Endometriosis Stories - Page 40

United States

When I was 16 years old I started experiencing lower abdominal cramps. I went to my OB/GYN on a regular basis to try and figure out the cause. First I was prescribed birth control pills, this did not work. After about a year of getting the run around, my doctor decided to do an exploratory surgery.

During this surgery she found severe endometriosis. She removed what she could. About three months later, my problems came back. My parents and I looked into finding a specialist. We found a doctor in Atlanta, GA. Because he was a specialist, I had to apply to be his patient.

He accepted me and then came the fight with my insurance company because he was an out-of-network doctor. They finally agreed to pay for a portion of my surgery. Dr. Ken Sinvero performed surgery on me and found more endometriosis. His practice is to actually cut the endometriosis out. After a year of being pain-free, it came back.

I went back to Dr. Sinvero and he again performed surgery. This time there was no endometriosis found, only adhesions. Well after about 6 months, the pain came back. My doctor ordered a CT scan and the results showed a large mass on my left ovary. So back to Atlanta I went.

They did in fact find a mass and removed it and my left ovary. I went to a reproductive specialist at the University of Virginia. The doctor thought that the problem could be damaged nerve endings. After trying two medications, my abdominal pain is still there. Now the doctor wants me to try Lupron Depot.

My other doctors have suggested this same treatment over the years, but I've always been too scared to try it. This time, I'm really considering it. I work as a Certified Personal Trainer and am extremely active, so this treatment could affect my career. I just don't know what to do and I'm running out of options.

After four surgeries, I still hurt everyday. I have many days were I can barely function because of the symptoms. I'm an extremely outgoing person and for the first time in my life I am starting to get depressed. I don't know if I should try the Lupron injections or not. I've tried changing my food, but didn't notice a difference. My husband would like children in the future.  

Donnika Pernsley
United States

I found out I have endometriosis two months ago. I also had very bad periods and also thought it was normal. I started a new job this past summer and that's when my life change forever and not for the better. I started having very bad cramps every day. I didn't want to leave my house some days because I was running to the bathroom every ten minutes. My back hurt so bad that I would lie in the bathtub for hours. On Feb 6, I remember the day like it was yesterday.

It was a Sunday I was lying in my bed and then the agony hit. I could not even walk, I crawled into my bathroom and put water on my face. I called my best friend and told her she need to come to my apartment asap. She came running over, when she got there I was lying on my kitchen floor in a ball. I told her to call 911.

She calls, they came and took me to the ER. There were no rooms left in the ER so I was on a bed in the hall way for six hours. They ran test after test for six hours before they came out and said I needed surgery.

I was a mess at this point, all I could think about is my son and how I was never going to see him again. I refuse to go to the operating room until I heard my son's voice. The doctor told my family it would be an hour and half surgery. It ended up being four hours. 

When I woke up I felt like I got hit by a bus, and I had 25 staples on my stomach. I was in the hospital for a week. The doctor came in and told me I had a bad case of endometriosis. I have never heard of it or what I need to do so I started reading everything I could find on it.

I just started the lupron injection and so far the side affects are not that bad. I still have pain but nothing like before my surgery. I am so scared and I feel like no one understands what I am going through. I want more children and I don't know if I can have more.

My family thinks I am driving myself crazy by reading so much about endometriosis. I feel like its the only thing that's gets me by is hearing people who know what I am up against stories. I read so many stories of people who had three and four surgery and still have the disease.

I don't know if I can take another surgery. I still don't have all my energy back from my last one. I am a very independent person and after my surgery I could not even walk to the bathroom by myself. My parents moved in with me for a month to help me take care of my son and my home. I have so many questions like why did this happen to me? What did I do wrong? 

En Rodriguez
United States

I am a 34 yr. old woman, who has been diagnosed with endometriosis a year ago. Before being diagnosed I suffered from nausea for several yrs. around the time of my period every month, until last year I started having tremendous pelvic pain out of the blue and I was treated with antibiotics for a bladder infection that I never tested positive for!

The following months, after I was treated for pelvic inflammatory disease with a course of three antibiotics that made me terribly sicker and also never tested positive for infection through cultures and blood. Needless to say all these antibiotics made me so sick that in addition to extreme pelvic pain that would not go away I developed diarrhoea and rashes for a period of 4 months from the antibiotics even after being off them.

