My stage 4 in terms of pain is completely different than someone else's stage 4. At stage 4, I may have less pain than someone with another stage, but I may have more. It depends on your individual pain threshold and what you do to prevent the pain. At stage 4, I can have a UTI and not really be in pain. It's a good thing and a bad thing all at the same time, because I may/may not realize I have a UTI. I prevent a lot of the pain with lifestyle changes-what I eat, how much I exercise, holistic treatments.

Hi

I was diagnosed with endo 4 in 2013 and had surgery 1 October 2013 -
They did a bowl resection 22cm - bladder rescison, laparotomy.. Etc I never had endo pain before I knew I had any only diahrrea on the day I started menstrating other than that I have no other pain, it really all boils down to what you eat and drink, in all honesty I don't consume any caffeine, alcohol or fizzy cool drinks besides a coke here and there for digestion, I also don't eat any wheat, gluten, fish oil - no breads pastries etc.. I take a very important probiotic that I recommend to almost everyone and I drink a special shake that has all the replacements I need that I don't get from what I don't eat, these are not over the counter things you need to order them.. We haven't fallen preg yet it's almost 2 years since my op and I have little diarrhea but no pain, other symptom include "hot flush" like feeling and slight nausea before my period. I hope that by Gods Grace someday their will be a cure to this disease, it can be managed by what you eat so maybe tial and error it for a month or so.

I was diagnosed in June 2014
After years of painful periods, with the last 2 years of periods being so sever I would vomit, pass out and be doubled over with pain, I couldn't walk from the bedroom to the toilet without the worst pain imaginable, like labour pains, at one point curled up on the bathroom mat I thought I was in labour!
I rang 111, I rang ambulances and even took myself to a&e to be laughed out as the girl with heavy periods,
Finally I was sent for a scan, it showed a 10cm by 10cm cyst on my left ovary, multiple cysts on my right, bowel stuck to womb stuck to bladder, a right mess really.
I had surgery in Dec 2014 to remove endo the bowel was so bad they didn't want to tackle it without a bowel surgeon present, so I was rescheduled further surgery, in that time I was put on zoladex injections every 28 days and had the coil fitted, I then had to meet with stoma nurses with risk of me needing bowel removed and having to have a bag
April surgery came again, luckily no stoma but a lot of mess again had grown back on my ovaries as well as everywhere else, still on zoladex injections and a new coil fitted.
It was then made clear that I would always need further surgeries to clear up regrowth, which at this point had made only slight difference to my pain but not much else, I'd lost money through time off work, I had a small son who needed looking after and all this disruption every few months

So finally in Nov this year I have had a full radical hysterectomy to rid me of the endo and regrowth for good, fingers crossed, I am just over a month post op and so far this week has been my best week, I am on hrt patches which I only started this last week so not sure what effect they are having just yet, I am having hot flushes and trouble sleeping so hoping that eases soon, I'm taking natural supplements too and a healthy diet, and just trying to take care of myself, I am only 27 so I want to stay as fit and healthy as can be.
I hope my story helps others and if anyone wants to ask questions please feel free to, I try to be as open and honest as possible, I tell it like it is x
Fight on endo ladies xxxx

For me, stage 4 is rectovaginal mass that has adhered my uterus to my colon, small vowel, adhesions and lots of scar tissue to start. I have lots of pain, swelling and pressure. My treatment option is a hysterectomy with a bowel resection as well as clean up and endo excision in October. The best option you will have is to find and endo specialist. Not all Gyn are trained to handle endo.

In my twenties after years of severe pain during my cycle I started passing out from the pain and sometimes passing out before the pain even started!
In June of 2013 at the age of 29 I finally had a lap done through the Pope Paul VI institute of Omaha. When my surgery was over the doctor said I had stage IV endo with adhesions that appeared to have gone through my small intestine and also all over my reproductive organs. This made a lot of sense because I had tried to figure out for years why I had so many intestinal issues, especially before and during my cycle.
A month later I had a laparotomy, the surgery lasted 5 1/2 hours so that the doctor could cut out all the adhesions to help prevent them from coming back, and I also had a resection of my small intestine which had been twisted and damaged by the endo adhesions growing through.
After a long recovery, I felt SOOO much better when I had my first "normal" cycle three months later! For the first time since I was 13 I didn't have to take pain medicine around the clock during my cycle. I finally realized what other people were talking about when they had cramps, what I had felt for years wasn't normal and it wasn't cramps, it's was the endo!
About a year and a half after my surgery my husband and I finally got pregnant with just some help from clomid and hcg injections. Now I'm holding my precious 6 month old as I type this!
When I was first diagnosed I wasn't sure if I would ever be able to have children but the compassionate doctors and nurses at Pope Paul institute in Omaha, Nebraska helped me through every stage and helped me realize all the pain I had been in was not normal.