Last year when I was diagnosed with Polycystic Ovaries, I found that looking online for support gave me so much more knowledge, compassion and understanding than any visit to the doctor had. I read about people who had similar experiences, found diet and exercise tips and was given advice on how to best manage my symptoms. Finding this online community was great, but it also made me wonder why I had to actively hunt for this information. Surely I should have been given the advice and help as soon as I was diagnosed? The reality was that I had been palmed off three different times with three different contraceptive pills, none of them without horrific side effects that resulted in me going back to the doctor and asking for more help, to ultimately be told to come back if I ever decided to have children.
The more I looked into this, the more I realised a lot of medical diagnosis’s that were deemed ‘women’s issues’ had this same level of aftercare. Eventually, and I mean eventually, you’d get a diagnosis and then that is where it ended. There wasn’t a lot of understanding of them from a medical point of view and so really it was left to the sufferers to band together and try help each other out. ‘You have that? Me too, great – how do you try make it better?’
These conversations were great, but I couldn’t help but thinking more should be done to help these women who hadn’t got to the point of going to the doctor yet. Someone needed to tell them that their pains weren’t normal, that it was okay to listen to your body and know something wasn’t right.
Whilst I had these thoughts, there were people out there shouting them from the rooftops and aiming to bring about change. That’s how I first found out about Claudia Wright. Claudia is 28 and lives in Perth with her boyfriend Michael and their staffy pup Cheech. She has a degree in Mass Communications and worked in PR and Journalism. She is the eldest of three sisters. She has endometriosis, as does one of her siblings.
I stumbled across Claudia’s Instagram page – @my_myself_and_endometriosis – that has built a community that raises awareness, that educates, that helps. She has taken the stigma of talking about endometriosis, scrunched it into a ball and thrown it away. She’s made it so it is time to talk, time to be heard and time for other’s to make sure no one has to endure the horrific process she had to in order to finally be diagnosed correctly.
Claudia is an ‘endo warrior’, but to me she is a warrior in so many more ways. She’s a warrior for women, for their health, their opinions and their bodies to be taken seriously. She’s one hell of a person to just stumble across online, but I am so glad I did.
In your own words, describe your journey to your diagnosis of endometriosis.
My journey is like the millions of other endo warriors worldwide, suffering for years undiagnosed while having no idea my body was destroying itself from the inside out.
My symptoms started at age 11, months before my period had even began. I was diagnosed with Crohn’s disease the same year, but it was at age 15 that my symptoms truly reared their ugly heads. On top of severe cramping, heavy and irregular periods, pelvic and abdominal pain, extreme bloating, nausea, diarrhoea and blood in my stool, I began experiencing severe migraines and upper body pain including in my mouth, chest, armpit, neck and upper back. These pains were accompanied by extreme fatigue, shortness of breath and feeling faint.
After years of having every test under the sun like X-rays, Ultrasounds, MRIs, CTs, ECGs and Lumbar punctures, seeing an array of specialists, having cortisone injected into my neck and trying natural routes as well, I eventually had a nerve stimulator implanted in my buttocks with electrodes placed up my spine and over my occipital nerve in my skull to try and combat the nerve signals sending pain. After years of being inserted, I was still experiencing all my symptoms and they were getting worse.
At 23, my gastrointestinal symptoms came back in full force and I was convinced I was in an 18-month chronic flare of Crohn’s disease. I had a chest X-ray for long-term shortness of breath during this flare. For the years following, I kept presenting as if in a Crohn’s flare but all testing, including colonoscopy, would come back clear.
Eventually in 2017 I was told I may never have had the disease to begin with and had been misdiagnosed for the majority of my life. The doctors did not give me any other options as to why I would present with these symptoms if I did not have Crohn’s, so I started to research myself.
That’s when I found endometriosis. I essentially diagnosed myself and took my findings to my GP. I said I wasn’t leaving the appointment without a referral to a gynaecologist and a pelvic ultrasound.
I went and they found stage 4 disease. The doctor was not as skilled in endometriosis surgery as they should be and so in the months following my health rapidly declined. I lost over 20kg in 4 months, vomited 20+ times day, was bleeding constantly from my rectum and dependent on opioids and anti nausea to survive. My chest pain and shortness of breath began to increase. I was in fear for my life.
