New to Forum : My Story

[mrsgreenjeans]

Hi all my Endo-Sisters :) I am new to this forum and wanted to share my story. Unlike a lot of women on this forum I am at the end of my journey with this disease but not quite through yet I am still currently living with it. I am 28 years old, married to the most wonderful man and diagnosed with severe Endo 10 years ago. After my first Lapo I spent 9 years searching for something! anything! to relieve the pain! I have tried every OTC, patches,heat pads,acupuncture,diet,vitamins,holistic meds,narc pain meds,birth controls,shots,study medications,massage, .... and the list goes on. In my case the Endo has been VERY aggressive and 8 months ago I had my second Lapo which confirmed Stage IV Endo, Severe Pelvic Adhesive Disease, Adenomyoma, Fibroids,rectal/colon and intestinal endo,endo on bladder,clubbed tubes (tubes are fully blocked), large amount of endometriomas, and etc... lets just say its BAD! All of the endo was not able to be removed because of the extent of the adhesion and the areas around the colon and intestines that the surgeon did not feel comfortable removing, also they left a 6 cm mass on my uterus that they felt would hemorrhage if removed and cause an emergency hysto. So they sewed me back up  and sent me to Fertility Specialist who confirmed that my tubes and uterus have to come out, my uterus has so much scar tissue and has been deformed from the endo that I can never carry a baby to full term, my tubes are totally blocked and clubbed from the endo! Sooooo, I plan to preserve some eggs in hopes of one day having a seraget, My journey has lead me to this place and I know what my only option is from here, I just pray to finally be pain free and to live a better quality of life and for all the women who no matter what stage you are at in your journey and what path it will take you on, I hope for you all to be free from this painful disease! God Bless You and Good Luck :)

[mrsgreenjeans]

Im sorry you are going through this as well! All of your symptoms sound like Endo....back, hip and leg pain, razor blades in your ovaries and uterus, HEAVY and CONSTANT bleeding ! ( I bleed for 2 weeks and my cycle is every 21 days!) One thing to look for is old blood! Dark almost black almost like coffee grounds, low grade fevers, flu-like symptoms during menstruation, pain during and after sex, more severe cases blood in your bowel if endo has grown on your colon or rectum. I would tell your OBGYN you want to have a laporoscopy done ! I tried birth controls and pills and shots and I would bleed the whole time i was on them. The only thing i can say as far as help with the pain is to also take an anti-inflammatory along with pain medicine and ZANTAC!!! Idk know how it helps....a pharmacist told me years ago when i was so desperate and hysterical i went to my local pharmacy and begged the pharmacist to help me find something OTC that would help! And it does a little :) The only thing that helps is for them to remove as much as they can. But keep in mind there is no cure for ENDO even after surgery, it will come back! I wish you the best of luck...be aggressive with your doctor and demand that they find out whats going on!! It is not normal to be in pain EVER!

[Des_a_rae]

My goodness!!  That's awful but I'm glad you have such a wonderful outlook. I know I commented on your other posts but I wanted to comment here as well.  I'm 31 and I think I have endo on everything possible to have endo on. For the last 8 years now my periods have become just awful. My pain went from normal menstrual cramps to pain that makes me throw up, I pass out. I don't even fool with tylenol anymore. I'll take a pain pill and this is the only thing I have to take a pain pill for thank goondess but even the pain pills don't help anymore. I've tried the whole heating pad stuff, sitting in a hot tub of water..nothing helps anymore. Thank goodness with the pain pill even though it don't phase the pain it knocks me out so I can sleep through it.  As far as the bleeding goes I would bleed so much. Over the last couple of years I would bleed during sex, after sex, inbetween periods. I'd have 2 periods in one month or skip a month. They're never on time always bounce around. So finally when I got my insurance I went to the gyno. My first gyno listed that I has possible fibroids so that right there put a stop to my insurance paying for anything else other than birth control pill because my fibroids were considered pre-existing.  I was so angry with my first gyno because they never told me that. I found out from the office after I called about my insurance paying for an HSG test and she said "no because you have a pre existing condition"...all NEW TO ME!!  Anyways, so I went to a new gyno who is wonderful. My only option was birth control pills to stop my bleeding. I'd been bleeding for 18 days straight on top of hurting and I was tired of it. The birth control helped for a little while. About 5 months and I've been on them for a year now and since December I've been bleeding inbetween again and my pain is back. I go back to the dr. on the 24th but I'm just curious what your symptoms were?  I not only hurt constantly in my lower back and stomach. My ovaries hurt and have really sharp pains and I have pain that goes down my butt cheeks, my thighs. I've had blood in my stool before and there are times when i'm trying to have a bowel movement and have to stop because the pain in my ovaries and lower stomach hurts so bad.  And now it looks like the lower left side of my stomach is a little bigger than my right.The "swollen" part has been there for about 4 months now.  I had an ultrasound done in April and they said I have cysts again but also said that since I have been on birth control for so long I shouldn't have cysts. I don't know what's going on. I just know i'm tired and ready for it to be fixed. I'd LOVE to have a child there's no doubt about that but I talked with my husband and have decided that if I can't..then I want it all taken out. I don't want to hurt and live like this for the rest of my life. Anyways, sorry this was so long but ty in advance for your help.  

[Becky2006]

I am sorry to hear that. You are the first person I headr about who has it that bad. I started with what I was told stage two cervical cansor, had a leep procedure done in 95. I kept haveing more pain, was told I was a woman. After several years I finally was sent to an ob as a referl, explained the pain, all he went in, saw I needed a partial hysterectomy. So I have one ovary now, am so glad that pain is gone. I do have two teenage boys from a previous marraiage. I would have love to have a girl but I choose to have my tubes cut/tied at 22. I do not regret it to this day.I wish you the best becomeing a mother some day.
Hugs-
Rebecca