What was the beginning of your endometriosis journey like before you knew what was happening?

Before I knew anything about endometriosis I was really struggling. I was in severe pain and it hit me out of no where. I mean I had pretty bad pain with my period and that was normal for me so I knew to expect that around that time but the first time I got this pain it was different. The pain that just hit me (when I was shopping) literally brought me to my knees. I couldn’t walk, couldn’t even explain the pain to the family I was with at the time. They had to help me to the car and rushed me to A&E. I was screaming, wiggling in pain and couldn’t sit properly. This went on for DAYS and A&E just gave me pain killers and dismissed it as cramp. I couldn’t even get out of bed or help myself to go to the toilet. I had to have someone there to support me. I felt like there was something seriously wrong I just had no idea what was going on. I felt in the dark and lost because it just wasn’t going away, even with the pain killers. 

When were you diagnosed, and what was your journey to getting diagnosed like?

I was diagnosed with Endometriosis in 2018 I believe. It was a very long time coming. My first symptoms started in 2015. I went to the GP after the A&E visit and they told me it was IBS. I absolutely knew it wasn’t IBS so I fought it but they were persistent in saying it was IBS. After about a year of constant pain and struggling, I spoke with my auntie (who’s a nurse) and she suggested it could be Endometriosis, I googled it and my symptoms were exactly the same! I went back to my GP and advocated for myself, they still wouldn’t listen to me. I kept going back for quite some time. They still wouldn’t help. Just kept prescribing pain medication to mask, not help. They gave me a cervial exam eventually to see if it was cervical cancer (I had already told them it wasn’t this) and the results came back clean. Surprise! After about 2 years of GP and A&E visits, they finally sent me to a gynecologist. I went and they told me again, this is IBS not anything more. I was not happy with this so I asked to be sent to a different gynecologist. I went to see the 2nd gyne and they said IBS for sure, I walked out of there and felt like i had no hope left because no one was listening to me. The GP then sent me to the 3rd gyne and at this point I wasn’t expecting a lot (because of the other 2). He saw my pain, he saw my suffering and he believed the words I spoke – finally. He said we need to do keyhole surgery to properly diagnose you but it sounds like Endo. This was in 2018, he said we need to do this urgently in the next 3 months and within a month I had a date for surgery. They did this in November 2018 and turns out I had stage 4 Endo with 2 tennis ball size cysts which they had reduced but couldn’t fully remove it. 

What did it feel like to finally have a name for what you were experiencing?

Honestly, the relief I felt that day my auntie told me about it, I can’t even describe it. I felt like a weight had been partially removed from my shoulders because I could finally understand it a little better and that I wasn’t crazy. After a while of feeling the pain and the toll it takes on your body, you start to feel like you’re going crazy and then you think ‘am I just making this up, am I making cramp seem more than what it is’ and to finally have a name for it made that go away and I could tell myself that it is real and not just in my head. 

How does endometriosis show up in your body and daily life?

I have endometriosis in my womb, ovaries, bladder and bowel plus those organs have fused together due to the endo tissue. The pain I feel every day is no joke. The endo also pushes on my sciatic nerve and my left leg is like jelly leg every day and is also in constant pain. I have family around me to help do daily life things because most days, these are too much for me. I can’t always stand long enough to cook food, I have a chair in the kitchen so if I need to be in there, I am able to sit down to make it a little easier for me. I also feel like I constantly have heat attached to my body which is a pain because my body temperature is always so high. It just makes every day so much harder than they should be. 

How would you describe the pain or physical challenges of endometriosis?

The pain that comes with the disease is severe, it’s crippling and literally makes you lie in a ball majority of the time. There is no comfortable way to sit/lie and the challenges that come with it are ridiculous. Everything that I do has to be planned in advance even just something like shopping. I need to make sure that I take all the meds and that I am mentally and physically prepared to leave the house. I have to pass on some plans too, planning doesn’t mean that I will actually be able to do it on the day so I also need to take that into consideration. It makes me feel mentally worse when I have to cancel plans due to the pain. 

Do you have “good days,” and if so, what do they look like?

I do have some good days but they’re not very often at all. On my good days, I like to go for a short walk with the dogs. Maybe 30 minutes if I’m lucky but it gets me out in nature and it feels good, even if its only for a short time. It helps me mentally being around nature. I also love to cook so when I am able, I make something that I love. It can be very therapeutic to cook for me. It also gives me back some independance as I have to rely on family majority of the time. 

How has endometriosis affected your education, work, routines, or ability to make plans?