That’s when I really started researching about this disease and found Nancys Nook on Facebook. From there I read reviews of doctors worldwide and spoke with many women about the importance of expert excision when it comes to this disease. At this point I was sure this disease was going to kill me, and if it didn’t, I would have committed suicide.
My family saw how bad the situation was getting and we decided together that flying to Dr. Sinervo at the Centre For Endometriosis Care in Atlanta was my answer. He is, in my opinion, the best endometriosis excision surgeon in the world. I flew to America in October 2018 and had both excision surgery and a VATS (visually assisted thoracic surgery) to check for endometriosis in my chest and lungs. Thankfully nothing was found in my thoracic cavity, but my abdominal and pelvic regions were covered, including all over my bowel. Dr Sinervo expertly removed all disease and told me I have less than a 10% chance of the disease ever returning.
I am now 7 months post op and still recovering but there is now light at the end of the tunnel.
Wow, what an incredibly long and tough journey you have been through to get to where you are now! What were your feelings when you were first diagnosed and what are they now?
I was devastated to receive the ‘life sentence’ of a chronic illness, relieved to have a true diagnosis and also a little cocky in the “I told you do department” because for 16 years nobody was listening to me or believed my pain was real. I was also proud of myself for not giving up and fighting for myself when everyone kept telling me I was fine.
Now, I am sad about having an incurable disease but I am so hopeful for my future as I believe Dr Sinervo truly has changed my life. Now I view this disease as a serious health issue that needs to be addressed worldwide and am using my Instagram platform to help other sufferers.
It seems outrageous that your condition was undiagnosed and misdiagnosed for so long, resulting in unnecessary treatments and pain. Why do you think endometriosis is so often misdiagnosed and endometriosis sufferers are forced to fight for a long time to be diagnosed properly?
A number of reasons, from a lack of knowledge and education amongst both medical professionals and the wider public to the normalisation of period pain – periods that stop you from your day to day life are NOT normal. Endometriosis can only be diagnosed via surgery and is rarely able to be found on scans or imaging. Endometriosis also attacks multiple organs and bodily systems at once and mimics many other conditions, like Crohn’s disease for example.
Also, it’s a ‘women’s issue’. If the majority of sufferers of endometriosis were men, we’d have had a cure decades ago. Or at the very least, the right surgical technique to adequately remove disease would be taught in medical school…
It sounds like the symptoms can be really extreme and debilitating. Even though you have had surgery, how does endometriosis effect your daily life?
It affects every single aspect of my life, especially this past year. If it’s a bad day it can mean I am completely bedridden and unable to even shower myself. On a good day it still affects me as physically because even then can’t keep up with healthy humans. I’m not given the same amount of spoons to start with (look up spoon theory if you don’t know what I mean haha).
I have to think about endometriosis when I shower because I mostly have to be seated, when and what I eat as I have triggers and when I sleep – I am so fatigued and need to nap almost daily. It affects my social life, my sex life, my mental state and my emotional state.It affects me financially as I have been unable to work in the last year because of these two major surgeries and I have a huge amount of medical debt from my trip to the CEC in Atlanta.
It essentially affects my every move. I have to wear clothes that won’t hurt my stomach, sometimes have to choose between washing my hair and doing the grocery shopping because I can’t do both. I have to plan things around my cycle. My friends know not to ask me to anything during my period. My boyfriend and I can’t have spontaneous sex because its too painful for me at certain points in my cycle.
It truly affects everything. This isn’t just a whole body disease, it’s a whole life disease.
For a disease that has such big implications on so many areas of someone’s life, you would think that there would be so much more education and understanding about it. Have you found anything that has helped you control or manage your endometriosis?
For me (and everyone is different and the boss of their own care), excision is how I have managed it. Expert excision is the gold standard of care when it comes to endometriosis and is the only thing proven to remove disease.
On flare days, painkillers if needed, heat packs and a lot of self love and care. I try to go for a walk every day, even if I don’t feel like it. I also use CBD bath oil, topical rub and I smoke marijuana.
One of your points was lack of knowledge in the wider public and as someone who until very recently had only ever heard the name of the condition and knew little else, I agree with you. What symptoms do you think are key to look out for?
