im new here endometrios and endometrial cyst diagnosis sort of?

[evilpunkypie]

hi guys newbie 32 year old here found this great website and have been reading some forums and questions on here for the past couple of weeks to try and sort of see if others are going through what i am..some answers to questions are somewhat similar..my symptoms of weirdness i guess started when my periods started at the age of 12 they were horrendous painful things, couldn't get out of bed for at least 2 days with them and always having to take dissolvable tablets for the pain..fast forward to the age of 17 then i just stopped having a period for a whole month which my mother noticed and frogmarched me down to the doc to see if i was pregnant which i wasn't...any way things went back to normal, my periods didnt hurt anymore..i have a child at the age of 21 everything is normal then at about the age of 23 24 it happened again but this time i bled for 2 month non stop very very heavy i thought i was bleeding to death! went to the doc told them what was going on...not much help really palmed me off with tablets to stop the bleeding..put it all down to suprise suprise STRESS..the tablets didn't really work and it just slowed down and stopped eventually...anyway those are the symptoms back then....fast forward to nowish..back in feb last year i woke up in the middle of the night in absolute agony went downstairs to go to the bathroom my stomach was killing...my partner was asleep so i crawled back up the stairs to wake him and phone an ambulance the pain was nothing i have ever had before in my life..anyway ambulance came checked me out just put it down to something i ate!!! made me take paracetamol and off on there merry way they were...then the next day aunt flo arrives...and it was bad...fast forward a couple of month later i get constant pain where appendix is go to urgent care again get fobbed off stomach bug! honestly do doctors think i don't know the difference between sickness and dioreaha to some other pain!...september 2020 start back at work that month was the lightest period i have ever had in my life....november get furloughed and that's when the pain starts again but this time constant pelvic pain and pressure also bloating and spotting..so again doctors... they think its either an sdt! which is insulting seem as though me and my husband have been together for 9 years!!!an infection...turns out to be yeast infection but pelvic pain still didn't go away after treatment then they thought it was a strep b infection and packed me off with antibiotics..guess what still didn't work..got a referral to colonoscopy they found a large cervical ectropion took a biopsy and magnesium nitrate and off my pop again..can you tell im getting a bit sick now :)..fast forward about a month biopsy came back no abnormal cells just inflammation.

again still have symptoms apart from bleeding at this point and doc sends me for bloods,urine,stool tests all come back fine..sends me for scan...then that's when they found 2 cysts..pushing against my bladder but that's about as much as they told me... got no letter from the doctor about it..i rang didn't really understand what he was saying as these days doctors are just to quick on the phone..referred me to gyne at hospital my app was march 2nd gone...my period in january and february was hell it felt like acid was being chucked into my insides i couldn't stand up properly i was bad for about 2 weeks it starts bout 4 days into period.. no pain killers shifted it..got so bad i went to urgent care again in feb..to be told by the doctor there from the looks of the scan i have 2 endometrial cysts and endometriosis..got codeine and antibiotics as my wee was red! and burning bad..

march..gyne day..get handed a form about endo and mark down my symptoms see the gyne and does internal...asks questions then tells me i have 2 cysts 1 6cm the other 8cm! endometriosis sent me for an mri friday gone to see how deep it is and if the cysts are what they are..and then proceed from there..he mentioned injections and surgery to remove the endo the cysts and to reconstruct my overy..didn't say what stage i have but im guessing its severe..i'm frightened and scared and cancer keeps going through my head!..never had a surgery in my life... sorry this is so long this is my story and how long its took for me to get diagnosed even though i feel like its still not really properly diagnosed...now im just waiting on mri results and the consultant getting back to me....

[Hidden]

Hi there EvilPunkyPie, (that's a fun username, by the way).

It sounds like you've been through a heck of a lot lately with pain and back and forth to the doctors. I'm sorry to hear that it's been so difficult.

I completely understand the feeling of being frightened, not being sure what's coming next.

I think it's very good that you're having an MRI scan before a potential surgical approach is discussed. You've probably seen from the posts on the forum that the way to diagnose endometriosis is a laparoscopy (a small surgery), and having the MRI first means that more information will be available for you and your doctors first. That's excellent because it potentially saves you an extra laparoscopy (e.g. one to take a first look, and then potentially a second one to do some of the more tricky work if that's required).

If it makes you feel any better, from what I've read, endometriosis is far more common than cancer (it's the worry I had as well at the beginning of things for me with endo). And, endometriosis is something that can be managed - it's not fatal in itself.

I've had two laparoscopies now, and they were much better than I imagined. I was scared silly before doing them, but it turned out ok. I am a fan of general aesthetic - it means I got to sleep through everything while the doctors did the hard work, and the surgery itself was painless for me. In my comic-strip imagination, it was kind of like being a passenger along for the ride. It does take some time to be feeling back to normal after, but I benefited from the information I gained from them.

Hope that helps a little. Good luck

[evilpunkypie in reply to Hidden]

hi june_viola thank you for the response back very kind of you..hopefully the mri will comeback with news but not so much bad news..whats confused me though is i had the mri on friday the 12 and on monday i got a letter to see my consultant on the 15th of april (cant forget that date its my husbands birthday) but the letter was dated the 11th when it was sent out..weird..don't know if the hospital waiting times have calmed down now? but the appointments seem to be pretty quick not that i'm complaining but just freaked out by the quickness of them..i feel a bit better with others and you being through the surgery i guess i just don't like the thought of losing control of myself while i'm being put to sleep.. i'm definitely going to be going through the surgery its just seeing what my results are going to be and then go from there..but unfortunately due to covid he said he doesn't know when that will be..thank you for taking the time to reply back to me!