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.
Hello all I am here to better understand endo. I would love to hear any insighful information on this subject. My fiance has endo and i would really love to better understand what exactly it is and how it effects women.
Thank You
Greg
Thank You
Greg
There are a few websites I could direct you too which might help =)
But basically to give you a very quick run down, it is a disease where the inside lining of our uterus grows on the outside in places it should on the outside of our uterus, overaries, anywhere at all in our abdomen, bowel, bladder etc etc, it can even get into the lungs and brain. What makes it so painful can be from a number of things, each month it sheds along with out period and can cause sticky adhesions which in turn can make things like our uterus stick to our abdomen wall, or our bladder or our ovaries to our uterus, abdomen wall things like that. When it 'sheds' it is similar to our uterus lining, only it had somewhere to come out (which is our period), the endometriosis sheds and has no where to go, so it plants itself wherever it can which then can grow.
Alot of people assume a hysterectomy will cure us, even doctors. It wont, it is estrogen fed, estrogen is a natural part of a womans body, it is highetened when we have our period. Alot of hormones have added estrogen which can cause issues, it can also be fed by the HRT (hormone replacement therapy) drugs given to women when they have a hysterectomy which has estrogen in it also. While some women opt for a hysterectomy it can be for a variety of reasons to help combat endo, but it's deffinately not given as a 'cure'.
I think something important to note is we have no cure, most of us just have to find ways to 'manage'.
my professor likened it to cancer, only it isnt terminal, which puts a bit of a dark spin on it. It can be very restricting, depressing and deliberating for us.
So when we have 'period pain' it's generally a lot worse than a women who has the 'normal' I guess you'd say period, this is mainly due to the adhesions or the endo itself 'shedding' and having no where to go.
Now I'll give you some websites and hopefully these help too.
Also I hope other women will put it anything I've forgotten :)
Again, KUDOS to you! :)
www.endometriosis.org.au
www.endo-resolved.com
Tate
Anyway, taters pretty much summed it up in a nut shell as to how endo "works". Doctors really don't know what causes it. There is some research being done. The theory is it's there at the time of conception. Men even get it, although rare, it does happen. Usually when men are receiving hormone therapy due to let's say prostate cancer. Estrogen ( one of the hormones ) is placed in the body and sort of "feeds' the endo and the longer this goes on, the bigger it gets and can eventually spread.
One thing I will advise you on is don't let her "settle" on any one doctor or their treatment plans, especially when it comes to hormonal treatments. One thing I'm gonna tell you to have her stay away from is a drug call "Lupron". For many women it is a godsend, but for way more women, it is a complete nightmare!!! It put your body into medical menopause, which is hormonal havoc in itself. Menopause is suppose to happen naturally over a few years time, not instantaneously! There are many side effects that come along with this treatment and they are not only miserable for her but they will be for you as well! LOL! ( i'e', mood swings, hotflashes/nightsweats, depression, painful joints, headaches, loss of memory, etc. http://womenshealth.about.com/cs/hormones/a/lupron.htm
If she has a OBGYN, make sure he/she is qualified to treat this disease without the use of Lupron or other drugs like it or hysterectomies. Many doctors like to jump into taking out the "girlie parts" without considering other forms of treatment such as excision surgery. ( that is when they go in and cut out the endo verses just lasering it off. Lasering tends to let it grow back even quicker than when it first appeared ) Check out the doctors' track record, such as how many patients with endo has he/she had experience with, how many lap surgeries along with if they are qualified to remove it from the bladder and/or bowel. Despite what they might tell you, a hysterectomy WILL NOT result in a cure. there is no cure. Many treatments such as birth control can cause cysts on the ovaries. This can cause more pain and discomfort.
Treating the pain can be very difficult as everyone is different. Many times women will use heating pads and over the counter meds such as ibuprofen or aleve. Others need to seek relief from a pain specialist which can come in the form of trigger point injections to pain Rxs. I use the second to treat my pain as I have pain everyday along with seeing a pain psychologist and physical therapist. Physical therapy for this kind of disease is in a specialty group. They can do wonders for some of the pain as our pelvic floor muscles can tend to be very very tight and aggravate the endo. That would be something she can look into, perhaps asking her doctor for a referral.
I really could go on and on but it would turn into a book!! LOL! taters gave you some really good links to check out. They give alot of information and are reputable. Here is the US link to the endometriosis association: http://www.endometriosisassn.org/ This one has a membership option which will keep you "in the know" on up and coming news and treatments. I believe they have chapters all over the world and even support groups associated with them.