I will always try to make plans and stick to them but I do have to cancel/rearrange plans I have made a lot of the time. I’m lucky to have people around me who understand that when I have to cancel it’s not because I don’t want to it’s because I can’t. It has affectd my work to the point of being fired because of sick days even though they knew what was going on. They fired me a month before I went through surgery and they knew that it was happening. 

Has endometriosis had an impact on your finances or access to care?

I would just say that it did put me out of work and it is a struggle to get back into work being in the amount of pain that I am in. 

What has your experience been like with doctors, specialists, and navigating the healthcare system?

Dealing with doctors and specialists have been a nightmare. It took me a long time to get even 1 doctor to listen and believe me. My symptoms started 2015, got diagnosed via surgery in 2018 and here in 2026 I have finally been sent to an Endo specialist. You lose a lot of life chasing doctors and trying to make them believe you. I would say dealing with the NHS for healthcare has been hard and long winded. It should be easier than it is and doctors should believe you when you tell them something is wrong with your body. No one knows your body better than yourself. 

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

I had keyhole surgery in 2018, I thought this had went smoothly, I was out of hospital the same day. 4 days later I still wasn’t any better, if not worse than I had been. I was rushed back into hospital due to complications from the keyhole surgery and had emergency open surgery. I was in hospital for a month following this. I have since been on medication including – Paracetamol, Codeine and Diclofenac. I am also on medication to line my stomach for the diclofenac and antidepressents. I have tried Prostap (which puts you in a chemical menopause state) and this does stop some pain so it isn’t as intense as usual but it has a massive effect on your mental state. I didn’t like who I was when I was on this injection – the pain reduction does not outweigh the way you feel on it. I think the lifestyle changes you don’t even realise when you’re in it until you sit back and look at your life and realise how much you’ve had to change to accomodate your disease. I need more help with things and I’m not as independent as I was before. 

What has it been like to live with a condition that often isn’t visible to others?

I think the hardest part when it comes to an invisible disease is other people and their understanding of it. As much as you try to explain it to others, they cannot see it so it makes it hard for them to know how you are feeling day to day. I think after so long of being in pain, you learn how to mask it around people so others won’t see if you are in pain or struggling. Others don’t know how to help you either with it being a constant part of your life you can but others can’t really do anything to help with the struggles and there’s only so many times you can talk about it before you feel like you’re just over talking about the same thing. 

Have there been times when you felt dismissed or not believed about what you were going through?

I felt dismissed and ignored for the first 3 years of dealing with this. No one believed me and no one listened. After seeing many GP’s, A&E doctors, 2 gynecologist – they all dismissed my symptoms. I have only had 1 doctor believe me and listen which then obviously made the GP’s accept my diagnosis. 

What has the emotional or mental side of living with endometriosis been like for you?

My mental state has took a toll while going through this. From feeling like I was going crazy to anxious about surgery and feeling so low from the answers they were giving me. I have went through so many emotions since my first symptoms like fear, uncertainty and relief. Its a constant mental battle with an invisible disease because you’re the only one who knows what you are going through and how you feel, no one can agree with you because they can’t see it or feel it. 

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

Yes, endometriosis has affected the way that I see myself in so many different ways. I used to see myself as the disease not as who I am without it. struggled with this for quite some time but eventually I did start seeing myself for me again. I was also told that as a woman I am unable to have children. Now this was a massive battle for me because it makes me feel less of a woman knowing that I am unable to conceive due to the severity of the disease. 

How has endometriosis affected your family relationships, friendships, or dating life?

It puts a strain on my relationships, friends and family. With me having to change plans at the last moment if needed, people do understand but it can cause problems because I am still letting them down (even if they say its ok). Because people don’t fully understand what I go through every day it can cause a drift between myself and them. 

Has endometriosis had an impact on intimacy or your sexual life?

Yes it has affected my sexual life, it is very very painful and not always enjoyable anymore because the pain overrules the pleasure. 

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

I was told in 2018 That I wouldn’t be able to have children naturally and that if I wanted children then I would need to go through IVF. I had just come out of surgery when they told me this so I was absolutely heartbroken to hear that. I knew that if I did want children then I would need to plan it properly and give myself plenty of time and know that there can be more heartbreak with IVF. I needed to fully prepare myself before I went through this. I have been with a IVF team for years and have had 3 failed attempts so far, one ending in miscarriage. This is a hard hard process mentally because this is all I want for it to work but this disease stops me from fufilling my dream of motherhood. 

