the endo advocate & woman behind endohappy:
By: Fela M'tima
FELA: Hi Katie! I am so excited to learn more about you! I have followed you before Endotwins was created and I've always loved how uplifting your page has been. Let's start off with your name, age, and how long you've been diagnosed? Also any other illness's you battle.
KATIE: Hey Fela, my name is Katie, I'm 42 and I was first diagnosed in 2002 at the age of 27, so 15 years ago!! I was then diagnosed with Adenomyosis about 10 years after that and then also Fibromyalgia last year.
FELA: What inspired you to start EndoHappy?
KATIE: I was inspired to start EndoHappy shortly after my Hysterectomy in 2012, I had received so much love and support from the EndoSister community I wanted to be able to give that love back, and for there to be a place to bring EndoSisters together and Twitter is a great place to do that.
FELA: How was making the choice of having a Hysterectomy for you? How has managing your symptoms been since?
KATIE: I had my Hysterectomy in 2012 at 37, about 10 years after my initial diagnosis but like many of us I'd been dealing with all the issues that Endometriosis and Adenomyosis brings since my early teens so I'd had enough really of it all. It was a very hard decision, it made me very sad, I was heartbroken really, not just about the surgery, but about the loss of so much of my productive years to Endometriosis. I was never under any illusion it would 'cure' me, I chose to have it to give myself a chance at a better quality of life. My menstrual cycle was unbearable, the pain and heavy bleeding was stopping me from working and I was repeatedly growing ovarian cysts, the time between surgeries was getting shorter and my life was just going round and round in circles. I couldn't take the pill, had tried Prostap and they couldn't fit a coil so this was the next step for me personally. It has helped tremendously, mostly I'd say as I no longer have that menstrual cycle taking over my life. I do still have some pain, it has always been mostly digestive/bowel related but over the past 6-12months the pelvic pain has increased and the bowel pain has returned alongside leg/back pain. I have been managing my symptoms well until recently when it has got harder, mostly I'd say because of the bowel pain, it's hard to sit down some days and that makes work very difficult!
"When we call ourselves warriors it is because we are fighting almost every day to push through pain and all the challenges it brings. Be proud."
FELA: Tell me more about your journey with Endometriosis and chronic pain both before you had your big surgery and after.
KATIE: Endometriosis has overshadowed every part of my life good and bad! I'm an introverted personality so I've found myself very lonely at times because of the pain, especially in my 20's as I would of liked to be more outgoing and social but it took my confidence and I just wanted to be alone to relax and rest. It all changed after my diagnosis when I felt great, after my first surgery, I moved to a new city, met new friends and had a much better social life. The pain caught up with me though and I was stuck in a cycle of pain and surgery in a city away from my closest friends and family, which was very lonely. I had made some great new friends, but it's not the same as those who know you best. After my Hysterectomy and again feeling great I returned home and I am much happier now, I have a different life now. I go out and socialize when I want to, if I don't go out it's because I don't want to rather than because I can't. I have a large network of EndoSisters that I am in contact with daily, some are here in the UK and I see them to hang out with and others through social media. I was involved with the organization of the first ever EndoMarch and earlier this year went to the Houses of Parliament to meet with the UK Government to discuss the proper care for Endometriosis patients, I'm passionate about advocating for them I just don't have a huge amount of spare time in which to do it as my full time job has long hours. But I'd say chronic pain has taken so much from me that I'd never envisioned when I was younger but it has given so many wonderful blessings I have just accepted it is a part of my life now.
FELA: We all have moments when we have trouble finding the positive or happy side of this disease. How did you get through those moments mentally?
KATIE: I'd say escapism! If I have the energy I head to the gym for an endorphin boost or if not I usually get lost in a box set, to try and stop me over thinking which I often do. On better days I love to explore self care and I'm a huge Brene Brown fan, I have her books and the Jess Lively podcast is amazing. People such as these help me to give my brain tools to look at situations with a different perspective.
"For me I have lost so many days of my life to Endometriosis, I want to give myself the best chance I can to get the most of the days ahead of me. "
FELA: What advice do you have for women struggling to find the positivity within themselves through their illness?
KATIE: My best advice is to recognise that you have done and are doing the best you can in very challenging circumstances. When we call ourselves warriors it is because we are fighting almost every day to push through pain and all the challenges it brings. Be proud.
FELA: Something I found on your page that really helped me (one out of many) was the post you made about saying "I don't" rather than "I can't". Can you explain that a little more?
KATIE: Yes I shared that as I think it's important to take charge of your decisions, approach then from a place of empowerment rather than disadvantage. You are 'choosing' to be healthy, practice self care because it is good for your health not because you 'can't' do something. We can do whatever we want, but if we want a better outcome we must make better choices.
For me I have lost so many days of my life to Endometriosis I want to give myself the best chance I can to get the most of the days ahead of me. If I eat junk food, drink too much alcohol and don't exercise I feel tired, get bloated and I'm pain which then stops me having a good day.
FELA: Seeing as social media is such a huge tool for the endo community and sisterhood, what do you think we would do without it? Do you think we would be where we are without it?
KATIE: I think that the EndoSister community is making a very significant change in how Endometriosis patients and starting to be treated all over the world. We're all starting to realize 'it's not just me' and taking/sharing our experiences and information with each other is very empowering!
FELA: How would your life be different without starting EndoHappy?
KATIE: I cannot imagine life without EndoHappy, it has brought back so much of my confidence and I've met so many great people it would be still quite lonely I'd think.
FELA: Let's talk about the political situation real quick, something not so positive or happy. How have you been feeling about everything that's going on in the U.S.?
KATIE: I am saddened by what I see every day in the US, the attitude by many to women's health and the lack of affordable or free health care is unacceptable.
FELA: How do you think social media can help us make the most out of the current political situation?
KATIE: I think social media can help by highlighting the realities of how political decisions affect patients every day, how people's lives actually are affected. Everything has a spiral affect, it's not just having a chronic illness, it's the economic affect that has on you, your family, your employer, if we don't all win nobody does!
FELA: Katie, I want to thank you so much for sharing with me and also everything you do for all of us endo sisters! You have created an amazing and extremely happy and honest community and I feel so grateful to have found you!
KATIE: Thank you so much Fela! I love the Endo Twins, your page is hilarious and influential at the same time.