Hey welcome to the community :) hopefully I can help.
First I have some questions for you. How many surgeries have you had? Were they excision or laser? Were they done by Endo specialist?
I too suffered a very Long time 14 yrs to be diagnosed and now 8 yrs later I am doing pretty well pain wise as I don't get a period as I am on the bcp continuously.
The key to optimal relief and better quality of life is excision (cut out) surgery. Laser is used by unskilled surgeons and it only removes the surface of the disease and you want it cut out as estrogen feeds the Endo growth and estrogen is inside the Endo lesions so if you don't fully cut them out they will just continue to grow and nothing will help.
Lupron and visanne I did throughout the last 8 yrs. Lupron 9 months and visanne 3. The depot shot though I have no done but I would expect the same results as Lupron however some people like that a lot better than Lupron. It should take the same time that it took Lupron to kick in as well.
The problem with Endo is that there are not a lot of excision specialist that can cut out this disease effectively and that is key. I know women that have had up to 24 surgeries!! If done right that will never happen.
Let me know and I might be able to help find you a proper surgeon as well if you haven't seen one already.
Thank you for the response so quickly. :) I think I'm going to like this forum. It's about time I joined a good one.
So, I've had two surgeries. The first one was done by a terrible no name goofball doctor and he was so unskilled that it was only a diagnostic laparoscopy. He cut so far down below my navel that I have the ugliest permanent scar and I experienced a painful 3-6 month recovery which was a nightmare of epic proportions! After this surgery was when I was treated with the Lupron. I could only endure 3 months of that drug. What I went through with that doctor was truly terrifying and made me feel hopeless back in 2001-2002.
Needless to say, this scared me away from surgical procedures for a good few years.
Once I could take it no longer and realized I had to do something I hopped on the internet and started searching for both options and doctors like crazy. That's when I found my guy; the doctor I truly knew was mine. He is the Co-Director of the Boston Center for Endometriosis, Director of the Division of Reproductive Endocrinology and Infertility at Brigham and Women’s Hospital, and Professor of Obstetrics, Gynecology and Reproductive Biology at Harvard Medical School. He's been on TV shows, news programs, you name it....and after meeting him with his kindness & intelligence I knew I was in the right hands and felt hope for the first time. He assured me I would never go through the improperly treated surgical nightmare I went through with dr. no-name as long as I was in his care. I felt so hopeful, in the best hands in Boston.
So, at that time he did perform a hysteroscopy and laparoscopic laser removal surgery, to my knowledge, but it was so long ago now. He also referred me to a top of the line pain management program which I went to for years. This was around 2004-2005 and I'm not even sure if this group had performed laparoscopic excision at that point in time. Thinking back, though, I do recall either him or another doctor talking about "cutting it out". What he actually did is all so foggy now. Some people might not like that he can sometimes be a little vague in explanation but quick to get to work, but I just love him and he gets the job done well. I trust him with my life. He performed the surgery so well that when I got home I didn't even know I had surgery at all. Whatever type of removal he actually did do, I got years of relief from it.
Two years ago I experienced significant traumatic stress and the chronic pain started coming back with a vengeance. No idea if there was a correlation but it sure seemed like no coincidence. Your post brought me to curiosity so I did some quick research and it does in fact seem that this group performs excision surgery. I will be having my second surgery through him in October and that date honestly just can't come quick enough.
I apologize for the very lengthy response, but I wanted to share my full history. I was hurled through the doors of emergency rooms every month starting at the ages of 15-17. I am now 31 years old. I never thought back then that this would consume and ruin my life in the way that it has.
This is what I can tell you after some research. Depo is not used for Endo treatment so you might not get any use out of it.
Also I will tell you that laser will only cause more issues than necessary and the problem is that there are not enough excision surgeons in this world to help patients. I had deep excision surgery in 2007 and didn't realize he used the laser until my surgery this last feb when carbon residue was found on the bladder flap. It is imperative for your quality of life that you find the best of the best and I am not sure if the surgeon you are seeing is but I can do some research for you to see.
I am an advocate for this disease and help a lot of people in the right direction. The only cure for Endo is excision period. Even after that there could be traces still behind that are not seen but a good surgeon patients will have no endo up 50-60% after the first surgery. The rest the pain is limited with minimal superficial Endo. No medication like, Depot, Lupron, Mirena, Visanne, BCP etc will stop the growth of Endo, its purpose is to stop periods and ovulation so that you don't have pain after excision is done. That being said I have been on the pill for 8 yrs on and off with trials of Lupron and Visanne but no thanks its not worth it and the side effects of the pill are a lot better for me, but everyone is different. If I was to come off the pill the pain would come back but not as bad. I had severe Endo deep into the pelvic wall and had deep dissection along with bladder resection and removal of rectovaginal Endometriosis. I also had a PSN (Presacral Neurectomy) done where they sever the nerves from the uterus to the spine to stop the pain signal from going to the brain. So along with Excision not sure if this helped but some surgeons do this for patients that have DIE (Deep infiltrating Endometriosis)
It took 14 yrs for me to be diagnosed and I diagnosed myself, found the best surgeon to confirm. Surgeons are limited and he refused to do another surgery on me because he said I was too high risk and too much damage was done the first time around so I was sent to the pain management clinic where they hopped me up for a year on unnecessary medication before another surgery in which it was botched as she was a baby doctor not an Endo surgeon. So that being said I am pushing for out of country surgery in Georgia at the Centre for Endometriosis which has a very skilled surgeon, just crossing my fingers my insurance will accept this as the top surgeon in Canada refused me.
This too has consumed my life, and I see no end to it all since it took so long to diagnose but the damage was done to my bladder, ureters and bowels. So I am always in pain with those areas. It ***** not going to lie but I was glad I researched and found the best surgeon for my first surgery as I have read and met women with horror stories of having 24+ surgeries because of the lack of skill of surgeons. Its a nightmare and the awareness has to be out there in order for things to change. Slowly its happening as 30 yrs ago there may have been 5 excision specialist now we have around 30 worldwide, but for a disease that effects millions of women worldwide this is completely and utterly unacceptable. If a man had this disease they would not suffer the way we do as the changes would be made for them. Just my opinion of course. :)
Hello, I found that for my endo it took about 2 months for the pain to completely clear up. I'm so glad I can finally lead a normal life and leave the house more than just one week out of the month. I had such excruciating pain the week before, week of, and week after my period. I didn't know how I would keep on living until I found depo.