Awareness without borders
Awareness doesn’t just mean showing numbers and statistics. By now almost everyone in the endometriosis community is aware of the many aspects and problems the disease causes. The difficulties lie essentially in the medical systems and in the political decisions taken by each state. But what about people outside the endometriosis community? What about the people who are just now finding out that they have something called endometriosis? They are just starting on the bumpy road that lies ahead, not knowing the many challenges they will face.
For them, people like Aimee exist. She is one of the vocal and passionate advocates of endometriosis. Through her Facebook page Endo with Aimee she is sharing her story and trying to reach as many people as she can to inform and educate them. Aimee, we salute you and we thank you for putting your faith in us.
1. Aimee, off the top of your head, how many alternative therapies did you try, where did you try to find the answers for your pain?
I don’t think I could actually count the amount of alternative therapies I tried. Supplements, probiotics, patches, creams/balms, pharmaceuticals. The only thing that ever truly helped relieve symptoms effectively is good quality medicinal cannabis flower & oil. I sought answers from multiple doctors, I was hospitalized countless times but was always told my scans are clear and they can’t see anything wrong.
2. How is endometriosis regarded in Ireland, by the medical system, by the people who suffer from it?
People in Ireland who suffer from Endometriosis are extremely frustrated and their lives are completely destroyed by how our condition is diagnosed and managed. We don’t have any guidelines implemented at GP level to indicate the possibility of endometriosis and to encourage gynae referral. I was suffering 10 years before my ‘coincidental’ diagnosis, I never had a Gynae referral. We face excruciating shame and stigma when it comes to accessing adequate pain relief. We are labelled dramatic or addicts. Many medical professionals have no idea of the implications of endo on someone’s life and often we are subjected to dismissal. We don’t have a multidisciplinary setting and a first consultation with a gynecologist can take up to 3 years or more for an appointment.
3. You have been an advocate of the disease for a long time, you have your blog “Endo with Aimee”. Can you tell us a little bit about your initiatives and how you are trying to raise awareness?
I was diagnosed with endometriosis in 2013 and told I would be referred to a specialist. I got that appointment in 2016. It was only at the app in 2016 when she said “you have a chronic condition which you are on no treatment for, that’s like having asthma and not being on inhalers. I then discovered the Endo Association of Ireland in 2019 and was blown away to realize I wasn’t alone in this. Immediately I set up my instagram blog and started sharing my journey.
The main goal is to prevent anyone from feeling as alone and isolated as I felt. It’s very difficult to navigate the shame we feel for all the things we cannot do. Our families love us, but they don’t understand. Our friends lose patience, and it takes a massive toll on our mental health and I really wanted to highlight this aspect. My initiative is to get people talking about endo so that society as a whole can start to treat people better because they will better understand the struggles we face. In my view it’s a societal issue and I use my platform to help shift the perspective of ‘it’s just a bad period’.
I have created a petition which has almost 9000 signatures https://www.change.org/specialist-endometriosis-center-of-care-Ireland/ . A huge part of advocacy is ensuring we are sharing the correct information so I choose my sources carefully.
4. Let’s go back in time, two years ago. Maybe people who don’t know anything about the disease find it hard to believe that it can literally ruin your life. Tell us a little about the ways endometriosis affected you. What are all the things you lost because of it?
In July 2018 I had my third laparoscopy and expected to be out of work for a couple of weeks and then feeling much better and able to get back and be a reliable employee. I was due to travel to India for a work trip in September, so I was hopeful I’d be a functioning human being by then. Sadly, as the weeks went on, the pain got worse, I went downhill rapidly, and I was completely bed bound. By October, my employer needed to replace me, and I lost my dream job. In turn, I couldn’t afford to pay rent and had to move two hours away from my doctor and family for more affordable rent. My post-operative appointment came in March 2019, 8 months after this horrendous surgery and they told me I couldn’t have a referral to a clinic abroad because, and I quote “they would do the same thing over there that we have already done, you’ve had all the hormonal and surgical treatment we can give you so all you can do now is wait for an outpatient appointment with the pain management clinic”. I got referred to that pain clinic in 2016 and got my first appointment in 2020 which scheduled a procedure for Feb 2021.
