Hello friends! I’m so glad you’ve found your way to this blog, and hopefully to some peace, hope and sisterhood as well! I’ve volunteered to share my story with endometriosis, and the funny thing for me, is that it really begins at the end. Well, the end-ish. But that’s not very fair to you, dear reader, so we’ll start at the best place possible, about 12 years ago.

See, about this time is when the dear hubby and I started to think about trying to get pregnant. We weren’t really set to get knocked up at any specific time (well, he wasn’t maybe, but this girl wanted babies!) so we decided to stop trying to not get pregnant. I’m the youngest of 5, and no one in my family, or his for that matter, had ever had any difficulty getting pregnant. So we sat back and waited for it to happen. And then we waited, and we waited, and we waited.
I started to get a little freaked out. Surely I would get pregnant. Maybe we just weren’t timing things right.

I started doing research and tracking everything. My temperature, my periods (which were so irregular they were hard to keep any track of) and everything else. After three years, it was still just the two of us. So I decided to make a doctor’s appointment to get things checked out.

My periods had always been irregular and cramping wasn’t something I had missed either, but surely these were things that all girls dealt with, right? According to my doc and all the blood work - yes. There seemed to be no rhyme or reason for my lack of pregnancy, so she said to just keep trying. And everyone else pitched in their two cents worth also. I don’t know how many times I’ve heard “just relax” or “you need to stop trying” or “it’ll happen”. Ugh. Pithy platitudes only go so far. And when you’re trying to get prego, they don’t go far at all. But we kept trying.

Over the years, I went to medical doctors, nutritionists, chiropractors and acupuncturists. I was poked, prodded, timed and temperatured. I changed my diet, my exercise, tested my faith and curled in pain. After about 6 years I finally got my first diagnosis - Polycystic Ovarian Syndrome or PCOS. But all the doctors swore they could help me get pregnant. So I underwent a new round of evaluations. I had ultrasounds and saline flushes to test patency of my uterus. I was told I had cysts 3 inches big in multiple places on both of my ovaries. I asked about endometriosis, but was told I didn’t have it. It was all about the ovaries. But it was OK, they were still going to help me get pregnant.

So I started a new round of treatment. I tested for ovulation for two weeks every month and had periods the other two. My cycles had gone from not only irregular but I would begin spotting or lightly bleeding, which would last for two weeks, and then start a regular full-blown period. I was exhausted all the time and likely a bit anaemic. And I still wasn’t ovulating. So my doc put me on Clomid, which helps you ovulate but it also increases your chance for ovarian cysts. It was kind of a catch 22. Sometimes you can’t win for losing. I tried a few rounds of the Clomid but to no avail. So they decided to give my ovaries a chance to chill out and put me on birth-control to regulate my periods. That worked for about four months and then my body became used to the hormones and my periods took over half my life again. Eventually I found a new doctor and begged her for help.

I was at my mental and emotional end for trying to get pregnant. By this time we had adopted our daughter from foster care and were in the process of adopting twins. While I desperately wanted to get pregnant and experience motherhood in that way, I wasn’t sure I could do it anymore. The emotional and mental strain was just too much. And it shouldn’t be that difficult! Why was it that everyone else had no problem getting pregnant but I couldn’t? That all these people who were wretched parents had multiple children and I couldn’t have just one? I was done. Giving up. PCOS wasn’t supposed to be that hard to battle. But apparently mine was. I begged for a hysterectomy but my doctor wanted to give it a little more time. Without a choice, I agreed.

Soon my husband was offered a new job and we found ourselves moving out of state and far away. While I was tired of trying to get pregnant, the Clomid was the only thing that seemed to regulate my periods. It just had the lovely side effect of making my already present cysts bigger. So while my periods were finally somewhat regular, I found myself in the doctor’s office and ultrasound room to monitor my ever present personal demons. I was able to find a new doctor and for the first time, someone listened to me. She agreed that I had fought long and hard to get pregnant and if I didn’t want to try any more, I shouldn’t have to - regardless of what other docs and all my friends and family said. She understood that the only successful treatment for my condition would be a hysterectomy so she referred me to a surgeon with new fancy schmansy robotic surgical abilities, and I made my first appointment.

My surgeon was phenomenal. We discussed my history and concerns and she agreed to perform my surgery. As time drew nearer to my surgical date, the calmer I became. I started blogging about my experience and pitched the idea to a publishing company. They took the idea and signed me for a book contract. If others had to deal with this, I wanted them to know that they weren’t alone.

The morning I went under the knife, I signed away my uterus and potentially both of my ovaries. We had discussed leaving at least one of the cyst-ridden darlings, for hormonal control and bone density, but if it came down to it, she had the legal go ahead to take both.

One of my first memories after coming out of the anaesthesia induced haze was of my surgeon. She gently swept a stray hair behind my ear and with a look of relief told me that I was going to be feeling much better now. When she came into my hospital room for her first post-op evaluation, I knew why. She told me she didn’t know how I had tolerated what I had for so long, that not only were both of my ovaries completely obliterated by the cysts, I also had extensive endometriosis. It covered my intestines, my stomach, and various places within my abdomen. They took out what they could, but she warned that it was far more extensive than my surgery would be able to manage. And with the state of disrepair both of my ovaries were in, she took those too.

So now I knew. I had questioned endometriosis but no one had thought I was correct. I knew PCOS couldn’t be the only reason for my infertility, and I was right. And the surgery wasn’t going to be my cure-all either.

They took out the baby maker in July 2012 but I still have endometriosis. And while I no longer have a uterus or ovaries, I still get cramps like I did before. And I’ll continue getting those monthly reminders until all of the endometriosis clears on its own. So while I didn’t know for sure it was a cause of my troubles, endometriosis was always the silent culprit in my pain and infertility. Had I found out sooner, I may have been able to do things differently. But I didn’t. And that’s OK. We are all given our lot in life, and this was mine. And if my story can help someone else, then it was worth it.

You’re not alone, sister. You don’t have to suffer in silence. And as you face your own journey, I wish you peace and most of all, I wish you hope.

Take care.

Thank you for sharing your story Marcy.

If you would like to contact Marcy, you can follow her on Twitter @MarcyNellHanson. You can also visit her blog over at Marcy Nell Hanson - The WriteLife.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.