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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?
Since my first one, I ve always had painful and heavy flow periods since the age of 11 years old. I got my diangosis at 35 ( 1 month ago - we re in January) by an MRI because the scans didnt show anything and i was getting a lot of pain that didnt relate to food, ovulation, periods ( mainly cause i dont have one being on the birth control pill), etc. the official diagnosis is “ peritoneal and sub peritoneal and ovaric endometriosis “ so i have a lot of abdominal pain when im down
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Painful periods that got worst this year, I confuse them with having some other disease related to the stomach (gluten intolerance, irritable bawl syndrome,etc) so i went to the doctor field of gastroenterology.
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?
A lot of confusion mainly, leading me to search for second, third and fourth opinions. Every ginecologyst had a different perspective abt it. But all of them considered that NOW it is an important issue to be taken care of when it wasnt before. All made very clear that NO, you re not gonna die from it but it is too paintul you ll have to habe surgery. What im most scared is that my endometriosis gets too bad, the adhesions, and they ll have to cut out my bawl.. i ll die if this happens. Im also scared of the surgery itself.. i never had an intervention before so.. yes im 35 but im like a child :/
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I've learn to overcome my illness since its chronical ( cant escape it) and i try to do everything i can to have fun on my good days but WARN people that if i arranged to get toguether in advance and i cant come on the day is set because im feeling bad, they need to believe that its real.. im not kidding or messing around. This storm that is endometriosis pain hits when u least expect it, birthdays, christmas, important work meetings.. Im a people pleaser and feel bad to bail on friends so sometimes i just get up, take some strong medication and just go.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
At first my family thought i overreacted to period pain as a teenager and in my 20’s, it was really a nightmare but they werent in my body so they couldnt tell. But since it became more serious yes, they re totally on board.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Funny to ask this, im between doctors because i wanna clarify if i should get a surgery or not. One said its up to you ( the one who gave me the diagnosis) if you keep on the birth control pill, this will take care of your estrogen level ( keeping it low) and ur endometriosis wont grow. But if you re in too much pain we will have to remove it ( the adhesions by laparoscopic surgery into belly button) and u have to keep taking the pill afterwards otherwhise it will grow back again else where or same place. This is what im trying to verify and to decide because i have 2 good weeks and relapse and the cicle keeps repiting itself so i dont think thats ok.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
All of them sometimes I just take strong pain medication and go but I'm not in a happy place
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
I would expect that changing my food habits ( following a gluten free diet, suplements, avoid foods that swollen the bawls) would help, but it didnt. I think that doing pilates is what calms my pain, relaxes me and puts me in a good mood.
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?
Diet, some pain killers
What do you wish you knew earlier in your journey?
So many things, I wish I never stopped taking the pill maybe in that way I could have prevented it
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Coming from different countries they dont have all the same aproach to the illness. Also is good to know people that are in your same situation.
Are there any misconceptions about endometriosis that you've encountered?
Of course, that women are too dramatic and overreact to period pain, that is normal that it ll happen to you just for being female
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?
To get an MRI before a laparoscopic - exploratory surgery, if you’ re like me that never ever had a procedure.. it might be scary. That is an option that will show your diagnosis, at least here in Argentina. To do it in your 20’s and not wait so long, now everyone is more aware of the illness. To freeze your eggs altought you think you dont wanna get pregnant at that moment, getting pregnant with this disease is difficult. To have a lot of period pain, pain in general outside ur menstruation cicle is NOT normal, do check ups with one or more doctors if neccessary.