After losing my job, my home, any self-confidence I ever had, I tried accessing mental health support. I waited 12 months in a suicidal state and when I saw them, they said they couldn’t see me as long as I use cannabis. My ability to drive was gone most of the time because of the horrific side effects of the opioids I was on. One day I felt a little better and went for a drive to see my parents. I was stopped in a routine Gardai checkpoint which I should have sailed through, and instead I was stigmatized because of a cannabis incident 10 years prior. I was arrested and refused my prescribed medication resulting in a tragic flare in front of many male Gardai who thought I was being dramatic because they had arrested me. They had no sanitary products and I breakthrough bled through the shorts I was wearing.
Every single aspect of my life has been deeply affected by endometriosis. I have lost trust in doctors, family members, the healthcare system, the justice system, the Gardai and even myself. I was told for so long it was all in my head I began to internalize that and second guess myself. Am I really feeling ‘that’ bad? Even though I was losing consciousness sometimes when the cramps and contractions would get so severe. I would be screaming in agony and suddenly, I would black out. It was like barbed wire was wrapped around my organs and I was being stabbed in the vagina with a hot poker.
5. How is your life now, two years after surgery?
Life now is much more manageable. I have multiple chronic illnesses so most days are a guessing game of what might be causing which symptom. The biggest difference between now and then is now I have ‘some’ good days. Prior to surgery in Romania every day was so unbelievably dark and painful. Now I know that good days are possible and occurring, my mental space is so much better. The validation alone that the Dr. Mitroi’s team provided me with was incredible. To be truly acknowledged for the suffering I was consistently told was ‘all in my head’ was the most empowering experience of my entire life. That gave me the courage to come home to Ireland and speak out for others. 5 weeks after surgery I gave a presentation in Leinster House about endo, that wouldn’t have been a possibility before. I found the confidence to complain to the hospital about the mistreatment I received and gained closure knowing I was in fact entitled to the referral abroad I asked for in March 2019. I cannot emphasize enough how much your team saved my life. They gave me the ability to go back to college, to believe in myself again and that’s something you cannot put a price on.
I still take the pill continuously to suppress periods because I’m terrified to go back to living like that. It’s unfortunate that the fear is so strong because I haven’t been able to determine if surgery reduced the excessive bleeding or not. But I believe adenomyosis plays a huge role in that too. I’m scared about fertility and about future partners and how to approach the subject, but I think that I’ll know when I am ready to try to be a Mother. When that time comes, none of the fear will matter because I’ll be so focused on whatever I need to do to have a baby. I look forward to the day when that fear no longer controls my life.
6. Many of our patients with extensive endometriosis who undergo a complicated surgery have a tough time with recovery. Most of the time they are desperate to go back to a normal life, pain free. But this is done gradually, sometimes it takes even a year for the body to recover, sometimes pain persists even though the endometriosis is gone. There are many pain generators after living with chronic pain for many years. Some will experience a disconnection between expectation and reality and start to regret choosing surgery when they don’t see immediate results. We need to address this as a part of the awareness campaigns for endometriosis. Can you talk a little bit about your recovery and if you started to feel better right away or gradually?
I completely agree that there is a disconnection between patient expectation and reality, so I am very glad you’re addressing this. It is especially hard on the patient when family/friends say things like ‘are you not better yet’? You had surgery, why are you still like this? Etc. I was very lucky to have the advice of long-term advocate Kathleen King, to prepare me. She said, you must remember how many years of damage your body has gone through, that damage cannot be undone straight after surgery, it will take time, years in some cases.
