Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
It has been about a month since I have been on here...way too much going on! I had surgery on 30 August to remove more Endo & either get my right fallopian tube unblocked or removed, as it is very painful. Well, when the doctor finally told me what he found, I was not prepared at all. I was expecting to hear a little Endo had grown back, since I had surgery to remove it just a year and a half prior (I was thinking there is no way it grows that fast...) and that they removed my fallopian tube, and I could be normal for a while. NO. I did not hear that. The doctor said they figure out what stage Endo is based on a "points system", or a score. He explained they score it based on how many adhesions they find, where they are, how big they are, etc., etc. On his scale, the score needed to have Stage 4 is 40 points...I had 60. WTF?!?!? So, what I heard is "it can't really get worse." I had it at Stage 3, which is already pretty bad; I never would have thought that it was just getting worse. And in such a short period of time! The Endo was freaking everywhere in my lady area. It filled up the cul-de-sac area between my uterus and bowel as well as attached the two together, it was all over my right ovary & fallopian tube, and everywhere in between all of that. Plus, they did NOTHING about my blocked fallopian tube! That was half the reason I needed surgery! The doctor said he couldn't do anything about the tube because it is a "fertility" issue, & my insurance "Tricare" will not cover fertility issues. I was like "it's not a fertility issue for me because I am in a lot of PAIN!" So, I am stuck with this tube pain forever I guess...? *sigh*...
I have had to do a lot of thinking about this recent surgery and my Army career. The whole point of having this surgery (which was surgery #3 in 3 months) was so I could continue being in the Army for a little while longer. Well, with the news of the results & a lot of pondering, I decided to ask for a med board. Meaning I will be getting out of the Army for medical reasons. I really wanted to avoid that for a little while longer, but like my husband said, I really shouldn't suffer any longer by forcing myself to do this job when I clearly can't physically. It is just so overwhelming, the thought of getting out. What am I going to do once I am out? I can't just go back home, because my husband is in too. So I will be stuck in Clarksville, TN, where I cannot think of a job other than retail or fast-food, which I do not want to do. I joined the Army so I wouldn't have to do those jobs. I think the stress of all of this is really getting to me to the point where I kind of shut down & just do the bare minimum to get through everyday emotionally. It is so hard to think about all of it. In fact, that is part of the reason I have avoided coming on here recently...I just don't want to think about it anymore. However, I need to force myself to think about it & work through these issues. Can anyone relate? Sorry about the long post guys. Thanks for listening!
I have had to do a lot of thinking about this recent surgery and my Army career. The whole point of having this surgery (which was surgery #3 in 3 months) was so I could continue being in the Army for a little while longer. Well, with the news of the results & a lot of pondering, I decided to ask for a med board. Meaning I will be getting out of the Army for medical reasons. I really wanted to avoid that for a little while longer, but like my husband said, I really shouldn't suffer any longer by forcing myself to do this job when I clearly can't physically. It is just so overwhelming, the thought of getting out. What am I going to do once I am out? I can't just go back home, because my husband is in too. So I will be stuck in Clarksville, TN, where I cannot think of a job other than retail or fast-food, which I do not want to do. I joined the Army so I wouldn't have to do those jobs. I think the stress of all of this is really getting to me to the point where I kind of shut down & just do the bare minimum to get through everyday emotionally. It is so hard to think about all of it. In fact, that is part of the reason I have avoided coming on here recently...I just don't want to think about it anymore. However, I need to force myself to think about it & work through these issues. Can anyone relate? Sorry about the long post guys. Thanks for listening!
I wish I could say "I'm shocked!" but I'm not. I often think perhaps I shouldn't be on this website because I don't want to DISCOURAGE any one. I try to be positive because I don't want to be a "dream slayer" for anyone. I bite my lip to keep from speaking my truth...the truth for SO MANY women out there who aren't talking.
THANK YOU, JESSYE for sharing this information. This will not be well-received by most, but it must be said. Endometriosis is IMO equal to cancer. Don't everybody freak out, because it's NOT cancer...yet. It is an elusive and deadly disease...not in that it will kill you (just your dreams and quality of life) It is sometimes
"contained", but more often it "spreads", grows and rages. It feeds upon any inkling of estrogen from ovaries (or biological conversion) of even fat cells into estrogen, after ovaries are removed. THIS STUFF is relentless=( We are told to take Lupron/Depot...works for some...gives others false hope...while the disease rages on to a higher "stage".
