Richard speaks to Aimee Brown, a young woman who suffers from debilitating endometriosis, as well as adenomyosis. “Endo” affects one in ten Irish women, or more than 155,000 women in Ireland. There is an average wait of nine years before patients are diagnosed with this condition, often after repeated misdiagnoses. Aimee’s symptoms began at age eleven, but she did not receive a formal diagnosis of this condition until the age of 21. She has written My Endo Manifesto, which includes chapters such as: “Repeated Detrimental Surgeries & Medical Trauma”, “Mental, Physical and Psychological Scarring”, “Extensive Counselling & Lack Thereof”, and “Prescriptions & Personal Cannabis Experience”. 

According to this personal testament: “Endometriosis is a common chronic inflammatory condition where tissue, similar to the tissue that normally grows inside the uterus, grows outside of it. This more commonly happens around the ovaries, the fallopian tubes, the bowel and the areas at the front, back and sides of the uterus. In some cases, it can be found outside the pelvis (lung, skin, brain, diaphragm). It triggers a chronic inflammatory reaction, resulting in pain and adhesions. Adhesions develop when scar tissue attaches separate structures or organs together. Symptoms include severe pain, hormonal imbalance, fertility and intimacy issues, chronic fatigue.” Aimee uses cannabis to treat her pain and says that it is far more effective than any drugs she has been prescribed to date.

Twitter: @AimeeLouB / Instagram: @endowithaimee_blog

You weren’t formally diagnosed with endometriosis until you were 21. Why do you think this was? Well firstly, because I was never actually referred to a gynaecologist. The GPs (and I’ve seen a couple of different ones over the ten years), they all told me the same thing: “Unfortunately, this just happens to some women. And you’re just unfortunate.” There was never, “It could be endometriosis.” I’d never even heard of it till after I’d gotten the diagnosis. So I think the main failure was that the GPs didn’t recognise the symptoms. They weren’t aware enough to actually refer me to a gynaecologist, in my opinion. So there’s a lack of education out there in the medical profession in Ireland, basically. One million percent. Even amongst the gynaecologists themselves, who are supposed to be kind of up there in the area of endometriosis.. They don’t have the level of expertise that we need as patients. 

You were placed on a waiting list by Tallaght University Hospital for an appointment with a Pain Management Team and have been waiting since 2016. Why is the wait so long? I was an in-patient, I was admitted for ten days or something, in 2016. I was seen by the pain team and the consultant told me that all I could do was wait for an outpatient appointment. But according to the pain clinic, they never got a referral for me until 2019. But according to my notes (and I got my medical history under The Freedom of Information Act, I requested everything) I have proof that I’ve been waiting since 2016! That’s insane. The injustice is just horrendous.

You’ve been using cannabis to treat your pain since the age of fifteen. How has it helped you over the years? Honestly, I believe if it hadn’t been for cannabis, I wouldn’t be here today. It truly is the one lifeline and the one consistency that I’ve had, even though it’s not the level of consistency that I deserve. Because if it was regulated, I would know exactly what kind of strain I was buying. Whereas I’m kind of depending on the black market, which is not ideal. But at the same time, without it, I don’t know where I’d be. Even though I’m still in chronic pain every day, I reckon that I would be so much worse off, if I wasn’t smoking cannabis. My whole body is tensed up with pain, whereas when I smoke it’s almost like I can let the pain flow through me and I can relax a bit. There’s a lot of people out there with chronic pain conditions that have had to rely on the black market it seems. And it’s desperate. If I had the knowledge and the capability and obviously if the law was different, I’d love to grow my own. Yeah. D’you know? And I’ve looked into that recently. I bought a book, Cannabis Growing for Beginners. So, I’m reading that and I’m trying to get familiar with the process so that I don’t have to be feeding the black market. I don’t want to be supporting criminal enterprises. I don’t think anyone does. 

You were on 23 different prescription tablets for pain management, including Palexia (which is often prescribed for terminal cancer). The medications have side effects including severe tremors, nausea and poor balance, to name just a few. You stated before that Amitriptyline almost cost you your life because of its severe side effects. Can you elaborate on how that drug affected you? I wanna  say it was nearly a mild psychosis that I went into. My brain wasn’t my own. The fits of rage that I was getting, that I didn’t know what to do with it. It got to the point where I was scratching the skin off my own face. I was self-harming, because I didn’t know what to do with everything that was bubbling inside. I was paranoid. It was just the most horrific experience, mentally.

