Stage 4 I Just Found Out I Even Had Endometriosis!

I have just found out I have Stage 4 endometriosis and am not sure what to do. I turned 30 and my periods got heavy I was in pain all the time.  I just thought with age it go worse so I dealt with it until 2 years later when my periods go longer in the bleeding was to much to handle.  I went to my doctor and they found fibroids first he tried birth control so many I lost track and none helped.  He did a DandC and removed the fibroids 3 weeks later the bleeding was back.  I did not know what to do my husband and I planned on having a child I have a 9 year old from a previous marriage, so I waited and 10 months of hell My Dr said I had to make a decision and suggested a ablation I researched it for months before saying yes. 3 weeks ago I had the surgery he did a ablation, a dandc and a tubal ligation. Recovery was horrible for me I was admitted into the hospital I was sick could not get up.  Miserable!  I just had my visit to discuss my surgery and he told me while he was in doing the ablation he was shocked to see I have stage 4 endometriosis he said it is the worst case he has seen it has spread to my bladder.  I have been going through a array of medical problems on top of all this.  I have IBS, I have severe back pain, I am anemic, I had a kidney stone 1 week before surgery, a rare viral infection the year previous to all of this.  So many things have went wrong, the info I am reading now says low immune system is a symptom of this disease. I am confused I want a second opinion and am looking now at a Dr. in NYC I just can not believe all this time has went by and it went un detected.  Is this why I have beeen so sick or what?  Anyone who has a answer please tell me what next?

KSArkow KSArkow
31-35, F
3 Responses Mar 17, 2009

Find a doc who uses Tempol the SOD mimic. Endometriosis will be gone gone gone

i wish i could tell you it would get better. but i have stage 4 and my doc said he wants to take my girl parts out i am going to a specilist in penn university next week to see if there is anything i can do. the pain is driving me crazy i want to jump out a window and die

Oh dear. I have/had Endometriosis Stage 4 I and after dealing with it for several years I had to have a Total Hysterectomy. <br />
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I had monthly shots of Depot Lupron with some success as I was told to have the hysterectomy at 35 and I managed to keep my ovaries and uterus until I was 44. <br /> is a good website that has a lot of information and a support group.