These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
by Carolina
(Caracas, Venezuela)
I promised myself my story here would be a "success story" and here I am! I don't have any special powers, I'm just a woman like all of you, but I understand now, after going through so much pain, sadness and anger how important it is to keep searching for a solution and not give up!
Whatever is wrong in our bodies can be solved. The key solutions to this demoralizing condition are FAITH and HOPE. Don't let anyone, specially a doctor tell you that you don't have a solution because you do, no matter how bad your Endometriosis is.
I am a 33 year-old married schoolteacher from Caracas, Venezuela. Here, Endometriosis is extremely rare, frequently misdiagnosed and misunderstood in general. In my twenties I took birth control, so I never worried about infertility and my trips to the gyno were fine, but sometimes I had pain in my abdomen after sex and my periods were always painful.
After I turned 31, I stopped the pill to try to concieve and noticed my periods were getting a lot more painful and my bloating was astonishing, I couldn't fit in my own pants, I looked 2 months pregnant. I would go to the dr. but everything looked "fine" to them.
This year, I was happily planning for my wedding in June, but in March I started noticing that for about 4 days after my period I would have sharp persistent pain on my left side. By May, the strong pain was 24 hours, so I visited my doctor and she told me I had a 7cm edometrioma on my left ovary and a smaller 3cm one on my right ovary. She explained that I would need surgery to remove the cysts, and that there were no clear guarantees that I would have children of my own.
Well, you all know in your hearts what it feels like to be told you have an incurable and incredibly painful disease AND that you may never bear a child. There aren't any words to describe the fear and hopelessness I felt after that. I came home and down on my knees begging God for a solution and asking him why? I was the only person I knew with this condition and I felt so alone and so misunderstood.
Afterwards, I went to 5 different doctors searching for a solution, and planning for a wedding at the same time. The last doctor I saw told me he could save my ovaries because the cysts were on top of them and didn't devastate the tissue as the 1st doctor thought, this gave me some hope, so we scheduled a laparoscopy in August.
By June, I was pretty desperate for surgery because now the endometriosis pain was unbearable. It would start on the cyst and radiate all the way to my lower back, it would wake me up at night literally as if somebody would stab me with a knife. To avoid those night crisis I would set up the alarm every 4 hours and take a pain medication beforehand, because if I waited for the pain to start it would take over an hour for the medication to settle me down.
I was taking 12 extra-stength Advils a day, I would cry desperately, I felt handicapped, I couldn't stand up straight, couldn't sleep and I couldn't have sex with my fiancée, this was specially frustrating. Even though he was always very supporting and understanding, I felt this disease was sabotaging my relationship, what a heartbreaking feeling..
So I go on and get married the last week of June, I was so busy, excited, and happy that week for some mysterious reason there was no pain?! But right after the wedding it came back with a vengeance and on the evening of July 15th my big left cyst ruptured. Again, no words to describe the agony. I pretty much almost died according to the surgeon. I had an emergency laparoscopy done, my abdominal cavity was full of blood (sort of like a peritonitis). They cleaned me out and extracted the cysts, leaving my ovaries alone.
After that difficult process, the pain disappeared completly and I was very satisfied thinking I was over the worst part. I would constantly visit my gyno, and he tells me I can start a round of clomid. As soon as I started clomid, the pain gradually started to return. In 5 days my pain was back. I go back to the doctor after taking clomid for 5 days and he tells me I was developing very quickly a new endometrioma and it's growing back fast. This was 2 months after my surgery.
This second blow was specially hard on me, I didn't tell anyone, not even my husband, mother, sister or best friend.. this all too familiar diagnosis, my worst nightmare repeating itself.. I left the dr's office crying again, and spent many days very depressed, very angry, and very resentful.
The word endometriosis never left my brain. But this time something changed inside me, I decided I was going to change my life, and swore to myself I would find a solution. I was determined I was NOT getting another emergency surgery. And I was NOT going to keep popping pills the rest of my life, and specially I was NOT going to give up on my hopes of having my children.
So, I started to research endometriosis online and came up with tons of information, and came up with this web site where I found tons of very insightful information.