So you’re no longer on any of those tablets? In March this year I met a new GP for the first time and it was honestly one of the most heartbreaking days of my entire life. She took one look at the prescription and her demeanor completely changed. “Do you realise this is an end of life drug?” And I was taken aback a bit, and I said: “Excuse me, do you realise that I didn’t put myself on that? If you have a problem with what I’m on, you should surely be taking that up with the Doctor who’s prescribed it and not (be) taking it out on me.” So she didn’t like that, first of all. And I had a whole folder of all my surgical notes and I have a lot of research about cannabis and endometriosis as well, in the same folder. And when she got to that page, oh my God.. It was like I personally insulted her. So, she went ballistic and she shouted at me, “Nobody will be getting any benzos or sleepers around here!” And I went into shock, I got really upset and I said: “Excuse me, I have never been on benzos or sleepers in my whole life, not once ever. Why would you say something like that?” 

“Well it needs to be said, it has to be put out there.” I said: “No, it really didn’t. There was no need for that. And if I had known you’d be so offended by the cannabis conversation, I wouldn’t have brought it up. I had this conversation openly with my previous GP and things were fine. I never expected this kind of reaction.” So, she told me I had insulted her and that she never wanted to see me as a patient again. So I literally left the place hysterical, shaking, (with a) panic attack. Couldn’t believe what I’d been subjected to. And that day I decided: “I’m not taking any more of these tablets, because I’m not gonna have any Doctor look at me like that ever again.” So I abruptly stopped all pain relief and the anti-depressants. All I’m taking now is my pill continuously and Buscopan. That’s all I’ve been taking since March, even though I’m in severe chronic pain. Because of the psychological impact of that day, that just pushed me over the edge.

I can’t believe that a GP would speak to someone like that. It sounds like she showed you no sympathy whatsoever, no consideration of things from your point of view. No compassion, no humanity. She didn’t even know me, she made up her mind in two minutes after looking at a prescription without even asking me any questions. Am I in pain, is it working? No questions. She just made up her mind and that was that. It was honestly the most heartbreaking thing. And you had just explained to her what prescription tablets you were currently on and you mentioned the cannabis. I had given her a photocopy of the prescription from the previous GP and that’s what she was going off (of). And she found when she was going through the folder, she came across the cannabis. And once she’d seen cannabis, she closed the folder. She didn’t look at any of the detail. It was like I had said something really offensive about her mother. Aimee giggles She was so offended. I couldn’t relate to that. Yeah. And the previous GP was alright about the use of cannabis alongside the medications, is that right? Yeah, I spoke openly with him about it and he knew that that was helping and he heard when I was telling him about the side effects of the medications and stuff. And I kind of pitied him to an extent, because he didn’t know what to do with me. He’s not equipped to handle a case like mine, I think. And I’m not the only one, there’s many, many, many endo warriors out there in the same boat. Their GP is just at a loss.

Now I’ve battled with depression and I’ve had a PTSD diagnosis since (I think) the age of thirteen, so I’ve always had psychological conditions. But never to the extent of this particular drug (Amitriptyline). They were heightened a lot by it. I can’t even express to what extent. I can’t exaggerate enough how quickly I lost myself. I only took them for two weeks and I was a completely different person. It’s surprising that you were on 23 tablets to begin with, because surely some of them are already going to affect each other. Well, when I saw the pain specialist as an in-patient in 2016, his advice was until I get an out-patient appointment, I should take two Tylex, four times a day, three anti-inflammatories, say 400mg, so that’d be 1200 in the day, and Paracetemol every four hours. Regardless of if I’m in pain or not, that was his advice. To keep the massive flare-ups at bay. So, I was not willing to take eight Tylex a day, three anti-inflammatories and eight Paracetemol if I’m in pain or not… That’s not living, there’s no quality of life in that. It’s just throwing pills at the problem out of desperation, isn’t it? Exactly.

