These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
A long journey to the truth about endometriosis ....
I am almost 21 years old and was diagnosed with endometriosis about 6 months ago. I've always had gyno related issues.
I am a student at NIU and my endometriosis has caused me to switch majors twice and made me drop classes each semester. Last year from surgery recovery and the intense symptoms from Lupron.
I used to be a normal college student going out and having a good time, now I get sick and pain when I drink and annoyed by the loud screaming bc my head hurts so bad at times, and when I do go out I can't do much but sit there and watch everyone else have fun.
I was put on birth control at 16 because I was becoming anaemic from blood loss because I'm very thin and was getting my period sometimes for 8 days every 2 1/2 weeks.
When I was 18 I had my first ovarian cyst rupture and about 4-5 more since then. I get multiple uti's a year as well. Right before my 20th birthday in August I got very sick and had a swollen lymph node in my right groin area. I got on a bunch of antibiotics because they could not figure out why I had this problem.
After this I experienced another cyst rupture, only the pain felt different than before so I delayed going to the doctor stupidly. After treatment for the cyst I began to have chronic pain, nausea, exhaustion. I went to my gyno and he was worried there was damage from my last cyst rupture.
He tried another round of antibiotics and it did not help so he did the surgery. He noted that my bladder and uterus looked inflamed but did not do biopsies because he was mainly focused on my cysts.
After the surgery my symptoms only got worse including gi problems like vomiting and severe constipation. He suggested going to see a specialist. Before seeing her, I saw my primary care dr who looked at my surgery pictures and said I was fine and creating the pain in my mind and that we should just let it go and not go to any more doctors. He was a male, as well as my first gyno.
The specialist tried a fiber treatment which did not help as well as trigger shots for scar tissue I had wrapped around bands in my pelvis. Nothing stuck so she did a second surgery and did biopsies which came back positive for endometriosis and since my uterus was still inflamed she believed me to have adenomyosis as well.
I started my Lupron treatment on march first and am currently almost done with the second round. I have a half sister with the same father who has endometriosis as well, and has been thru all the surgeries and treatments already.
I feel extremely lucky to have her to confide in because even though my boyfriend, friends and family support me, they cannot truly understand what my life is like now.
The Lupron has not helped much, my symptoms have recently came back even worse. I have no pain relief and suffer from unbearable hot flashes. I recently started seeing her dr which is and endometriosis specialist, who also diagnosed me with severe muscle issues and vaginitis that needs extreme physical therapy if I ever want to lead a normal life.
I used to take over 10 pills a day including muscle relaxers and pain meds, but had to cut back almost in half because I began having severe reactions from being over medicated.
I go back in a few days to make a new medicine regime. Going all the way back to September I never imagined all my problems were from a chronic debilitating disease. I'm only 6 months in and am already so scared for what my future will hold. I still have severe constipation and pain with sex only gets worse.
It's not right for someone my age to have to deal with all of this, but I have no choice and just pray everyday that I can take the pain and sickness, as long as I am able to get pregnant, because anyone who knows me knows there is nothing worse that can happen to me than not being able to get pregnant and have children.
Starting in August I will be back on birth control and skipping my period for as long as possible then will need another surgery and another round of Lupron. I've always been sick and had a bad immune system but I never thought this would happen and take over my life...
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