i am 18 in the uk with suspected endometriosis and have been having insanely painful periods since my first one, especially struggling with anal cramping. when i was 14 i had a pain induced seizure from the butt cramps which lead to me going on the pill for over 2 years. i was a bit annoyed at the time that they wouldn’t investigate into it further but i was young so i brushed it off.
i ended up being in a&e with the worst 10/10 ovarian pain ever after starting my first combined pill so was put on the mini pill for a few months but that caused constant bleeding so i got changed to a different brand of combined pill that i took for 2 years.
i was still experiencing so many symptoms on the pill even outside of my pill breaks (which were every 3 months) so when i was 16 i went to the gp and said i want to find out if there’s underlying causes and she said it sounds like i could have endometriosis and made a gynaecology referral.
6 months after the referral was made i came off of the pill, after consulting a pharmacist, for many reasons. i struggle with health anxiety and i was constantly convincing myself i had blood clots, plus i was having headaches and extreme breast growth (i was a D cup before and i went up 5 cup sizes) which was really affecting my mental health.
i also felt like i couldn’t remember how my natural periods actually felt so i wanted to get a recap before my gynaecology appointment. and i just didn’t want to be on the pill anymore as simple as that!
since stopping the pill 8 months ago my periods have been extremely irregular. sometimes my cycle is 20 days and sometimes it is 60 days. during these long cycles i start getting awful pelvic and leg cramping and it feels as if my periods about to start but it still doesn’t come for weeks longer.
finally i had my gynaecology appointment yesterday and i was really nervous they were going to tell me there’s nothing wrong and i should just go back on the pill… and that is exactly what happened🫠🫠
the second i told her i had stopped the pill and didn’t want to use any alternative contraceptives i was looked at as if i have grown a second head. she asked me why and i only said about the blood clot anxiety because i was too embarrassed to say about the breast growth and totally forgot to mention the headaches.
she also wasn’t believing that i was even on the combined pill because “on the combined pill you would take a break every 3 weeks not every 3 months” even though i clarified so many times, she kept on questioning me at least 10 times throughout the appointment. i thought 3 monthly breaks were common if you’re on the pill for period related reasons!
we spoke about my history for a while, including my family history of endometriosis, adenomyosis, and pcos. she suggested we do an ultrasound to look for underlying issues as the fact i am experiencing so much pain opening my bowels is concerning. she said deep endometriosis can be detected on ultrasounds, i don’t think that is very likely but it was a start to a diagnosis so i agreed.
she went to run it by the actual gynaecologist who wasn’t in the room and didn’t speak to me at all and once she returned she suddenly went back on everything. the gynaecologist said that theres probably nothing underlying so an ultrasound would be a waste of resources and that they will discharge me and i need to go home and think very hard about going back on the pill. i also got a speech on how unlikely a blood clot is for me but unfortunately health anxiety doesn’t care about likeliness and the leg pain i am getting all the time, probably from endometriosis, always makes me panic that ive got a clot.
i really wanted to stick up for myself but once i heard that they won’t do anything after i waited over a year for this appointment i was seriously about to cry so i couldn’t get any words out.
i went and cried in my car and immediately contacted my gp again asking them to refer me for an ultrasound directly😪 haven’t heard anything back yet though.
i am just so annoyed how they can even say there is nothing underlying considering i told them every single woman in my family has an underlying reproductive condition. people don’t have seizures from “just period pains”, people don’t faint on their bathroom floor every time they need to poop on their period from “just period pains”. even if it isn’t endometriosis something is clearly wrong.
i am so worried that by the time i get diagnosed my organs will be extremely damaged. so annoying.