hey yall,
i (18f) have had extremely painful periods for the past several years. i don't really remember my first year or so of having them, but i don't think they were this bad at first.
a couple months ago, i got on the road for getting diagnosed, and have another appointment in a couple of months, but ive been thinking of some things that didn't click to me yet. well, really just one thing.
●which is- whenever ive read about endo, ive only seen people who seem to have pain for the entirety of their period, as well as when they're not in their period, and many things can trigger worse pain.
however, i only experience debilitating pain on the first (and sometimes second) day of my period, where i have to take prescribed pain management, as well as trying herbal remedies and a tens unit, all of which doesn't fully ease the pain, but does keep me from wanting to off myself right then and there. and even then, most of the time i lay there waiting for the meds to kick in again, and hope to sleep through the worst of it.
BUT- it's only the first (and sometimes second) day. with pre-cramps anywhere from three days to a week before (but those are manageable without any meds or other pain relief) ((normally the most pain on my second (and third) day, is soreness from the cramping on day one))
when i first went in for labs, and to speak with the doctor, she said she believes that i have endo (she and her daughter both have it) but i hadn't been able to list ALL my symptoms, as my mother was present, and im not comfortable even having a "causal" conversation with her lol (but that's besides the point). my doctor is a very lovely lady though, and im greatful she's not just brushing it off, like i hear of so many doctors doing.
do yall think it could still be endo? ive not heard of endo with pain only being on a couple of days- it seems to normally be more constant and chronic for most people.
TLDR- could it count as endo, if the majority of the pain is only the first day of my period?
The amount of pain or number of days of pain can very from person to person. Some people can actually have severe endo and no pain while others only have a few days of pain, others have pain during ovulation and their periods and others like me eventually end up with chronic 24/7 pain that flares up and gets severely worse despite not even having periods for years now.
goodness, thank you for informing me of this, there's so much i don't know yet.
It took me until my late 20s and early 30s and years of fighting for answers and then fighting for surgery after my lung endo finally led to my endometriosis and then adenomyosis diagnosis. Thankfully at the time Facebook groups for endo had become popular and led me to resources like ExtrapelvicNotRare Endo's Facebook group and website as well as the Center for Endometriosis Care in Atlanta's website and to doctors' who posted info like Dr. Redwine who passed away afew years ago now, as well as Dr. Possover who specializes in neuropelvologly and trained my first surgeon because my pelvic nerves were being compressed. The hardest part back then was finding correct and up to date information since many sources still listed endo as being uterine lining (it's not, but acts similarly) or believed it was still caused by retrograde menstruation which had long since been debunked. Being informed and having someone come with me to my appointments who knew the info I shared and saw my struggles since the night before my first period when I was 12 was a huge help in helping me advocate for excision surgery and my first bilateral VATS.
As someone new to potentially having endo myself, I’ve often wondered if certain symptoms elsewhere in my body are related to endo. I am confused however, from my limited research I only see surgery happening in the lower half of the body. How does endo get diagnosed elsewhere like in your case?
In my case a thoracic specialist and thoracic surgeon worked together to run tests and eliminated all other possible causes even though symptoms and it being cyclic pointed to it being endo early on. They also saw blood in my left lung during a broncoscopy before referring me to an endo specialist. Unfortunately in Canada only two specialists had encountered lung endo and they each only had seen a couple cases each and the only one where I lived I was his third patient and he told me my only option was to be on Lupron and in menopause until I went into natural menopause (I was 29). I only lasted about 1.5-2 years and still having a cycle between each 3 month injection, suffered brutally from the side effects and it didn't completely help my provocative or thoracic pain or symptoms so I refused another injection and got dropped as a patient. It took until I was 34 to get my first lap excision where they removed DIE from my liver and diaphragm. Before then my partial lung collapses had started and my last CT before my lap showed my right lung had a "really odd appearance" to it. It took almost two more years to get my first bilateral VATS with a thoracic surgeon who had experience with lung endo. By that point the top and bottom of my right lung were so damaged from the endo they had to be removed, but he couldn't identify the endo on my left lung which started my symptoms and where my lung collapses were happening. I had my second bilateral VATS with the thoracic surgeon who took over for the one who did my first one and my endo specialist who had done my second lap excision 6 months before and they removed more endo from my right lung and finally found the endo on my left lung. All my other symptoms have returned since my surgery 2 years ago but thankfully I haven't had another lung collapse since then.
I only ever had pain on the first day back when I was your age; it got more widespread and altered with age.
It’s such a weird disease, some people can have no pain and extensive endo and they didn’t even realize they had it. Mine was progressive, i always had period pain but never debilitating, then it got worse and worse, eventually being all month round with no end in sight, so in my opinion the earlier you catch it the better so there can be intervention before the pain becomes constant. Good luck, I’m only a few years into my experience but I have tried everything and I’m not sure what else to do now, going down the colorectal route soon, and I hope I can get back to normal life but I doubt it.
goodness... im not looking forward to it potentially getting worse. i hope you're able to find answers and relief