You quoted your own gynaecologist as saying the following before you were put under anesthetic in 2018: “Be prepared if we don’t find anything because more often than not if we’re used to being in pain, the pain can be all in our heads.” How did this affect you? I just thought: “Number one, if that’s really a possibility, why would you be about to cut me open? And number two, falling to the ground with stabbing pains in your pelvis is definitely not psychological.” I knew it wasn’t but for somebody who I was trusting to cut me open and look inside to say this to me five minutes beforehand, it was devastating. Now, I understand that she needs to manage patients’ expectations. And it is a chronic illness, there is no cure. The only thing we can do is try to best manage it, so I completely understand that and I get that she has to manage patient expectations. But the delivery of that statement and the timing of that statement was very, very, very insensitive. Of course, it beggars belief. I know that when they say “all in your head”, they mean that the pain signals that are going from the brain to the pelvic region, that’s been happening for so long that even if the disease is removed, that can continue to happen. I think that’s what she meant, but that’s not what she said. Yeah, the way that she delivered it definitely came across the wrong way. Very cold! Aimee giggles 

Yeah. You’ve had four laparoscopic operations (keyhole surgeries) in the past seven years. Three of those were in Ireland. Your last excision surgery in Ireland made the illness even worse for you. As a result, you had to leave work in 2018 and travel to the Wellborn clinic in Romania at a cost of €8,000 to undergo surgery with Dr. Gabriel Mitroi. How does the treatment process in Romania compare to Ireland? First of all the centre is dedicated to endometriosis, so his surgeries consist of 90% endometriosis and 10% endometrial cancer. So that’s why his expertise is so superior because he’s solely focusing on that area. Whereas in Ireland, the gynaecologists are obstetricians as well. They’re in different fields. So, we need more dedicated professionals in Ireland, number one. Number two, it’s because he’s the second in Romania in a multi-disciplinary setting. There’s different Doctors present. So that, if the endometriosis has gone to…for example, for me it was my diaphragm. Right up near the lungs. A gynaecologist is not qualified to go near there.

I was told in Ireland, that’d probably be a general surgeon that’d deal with that. And when I told that to Dr. Mitroi, he was horrified! Because a general surgeon should never, ever treat endometriosis. That’s why we need a multidisciplinary setting so that we’re getting rid of the entire disease from all areas, in one surgery. Whereas at the moment in Ireland, if you have it in the bowel or the bladder, it’s different operations for each. And that’s just too many surgeries. According to ¹Kathleen King’s research, Irish women were having up to thirteen, seventeen, even twenty times more surgery than our European counterparts! That’s absurd! There’s a video of one of the TDs quoting that in the Dáil, when the topical questions were put forward. 

You worked with People Before Profit TD Gino Kenny and Kathleen King, the Chairperson of the EAI (Endometriosis Association of Ireland), to host a presentation at Leinster House in December last year. During the talk, Kathleen said she wished for the government, ‘working with the EAI, to develop a multidisciplinary centre of excellence for endometriosis within Ireland’. Have there been any developments on this front since then? Unfortunately not, to my knowledge. No. I’ve met with a new Doctor who recently started in the Coombe, Doctor Hugh D. O’Connor, he’s an endometriosis specialist. And he is working towards that setting. And he told me that he rarely operates without a colorectal surgeon in the room, if he feels the patient is gonna need that. So he is already trying to establish that multidisciplinary setting, but he needs support from the government basically. Okay.

You wrote to Tallaght University Hospital in December of last year, about the need for a consultant’s signature to give to your GP, so you could apply for a medical cannabis licence. What kind of a response did you receive and have you been able to register for the licence since? No. The response was a flat out “no” from the gynaecology team, because apparently that’s not their area of expertise. They said it would have to be a pain clinic, pain management specialists, who would have to apply for that kind of a licence. So I’ve since gotten an appointment with the pain team, I was there in July this year… Absolute disaster! The specialist refuses to treat me while I’m using cannabis. From his point of view, whatever he tries to put me on, he doesn’t know how it’s gonna react to cannabis. So he won’t accept my life experience with the plant as being enough. Not only will he not even entertain the idea of applying for a licence, he also refuses to treat me as long as I am using cannabis for myself. Okay.

