My name is Diana, and I am 31 years of age. I live in Mount Prospect, Illinois. If Ms. Oprah is having a show on this topic, please let me know. I’d like to sit somewhere in the back!
I am so happy that I came across this website. I feel as though I am not alone in the decisions that lie ahead of me. I was diagnosed with PCOS in March of 2001. For so many years, I believe myself to be not like other women. I felt very masculine and unattractive for so many years. It is this feeling of insecurity that has shaped my past, but I am determined not to let it shape my future....thanks to the knowledge i have gained from this website!
I started my journey into womanhood at age 10. I got my period that first month and then “my friend” didn’t return until one year later. I was so irregular and for me at my age, it was great. I truly did not realize the problems I would have later in life…I just thought of my missed period as a blessing. Who really rejoices when you are a bloody mess, especially in the mind of a 10-year-old.
So as I grew, I began extremely self conscious about the dark patches on the back and sides of my neck, as well as my armpits, underneath my breasts, and between my legs. Yuck!! It bothered me soo much to not know what caused it. Unfortunately, back then there was no such thing as the internet. So i had no idea. Because I didn’t want people to think I wasn’t clean, I tried to conceal as much as possible. I showered daily and scrubbed those areas every day until they were practically bleeding. I even went so far as to use laundry bleach to try and clear it up. I did nothing but severely burn my skin at the time. The things teenagers do in their infinite wisdom. I was so insecure with myself and how i looked. I never thought i was worthy of a boyfriend in highschool, or college, and after I graduated I sank myself into work. I have always had this feeling that children were not in the future for me, although I love kids dearly.
At age 29, I had my first boyfriend. We’ve been together now for two years. He saw past all of my cosmetic problems, and loves me for the crazy nut of a woman that I am. During my rollercoaster ride to good health, he has been seated next to me, holding my hand through all the dips and turns. He is a remarkable pillar of strength for me. I never knew a man like this could exist. He is my best friend and the love of my life. He is my sweetie, Ali.
Getting back to my history…. (I think of Ali and I always get sidetracked!) I finally decided at age 29 to get myself on track, and make that first appointment with the gyne. She did the usual tests...pap, bloodwork, ultrasound. I told her about my complaints of my skin problems, my lack of periods, and weight gain and facial hair. She basically told me it was all part of being a woman and there was really nothing I could do about my skin problems. "That's just the way God made you, hun" was the reply i got. Never did she mention the thought of me having PCOS…even with the ultrasound which revealed many folicles on my ovaries…She never put two and two together. She used bcp to regulate me.
I did amazingly well on the bcp’s. I was regular for the first time in my life. I had lots of energry between cycles, and even started to lose weight. I thought to myself, this is great!!! But little did I know it was only masking the problem. So I had only four good months on the pill. Only 4!!! In January 2001, I had the worst period ever. It lasted 10 days and was full of clots! I was tired all the time. I went back to see the gyne after day 7. I bled all over the table and all over the floor. She could not understand why my body was doing this. That frightened me! She recommended that I double up on the birthcontrol pills if it didn’t taper down in a day. I just looked at her like she was crazy!
In February 2001, I was diagnosed with a DVT or blood clot probably caused by the BCP’s. I was hospitalized for three days on heprin throughout my stay. Then i came home to mom for a week. I was prescribed coumadin therapy for one year. And no more BCP’s. By the grace of God, the clot did not move to my brain or lungs whereby causing a stroke or death.
Having lost my faith in the gyne….I switched to a new one. I told her my story thus far, almost in tears at the thought of coming so close to losing my life. She was great. She ran all new tests, and consulted her collegues about me. Ultrasounds and blood work were done…and in March 2001, she diagnosed me with PCOS. I had no idea what that was. I just thought I had big ovaries!! I had no idea how it affected my body! The fact that I was on coumadin for the DVT was a problem. So basically she recommended no hormones of any kind for now…She wanted to give my body time to recover from the blood clot and the effects of the Bcp’s.
So a year went by with no period. For ali and I, this was great! We had a great time! woo hoo! But deep down we knew something was wrong. I just didn’t want to go back to the hospital again. I had gained about 20 pounds. And the dark patches and hair growth increased. So when my annual exam came up, I informed her about my weight gain, lack of periods for a year, and that I was on the coumadin for a year already, ready to come off. I also told her about some minor twinges and pulling that had happened a few months earlier. I was given a pelvic exam, and sent for an U/S and blood work.
During the ultrasound, it was as plain as day on the screen. There was something solid there! I thought to myself..”oh my God, I shouldn’t have waited so long! I should have come back to her after 3 months!” I was so upset after I had the ultrasound, that I got into a car accident on the way home. Not a good day at all!
My gyne informed me that I had a complex mass on my left ovary and a mass on the right ovary. Okay so what is that?!!! She referred to a Gynecologic Oncologist. He recommended surgery (LAP) to take a look at what was going on inside.
The surgery was to last for 90 minutes. But I ended up being in there for 4 hours. They found that the complex mass had caused the left ovary to fall out of its anatomical position (which was probably when I felt the pulling). A decision was to remove the mass and left ovary. I woke up to hearing that they had to take one of my ovaries out. If I could, I would have sat up and screamed. But nausea overtook me. I just layed there in recovery, thinking about my loss, and the children I will never have.
The preliminary biopsies came back normal. Underneath it all I was ticked off, because I thought my ovary was still good, and they could have saved it. But there was nothing I could do about it now. It was gone! So I was discharged after 23 hours and I went home to Mom, again! After three days, I spiked a fever and tried to manage it with Tylenol. I was determined to go back to my apartment and to my sweetie Ali. So on the way home, I noticed that my incisions were leaking…and back to the ER we went, this time with a severe staph infestion.
FOR 5 WONDERFUL DAYS I was admitted to the hospital hooked up to continuous IV antibiotics! I was soo upset at this point. I could not believe I could have died because of someone didnt wash properly. It was while I was there that I was given the results of the final lab report that reveal that the complex mass turned out to be borderline malignant. Also the uterine lining showed signs of hyperplasia! YIKES!!!!!! Well then.................... it was a good thing that they took it out then!
God works in mysterious ways. I was no longer morning the children I would never have…but rejoicing in the fact of how fortunate I was for my doctors to catch it before it developed into anything (ovarian cancer). Again, God works in mysterious ways!
I should mention that I did not know that all these symptoms I had were PCO related. Not until I came across the SOULCYSTERS website. Armed with the knowledge from the website, I went back to see my gyne after the surgery. She then referred me to an Endocrinologist. The RE understood me completely. I told her my concerns that I not go into surgical menopause for fear of cancer. So told me not to worry and that she thought that I might be insulin resistant. She prescribed glucophage, and since then I have had 2 periods, and probably about ready to have my third one, since the surgery in May 2002.
So is my story a success story? I think so. I am still overweight, but very encouraged about keeping my remaining ovary. And for the first time ever, children just might be a possibility. I never had that hope before.
Recently, Ali and I made our first trip to Navy Pier…I have always wanted to ride the Ferris wheel and carousel. But because I was alone for so many years, I never did. Well, when we got there, he saw the rides as childish. I pulled him to the side and reminded him, that we could both be in a different place right now had I gotten sick or even worse, died. Having said that, he looked at me, took my hand, and we got on the carousel! I just love the horsies!!
Thank you Kat, for having the courage to share your story. Thank you reaching out to all of us with your experience with PCO. Thank you for giving us the gift of knowledge and the gift of our fellow Soulcysters.
My Rollercoaster Ride to Good Health.......very long 
