Im so glad you joined this site because you will find a lot of support and love here, when no one else seems to understand. Its not easy dealing with the pain and having people think its nothing! Its horrible to not have compassionate support for such a painful and frustrating disease. You can send people webpages about what its like having endo. Mainly, I learned to just ignore people who are unkind and to find my strength from people who show me love like a few family members, the women here, and one nice doctor who showed kindness. Consider the girls here your family and friends because we do get it, care for you, and will give you strength when you need it. Hang in there. Hugs!

Thank you for your post. I am really looking forward to the support of this group and being able to support others. We all have to stick together! Thanks for your advice about dealing with people, it's definitely something I'm gonna have to work on. Your support means a lot!

I have been struggling with the same issues. I think after people know what the disease is they think about the pain and that's it. They don't understand the severity of the pain and how often we have to hide how we really are feeling. Behind the pain lies the emotional baggage the disease puts on you. The things people don't see like the crying over pain, frustration, fertility issues and stress are the worst. People in my life have a hard time understanding why I do the things I do to deal with my issues; I finally had to tell them they don't understand, they never will understand but I need them to be as supportive as they can. With everything we have to deal with, family and friends being intolerant and not understanding is the last thing we should have to deal with.

I completely agree! We need our family even if they don't understand, just wish there was someway they would, yah know. It's good to know there are others feeling the same way and that we can all talk about it so we can get our thoughts out to people who understand. Thank you for your input, it means a lot!

Hello P=)

WELCOME to DS where you'll find tremendous support as you battle this disease. It is TRUE that unfortunately this disease is not recognized by SO MANY "civilians"...even more frustrating are the "doctors of women" who are clueless. My experience throughout my diagnosis (which was too late and had reached stage 4) came far too late. I feel like most of us suffer for years with no diagnosis being told we're psychotic. If/when we do receive diagnosis MOST doctors don't truly know what to do about it. Often times they do more harm than good with chemotherapies and surgical procedures with a false promise of "cure". We who suffer know THERE IS NO CURE.

It is up to us who suffer to advocate on our behalf, often having to aggressively seek acknowledgment and treatment of this evil toad of a disease. We must not let this identify us as women, but we MUST support one another through our struggles. I'm just so exhausted from my continued battle.

Funny, but not "haha" that my PM doctor told me in May that if the Oxycodone was not maintaining serum levels between dosing (relief ending before next dosing) that perhaps I should practice "distraction techniques". Distraction? Are you fucking kidding me? Let me knife rape him through his penis and rectum, while he's cramped double with diarrhea or no hope of BM for 9 days, as his body bloats and distends beyond recognition. Then I can maybe sprinkle in some devastating spinal/joint pain requiring nerve blocks/epidurals. Perhaps he could practice some imagery of being castrated, neutered and robbed of his ability to have children much less intercourse. GR-R-R Yea, I get distracted just thinking how much I'd like to torture the ENDLESS fucking doctors who have betrayed me since adolescence...starting with PM doctor.

Bitter? YES Pissed? YES Homicidal? YES Suicidal? YES

Thank God I have the DISTRACTION of contract deadlines worth quarter millions of dollars with per diem penalties if dates aren't met...not to mention the reputation of my husband's and my architectural/design firm. In my "spare time" I am the textbook over-achiever who can never DO enough, GIVE enough or BE enough to please the parasites in my family. My 88 year old mom (who is the spawn of Satan...beyond abusive my entire life) is a constant source of stress and heartbreak, although she lives in a nursing home. The facility has me on speed dial 24/7 as all 5 of my siblings have abandoned me. I oversee her healthcare, eye care, wardrobe, hair cuts/color...even manicures and pedicures. All the while she curses me and SPITS food in the floor that I have home cooked and driven several miles to bring her. Yes, I have 2 sisters and 1 brother who live locally...but the only thing they offer up is criticism.

This past weekend was so horridly overwhelming with my latest curse of shingles in my right eye/face/scalp. It hurt to cry but I did. This is the psychotic part...I cried for my need for a mom to comfort me and make me feel better...for a phone call from a loving sibling or close friend. OOPS, I NEVER had that in my entire life. My poor husband did his best, but he's teetering on the edge from stress just like me. He suffers from med-resistant HBP...genetic, deadly as his father died @ 45 of a massive heart attack (while they were playing golf). He not only witnessed his dad's death @ 16, but inherited the predisposition for the same fate. He has been treated by cardiologists since 1986. He takes 4 anti-hypertensive meds and 1 to regulate heartbeat/rhythm. The meds make him feel like shit with their sedating effects, yet are a necessary evil. YES, I BITCH because I remember the years when he worked all day then played in a local band 5 nights a week. Oh...and "enjoyed" the many "perks" of local celebrity which almost ended our marriage. I've tried so hard to lock those feelings away because I'll never be able to forgive him. I NEED to live in the present and "let" him love me and comfort me. He said that to me this weekend as we both bawled like babies. I don't trust ANYONE...never will again. I am now (and always have been) ALONE even in a football stadium.

WOW...I should DELETE this madness and not "dump" it onto others. I guess I just want others to know that this forum has given me something that is priceless. Believe it or not...I NEVER TALKED about my experience with this disease until I found this forum. I was desperately suicidal last fall when I found DS and another discussion forum on an alternate site. There were too many restrictions/rules/regulations on the alternate site. DS allows you to share YOUR TRUTH. I love THAT because we all need to express our feelings in our own way. This is an ugly and vile disease that we can celebrate our triumphs and grieve our trials and tribulations. We aren't required to sugar coat a turd and call it a truffle. Woo-hoo!

YOU are no longer alone, sweetie. We're ranting, raving and relentless in our pursuit to support our sisters=)

HUGS~~Pup

I am so sorry to hear about your experiance! You sound like a tough cookie though! Even though you went through a lot it helps to
Know stories like this and that the feelings are normal to have. I am
So happy that I joined this group and have the support of all of you and am able to support all of you as well. I don't talk about have endo
Often and it is so nice to be able to openly talk about it without getting judged. Hope life is treating you better lately (: