma Bright WA

I've had painful menstrual cycles for as long as I can remember, but was always told it was normal, something women just went through.  In June of 2014, I underwent surgery to remove some cysts and the surgeon discovered Endometriosis.  My nurse once described Endometriosis like crab grass...it just lives there and grows and grows and grows, despite how much you cut it out.

 

So I felt disgusting and gross on the inside...until I created the Bloomin' Uterus! A fun coping mechanism, and a way of spreading Endometriosis Awareness along the way.  My little graphic is spreading like wildfire! I've set up a gofundme.com page (www.gofundme.com/EndEndo) and every $2 donation gets a button, all money goes straight to the Endometriosis Foundation of America.  And I've started blogging (www.bloominuterus.com) to spread the word about Endo, etc. It's changed my life for the better!  And I must say that knowing NOW that my pain was not normal, even knowing it's not curable: at least there's peace of mind in having a diagnosis; having an answer.

 

I suffer from insane abdominal cramps, heavy bleeding, extended periods (7-9 days), lower back pain, headaches, moodiness, constipation, diarrhoea, painful sex and painful bowel movements.

 

My poor partner has had to watch me suffer in pain, with nothing he can do.  But since my surgery, we are coping much better and it has brought us closer together.

 

Before my June 2014 surgery, I was missing 1-3 days each month from my work.  My previous employer had to threaten disciplinary action and my present employer now has to dock my pay for missed days since I am out of sick time.

 

Presently, I am undergoing Lupron Depot injections and am enduring it well.  I also drink a tea every night to help with any inflammation and detox (lemon juice, honey, and ginger).  I am taking a plethora of vitamins and supplements, and have also altered my diet to exclude red meat, dairy, gluten, caffeine, and as much processed sugar foods as possible.  I drink a LOT more water and am striving to keep my body healthier from the inside out.

 

Information, resources and support are sorely lacking. There are a lot of books out there, but we have to hunt them down.  There are online support groups, but again, we have to hunt them down.  I keep hearing how resources now are far more available than they were even just 10 years ago, so it has improved drastically.  But, still, I’m looking forward to further improvement.

 

I have found that books, blogs, and the experiences of other Endo Sisters to be invaluable!

 

Even though this disease is not fatal, it is life-altering and debilitating.  I wish that there was more focus on finding a cure...

 

What can I say to people who don’t understand my condition?

Ask me questions; please, don't jump to conclusions about my pain (or what you think I am faking as pain...).

 

Three words to describe my experience with Endometriosis? “Lemons into Lemonade!”

Lisa Drayton
USA
Ashleigh Victoria

My mum suffered from Endo and from an early age I could see similar symptoms, however I didn’t do anything about it until I was about 22. When I explained my concerns to my Dr, her response was "its all part of being a woman, you'll have to get over it". As she was the professional I trusted what she said and figured I was being a drama queen.

 

Over the next few years things continued to get worse and my (now) husband was nagging at me to go back to the Dr, I kept telling him that although I knew it wasn't normal to have painful sex or not be able to exercise without falling over with crippling pain, that was just me and there's nothing wrong, life could be worse. But after a while my periods were becoming unbearable and so I finally decided to go to a different Dr and ask for a referral to see Prof Maher who was my mums Gyno. The Dr thought I was overreacting however I still managed to get the referral.


At the age of 27, I finally got to meet with Prof Maher; I'd only been siting with him for no longer than 5mins describing my symptoms and he instantly knew that I had Endo. This was later confirmed during laparoscopy. I can't explain the feeling I had then, part of me was so happy that I had an answer but the other part was so scared because I knew what that meant.


Fast forward 2yrs and 2 laparoscopy’s later, I've also been diagnosed with Adenomyosis.

 

I try not to let this disease define me or rule my life, but it is getting increasingly hard to do so. I’m generally too tired to speak to, spend time with or be intimate with my husband. I’m always having to cancel plans (or sometimes I just don’t bother making them) because I’m too tired or in too much pain to follow through with them.

 

My work is also impacted due to this disease as I can't go to work with codeine in my system, which means I have to take a lot of time off when I'm in pain. Due to the extreme fatigue I also have to take a lot of time off, as sometimes just the thought of getting out of bed is too exhausting to deal with, let alone the reality of getting up and actually going to work.

 

I also suffer from bowel issues, painful intercourse, extreme bloating, pain when exercising and painful, heavy periods.

 

To help with my symptoms I try to follow the endo diet, rest when I can, and when I can’t rest I live off Red Bulls. Living with these symptoms constantly can really affect your emotional state so it’s important to try to stay positive, I always try to remind myself that these are just the cards I’ve been dealt and in reality, life could be a lot worse. I also find that support groups on facebook are a great way to stay connected with women who understand.

 

I find it so frustrating when people who don’t understand what I go through tell me that they know how I feel. Unless you suffer from a chronic illness you have no idea how exhausting, debilitating and frustrating it can be at times.

Bonnie
WA

I am 27 years old and was diagnosed with Endometriosis when I was 22. I have had 2 dermoid cysts, infected gall bladder and stones (I almost died), organs stuck together, PCOS and of course Endometriosis. My first 2 surgeries were for the dermoid cyst. I have had 6 laparoscopies and am currently awaiting another.

 

I have struggled hard with pain, the side affects of the medications, the depression of always being in pain and wanting to end it all and of course trying to understand Endometriosis. My life changed when I was diagnosed but even though I had a diagnosis it was continually said to me that it was all in my head. After my 3rd lap where it was found that my abdomen and bowel were stuck together,  the surgeon turned around and said "at least we know it wasn't in your head". At the moment I am still struggling with pain down my legs, sleeplessness, nausea, constant pain in my stomach, abdomen, back and buttocks and of course the pain attacks. When these pain attacks happen I cannot move, it hurts to breathe and I have to stay still. I also have to deal with constant exhaustion and lot of bloating.