So it’s still a very complicated environment when it comes to the knowledge, or lack of it, that’s out there about cannabis in relation to other prescription drugs. It’s a mess. And it’s really annoying. I said to him: “It upsets me that if I lived in Canada, with the exact same pain and the exact same condition, I would have the opportunity to have a better quality of life”. And his response was: “Well, emigrate.” Terrible. And I said: “Honestly, I feel emigrating would be a very cowardly move, because I’m not the only one in this position. Why would I leave my own country to go somewhere else, instead of fighting for what’s right. What should be happening here. And he said: “Well that’s a completely different argument.” 

You received correspondence from Philippa Bridge Cook (Executive Director of The Endometriosis Network Canada). What exactly did she say when she got in contact with you? She said she’s really sorry that we don’t have access to cannabis here. What they do with the endometriosis out in Canada, they run workshops and they explain to patients the best strains. Because obviously they have a lot of research to go on, over there. They show the best strains to use for particular symptoms. They advise how to take it, what’s the best dosage. If you want to use edibles, they advise which ones are best for which symptoms. So there’s a lot of education over there. And I’d love to have access to the same thing. I think many people would. That was in Canada, but I also have research and there was only a new paper put out recently, from Doctor ²Mike Armour (of the National Institute of Complimentary Medicine at West Sydney University).

And he’s done a couple of studies on women using cannabis as pain management for endometriosis. And he has concluded that it is the best form of pain management for severe endometriosis pain, with the least side effects. That’s what his conclusions were. There’s only gonna be so much longer that medical professionals here can ignore all the emerging data from around the world before they’re seen as a laughing stock. I probably should’ve mentioned about the pain specialist… When we had the conversation, he gave me paperwork to back up his side of it and why he doesn’t use cannabis as a form of treatment. Which I thought was better than just being completely shut down. At least he was backing up why. And I asked him: “Would you be open to a new way of thinking if new research emerges?” And he said he would be. So that’s kind of a plus. So he wasn’t entirely anti-cannabis. He felt that there wasn’t enough data that he was familiar with.

The data he was going off was an EU paper. Whereas I was going off Australian and Canadian and American. Actually, I think Israel did a study as well recently, on endometriosis. So they’re finally beginning to learn more about at least treating it with cannabis. Yeah. Because like that, it is a chronic condition, there is no cure. The gold standard treatment is excision surgery, whereas in Ireland, more often than not, they use ablation surgery. The difference is, if you could imagine a flower growing, ablation would be burning the top of the flower, but the root is still there. Whereas excision is cutting it out from the root. The ablation surgery is less severe from the patient point of view, it would be in and out in no time. Whereas excision is kind of more invasive, because you’re actually cutting right in. If you have deep infiltrating endometriosis like I did, they have to physically cut right down into the organ to cut the root of the disease right out. So that’s more invasive. But the recurrence rate of endometriosis is much higher with ablation surgery, because the root is being left behind every time. And that’s the reason why there’s more surgeries for Irish women, because they’re constantly having ablation, which is not actually dealing with the root cause. 

In 2018, your surgery in Ireland made things worse. And after your surgery with Dr. Mitroi in Romania you felt it had made a massive difference, relative to the surgeries before that. And you wrote to a solicitors’ office about taking legal action for medical negligence that you experienced at TUH and got a letter back last November saying that your Statute of Limitations (the two-year window to begin legal proceedings for negligence) had expired. So effectively, the person who botched your surgery in Ireland will receive no repercussions. Yeah there’s no repercussions. She told me there were no signs of deep infiltrating endo in the pelvis, and yet fourteen months later, that’s what the Doctor in Romania removed. I hadn’t got a chance to see her for a long time. I approached her in a public setting.

We had an endometriosis info day at the Carlton Hotel. And it was about six weeks after my surgery in Romania and she was taking questions at the end of the day. I queued up and she didn’t even recognise me. I didn’t say who I was, but I asked her: “In your professional opinion, can deep infiltrating endo develop in the pelvis in fourteen months or less?” And she said: “Well, every case is different.” And I said: “Yeah, but in general?” And she said: “No, in general no.” So, unbeknownst to herself, she admitted that it would’ve happened to me there, basically. Yeah. And yet still, the solicitor said: “The Statute of Limitations ran out. It’s two years.” And I said, “But it was only last July”, and (we’ll) say this was October, it was still within the two-year bracket. The solicitor said it would still tie-in to the first operation that I had with the same surgeon, so therefore, the first one would put me outside the two-year bracket.

