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?
My period pain started right off with my period, I was around 14. Where I live it is really hard to find a gynecologist so I was searching for new ones every year for my yearly checkup for around 12 years. All the good ones were always booked up so I always ended up with some shady weird old dude telling me period cramps are normal. I had to go to the emergency 2019 because an ovarian cyst ruptured in the middle of the night. They had to do surgery because I didn't stop bleeding. I needed an gynecologist for aftercare so I got emergency appointments at a relatively young doctors office so I kind of emergencied my way into being her regular patient. She was the first one taking my pain seriously. I had various other cyst problems but she also sent me to an Endo centrum. I waited 18 months for the appointment and it went really good, they believed me immediately, saw adeno and suspect Endo even without surgery because of the locations and the kind of pain I described.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
It's highly dependent on my stress levels, they come and go in waves. I gladly have no pain symptoms during non period days but the period days are long and a lot. I take hard painkillers to be able to go to work or go to uni, sometimes I think it's dangerous (for me mostly) to work under their influences but I cannot justify calling in sick every other shift. I only work every two weeks for two days so I basically have my period once a month on two days of four days total of work. I have to plan around my period, it gives me less time to study for example, because I know I wont be able to for 4-5 days a month. Sometimes when I'm cramping I cannot even focus on lectures. I feel like I couldn't live without my pain meds, even though they make me light headed, sometimes nauseous and kinda fuzzy. I struggle most with my right side, the left side feels pretty healthy even tho it's the side I have most cysts on. The right side is the one that hurts, I have back issues and leg issues and sometimes pinching arse pain. Min once max 4 times a year my period gets so worse I can only cry and take so much meds that they make me fall asleep. I am also pretty pain sensitive, sometimes when my period cramps are starting and I feel they aren't as heavy yet, I can feel my nervous system freaking out and panicking anyway. it feels like doom and I have to take pain killers anyway, so my body doesn't freak out in anticipation.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
As I didn't have women doctors and only rotated between the 3 weird old men doctors who were free (for obvious reasons) I wasn't taken serious at all and I knew I needed a dedicated doctor. But because I work in healthcare myself I always rationally knew my pain was valid because everyone feels pain differently. also my family and friends are really supportive. But I did contemplate if I maybe was just really a pain sensitive person and my pain was maybe really just "normal". As I finally found my current gyn and went to the Endo centrum I got completely taken seriously.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I think this is the hardest part. I have to plan around my period and I need to prepare mentally for it. It's an invisible mental load. My family and friends believe me when I tell them how it feels like for me but they don't know what it really means and they can't (im happy for them). I often have to repeat myself every new cycle with explanations because I often seem okay when I took my heavy pain meds. it's challenging navigating the day with being under their influence. It's not that the pain is gone and I'm back to normal, im still foggy, bloated, full of water and extremely exhausted, which still makes me cranky, no matter if I have pain or not. The symptoms aren't only pan and painkillers do have side effects!!!
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My boyfriend + mom are very empathetic so its hard for them to see me struggle. Although I appreciate their empathy it affects me negatively sometimes because i feel like I have to hide my pain so I don't ruin their days because they worry so much about me. I wish they wouldn't pity me so much but accept it as what it is. It comes and goes. When it's there it's hard but its my struggle and I have my ways of handling it. I often feel I can handle it better than them but sometimes I don't know if that's just a really deep rooted mask of mine. They do help me with laundry / cooking / cleaning / my dog a lot tho and don't expect much of me those days which I'm really grateful for.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I did get taken serious by the Endo center and my gyno but sadly the Endo centrum isn't in charge of treating Endo just in diagnosing. My gyno is suggesting treatment that isn't state of the art and she isn't up to date with scientific research. It's exhausting because I have to do her work and try to educate her in a non weird way. It helps that I'm in the medical field myself so I can stand firmly on my decisions even tho she isn't convinced. I wish I didn't have to do all the research for her.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Mostly that I need to plan around my Endo and have to cancel plans sometimes. I am quite a homebody so it's extra sad if I gathered my energy, did make plans once and then have to cancel. Also I am suffering at work often. I have to care for old/sick/mentally ill people as a nurse. I need to be nice to them while I have to try not to faint or cry because my blood pressure drops suddenly, im nauseous from the meds or i didn't have time to take the next pain med in time so i have cramps. It's a theater I'm playing perfectly, nobody there would believe me even though they point out sometimes how pale I look. It's so draining mentally and physically, helping people with a smile while I would need help too. But because I'm not old yet and I look just a bit pale and I obviously am able to work nobody would believe me. It sucks the life out of me sometimes and I have to recover from this charade up to 7 days often
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
My Endo diagnosis is relatively new and the months after it were already planned with a renovation so I didn't get much time to assess my lifestyle. Im looking forward to it this year. I know physical activity + sports while not having my period + having a non stressful boring life help me in preventing too many bad cramp days, but when I have them only my pain meds help.
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?
All those "soft" ideas like taking a warm bath, hot water bottle, stretching, taking a walk are a laugh in my face while I am in pain. I only get help from my pain meds. Taking a walk and warmth overall helps me in between episodes of cramping though to have a short mental break from the pain.
What do you wish you knew earlier in your journey?
That I'm not just a very sensitive person (I am but my pain isn't normal anyway)
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
It helps to see other people just getting what it feels like without me trying to find the right words and needing to explain a ton. It helps to see how they handle a fleeting disability and it makes me feel validated. It helped me to understand that infact, it disables me and my struggles are valid. I only consume the content, I do not participate (my social Media targets dog people) but the community immensely helps. Also it is a good source for new medical studies to educate my gyno 🙄
Are there any misconceptions about endometriosis that you've encountered?
✨Just take hormones and it's all good ✨
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?
I would recommend believing yourself. Maybe you're exceptionally sensitive, but it really doesn't matter. There's a spoken principle in medicine (at least here in Germany) that NOBODY needs to / has to endure pain. That means also overly sensitive people. So no matter if you're "just sensitive" in the end or if you have Endo for real, stand up for your pain and demand answers. Even if it isn't Endo, you deserve clarity and pain medication/ a pain plan!!!!