Next came digestive problems, upper stomach pain and a lot of gas...I was unable to eat anything. So I have a laparoscopy finally indicating stage two endometriosis....finally a diagnosis!!! I was never treated just given pain meds.

Next I had a colonoscopy showing that I have colitis now. Finally an endoscopy of my stomach shows a hiatus hernia and gastritis....? So long story short I am diagnosed with endometriosis, colitis and a hiatus hernia all within weeks of each other...how could all these diseases come on so sudden? Are they tied together? Has anyone experienced stomach trouble along with endometriosis (like nausea, vomiting, constipation). 

Sherry USA

Hi, I'm 33, and very thankful for a place to tell my endometriosis story. Its a sad tale that hopefully will make the medical community more aware of this disease and push forth a worthy cure. Certainly Lupron, which is medically-induced menopause, isn't the answer to endometriosis. I spent years on the pill, so I had no idea I had endometriosis until after I went off it.

At that time, I had been married for 6 years. We went through a rocky spot a year prior, but through marriage counselling and communication, things had markedly improved and we were almost ready to have children.

Immediately off the pill, the pain and the hormonal imbalances began. Within the first two months, I had such severe side pains and an inflamed appendix that I received an emergency appendectomy.

It turned out that it was not appendicitis, but my appendix was irritated by what my surgeon identified as 'popped ovarian cysts' surrounded by a lot of scar tissue. The ER surgeon never said 'endometriosis' but she was concerned about the abundance of scar tissue. Shortly after that, my hormones went completely out of whack and I suffered through a severe, inexplicable depression.

My husband went long stretches of time away from home, travelling for work, and I found myself often alone and scared. He became my blame for my depression. I became so unrealistically terrified that somehow the same issues that brought us to counselling before would come back again to haunt our marriage, and his absences at the home only reinforced my suspicions and doubts about our future. 

Six months after the appendectomy, we began divorce proceedings. I thought my marriage was the cause of my depression, but I found myself still embedded in an unexplained depression, complete with even more pain. I did not, for whatever reason, make the correlation.

My primary physician went through a number of possibilities, getting scarier with each diagnosis such as: acid reflux, panic attacks, celiac disease, and possibly but unlikely colon cancer. I had GI scopes, CT scans, and met with GI and bowel disease doctors.

All were inconclusive. My gyno finally diagnosed it a year after my divorce as endometriosis through a laparoscopy procedure. Sure enough, I had grade 3-4 endometriosis, which he could only remove the portions not affecting major organs. Having an answer was only part of the prognosis. The other part is dealing with it. He wanted me to do lupron for 6 months.

I did it for one month, and could not handle the side effects, especially the depression. I went manic during that month, and often thought of suicide. The other side effects didn't help either. I ended the Lupron treatment after also realising how much Lupron can cause bone density loss.

Having the severe depression plus coming from a family with genetic bone issues, I decided that it was too dangerous for me to continue it. After ending the lupron treatment, I felt much more grounded and a little happier, but my hormones are still out of balance.

I take pain killers regularly, sometimes smoke the occasional joint just for pain, and talk myself through daily issues when I'm feeling depressed- to figure out if it is just the hormones or if it is something else about me that I can change.

I have also started seeing a therapist to help talk about my issues and help me come to terms with the decisions I made. Exercise and a healthy diet does help, too. I notice it when I get 'off the wagon' and indulge in a little too much chocolate or bad food.

Just before I got the diagnosis of endometriosis and with it the high likelihood of infertility, I started dating a man who is kind, considerate, supportive, but also wants to someday start a family.

In all honesty, I think I want to go back on the pill until menopause as I have resigned myself that children are pretty much out of the question. As badly as I wanted kids, I do not think that it will be as powerful of a motivator to keep me suffering through the lupron-induced depression again, especially for 6 months.

For those who don't live with this disease, its so easy to dismiss it. For those that have lived through it, they know exactly what we're saying when we discuss it as a day-to-day struggle to live with. I greatly hope that they can find a cure for it. 

Stories Page 41