Why I'm Broken - The physical toll of PTLS.

As you may have read on my old blog, I've always had back issues and even have a birth defect that puts my bottom two vertebrae too close together. But over the last ten years, something else has made things even worse.

Many of you are probably wondering what PTLS is. Well, it's a so-called "Phantom" disorder (ignored by doctors, suffered with by many women all over the world.) PTLS stands for Post Tubal Ligation Syndrome. After five kids, high fertility, and a weak uterus, I decided not to have more babies. I was told the safest option was to have my tubes tied and insurance would cover it. Side effects were limited to infection after surgery and a higher chance of tubal pregnancy if the tube allowed an egg too far. Well hell, I was in for that! I was a good healer and infections were treatable, Right?

Little did I know, the simple procedure I had after my c-section with my youngest would be the biggest mistake of my life. Not one month after I stopped breastfeeding and my hormones began to return to "normal", my health... well honestly, it went to shit.

The first thing I remember was my hips aching, sometimes to the point where I was mostly bedridden for days at a time. Next up, periods so heavy and painful that at least two days a month I couldn't (and still can't) leave the house. Oops, here comes something else! My formerly well-controlled depression and anxiety caused me to max out the dose on my current medication and eventually panic attacks that lasted fourteen hours necessitated the change to another medication. I've been through about five now.

Oh hey, let's not forget about the GERD (Gastroesophageal Reflux Disease)! I'd had signs of GERD for a while but now it was ridiculous. Constant acid and stomach fullness and pressure in my chest. Every few months symptoms will get so bad that they mimic a heart attack. It's even landed me in the ER.

By now, my symptoms were enough to make me wish I didn't exist. I don't really entertain the idea of suicide but if I could have vanished into thin air, it would have been a relief. But alas, PTLS wasn't done ravishing me yet. Let's throw in joint pain (especially in the knees); stiffness and pain in other muscles and joints also. Then one day a month, between ovulation and period I started to get powerful gas, nasty tasting burps and diarrhea. Oh, and the vivid dreams...wow! They are always accompanied by intense headaches. Shoot, lets not forget the hot flashes, night sweats, hair loss/thinning, weight gain, and inability to lose weight. It truly is how many others who suffer have described it to me - like perimenopause smacked you upside the head. Times ten.

Over time and with the help of a good doctor we were able to discover that some symptoms were caused by thyroid issues - issues I'd never had before. Meds helped some of the symptoms but not nearly as well as my hypothyroid friends who didn't develop it because of PTLS.

So, what now? My choices are - Tubal Reversal or Bioidentical hormone treatment. So why am I not doing that, you ask? Well, for starters, the reversal surgery is expensive, not covered by insurances, and not done by many doctors. That leaves me out in every case. Besides, I absolutely can not get pregnant again without endangering my life and that of a baby. So, what about the hormones? Well - 1. Good luck finding a doctor who does the treatment. 2. Good luck getting the blood tests to come back saying exactly how the treatment should go. I know many women whose blood tests came back normal but through many months of trial and error and strange symptoms, they found a hormone combo that worked. And 3. Good luck finding a bioidentical doctor that takes insurance and insurance plans that cover the bioidentical hormones.

So, what's next for me? Well, I'm just going to have to wait for menopause and pray that the symptoms get better and not worse. Some women show much improvement after they reach menopause and their hormones are at a more steady/low level than during PTLS/Perimenopause.

NOTE: A few years ago, my doctor put me on Celexa for my depression and anxiety. He also thought it might help the pain I complained of. Celexa is used to treat Fibromialgia. Several PTLS sufferers I've met have gone on to be diagnosed with it so now I need to be able to afford testing and to be able to take my Celexa regularly because it does help a bit - but alas, it also inflames my GERD badly.

But still, I trudge on, finding joy where I can - My family, My best friend, and sometimes writing when I can manage to do it. That's why I'm on this blogging journey - to be able to write again and have more joy.

Until Next Time...