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

Walking helps soothe my mind when it gets too much. Being in nature is so underrated, it has a calm healing effect to it when you’re in it. I think that when I need a reset that is what I do, I go for a little walk (when I can) in the woods and I come back feeling a lot better than I did before. I also play games on the days I can’t get out to walk and this has an effect of jumping into a different reality where endo doesn’t exist and that hits so good when you’re in it. You’re just a character with no mobility issues, no pain and no worries and I see it as my escape which helps me. 

Do you feel supported in your journey? Who or what has helped you most?

My Family and Friends have been a big support in their own ways. My family ensure I have everything that I need day to day and that they are always there when I need them to help me out or to talk to. I think just knowing that they’re there as and when I need them has been the biggest help. They come to appointments with me and helps me in all my times of need. 

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

I haven’t connected personally with anyone with Endometriosis, I make videos and put them on tiktok with my own message to it and people comment who have endometriosis but I haven’t privately spoke to anyone of those, just through comments. I don’t have any friends with endometriosis which can be hard. I would love to meet people and connect with others with endo, I feel like we would be able to support each other more so because we understand each other and know what we are each going through. 

How has your relationship with endometriosis changed over time?

My relationship with Endometriosis has changed massively over time. I used to see myself and endo as one. Like I was my disease and I didn’t have a personality outside of it. It used to hold me back in everything I did and everything that I thought. I used to let it make all my decisions in life and honestly I was at a low point through that. I knew something had to change and I came out of Endo on the other side of it. I choose myself now, not endo. I decide how I am going to feel and I know the pain is still there and the symptoms of endo are there but now I choose how much they affect my life day to day. I have come to resepect the disease in a sense like it is my friend walking side by side. That probably doesn’t make sense but imagine you have a friend who is giving you advice or trying to bring you down or inflict pain on you because of who they are but you decide to rise above that friend and respect that that’s who they are but you want to do better in life and thrive instead. Endo can bring me to my knees in pain so instead of lying on the floor in pain, I decide that I will get up stronger from it. 

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

I personally think that the NHS were looking for anything else it could have been so that it wasn’t Endometriosis and I also think that it’s something the doctors don’t know much about so they wouldn’t know the symptoms when they walk through the door. I mean I don’t know what it is like today but when I was trying to get my diagnosis, not 1 doctor mentioned Endo when I explained all of the symptoms of that until my auntie had mentioned it to me and then I told the doctors thats what I thought it was and then just played it off like I was wrong and that I don’t understand it but I think it was them who didn’t understand it. If the NHS provided more information to GP’s and gave them more experience with the disease then it would be a smoother process for girls now to be diagnosed or on the right track to being diagnosed. More education = More girls helped sooner as this disease can take your life away from you especially while waiting for help. Life kind of stops like it’s in Limbo while begging for help. We shouldn’t have to beg to be listened to. 

How do you feel endometriosis is represented in society or the media? What would you like to see change?

I only really see videos of others showing the pain and grief that endo has caused and that is all right, I understand and respect that they’re showing that side of endo. I would like to see more videos showing how people can live with it and not have constant A&E visits, constant pain. I wish it was looked into more so that more girls/women can get more help so that we can live with reduced pain so that the videos become a little more positive as it’s such a negative disease, there is no positives to it at the moment. 

What would you like more people to understand about endometriosis?

I wish people could understand the impact is has on us women. People are quick to judge what they don’t know and pass it off as something else. If more people had more understanding then us who suffer would be more accepted. I think that the NHS should have more knowledge of it, do more case studies, listen to us. Reduce the time it takes to be diagnosed and don’t make us beg. I would like for people to understand that it is not our fault, we didn’t ask for endo. We didn’t ask to spend our life in constant pain, we didn’t ask to have fertility issues. I also wish people would have an understanding that it is not just us (who have the disease) that suffer. Our partners, family and friends also suffer. Responsibilites all lie on those who we live with or who help us the most. Or partners become our rock, our support, our protector, the one person who takes all the hits with us and is still there to help when we need it. They also have fertility issues because they’re in it with you and I think people glance over this. Fertility affects both the woman and the man no matter the reason for the fertility issues. 

When you think about the future, what fears, concerns, or hopes do you have?

I have the same fear and hope for fertility. I’m terrified that it will never work but on the same hand, I’m hopeful that it will work. I have concerns that I will need surgery again but again, I’m hopeful that it will help so that my fertility journey might go better. There is no hope without the opposition. 

Is there anything else you’d like to share?

Endometriosis is a hard and crippling disease, I know that. I just want to pass on my love and prayers for anyone who is suffering with this and you’re not alone. If there is anyone who needs someone to talk to or anything at all, I am always open to be there <3 Thank you for the opportunity to spread more awareness for Endometriosis and those suffering with it.