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.
I just turned 17, and starting my junior year in highschool. I've been dealing with sharp abdominal pain, and just this intense sick feeling and no one believing me for 5 years. I was lead to believe by my doctor that the pain i was having were from having a UTI. So when I was at school last week i called my mom to make an appointment with him because I believed I had a UTI.So I go in the next day and he presses on my lower right quadrant of my abdomen, and i scream. He ends up worried that I have appendicitis, so I go to the hospital and recieve a CT scan which showed free flowing fluid from a cyst and one of my ovaries that had ended up rupturing which leads them to believe I have endometriosis.
The birth control pills that I have been taking for over a year have yet to help the pain im almost constantly in. So im curious as to what step is next?
ANY informantion would be so helpful
The birth control pills that I have been taking for over a year have yet to help the pain im almost constantly in. So im curious as to what step is next?
ANY informantion would be so helpful
This article is straight to the point and explains a day in the life of endo sufferers. 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.
you might not be able to "make" others understand. But its not other people that need to understand, you do not need to be validated, but I know its nice to have support. Even if you dont have support now from others, you will. Just try to stay strong and dont focus on making others understand. Your health is the most important thing in the world!
P.S-i hope this doesnt post 20 times, fingers crossed.
Posted on 06/10/12, 12:38 am
My mom didn't get it either. I had HORRIFIC pain with my periods, and my mom said to me "suck it up, that's life."
In truth, women who have endo are much more likely to have a mother and sisters with endo. My mom had really painful periods too, but she got pregnant in her early 20's and vaginal birth often reduces the effects of endo. So, she doesn't get it. It probably got better for her but she sort of knows.
You need to get this under control, it's so important! Which means you need to go to a good specialist. It may be endo, it may be Polycystic ovary disease, although probably less likely.
Your mom wants the best for you, right? Do you plan to go to college? There are a couple members on here who are battling surgery with college. Others are battling starting their careers with endo...both of those are tough, I know. I wish I'd known I had endo, I could have even gone farther and done more in those years. I was always exhausted and felt a brain fog the week or so around my period.
Just tell her you want to get this figured out before you start some of your most exciting years, it's important. Be sure to talk her through some of your pains and how you think it will impact you in school or life going forward. Hope this helps.
How was your day? How are things going with the mom? Is she starting to get it?
I agree with what others posted. They do have the stick on heating pads used for cramping and they do help. They are not easy to find but recently I found a generic brand at CVS next to the feminine pads and tampons. They are small enough that noone knows you are wearing it and send continuous heat to the area for upwards of 8 hours.
I was also raised to "suck it up." My periods were so bad I would be at home sick with flu like symptoms. Nothing helped. When I got to college and started running and my body fat was so low my periods only came once every 3 months, my symptoms improved. I honestly believe diet and exercise helps. It does NOT stop endo from growing but it does help.
After college I couldn't ignore it any longer. By this time I was married and it took me awhile to conceive and then when I was pregnant my pregnancy was a continuous high risk situation with noone understanding why. I was fortunate to give birth in 1998 to a beautiful daughter. My pain only got worse with time. My doctor and obgyn had me go through many many tests. Nothing showed up. I then went to a gastro doctor who did a colonoscopy among other tests and he sent me back to my obgyn. I was about ready to just toss in the towel when my gyn decided to do a lap to look and see. By this time I was taking vicoden in order to function.
The time my ob doctor did my lap she immediately closed me back up and told my family she was incredibly sorry she didn't catch it earlier by I was covered with endometriosis and she recommended a complete removal of everything except my cervix. Finally...I found out I really was NOT making up this pain.
All of that started in 2004. It's 2012, 5 surgeries later and my endo is still active. I don't know if it were caught earlier if it would NOT have spread as much. I don't know if I knew I had endo in my teens if I would have had my beautiful daughter I have now.
What I am grateful for is: knowing I'm not insane! Narcotic pain meds that help me work and be a mom and take piano lessons and jog marathons even though they are at the pace of a snail. I'm grateful for so much today. I can't change what happened to me. Today I am doing my best to accept my pain. There is one other treatment that I may consider and that is complete testosterone treatment. I don't know if I will go that route.
I don't have advice. I have my experience. I have empathy, incredibly empathy. You are not alone. You are not crazy. There are options. There are methods to help you have good days. I do not know if there is a cure. Many have a lot of success with endometriosis specialists. My last surgery was with "the best specialist in the northern part of where I live." in his words "there is nothing else i can do for you." So......I hope and pray this is not your story. I hope and pray you find help and success now. I'm now 45 years old. At 17 I can't help but think how much more successful it could be if they grabbed the endo cells earlier so they wouldn't spread.
sorry this may sound confusing. I hope in some way it helps. It helps me connecting with others.