Pain that stops you from performing day to day activities on or around your period, pain on or around ovulation, pain during or after sex, pain with urinating, pain or blood with bowel movements, fatigue, pain in pelvic region, lower back or legs, heavy or irregular bleeding and extreme bloating. Sometimes infertility may be the indicator. Some women have no pain at all and only find out they have endometriosis because they cannot fall pregnant.
What advice would you give someone who has just been diagnosed with endometriosis?
Firstly I would tell them they are not alone. And there is an incredible online community of endometriosis warriors who are always willing to help an support. Then I would say:
• Get to know this disease inside and out. It’s complex. Having a complete understanding and knowledge of endo will make you feel more confident in your approach to doctors. Nancy’s Nook and Endopaedia.info are your new best friends. Trust me.
• Start diarising your symptoms. Every single day. Write it all down so it’s there in front of you. It will be confronting, but having it written down will show you either getting better or worse. Take this diary as evidence to doc appts.
• Be open about your struggles. Join support groups, follow Instagram accounts, post questions, communicate with fellow sufferers. Use this info to make informed choices about EXCISION surgeons in your area.
• Work out what foods trigger your symptoms and avoid. The Endometriosis Diet app is a great way to start.
• Take care of yourself. In every sense. Protect your energy. Look after your physical body. Do things that make you feel good, or nice, or bring you calm and peace.
• See a pelvic physiotherapist. Endo often comes alongside pelvic floor dysfunction which can cause a number of issues like bowel and bladder problems, painful sex etc.
I found out about you through social media and I am so glad I did! You’re really vocal online about the condition and your experience with it. Why do you think it is important for women to be so open with things like this?
A number of reasons:
1 in 10 women are diagnosed with endometriosis. That’s 10% of the female population. With stats like that, it’s no wonder society and the medical community have normalised this pain. There are nearly 200 million endo warriors worldwide. That is a lot of lost potential, lost productivity, physical and mental pain, broken families, failed relationships and shattered dreams. That is a lot of devastation for something so “normal”.
I just can’t keep quiet about it. The standard of care worldwide for this disease is insufficient and inadequate. I just want others to make INFORMED choices about their health care and if I can be the one to help with that info, I am truly honoured. I’m loud about it because I care so deeply about it. Helping others with this disease is my true passion in life.
It is important to speak out about things like this to show others they are not alone, to provide hope to those who feel like this disease is eating them alive, to Help others have easily accessible information about this condition and to raise awareness of these conditions which will hopefully lead to more education, research and funding.
I don’t wan’t the younger generation to go through what I had to. If I can use my voice and my Instagram to help others get the treatment they deserve, I am one happy woman.
You talk about using your voice loudly to help others and I can vouch that what you do really does help raise awareness, but I can imagine at times it is exhausting having to fight so hard to be heard when you speak about this. Are there ever times where your diagnosis really upsets you and how you deal with those times?
Absolutely. This is a chronic illness and sometimes it is a hard pill to swallow knowing you will be dealing with this for life. On those days I focus on the positives – that I was able to have expert excision with one of the world’s best and even though recovery is very slow and painful, slow progress is still progress and I am thankful I am even here today. There were many times I thought this disease was going to kill me. Yet here I am, still fighting. So when I’m feeling down about it I really have to keep reminding myself that the worst is behind me. I keep comparing myself to where I was this time last year and the difference is astounding.
Fertility is something women don’t often talk about or feel comfortable talking about. In your opinion, why do you think there is a lack of discussion on fertility, infertility and fertility struggles?
Once again, I think this is because “women’s issues” (they’re not, they’re all of societies) have become secondary and not considered as important as say, erectile dysfunction. I mean, look at whats happening in America right now in regards to abortion.
I also think the topic is incredibly sensitive and for the women struggling, I imagine very hard to open up about.
That’s why I love social media because more and more women are speaking out about their struggles and it is truly helping others and opening the conversation wider. I really hope that the discussion widens in the near future and wont be considered “taboo”.
I am really hopeful that this interview will help endometriosis sufferers realise that they aren’t alone and also might push someone out there experiencing what you did to go to the doctor with this information. If you could sum up your outlook on life in one statement, what would it be?
Hopeful for the future.