GOOD LUCK on your endeavor!! If you ever have anymore questions or concerns, don't hesitate to ask!!
Just support your fiance however you can. I think the other ladies have given you a great rundown on what the disease is. The one thing that you need to know is it won't be easy for either one of you. I lucky to have a great husband. He understands when I lay on the couch and cry it's not because of him. It is because I am in pain. Since you are going to be married to her you will have to help her make some really hard decisions. My husband has struggled with helping me make decisions. Don't tell her it is her decision when it comes to any discussion on fertility issues. If she asks she really needs to know what you want and think. Marriage is a wonderful thing. Endo is just a little bump in the road. Lots of luck to both of you!
Lupron yes it is highly controversal that is why I've choosen to use it as one of my last resort hail mary's. Unfortulantly that's where I'm at now so if I do go on it I'll let everyone know my side effects.
Depo Prevra is another option but one I don't recommend if she is at a high risk of breast cancer. Make sure she knows her family history. I'm already at a 75% chance of having breast cancer at some point in my life and I took Depo Prevra not knowing that it would increase that chance.
Be careful of excision therapy doctors. The closest one to me is 6 hours away, doesn't take any form of insurance and like most treatments for endo it's hit and miss on the success rate.
Pregnancy at times can be difficult or impossible however if she is able to get pregnant I know of a few women who had about 5 years of relief before the unset of symptoms reoccured.
NuvaRing is one I'm not a fan of. It's a form of birth control you stick in the vaginal cavity. When I had togo off of it for a few days without another form of bc to use I was in the worst pain I had ever been in. Trust me that's saying alot. I also experienced migraines, nausea, and vomiting.
Ortho Evra was a little bit better for me. I haven't had the side effects I did with the NuvaRing but I'm still in pain.
Laproscopy's make sure she has a surgery buddy. If you have to go to work make sure there is a friend or relative with her to make sure she's getting her pain pills on time and she comfortable for the first few days. Buy things high in fiber so she doesn't become constipated. If she's having abdominal pain use a ice pack the first 24 hours and then you can try heat. Be careful with both though because she will be medicated she may not feel burning from the ice or heat.
There are some other problems that go along with Endo. I personaly have problems with the fibers in my uterus and the lining of my uterus growing outside where it shouldn't be, making my uterus spongy. This contributes to the pain. I also have a problem with my bladder. I'm somtimes unaware that I have to use the restroom and I have dripping of urine for it. Also my bladder compresses when it's not supposed to and again drips urine. Fibromyalsia is another one that can go along with Endo. There are many others these are just a few.
Another note not every woman is made the same. She may get on a form of bc and feel great, get pregnant easily, and live her life relatively pain free. Some things that didn't work well for us may work wonders for her. Like the ladies said there is no cure all but someone find successful treatment rather easily and live a fairly normal pain free life. There's always hope.
Again you are an AMAZING guy.
Thanks
Greg
i so wish that i could move back to cali as arkansas has not been a fun place to deal with this disease. you guys do at least have that much going for you. i've done 2 six month treatments with lupron too and am now on and aromatase inhibitor called femara (letrozole) it's still an experimental treatment for endo, but has shown some remarkable results in clinical trials. you can read about it here. http://endometriosis.org/aromatase.html
i am out of treatment options anyways at this point myself, so i'm hopeful for this one. i've been on it for 2months almost to date and so far no good, but i'm sticking with it for the full six. unlike lupron that just suppresses endo, this can actually SHRINK it. it's worth a shot anyways. it's a pill too that you take everyday and if you can't stand it (it's not really that bad) then you can just stop taking it. also it's only $10 if you go to femara.com and print off their coupon for it! it has to be taken with progesterone too in order to stop ovulation because it doesn't do it on it's own unlike lupron too. i dunno why i'm rambling on...guess i'm just so excited to have a man on here asking questions for once...lol here are a couple more sites to check out including the first one being a story on the treatment i'm on. it's what convinced me. the second one is just one of my faves to go to for support. hugs to you!!! let us all know how she's doing and keep us updated??? ~jenny
http://www.kare2004.com/aboutus.html
http://www.livingwithendometriosis.org/2009/01/21/women-predisposed-to-endometriosis-by-birth/
Greg