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.
So, I am home at my parents house on leave for a month, and as wonderful as it is spending time with my family finally, it is still slightly frustrating. Everytime I mention ANYTHING about Endo my dad fires back with "well, I have talked to a lot of people, and most of them say they have Endo, and they aren't complaining/they don't have pain, so I don't know why you are complaining" or "I think it is all in your head because all of these people I know aren't in pain". I have a feeling all the people he has talked to are older, so on top of the fact that most of them have long been through menopause (although I know sometimes that makes zero difference when it comes to Endo) they also probably have not had a lap to get the diagnosis. I just don't know what to say!!!!! He is super stubborn. Also, I have really been trying to hide it when I am in pain, but the other day I was walking out of the house & had to stop & grab onto something because I got an awful sharp stabbing pain (which I think is another cyst). When I did this he just was like "oh you are fine, it's in your head" or something along those lines. I know some of you have experienced similiar situations, but what are you supposed to do? There is no arguing with him because that will make me look craizer in his eyes, so I am just stuck. Sorry for the long rant, but damn this is frustrating! It's bad enough i have to deal with this at work with a bunch of male soldiers, but when I come home to my family I expect just a little support, even if it is just a "wow that sucks, I hope you feel better!" I do not expect work people to give a crap, but I do expect my dad to at least try to understand. Any advice or words of encouragement?
When I was diagnosed he apologised profusely...
He finds it hard sometimes to understand why my pain is all month long, where his male mates daughters or wives who have it only have it on their period. But he can't get his head around I have 3 diseases not just 1.
Im not sure how to help, just that I do understand.
Perhaps you could explain to him how everyone is different, maybe give him some examples of on here, or online articles??
Hope this somewhat helps
xxx
I think it's because she just doesn't want to accept that I am in that kind of pain all the time, because she can't stand the thought of it. If these people knew how much worse it makes things for us....
For 20 years I got this routine from her until just last fall I finally explained this to my doctor. She suggested that I simply respond with "If it bothers you so much, and you don't believe me and my doctor that it can cause so much constant pain, then why don't you go online and see for yourself what others have to say". I laughed at this, but I tried it anyway. Stopped her dead in her tracks, she shut right up! I guess she actually went home and went online to check it out, because she quit condeming me for it, although now she has gone overboard the other way and is treating me like a baby, which I absolutely HATE! I swear that woman simply does not know me very well. I don't think I will ever get her straightened out about this, but at least she is off my back about it and I don't hear that other crap anymore. Never have heard an apology, and most likely never will, but oh well.
This may not work so well for a guy (your dad) as it did a woman, but it's still worth a try. I think the doc told me to say it that way because it "challenges" them to go see, so I would say it just like that because my mom is stubborn as a mule too! Good thing I am MORE stubborn! ;)
My hubby also used to give me the same attitude, I finally got tired of it and just told him that I will be sure to show him the same care and compassion that he has shown me someday when he has problems, something gets everybody someday. Wow, that seems to have worked wonders as well! He must be thinking of that increasingly bum knee he has. HeHeHe. Ah, tenacity wins again!
Try sending your dad here: http://endosisters.weebly.com/caring-for-those-with-endometriosis.html - email him a link or something, maybe he will get curious or "challenged" to go check it out. There is a great video on there of a woman who's lifestyle is pretty much like mine, veiwing life from the windows of her home, but out doing all she can, whenever she gets a chance! Maybe that will get him to see that things could be even worse, so he should be happy for you that you aren't in that shape! It also has some info about the pain of cysts and their common occurance with Endo. Those "stabbing pains" are common symptoms of a cyst-I get them all the time, sometimes over and over again for hours, several days in a row, weeks even.
You may want to check the website out too, visit the "Ignorance Hurts" page for more helpful tips on how to handle "ignorant relatives"!
I hope this helps, if not, I understand so so soooo very much how this feels, over 20 years worth, and I am here for you if you need to vent again! If I hear any new ideas I will be sure to let you know!
Hang in there and I hope you feel better!
I posted this article on DS a few months ago...i thought it was an eye opening article, and especially helpful for to share with those who dont understand-like your dad.
By Dr. Cook;
"What It Really Means to Have Endometriosis"
In last weeks post (What is endometriosis?), I said that endometriosis by definition is a disease process where the inside lining of the uterus, the endometrium, flows back up inside of the body around the ovaries and bowel where it implants and begins to grow. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways.
In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.
Patients with endometriosis can experience horrific pain for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.
Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery.
A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patients situation. Her family is now led to believe that psychological issues drive the severity of her pain.
In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.
The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity.
As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.
Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.
Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.
The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion."
Maybe you can show this to your father. Dr. Cook is one of the most reputable endo specialists in the US.
Also, people like to avoid or deny what they cant handle. Maybe your father is doing this, to your detriment, to avoid feeling helpless about what you're going throuhg. My own father has told me that many times; he feels helpless.
Keep your head up!
I saw him last weekend and he could tell I was hurting and he actually cried (and ive only seen him cry twice my whole life) so I guess he finally does get it and it hurts him to know im hurting.
My best advice is knowlege. When my dad heard it from the doc he started believing me and helping me find a good doc. He even had my sis help him research endo online (he has no idea how to even turn a computer on lol)
I hope you can get through to him soon :-) i know its hard when loved ones show no support in your struggle.
It made me so sad that I became very depressed, I mean a mom should be loving and supportive right? And this lead me to therapy. The therapist has taught me to recognize that my mom is flawed (duh!) and that I need to be confident in myself and not take her bull shit. It has helped. I still get verbal abuse from time to time, but every once in a while I will say "no mom, please stop, what you are saying hurts me, and I'm in enough pain as it is from everything that is going on."
Then I jump subjects as soon as possible. There's no reason to linger on this subject with your dad, he may never change or if he does change he won't change over night. Just protect yourself and look for support from other people other than your dad.
I just went through 2 cycles of IVF, and I knew I couldn't count on my mom for support. True to form, she was aweful with our first cycle, said really mean things and then when it didn't work she said "so what's wrong with you?" like that was helping.
We just got a positive pregnancy test - so a grandchild is on the way, a positive moment, right? She still was all "well, you had a miscarriage before so I'm not going to congratulate you until the 2nd trimester." WhAAA?!?!?
It hurts, but then I think of her as a child now and immature. Sounds like your dad has some growing up to do too (sorry).
Hope this helps, and please know that this is NOT in your head, and forget the nay sayers. Love yourself.