Endometriosis – My story Part 2

After graduating from college, I moved to Dallas where I was lucky enough to find a specialist who would actually see me.  Not because they weren’t taking new patients…no, they only saw patients that were actively trying to get pregnant.  Well at 22 and being unmarried that was definitely NOT the direction I wanted to go in.

So I met Dr. Howard who I instantly loved.  His bedside manner was the best of any doctor I’ve ever met. He truly made you feel like he cared. I could tell him anything and he was happy to help, offer suggestions, and treatments all without judgement.  Before surgeries, I had my parents come to an appointment with me so they could be my 2nd and 3rd set of ears and ask questions that I probably would miss since all I could think about was being cut open again. He gently walked them through it and explained everything on a very real level so we all left his office feeling good about it.

I went through another laproscopy with him, we found that adhesions were starting to be an issue with the endo acting as string – moving things around. At this point, with the condition getting worse and not better, I decided to move forward with the Lupron.  I was on it for a total of 12 months – 6 months a short break and then another 6 months.  At this point I realized menopause is a real bitch (pardon my French but if you’ve never had a hot flash in the middle of a 100+ degree Texas summer you really don’t understand).  Not to mention, you have no energy, you hate life and feel like life hates you, I hated every minute of it.

A year after that treatment, I started having symptoms again so we did another surgery.  That’s when we found that I had andomyosis, which means it was growing inside organ tissue, and even worse it had blocked both of my tubes (at both ends) and on my ovaries.  I basically heard the death march for my entire reproductive system with that news.  I poured myself into research – what were my odds of children?  My doctor assured me that he would do everything he could to give me a chance at a family when I was ready.  At this point I was probably 23 maybe 24 – no boyfriend and no signs of being ready for a child any time soon. My chances were not going to improve as time went on.  My quality of life was getting worse and worse – one day a month of feeling bad became 3 days of not being able to leave the bed, and close to 2 weeks of living in pain.

I won’t lie and say it was an easy decision. I would never advocate anyone ever make the decision to have a hysterectomy to treat endo. But for me, I felt like it was best.  Telling my parents was the hardest part.  Being old enough to make a decision like that is one thing but telling your loved ones that they will not have grand kids from you because you are choosing to go through a radical treatment for a condition, that’s another. Thankfully, they both understood after talking with me.  I had to see a psychologist who would need to give me a clean bill of mental healthy before my doctor would even talk to me about the option. My doctor talked me and my parents through the procedure and the hormone treatments that would follow and be part of my life for the next 40+ years.

I was 24 the day I went in for surgery. To say I never think about and wonder what life would be like if I hadn’t made that decision is a lie.  As I get older and I have the conversation with guys I date about what my selfish decision would mean for us if we ever ended up being serious and eventually married is terrifying and awful. I’ve had good reactions, I’ve also had bad reactions.  Now that family and friends are starting to have babies, its even harder.  I’ll never have those memories of feeling the baby kick, or hearing the heartbeat for the first time. Again – I wouldn’t wish this for anyone.

But do I honestly regret my decision? 99.9% of the time I will tell you no.  I lived life in pain almost half the month.  I was on prescription strength pain relievers that left me foggy and out of it sometimes.  At 23 I was having hot flashes because I was in a chemical menopause.  My quality of life was awful. No one should have to live like that either.  Yes – it’s hard…but for me, personally, worth it.

I have come to terms with the fact, I can adopt or maybe one day my person will have kids already and I can just be an awesome step-mom.  I don’t know what the future will actually hold for me when it comes to a family.  But I am hopeful that when I find the right person, all that will fall into place.

More than anything, I want people to realize that as with any condition, you have to take control of your treatment.  You have to research, you have to go with what you feel is best.  If I had taken the first doctor’s clear bill of health – who KNOWS what kind of state I would be in now?