What was the beginning of your endometriosis journey like before you knew what was happening?
It was horrible, it was intense and constant pain, it was painful sex, it was periods that would flood and go on forever, it was insane pain during ovulation, it was brain fog, fatigue and insomnia. The irritability was destroying my relationship, I felt like I was going insane because doctors and hospitals wouldn’t believe me, I thought I was making the pain up.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed at 27 after having 2 children and many hospital visits with intense pain when I finally got a referral to the gynaecologist. I waited over 6 months for an appointment and finally after a few appointments they decided to do the laparoscopy surgery as investigation and found I had stage 3 endometriosis- it was invading my uterus, ovaries, bladder, bowels and the pouch of Douglas.
What did it feel like to finally have a name for what you were experiencing?
It felt like relief to have a name for what was causing so much suffering but when I was told that there is no cure just symptom treatment I was devastated.
How does endometriosis show up in your body and daily life?
Sharp and dull pain in the abdomen, intense fatigue and insomnia, GI issues such as constipation and diarrhoea, bloating and gas pain, brain fog and anxiety were my daily life- my symptoms have lessened over time by modifying diet, exercise, stress management techniques and being on dual therapy of mirena and the pill.
How would you describe the pain or physical challenges of endometriosis?
It was incredibly debilitating, especially parenting two young children at the time and the constant pain and exhaustion.
Do you have “good days,” and if so, what do they look like?
I have good days now but at the time when it was the worst- it was relentless and basic tasks were impossible such hanging out clothes with the stretching up was hard and I was in pain all the time.
it has taken a lot of time and self management to have good days more consistently now
How has endometriosis affected your education, work, routines, or ability to make plans?
It affected every aspect of life, it was hard to work with the bleeding and constant pain, stress makes the symptoms worse but I was constantly stressed- I didn’t want to socialise or make plans because I didn’t want to disappoint people when I was not feeling up to going out.
Has endometriosis had an impact on your finances or access to care?
Accessing care in rural nsw is a lengthy process- it is very difficult to get into a gynaecologist and the waiting time is very long- it is also extremely expensive to see the gynaecologist and extremely expensive for the surgeries as even private hospitals were lengthy waiting lists.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
The healthcare system is failing women with endometriosis, doctors don’t listen, hospitals just give you pain meds that don’t do anything for the pain and the waiting times to see specialists who also dismiss the severity of the symptoms and make you feel like you are being dramatic is adding to the emotional trauma of having endometriosis.
I had three surgeries to burn off the lesions, after each I’d go back in even more pain but told that I shouldn’t be in that much pain so I was referred to a GI specialist who did surgery and found nothing wrong, went back to the gynaecologist who finally agreed to do another surgery to find the lesions had returned and even more intense. This happened a third time and then I was told that it could be psychological and that it might be an idea to see a psychologist.
I enquired about the dual therapy of the mirena and the pill to, the gynaecologist was reluctant and wanted to put me in medical menopause at 31 because that would fix it.
I asked to try the dual therapy and he finally agreed- it helped a bit but when I went back for a check up he gave me the prescription for the medication to put me in to medical menopause.
I refused to fill it and I wanted to try alternative options before going down that route.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I have had three surgeries and each was horrible and the recovery was horrible, I have the mirena and that helped with the bleeding but the pain was intense, I would go back to the doctor and specialist and they would say that I shouldn’t be in this much pain and then refer me to other specialists and psychologist because it could be psychological.
I was on the strongest anti inflammatory medication which helped with the pain a bit but I was then suffering from stomach ulcers from the anti inflammatory medication.
I had to beg for the dual therapy of mirena and pill after I researched that people had found some relief.
The gynaecologist was reluctant and wanted to put me in to medical menopause as he said that will fix it.
I then self explored alternative and natural remedies- I did an anti inflammatory diet, I eliminated gluten, dairy, processed foods and alcohol.
I exercised, used essential oils, did yoga and meditation, practiced relaxation and stress management techniques.
I took myself off the anti inflammatory medication and I am still on the mirena and pill continuously and these strategies have made a huge impact in my overall health, mood and pain management.
It has been going well for approximately 5 years now but I am starting to experience perimenopause symptoms and doctors and specialists are now saying no you are too young and dismissing me- so again I’m fighting a system which doesn’t listen to women.
What has it been like to live with a condition that often isn’t visible to others?
It makes you feel like you are insane and being dramatic because no one can see the injury and they don’t believe your pain, I haven’t been believed so I am extremely stoic now, I have an extremely high pain level because it’s hard to describe that your pain is sitting at a 9 when you appear to be functioning normally- this was my normal, so if it was a 10 I’d present to hospital for all blood tests to come back normal so they give you the strongest pain killers and say you are being dramatic when you say the pain is still the same.
Have there been times when you felt dismissed or not believed about what you were going through?
All the time- every interaction with doctors and specialists made me feel like it must be in my head
What has the emotional or mental side of living with endometriosis been like for you?
It’s so hard to live in a body that is failing you every day, it has an impact on your relationships because they can’t see the pain and it’s hard to describe the living hell that is your life and they want to help but there is nothing they can do
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
Like above- it makes you hate your body and yourself, you question if maybe you are being dramatic, you don’t want to be a burden so you suck it up and keep soldiering on but in the end you are so resentful of your own body and you no longer recognise yourself.
How has endometriosis affected your family relationships, friendships, or dating life?
It impacts all relationships because you become boring, no longer spontaneous, you become anxious and depressed and you don’t want to keep explaining why you are feeling so tired, sore and depressed so you distance yourself from friends, family because you are unable to participate and you feel guilty for it
Has endometriosis had an impact on intimacy or your sexual life?
It has deeply affected my relationship as sex hurts, and then you develop anxiety about being intimate, it absolutely destroys sexual relationships and makes you feel guilty for not being able to be intimate regularly.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
I wasn’t diagnosed until after my two children and fortunately it didn’t affect my fertility
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Taking the time to look after myself and allowing myself to feel the emotions and rest if needed has helped
Do you feel supported in your journey? Who or what has helped you most?
Not really, I have a cousin who has been experiencing this too so she is my biggest supporter and me hers.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Only my cousin really and that’s very supportive
How has your relationship with endometriosis changed over time?
I can see that it’s not a personal fault it is a condition that needs more attention.
I am grateful that there is more awareness about endometriosis now, there are support groups and hopefully doctors will be trained in identifying and treating it early without making a woman feel bad
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I think the recent awareness is helping the medical community to prioritise the diagnosis of endometriosis and exploring treatments to help women live healthier
How do you feel endometriosis is represented in society or the media? What would you like to see change?
It’s starting to change, it’s starting to be more information available, it’s talked about more and it normalises that painful periods are not ok and it’s ok to ask for help
What would you like more people to understand about endometriosis?
How debilitating it is, that it’s not just a painful period it’s life changing and life altering and it’s chronic
When you think about the future, what fears, concerns, or hopes do you have?
I fear that my daughter will experience this but I’m also grateful that I have experienced it so that she doesn’t have to suffer through misdiagnosis as I will be able to advocate for her
Is there anything else you’d like to share?
I have hope that more research, more awareness and more knowledge will help women not have to suffer in silence