These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
(San Diego, CA)
Start of symptoms of endometriosis:
I am almost 30yrs old, and I have a 2yr old. A year ago I was running 2hrs/day at least, 3-4 times/wk, with the baby jogger up steep hills in the early afternoon.
One day I woke up so tired and in so much pain, I thought I may have just over done it the day before ... so I rested. Next day I was worse, I didn't want to get out of bed ... well I must have caught a virus.
The month went on to me dropping my 1yr old, like something had stabbed me in both shoulders, I couldn't make a fist, or hold a pen without shaking uncontrollably.
I had finals coming up, and of course it was history essay final, and speech final. I had gone to the ER numerous times those couple months, and they kept finding elevated white blood count, enlarged lymph nodes, heart palpitations, and low-grade fever.
Oh its Rheumatoid Arthritis, oh it's psychological, oh it's IBS, my absolute favorite though is: Yes, you definitely have an infection festering somewhere, but I'm not a specialist. And since I do not know where the infection is, I don't know what antibiotics to give you.
Finally, an intra-ultrasound was done and saw a compound mass on my ovary. My GYN ruled out PCOS, due to my hormone levels being absolutely perfect. She concluded that it had to be an endometrioma, and since I had a pain/difficulty time using the bathroom both ways, she estimates I may have them on my bladder and other intestinal organs as well.
I have surgery scheduled in a couple weeks and I am so scared. I am scared of having an allergic reaction to the anaesthesia - I am literally allergic to everything synthetic/gluten these days. All my vitamins, birth control, and even benadryl! At the ER last week, they administered morphine and I had a reaction to that, yet 6 months ago, it didn't bother me what so ever...
RECENT SEVERE SYMPTOMS:
I woke up last week with a knot in the left side of my throat, I woke up because I literally was having a difficult time breathing. I had to sit up and contort my position to try to lay down to sleep ... didn't work. I didn't sleep for 3 days!!
It was my lymph node or gland or something, but it felt like I had a golf ball in the middle of my airway! Strange thing is no fever higher than the norm of 99.2, yes I get fevers everyday which started a year ago with the other symptoms.
I feel like my body is killing itself slowly, in the most painful way possible.
I would have comfort if I knew for certain that after surgical/medical treatment, that I will go back to my normal self. I know once the doc takes a look at my pelvis it is going to be as bad as she suspects ... I really do not want a hysterectomy, or to lose my ovary or fallopian tubes ... I do not want to get pushed into menopause so early and lose my chance to have another child ... or need hormone therapy for the rest of my life...
My worst fear is what she will find in my pelvis ... I was told to get a consult to urology and GI due to my other symptoms of painful/difficulty using the bathroom or having sex, may be due to the endometriomas have spread to my bladder, colon, gallbladder, liver, intestines etc.
To get the consult they need proof of these "so-called, very unlikely" endometriomas. I just hope if it has spread to those places that the organs are still salvageable. I don't want to cath myself to go pee 10/day, or carry a colostomy bag on my belt...I'M NOT EVEN 30 YEARS OLD YET!!!!!!!!!!!!!!!!
My body has turned on me, and I pray and still pray everyday for the fatigue to get better, I can deal with the other stuff ...(well maybe not the colostomy bag) but the fatigue sucks every ounce of strength I have left to the point I'm too tired to hold my head up, or brush my hair, or pick my son up ...
All I want to do is spend time with my baby, teach him all the wonderful things God gave us. Please send inspirational hope to all who suffer this disease. It is not a disease of bad PMS pains, or heavy periods, or mood swings ... this disease attacks and destroys every organ in your body.
And please, if you have symptoms, even if they seem minor or just irritating at times ... GET SEEN!! And do not let a doctor brush off what you know deep down that SOMETHING IS NOT RIGHT ... TRUST YOUR GUT IT KNOWS BEST!
If I had done that 5 or 6 years ago, I would not be in the predicament I am in today. Thanks for your time in reading, I hope this helps others who are similar, to know that you are not crazy. The pain/symptoms are real.
Title: Your not alone
I am having very similar symptoms. I have had two periods this month, and coughing fits that won't stop. I am on my third set of antibiotics because I have bronchitis that will not go away.
I am allergic to almost everything under the sun, and I am only 34 years old. I was diagnosed last year, and I still do not know much about this disease. The doctors tell me about treatment options, but they tell me there is no cure, so what's the point.
I have good days, and I have have really bad days. I have had bronchitis at least once a year, and pneumonia 3 times in my life!! I have had c-diff from being on antibiotics for too long a few times, and I am at my wits end.
This is scary, because I am a single mother, and I feel like my body is killing itself as well. It is a horrible feeling, and do not know what to do. Doctors do not think my coughing is due to endometriosis because I am a smoker; but I know my body.
To top it all off, I suffer from epilepsy. You think they would consider the seizures to be connected with endometriosis, but my neurologist says they are not connected. I don't know what to think.
I want to enjoy life, but it seems like all I do is lay in bed feeling like crap. Doctors tell me I am depressed, but I am not. I want to do things, I want to keep a job, I want to go out and have fun with my kids, and it makes me angry that sometimes-a lot more often now- my body just won't allow me to do that.
Tell me what amount of cognitive behavioural treatment will help me with these matters? Not to mention losing job after job, and failing classes when I am an A student. I do feel alone, and I am sure you do as well, because we spend a lot of time ALONE trying to deal with pain.
Most people do not understand the condition, some think I am a hypochondriac. I know my potential, and it makes me angry when people tell me I am faking it, or call me a loser because I can't keep a job.
I am an intelligent woman who has dreams of supporting my family, but this damn body won't let me, and there really is no support. I lost a job because my leg was having seizures, and I was falling at my job!! They said I was too much of a liability!!
I was going to fight it, but it was a dumb job at a fast food franchise, which is the only kind of job I can get because when I have seizures, I sleep for days, and when I have cramps, it feels like I am about to have a baby; who wants to hire a 34 year old with a sketchy job history.
I won't give up, I will tell you that much. I still dream and hope. I still love, but sometimes things feel hopeless and pointless.
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