How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
I don’t have a diagnosis yet, sadly. I have a family doctor that is very sure I have endo but I’ve been too scared to see an OBGYN.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
I’ve always had heavy periods, pain that would put me in bed, and pain outside my period. I just thought it was normal to feel that way until I was at the doctor at 18 years old just recently and he explained about endometriosis. I feel my symptoms may be better since the last couple months but I still experience quite a bit of pain, especially around my period. I also have bladder pain, and digestive upset constantly that includes bloating, sometimes painful. I get sharp pains by my ribs, and when I have period pain it travels down my legs and in my lower back so much I can barely walk or stand. It’s debilitating.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It causes me to feel depressed, and plan things around when I may be in pain. I struggle at work, and I don’t have many friends or go out too much. It can really affect your mental health more than some realize.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I have a slightly supportive family but they don’t really believe I’m actually in as much pain as I am. My significant other is very supportive and tries to help me out the best he can. I’m very grateful.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I’m still searching for one I trust, I’ve only had experience with two but I’m so scared to go to an actual OBGYN.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work, mostly. I just have to hope I am in pain on days where I’m not at work (I don’t work 2 days out of the week) but usually I have to push through. My boss is very understanding thankfully and tries to work with me the best she can so I can take breaks.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Heat is a huge one, and I used to use a lot of anti-inflammatories but they were taking a toll on my stomach, so I’ve been trying some natural herbal blends that I haven’t figured out how they do yet. But I love heat- I have a wearable heating pad and it’s the thing that gets me through, and helps me so I’m not bending over at work (I sometimes cannot stand).
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Something that I’ve heard is sometimes diet changes will help- I’ve done a lot of different ones such as being vegan, eliminating inflammatory foods, etc and for me I haven’t noticed a difference.
What do you wish you knew earlier in your journey?
I wish I knew that the pain isn’t normal.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I am in a Facebook group and it has been hugely helpful as well as supportive. It’s something I’ve always needed and I’m so grateful I found the group through Emma’s instagram.
Are there any misconceptions about endometriosis that you've encountered?
If you just eat healthy and live really healthy everything will go away. You can do all that but it’s not going to magically heal you. It’s a chronic illness.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
Have a support system, make others aware you’re struggling, so they can understand better, and listen to your body, don’t push through pain.