Having said that, I felt immediate relief. My surgical pain was nothing compared to the level of pain I was experiencing prior, so I was very, very happy and surprised. I had my surgery on Monday and Friday I went on a tour bus around Bucharest and shopping with my Mam and sister. I was walking very slowly but I was able to do it. I couldn’t do anything like that before surgery, we were amazed.
Every patient has an individual level of pain and expectation. Perhaps because I was so severe, I was grateful for even the slightest relief. I never expected to be fully healed because I know endo is a chronic condition. Many patients are still under the impression that a hysterectomy cures endo so addressing the misinformation is a forward step in managing expectations too.
7. You are also an advocate for legalization of medicinal cannabis. In Romania we are just starting this discussion. This will be addressed in the Romanian Parliament but there is no growing movement on medicinal use for chronic pain caused by endometriosis. You even had a petition going on your facebook page. Is this a tough battle that you are fighting? Is it a sensitive issue?
The petition is for a Multidisciplinary Center of Excellence. I am an advocate for full cannabis legalization.
It’s an extremely sensitive issue that the authorities are not willing to engage on. Misguided cannabis prohibition is the ruination of communities. Cannabis consumers for medicinal purposes live in fear of Gardai instead of feeling safe in their presence. Patients are prosecuted for growing their own medicine to avoid contribution to the black market or criminal enterprises. Ireland’s current legislation is a mess, and we are constantly fighting an uphill battle trying to engage with policy makers on the matter. I hope you will have better progress with authorities in Romania.
8. What are your thoughts, as someone who lived in pain for most of her life, regarding pain management? How did you manage your pain and what is your advice for people going through endometriosis related pain and suffering?
I’ve been experiencing immense pain for nearly 18 years. I’ve consumed cannabis for 13 of these years and intend to continue to do so. Medicinal cannabis is the only consistent I have had in my life, despite the unregulated black market. Some of the medications I was prescribed over the years were so detrimental and I was advised to push through and continue. I almost had a psychotic break after two weeks on Amitryptyline and had the awareness to stop immediately. I worried about those who didn’t have the same level of awareness and would continue taking something on doctors’ advice without having the courage to express how bad the side effects are.
My advice is, trust your body. Keep a diary of symptoms and side effects so you can back up what you’re saying in a doctor’s appointment. If you don’t feel satisfied that your doctor is taking your pain seriously, try to access a second opinion. I would be lost without my electric heat pad and hot water bottle, they help significantly with pain. I would also advise finding an endo community for support. I cherish the endo community on Instagram.
9. Was it all worth it, all your efforts to reach out and fight for excision surgery, even if that meant traveling abroad?
I didn’t even know traveling abroad was a possibility without the help of the EAI. I tell people all the time who ask me about Romania, “It was the scariest, but best decision I ever made”! Before I went, my life was so bleak. I was bedridden in agony almost all of the time. I came home from Romania with the courage to speak up for others and that experience has allowed me to help so many others find their voice. I get messages all of the time thanking me for speaking out and saying my story inspired them to seek specialist treatment abroad etc. With my experience, I know I am making a difference in the lives of people who have been desperately seeking help & recognition for a very long time and that makes me feel really lucky.
10. Some conclusions drawn from your long road through suffering? Is there any silver lining?
I would say the biggest silver lining of my journey has been the incredible people I’ve met along the way. Some of the warriors I engaged with have now become my closest friends. I have an amazing support system since I started to speak out about my journey, and I’ve helped others to find their voice too. I know it’s too late for so many of us but through advocacy, I believe we are paving the way for future generations not to have to face the same obstacles and medical trauma we have.
My entire perspective on life has shifted and I am way more grateful for my blessings. Advocacy inspired me to go back to college doing Applied Psychology and Social Studies. I want to make society a better place for everyone and endometriosis advocacy taught me, I can do that. If living with endometriosis hasn’t broken me, nothing can. It forced me to look within and heal my soul. Endo taught me empathy, courage, bravery, and I truly feel it’s my calling in life to raise awareness.