Returning to cannabis, I was arrested last year on the side of the road and brought to the Garda station and denied my prescribed medication, resulting in a serious, awful flare-up. It was a routine checkpoint. And he (the Garda) checked my tax, NCT and stuff. I couldn’t wait to get through the checkpoint. It was the first time that I’d actually had everything in the window and I was excited. He checked everything and then asked me for me licence. He took the licence, went off for a good ten minutes. He comes back to the car and another squad car pulled up on-site. He said: “Now, you have to do a random drug test.” And I said: “Well, I don’t think there’s anything random about it. You’ve had me licence for the last ten minutes. You’ve obviously phoned in, checked up and stuff. Everything is okay in the car. I don’t understand why you didn’t wave me on, like you did the car in front.”

He insisted that it was a random thing. He gave me the thing to test and he said that I had to rub it around me mouth for up to eight minutes. A swab. Around me gums, for eight minutes. It was really sore. When I gave it to him afterwards, it was a complete lie. I think Google said it was two minutes. I didn’t know why he insisted, but anyways he told me it was testing for benzos, opioids, cocaine and cannabis. So straight away, I knew I’m on over 600 milligrams of opioids daily, so I was definitely gonna fail on that. And I didn’t fail on that, it was just the cannabis apparently. That’s very strange. That’s what I said, right? I said: “How do you know when the test is done?” and he said, “It slightly changes colour.”

To my knowledge on that day, that thing never ever changed colour. So, I don’t know how he was able to indicate whether it was negative or positive. He told me he had to arrest me and bring me into the station, because a GP had to come and take a blood test to determine if I’m above or below the threshold I’m allowed have in me system. I said “That’s news to me, since when is there any threshold allowed in your system?” And when you get the result, it doesn’t say “Threshold” or not. It says, “Class of drug/alcohol”. And then on the other box, it says: “Cannabinoid class”. It doesn’t say how much or how little and it says nothing about opioids, which I find very hard to believe, considering what I was on. But the most degrading part about it was…

It was in March and it was the first (day) of the really nice weather. And that day I’d brought my mam and dad over to see me new house that I’d only moved into, in Birr. So I dropped them home and I was on the way back. So I’d no handbag with me, I had nothing. I was wearing short-shorts, flip-flops and a little top. So you can imagine how degrading it was. On my hands and knees, rolling around a squad station, with male Guards all around me, clutching my vagina, with my arse pretty much hanging out of my drawers. It was the most horrific experience, I can’t even.. I ended up not leaving the house for over a week. It took me a month before I’d drive the car again. I’d only been starting to get back the confidence to drive the car, because of my condition. The condition stopped me and the tablets… Because of the tremors, I couldn’t drive the car because my leg would kick out and hit the accelerator.

It was a nightmare. So I was only just starting to get confident, now and again, to drive the car. And the sad part is, I wouldn’t be able to do that without cannabis. I need the cannabis to be in a position to drive. And what led to that treatment at the station, what exactly was the justification for that? They couldn’t get a Doctor. I was there for two and a half hours and I couldn’t get a Doctor and because I didn’t have my own prescribed medication on my person, they wouldn’t let me boyfriend at the time go get the meds and bring ‘em back to me. They wouldn’t let me mam give me a few Tylex that she had, just to tide me over. They refused me any of my own prescribed medication. I don’t understand how they had you in such a humiliating way at the station. The fact that they didn’t let me get the medication when I was supposed to take it, meant the condition and the stress I suppose, flared the pain severely.

You were debilitated so severely that you were on the ground in pain. Yeah. And there was one female Garda, she did feel sorry for me. But I hadn’t had a period or any bleeding for years and I bled that day in that station with the stress and whatever. And I asked her for a pad and they didn’t have any. She said, “I have a tampon in the car.” And I said: “Well unfortunately due to my condition, I can’t use them. I need a pad. If you’re gonna arrest me and keep me here against me will, the least you should do is have sanitary towels.” Yeah. So yeah, it was very, very humiliating. And then she kept saying to me: “Look, when the GP gets here, she might be able to give you something for the pain.” So then when the GP arrived, she had already made up her mind that I was a criminal. She was terrified walking into the Garda station.

