Here We Go!

Hi there! My name is Goony and this is my story. I have stage 4 Endometriosis. I've probably been suffering with this disease since puberty, but I wasn't officially diagnosed until I was 30 years old. If you have Endometriosis I would be willing to bet your story isn't that different than mine!
During my teenage years I knew that something was different about my period. It wasn't the same as my mothers, my aunts, or my friends. While they had 4-5 day periods with a seemingly normal flow, I would bleed for 6-7 days, and the flow was very very heavy. I would pass giant clots. I would be in horrible pain. I couldn't function.

In my twenties I started going to gynocologists on my own to try to get some help with my periods. My periods had gotten so bad that I was missing work. I couldn't leave home without a supply of heavy duty pads and tampons and making sure I had access to a bathroom at least once an hour. I would usually spend a day or two in bed because of the pain. I went from doctor to doctor and was told that it was normal. I was given your run of the mill birth control pills that I would take for a few months and then stop because of the nightmare side-effects.

When I was 24 I had my first hysteroscopy/D&C. The doctors found a septum in my uterus and it was removed. I got pregnant just a few months after that operation and delivered a healthy baby boy nine months later. The nine months that I was pregnant was like a vacation because I didn't have to deal with the monthly pain and bleeding. After he was born my periods returned and they were worse. Not a whole lot worse but worse all the same. It was just something I would live with I guess.

When I was 28 I delivered my second child. I did not have a hard time conceiving with either of my boys, and the pregnancies were a welcome vacation from my nightmare periods. I nursed my second child for 9 months and my period didn't return until I stopped nursing, so I had 18 months of NO periods. It was great! But this time, when they returned, it was hell. My periods came back full force and worse then I ever imagined they could be. Not only was I dealing with pain during my periods, but pain throughout the month. I was in pain about 3 weeks out of every month. Debilitating pain

In 2003 I went to see a doctor about my periods and the pain that I was in. I was diagnosed with ovarian cysts and was prescribed birth control. I tried several birth controls like the nuva ring, yasmin, etc. Nothing helped. One day I started bleeding and just never stopped. I blead everyday for 11 months. My doctor prescribed premarin I think to try to stop the bleeding but it didn't work. In March of 2004 I had my first laparoscopic surgery. I was diagnosed with Endometriosis/Adenomyosis/Ovarian Cysts/Pelvic Congestion Syndrome. Well at least now I knew why I was in so much pain! I believe we tried some other pills for a few months with no luck, and in August 2004 I had a hysterectomy. I just couldn't take the bleeding and pain anymore. My husband was missing work every month to take care of our children and me because I couldn't get out of bed. I would wake up in the morning in a pool of blood even though I took measures to try to prevent it, like going to sleep with a super absorbant tampon, and 2 nightime pads back to back. Our matress looks like something from CSI.

After the hysterectomy, the bleeding was finally over. And it appeared that the pain was too. Until 7 months later when that old familiar pain returned. I couldn't believe it. I went back to the doctors and told her that the pain had returned and it was just as bad as before. She treated me like I had the plague and I wasn't too happy about that. I gathered my file and told her she was fired. On to the next doctor!

The next doctor I found listened to me describe the pain I was in, and looked at my file and seemed to agree that the endometriosis was back. I had another laparascopic surgery in June 2005. Endometriosis was found and removed. This time the surgery only bought me 3 months. The pain returned and so did more ovarian cysts. I tried more birth control which only turned me into a bigger meaner version of myself. I was impossible to live with and just couldn't tolerate the hormones. The doctor offered Lupron or Danzanol but knowing my reaction to birth control pills and doing my homework on the side effects of these drugs and their success rate I chose not to use them. I don't regret this decision. I regret that their isn't a better alternative. I was given natural progesterone from a compounding pharmacyst and the side effects wern't bad so I took that for months. Not much help.

In August 2006 I had another surgery. This time a cystectomy. The ovarian cysts were becoming more and more frequent. The pain was unbearable. But I marched on.

In March of 2008 on top of the monthly endo pain I started having an agonizing pain on my left side where my ovary is. But, I had so much going on in my personal life that I just kept blowing it off. I did go to the ER at one point and an ultrasound was done and I was told there was nothing and sent home. A few weeks later I followed up with my doctor and an ultrasound showed a baseball sized complex ovarian cysts. Nice Work ER! How Did You Miss That!? I was told I needed to have surgery. The pain was unbearable and I was given vicodin. So on June 4th 2008 I had yet another surgery to remove the cyst and the ovary. It couldn't be saved. The doctor also removed Endometriosis from ligaments, cul-de-sac, and my vagiinal cuff. He had to remove adhessions just to get to the left ovary and removed more from my bowel. He also removed a large cyst on my right ovary. Whew I'm tired! I knew within a week of the surgery that something wasn't right. I wasn't feeling like I was getting better. The pain wasn't getting better. The same pain I had the surgery for was continuing and it was bad. I went for my follow up 3 weeks later and an ultrasound showed another 4 cm complex cyst on my remaining right ovary. Either the one he removed grew back or it was new, he wasn't sure, but he said that he did his best to remove the one during surgery but that it was in bad shape.

So here we are in September. Just 3 months since my last surgery. I have spent the entire summer lying down and drugged up on percocet. The pain this summer has been the worste it's ever been. I forgot to mention that back in November I started eating a RAW diet. I started taking lots of supplememnts, juicing, drinking green smoothies, became a vegetarian. I completely changed my diet. And all the while becoming worse and worse. That being said, I'm not giving up and will continue my vegetarian diet, and sometimes RAW diet. We'll see. My right ovary has been working overtime since the LSO. It's been creating cysts and absorbing them, or rupturing them faster than the doctors can keep up with. At one point i had 6 cysts on the ovary. I have been to the ER 5 times this summer. My doctor is one of the few doctors at this time doing a new cutting edge surgery using a robot. It's called DaVinci Robotics Surgery, and I will be among the first to undergo surgery using this technique. It is supposed to be less invasive and give the doctor a 3D view inside your pelvis rather than a 1 dimentional view. I'm having a peritonial stripping done on October 13th, along with him removing any adhessions that may have formed that could be contributing to the pain. It's also possible that I have Ovarian Remnant Syndrome. We shall see! All I know is that the pain that continues on my left side is at times debilitating.

Wow! That is a long story huh! If you have already been diagnosed then I bet you have a story just as long. If not, I hope that my story will help you to get diagnosed sooner so that treatment might work better. I've heard that hormonal treatments do work better for less severe endometriosis. I encourage you to speak up to your doctor. Do not let them tell you it is normal when everything in your gut is screaming that it isn't. If your doctor isn't helping you then get your file and leave. The doctors work for us, not the other way around. You have to be your own advocate! Don't just accept what they tell you. Be an investigator! Try diet changes. Try supplements. Try accupuncture or accupressure or yoga if you can afford to! Don't stop looking for a way out. I'm not! Do something to take back control. This disease can make you feel powerless. Take back your power!