Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

4 years for diagnosis after severe pains started

by Tabitha
(Houston, TX, HARRIS)

I started my period at age 9. My periods were always so heavy that I had to wear both pads and tampons. I could never wear anything other than black in fear of having an accident while at school.

At first, the pains were only associated with my period. Over the years they crept up on me. By age 16, I got my first serious boyfriend so my parents decided they wanted to put me on birth control to prevent pregnancy. All my problems got 100 times worse.

While on the pill, I started noticing minor and annoying pains that were on a daily basic. I starting getting hip and back pains as well. I started getting real sick within hours of waking up. At this point I went to my first doctor's appointment to figure out what was going on. The doctor said everything was fine and nothing to worry about.

So I ended up just going about my business. I had my first sexual experience and I felt like I was dying. We had to stop half way through it because I was in so much pain that I had to run to the bathroom. I started throwing up and continued for so long that I was dry heaving. The pain lingered on for days afterwards.

My days at school were miserable. My school day started ok and by 9 am I was having to run to the bathroom to puke. After that the pains were so bad that I would spend the rest of the day in the nurse's office laying down with a heating pad. After a few days of this I went back to the doctor.

The doctor found this time that my right ovary was enlarged. They gave me some medicine and sent me back home. The pain continued and a few weeks later I had to go back and they found my uterus to be enlarged. At this point the doctor's decided they could not do anything for me since it was a clinic.

So 6 months was wasted with them. I went to a ob/gyn and went through the tests. Explained everything all over again and we tried another birth control pill, ultrasounds, upper gis, and lower gis. Still no answers. At this point we spent 3 years trying to figure things out.

My relationships with family and friends were hurting. My schooling was affected, since all I could do was manage to stay awake long enough to do my class work. I found that the only relief I got was sleep. My whole personality changed. I couldn't do anything without being in pain. My periods put me in bed for days at a time.

During all my treatment, I was never once given any pain medicine. My doctor started telling me it was all in my head when there were no answers to give. I remember when I demanded surgery. It was December 16, 2001.

I was sitting at the doctor's desk and we were discussing our next test. I told her, " Doc, I don't give a damn if I die on the operating table. I want to know what the hell is going on. Please do surgery and help me". She started trying to tell me the risks of surgery. I repeated myself a second time. So then she took me serious.

My surgery was scheduled january 3, 2002. I had my first laparoscopy. I was diagnosis with stage 3 endometriosis of the cul de sac. I had left side adhesions and a cyst on my abdominal wall. I was put on Lupron depot without any permission. I just woke up and was told she gave it to me. I had a horrible recovery.

It took me 6 weeks to heal properly. My incision opened twice. I had an allergic reaction to the latex bandages. The side effects from the lupron was hell on me. I had the hot flashes, insomnia, fatigue, depression, gained 80 pounds in 6 months and even sick all the time. I started losing hair.

At 19, I was feeling like death after this surgery. I was in my senior year of high school barely hanging on. My pains were still there at about 80% of the intensity it was before. Lupron was 3 months of my life that was hell.

After lupron I took depo provera, my pains came back 100%. I was curious, so I started all birth control after the shot wore off. Surprisingly I felt better. My doctor insisted on the pill. I tried it and again pains 100% worse. So I went cold turkey off birth control pills.

After 8 years of no medicines my pains increased to the point that I had to have surgery number two in April 2012. Even now I am still dealing with pains and issues.


Name: Olivia

Title: Endometriosis is a B****

Hello, I just read your story and all I can say is I CAN RELATE! I too, was told it was in my head, blaming my symptoms to 'anxiety'. My doctor all but gave me an ultra-sound and blood test and after coming up with nothing said it was in my head. This continued each time I was in her office for pain, sickness, etc., constantly on bed rest, unable to do anything but lay down and sleep.

I had been in the hospital once a month, all the doctors, about an average of 3, said they suspected Endometriosis but need my doctor to call for the tests, which she didn't and again, blamed anxiety BUT gave me Nexium to deal with the acid reflux to help with the vomiting.

Also blaming the vomiting and built up acid on again, anxiety. I was so sick of her I stopped going to her AT ALL since she was not helping me. and went through clinics who also were a waste of time. f

Finally I got a great doctor, Hope, who is actually working on my case and I am now working with the Pro's. Pain would, and still does just 'hit me' and keel me over. It gets so bad, and it does this all day, I cannot even go to the bathroom, peeing and BM hurts to even try. I spend 15 minutes to an hour in there crying.

I actually stopped going to school and had to switch to online courses since I had such a low attendance and was unable to concentrate or do much when I was there.

I too had bad experiences with birth control. I was given an IUD after trying different methods and my uterus all but rejected it (or was trying to) and was bleeding none stop, which sent me into major depression and anaemia, to the point I almost needed a blood transfusion.

After that I refused all birth control and my new doctor agreed with me and that BC is out of the question for me. As well as my GYN who broke the news that I needed surgery as my pain only got worse after I had the IUD taken out.

I am expecting my first Laparoscopy on May 31st, 2012. I hope I don't have too bad an experience, and I wish you luck with your next one. I dunno about you, but I for one am sick of being sick and tired of being in pain!!!

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