She was a bag of nerves and she couldn’t look me in the eye. She butchered me trying to get blood, ‘cause I’ve terrible pains as it is. It is a nightmare any time I get blood taken. That made her even more nervous, I think. But that’s no use to me, d’you know what I mean? The one person that I thought was actually gonna help me then in that situation, couldn’t even look at me. D’you know? Where to even start with that… Pretty horrific! I’m so sorry that you had to go through all of that. Yeah, thanks. But speaking out is the only way we can try (to) get rid of the stigma. It’s mad how common it is, but the shame and the stigma around women actually saying that they’re struggling…they’re not taken seriously. If you go to A&E, “It’s all in your head”, or “You haven’t got a high pain threshold. You don’t look sick.” And you get all of these ridiculous biased remarks. And that’s why people suffer in silence.

Do you believe that other countries are significantly more informed on the condition than they are in Ireland? One million percent! Look at Dr. Mitroi in Romania. They have three endometriosis centres, just for one country! And the endo is known as a silent cancer in Romania, so even the level of awareness is much higher. But Dr. Mitroi wrote to his government only a few weeks ago, looking to them to give more support to women in the workplace. And even though they’re so advanced, he still believes they’re really behind. And he’s actually taken time out of his life to write to his government, that’s how dedicated he is to his patients. He has a ³free A-Z endometriosis guide on Google Docs. It’s freely downloadable for anyone. And the education that it offers is quality. And he actually featured a poem that I wrote in that as well, which is epic for me. It’s being downloaded in loads of different languages. It’s really cool, he does a lot from a patient’s perspective.

There’s an incredible quote from him: A very important thing to remember is that endometriosis is the most aggressive benign disease. It looks like cancer and the surgery is often worse than those treating cancer, but it is benign. That suggests that endometriosis itself is like a form of cancer, that it just hasn’t been classified as one yet. But because it’s not malignant and it won’t kill you acutely or imminently, it’s not taken seriously. But what they fail to understand is that, when endometriosis grows and spreads and migrates, it does cause severe trauma to other organs. My friend’s bladder and ovary were so badly adhered to her bowel, that her surgery took eight hours just to get the bladder detached from the bowel.

It really does behave like cancer in the ways that it migrates and stuff. And we don’t know enough about it, we don’t know how it starts. We just don’t know. That’s something that Stephen Donnelly and Simon Harris should encourage more funding for. Simon Harris blocked me on every social media account and now when I email his office, I get a bounce-back to say that I’m blocked from the server. Stephen Donnelly, I haven’t really persisted as much (with him), because honestly… The stress that I put myself under trying to get the word out really kind of deteriorates me condition, which defeats the purpose of me trying to have a quality of life. I am trying to maintain a balance as well, you know? Interesting that Simon Harris would block you.

He replied to me last year, saying that the RCOG (the Royal College of Gynaecology) had assured him that any gynaecologist can diagnose and treat endometriosis. Yeah, but it would seem that that’s not the case. It’s so far out of the ballpark and wrong, it’s dangerous. And I actually took a screenshot of the email, put it on my Instagram. And when Dr. Mitroi saw that, he was horrified. He did a post specifically to address what our Minister had falsely believed, basically. He was horrified. Where to begin with all of this? We’ve a lot of work to do in Ireland, haven’t we? Yes, absolutely.

Thanks for taking time to educate me about your condition. I wish you all the best moving forward!

I appreciate the invitation to come on and have a chat about it, so thanks for that. Bye! 

References:

¹ The Endometriosis Association of Ireland website: https://www.endometriosis.ie/ 

² The following survey results were recently published, which showed huge potential for cannabis

as pain relief for endometriosis:

https://nicm.edu.au/news/1_in_10_women_with_endometriosis_report_using_cannabis_to_ease_their_pain 

³ Endometriosis from A-Z can be downloaded from Google Docs here:

https://books.google.ie/books?id=5jbADwAAQBAJ&printsec=frontcover#v=onepage&q&f=false 

* Petition for the establishment of a multidisciplinary endometriosis care centre in Ireland:

https://bit.ly/3zNROIH

** The Women’s Health Task Force website: https://www.gov.ie/en/campaigns/-womens-health/