I'll stop there for now. I want to say to you Jessye that none of this is your fault. You've aggressively treated this disease in your body. I hope you will continue to do so. As I sit here typing this, our TV is on "60 minutes". They're talking about a possible "new" treatment for pancreatic cancer. I'm thinking...Hmm? We're told to be vigilant about our bodies, do self examinations, pap smears, and discuss any fears with our GYNO. Then when we do, we're patted on the head and patronized for YEARS as we're told it's due to the "menses". WHY DON"T THEY CHECK IT OUT? In my case, when they finally did, they botched the first 2 surgeries. AND YES, within ONE YEAR the endometriosis had exploded all over my insides. So, Jessye...I KNOW it can continue to thrive and consume our organs.
There is so much MISINFORMATION. WE pay the price. I understand the "emotional shutting down". I am 20 years post removal of uterus, ovaries, tubes and still fighting the pain (and irreparable damage) to vagina/rectum. I have no answers, even now. I am baffled by the fact that this disease has existed forever, yet treatment has advanced little to none.
As for your career in the Army. Since your husband is there (are you stationed together?) could you possibly obtain a less physical position? Forgive me if my questions are ignorant of the military. It just sounds like you may be worse off "out" of the Army, IF you are alone and having to be on your feet all day in the fast food or retail industry.
Your post hurts my heart, because I know your pain. All I can say is please don't stay away from the board because you "don't want to think about it". Come here to vent and to find emotional support. We are here for a reason, whether it's to cry tears of pain or tears of joy. We need each other to help find the sunshine through our clouds of agony. Take care of yourself and don't make any rash decisions, sweetie.
~~Pup
You can do this, you can figure this out. It's a hard decision: get out, find another job, other ideas...but is something that will help you in the end. I moved to reducing my schedule for a year after finding out about my severe endo. I filed FMLA paperwork which gave me flexibility to be off of work for 1 to 3 days a month. This really helped take the edge off and allowed me to think about what I wanted to do next.
Now my FMLA paperwork is up for renewal and I've decided not to renew for the coming year. But I did use like 4 weeks total last year which was helpful. It's not the best career move, but f the career. If you are thinking about fastfood or army, I think you should consider finding a doc who would file the paperwork for the FMLA based on your PAIN. Just something to consider.
Hang in there, this disease chews us up and spits us out.
Interesting point about the "60 Minutes" episode. That is so true!! When we do open up to the doctors & get specific they either blow you off or think you are being a drama queen. Boy is it annoying! & wow-your Endo exploded in only a year too? Geez! I can't believe you are still dealing with it 20 years later. =(
speckledpup, vansanturtle, luprongirl & endowife: As for the questions/suggestions about getting a less physical job, I wish it was like that. I do have a desk job, but no matter what you do in the military you still have to do physical training everyday as well as basic soldiers stuff (like firing a weapon, long ruck marches, things like that). Because of having to do physical training every morning for an hour and a half, my days end up being like 10-12 hours long. Plus they force you to do something, which as we all know there are many days where we want to just lay in bed, & working out (even just walking) seems impossible! Too bad the Army doesn't let you call out sick...lol.
luprongirl: Wow-reading your surgery history is like reading my own!!! Expect you have been dealing with it much longer & you are having things removed soon, which I am not. I hope everything goes well & you have some pain relief! Glad to hear you are ready for it; I believe that is key!! & Clarksville is about 45 minutes from Nashville (we are in the northwest part of the state on the Tennessee/Kentucky border). I think I have found that Endo specialist you are talking about down there but it is 3 hours away. =/ There is also one in Louieville, but that is also 3 hours away! Maybe, someday, the Army will pay for me to go to that sort of specialist, but usually the farthest they send me is Nashville. But my doc there is pretty good, he was just limited because of my insurance.
endowife: Tricare does suck!!! I believe this is part of the reason why soldiers are so hurt. They might be better off with better insurance. What is FMLA? I am hoping that when I get out I get a great job!! If I just had a normal, 9-5 desk job (NO WORKING OUT EVERYDAY!!!) I think I could survive. But I would need some sick days. Haha!!!
Again, thank you sooooo much everyone for responding to my post...it means a lot!! It makes me feel much better being able to talk to people who completely understand, even though I have in a way been 'avoiding' the thought of any of my Endo problems. I have my doc apt tomorrow to ask to start the med board process to get out of the Army...I hope all goes well! You guys are the best. =D (sorry, I seem to have a knack for extremely long posts lately...guess that is what happens when I don't come on here often!)