 

My partner has to do all of the house work, shopping and walking of our dog because it is too hard and exhausting for me to do this.

 

Endometriosis causes me to have time off work, constant surgeries and recovery time off work affects the days I come to work. A lot of the time I miss days due to severe pain. I feel terrible because I am unable to come to work to perform my duties. Also it is harder to progress in the company because of the amount of days I have off.

 

I am trying to raise funds to go to Atlanta to investigate the excision surgery and am also seeing a local surgeon who wants to do another lap in a few months because on top of everything I somehow have endo on my Liver. It is invading my body, my mind and my life. There is hope though now, I lost it for a bit but now it is back.

 

To help with my symptoms I take a lot of medications; I take Tramadol, Lyrica and Pramin for the pain and nausea. I also have Duloextine for pain and also depression. Heat packs, hot water bottle and patches are life savers, these help me immensely with my pain attacks. I have tried a lot of different medications that did not help and had a lot of side affects. Surgery is another way to manage my endo I have had 6 Laps waiting for my 7th.

 

When I was first diagnosed with endo I had no idea what it even was, I was given a pamphlet to read and that was that. It is hard to find specific information or advice. I think there is a lot of information on the web, I just don't think people are informed enough. I have found Endo support Perth, this has been a tremendous help for me. I have found Endo Australia super helpful and informative with correct information also.

 

I would still like to find more information and support, I feel like when you are first diagnosed nobody tells you anything, so you feel very alone. We need more information and support out there in the world. We need to know if we can find a way to manage it.

 

I wish Dr’s new about excision surgery, I also wish that they would not tell people that it is all in their head. It’s a horrible thing to say and to feel.

 

To anyone reading this who has or suspects they have endo, stay strong, get help. Ask for second and third opinions if your not sure and always investigate meds and side affects and don't just agree if you don't. Also join a support group!

Carmen Donnachy
Tas

At the age of 13, I was diagnosed with Endo. I struggled through school; I was barely ever there. It was and still is hard enough for me to get my head around living in constant pain, fatigue and catching everything that goes around, let alone getting understanding from those around you.

 

The very first Gynaecologist that I saw (who happened to be a lady), sent me on my way saying at age 13 there's no way it could be anything to do with her. When they finally operated I had stage IV Endo. I wish Dr’s would take people more seriously when they say they are in agony and can't cope, no matter their age.  Just because I look normal and healthy, doesn’t mean I am. Inside it feels like someone is stabbing me with a knife and draining me of all my energy.

 

I’ve already had 6 laparoscopies, am awaiting another one and am on hormonal treatments. The only reason I believe it has grown back now is because I stopped taking the pill. I was taking the pill for a few years without getting a period and that seemed to get it under control. So after this next lot of surgery I'll reluctantly be going back on the pill until I'm ready to have children.

 

I have constant aching pain, as well as a sudden severe stabbing pain, pain with coughing, sneezing, stretching, bracing and intercourse. I also suffer from balloon like bloating, heavy, irregular & long lasting periods, pain when I have a full bladder, pain when emptying my bladder & bowel, bowel symptoms, severe fatigue and a low immune system.  Living with this did have a big impact on my long-term relationship and I know that my family and friends find it hard to deal with sometimes.

 

Someone said something to me recently stating that I never drink. It's because I can't; I already suffer enough with pain and fatigue, why make my body more run down? It's frustrating but I just can't put myself through it, never have been able to drink and stay up late. I have to do what my body allows me to and look after it as best I can.  I'm feel bad that sometimes I feel like a crap friend and can't do as much as I'd like to and have to cancel plans due to pain.

 

Having Endo also impacts greatly on my ability to work as I regularly need to take days off, due to this I need to work part time. It worries me that I'll never be able to reach my goals of saving, buying a house etc. 

 

Endometriosis is not something regularly spoken about, a lot of people who I've spoken to over the years don't know what it is.  There's information on the Internet if you Google it, but as far as pamphlets in doctors surgeries etc. go it's lacking. So I do my own research on it all and am finding what works best for me to deal with pain etc.

Shannon Rea
Qld

I have suffered from bad symptoms since the age of 14, Doctors said I just was one of those people that got bad periods. At age of 18 things got worse and I was admitted to hospital to have morphine to take away the pain. My mum and I decided to do some research and we came across Endometriosis.

 

We paid to see a gynaecologist to ask him, he said no I'm to young to have it and the diagnostic procedure would be a waste. We paid him any way to do it, as this was our last hope; I had suffered for too long. A couple of months later, I had the laparoscopy and when I woke up my Doctor looked at me and I said do I have Endometriosis, level 3 with level 4 being the worse it can be.

 

I suffer from pelvic pain, back pain, nausea, headaches and severe tiredness. Since being diagnosed I have had 3 surgeries. Pain relief does not help. I manage my pain through self-positivity.  I may never be able to have children with my partner, but I believe going through this it has made us stronger.  Working is hard, I try not to let my Endo affect it but due to my fatigue I can only work 4 days a week.

 

I think information available is limited, there really needs to be more info especially for younger girls. I have found some support groups, which help and also do my own research on the disease.

 

I think some Doctors also need to become more informed on Endometriosis so they can help people like me. Endo is real, its painful and it’s a disease. 1 out of every 10 women suffer from this and more people need to me made aware of it. 

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