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Living With Endo

Endometriosis is an often painful disorder in which tissue like the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. It sometimes causes severe pain, is often misdiagnosed and can come with a host of other symptoms and effects, like fertility issues. To put it lightly, it’s not a nice experience for those who have it. 

Thankfully, there are ways to help treat Endometriosis and a lot of great support groups for those going through the same symptoms. When it comes to our periods and our bodies in general, there’s real value in sharing personal experiences – which is why we reached out to Georgia, one of our customers, to hear about her personal journey with Endo.  

Hey Georgia – tell us a bit about you. 

Hi, my name is Georgia I live on the Sunshine Coast Qld and I’m currently studying social work, working as a youth worker and an endometriosis advocate at @theendojournal.  

When did you first experience symptoms of endometriosis 

I believe I first started experiencing symptoms of endometriosis at the age of 12 when I first got my period. I was constantly bloated, I had awful period pain, back pain, leg pain, headaches and fatigue. 

Did you get diagnosed straight away?  

No, I was told period pain was normal and apart of being a ‘woman’. I was diagnosed at the age of 16 via laparoscopy surgery when I had a large ovarian cyst. 

Did you know anyone with similar symptoms?  

No, I didn’t. Throughout my adolescent years I always knew I was different as I experienced my period differently to my friends. I would constantly need a day or two off school from being in pain and exhaustion.  

Who did you turn to for advice or help? 

I turned to friends, family and doctors. They all had similar responses “its normal to have painful periods, you just take paracetamol and move on”. I had doctors telling me I had such bad back pain from my posture... and that I was too young to have anything wrong with me.  

Is there an endo community?  

There is! I mostly connect with the endo community via Instagram. I’ve had the privilege to connect with some amazing people through it which I’m so grateful for. I feel like we all learn from each other and inspire each other to speak about our experiences in the hope to help others! 

How often and severe is the pain?  

I’m in pain most days. Severe not so much anymore as I have a fantastic group of professionals working with me. I know I will never be completely pain-free but to have it managed so I can work, attend university and live a somewhat normal life is enough for me. In 2019 I had my most recent laparoscopy surgery which then followed with reoccurring ovarian cysts. I spent a lot of time in bed and isolated… this is where I appreciate the online endo community so much! Easily accessible support for bedridden times. I never take minimal pain days for granted!  

What coping methods work best for you? 

Over the years I’ve learnt that I need a multidisciplinary approach. I connect with friends, family, the endo community online, utilise western medicine and alternative therapies. I see an excision gynaecologist in Brisbane, pelvic physiotherapy, acupuncture, osteopath, dietician, naturopath, massage therapist, psychologist and a medicinal cannabis doctor. This has allowed me to get the best possible care for my endometriosis.  

We’ve heard many people go undiagnosed for years – why do you think that is?  

I believe it’s because of a few reasons. Firstly, because periods are still viewed as a ‘taboo’ topic and often seen as a disgusting thing that should be kept private. Secondly, because so often women are dismissed by professionals as hysterical and don’t have their pain believed. (I would like to acknowledge that not everyone who experiences periods identify as a woman). Thirdly because people still believe that painful periods are normal, so they don’t often reach out for help because they are told what they are experiencing is normal. If you’re having to take time off work, school, university, exercise or social events because of your period something is not right. You should be able to live a normal life with your period.  

What do you wish more people knew about endo?  

That it isn’t just a bad period. It is a whole-body inflammation condition that needs intervention. That not all gynaecologists know how to correctly treat endometriosis. That there is no cure and it can severely damage organs such as the kidneys, bladder and bowel. It is also severely underfunded and under-recognised. It affects 10% of the population, just as common or if not more common than diabetes. Yet, minimal people actually know what it is and how debilitating it is. 

I highly recommend the following resources : 

Qendo

Nancy's Nook Endo Facebook Group

Center For Endo

 

If you are experiencing symptoms similar to Georgia or want to know more about endometriosis, please contact your professional healthcare practitioner or doctor 

Unfortunately, endo takes both a physical and emotional toll on people and can have varying effects on people’s relationships and their careers.  

When to see your doctor: 

The symptoms of endo vary from person to person, with some experiencing excruciating period pain, to others experiencing none. It would be best to go check in with your doctor if you do suffer from any of the symptoms listed below. 

  • Pain – If you’re too uncomfortable to complete your day-to-day activities. 
  • Bleeding – Heavy, irregular or breakthrough bleeds are all potential symptoms. 
  • Bladder and bowel – Changes to your usual bladder or bowel movements. 
  • Other – Bloating, tiredness or moodiness especially around the time of your periods. 

 

 

 

1 comment

  • So pleased to see raised awareness and support now. I experienced extreme back and abdominal pain with migraines etc . Fainting on buses and collapsing at work with 7 days curled into a ball in bed = told “It’s just normal for some.” From 13-40 yrs all the same. At 40 yrs I passed out at in agony at home with my 14 yr old daughter. Ambulance…hospital emergency…appendicitis ?…GP…Gynocologist. Laparoscopy showed a burst endo ‘chocolate cyst’ the size of an orange on ovary. Then…too acute to do surgery so 3 months of hormone treatment. Next the specialist recommended micro-surgery to remove cyst and most of ovary. Problem: my daughter at 13 had an operation for an assumed ovarian cyst which would be ‘shelled’ off which instead was found during surgery to be dysgerminoma ovarian cancer which needed the removal of the ovary and extensive surgery at 13 yrs. One year later just before 14th birthday the same pains resulted in an emergency surgery to remove the other ovary which gave same pains. It was assumed to be another cancer as the type was often bilateral. Fortunately it was an hemhorrage but she underwent the full surgery once again and has had a few operations since for more suspected problems. (She now has a similar condition to endo except the endo lining within the uterus). This surgery was scheduled only days after my surgery, so I postponed mine until after my daughter recuperated. I just felt it worth writing to let others know that I have never had any further problems with endometriosis. I was fortunate that it hadn’t spread throughout the abdomen further, although they told me at the time they were not able to remove all of it. So relief from this pain is possible with a little luck. Also, my daughter has 4 miracle children now. Doctors cannot understand how. These things happened in 1989-1990. Little information or support was available for either conditions. My daughter’s case was rare. It’s great that there is much more knowledge for these conditions now and less taboos and embarrassment. I hope this gives hope to teens and older who are suffering from endometriosis.

    Susan

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