A Little Advice Would Be Nice

There are few things in life that will cause you to question yourself the way that chronic pain does.

Everyone has those moments they look back on and ask themselves “Did I do everything I could to make that work?” You think of the choices you made and the effort you gave and you question if the moves you made were the best ones.

Living with chronic pain is a lot like that.

When I was first diagnosed I was confident in the Radiologist who told me the embolization would fix me. I knew what was going on and I had a clear cut path to a “cure” for my PCS. When the pain returned the following year I was just as confident that a second embolization would fix it. When that didn’t work the path became much less clear, and since then I find myself questioning everything I do- and everything I have done- to bring me to this place.

For a few years now I have been pretty comfortable with the idea that my pain isn’t going away and once I got on a good pain management program I was even more content with my life. There are still moments that my pain flares up in a way that makes life difficult but most of the time it’s business as usual around here. (Business as usual of course being my own version of normal) But every now and then something pops up that forces me to look back at the road that brought me here and question if I didn’t make a misstep along the way.

I went to see my Radiologist in September to revisit the idea of doing a fourth Venogram to treat any grossly dilated veins. While Dr. H. was willing to perform the Venogram he was clear about the chance that it may yield little to no results. We also discussed the risks involved with having yet another surgery and the concept of doing more harm than good.

After all, there is only so much a body can take.

The prospect of having a treatment done that would relieve my pain was really exciting to me, but when I considered making the appointment I broke down in tears. For weeks I tried to talk myself into having this procedure done and every time it made me sick. Which is completely unlike me, since usually I am hopping onto the operating table cracking jokes while the nurses prep me. This time was different though, and even though I knew it could bring me relief my gut kept telling me this was not the way.

I spent about a month deliberating the procedure and another six weeks questioning whether or not that was the best decision. Was I being selfish? How much better of a wife, mother and friend would I be with less pain? Was I depriving my family of the version of myself they deserve just because I didn’t want to have a surgery done? Was I being weak because I didn’t want to face another recovery? Why on earth would I choose to keep taking pain medication when the very thing that could relieve my pain was a phone call away?

On a good day I was sure I had made the right choice, postponing the Venogram until it was absolutely necessary. On a day my pain was high I was reaching for my phone. Sometimes I would stare at the number on the screen, willing myself to hit the “call” button. When I finally did get the scheduler on the phone I cried and had to hang up. It still wasn’t the right path for me. When I brought the option to my Pain Specialists’ attention she agreed it wasn’t the best option right now, and we began talking about changing my medication dosages to help eliminate the frequency of my pain flares.

In five days I will go back to see her for my monthly check in and to discuss changing my dosage, and I am once again questioning everything.

Should I be increasing my meds when I could have a procedure done that might alleviate some of this pain? (This still doesn’t feel like a good idea to me) Even worse, is that I find myself questioning if my pain is really so bad that I need to take more medication. Is it possible that I have unreasonable expectations? Should I instead focus on taking more breaks, and utilizing more coping mechanisms not related to medication?

Another thing that pops into my head is the idea that maybe what I think the problem is, really isn’t the problem at all. What if I really don’t have PCS and this is something else entirely. Maybe it’s a result of the repeated surgeries I had done and this pain is a result of my own decisions?

I’m telling you, my mind is thick with questions and doubts about my own body. Perhaps the worst part of all of this is when I question my ability to tolerate the pain. I’ve always thought I was pretty strong, dealing with the pain in stride and doing my very best to live in spite of it all. But sometimes I wonder if my regimen is adequate and it’s me that falls short.

The reality is that there will always be pain, and there will be times that my pain flares up and there isn’t much I can do but breathe through it. Sometimes it’s for an evening and other times it lasts for days. There will never be enough medication or ice packs to make my pain completely disappear, but how much pain should I be enduring day after day? What constitutes adequate pain control? How many items on my “can no longer do” list are there for good reason and how many are a result of a deficit in pain management?

A girl could spin on this issue for days and make herself crazy. In fact, I sometimes do. I think that this kind of insecurity is typical in the chronic pain community since we are always wondering what more we could do to make our lives better. But I am really struggling here, so I am hoping you guys will know what to say to help me find my way.

2 thoughts on “A Little Advice Would Be Nice

Add yours

  1. I’ve also been diagnosed with PCS but haven’t been offered any treatment options yet apart from hormonal birth control (which I have very bad reactions to). I was told that until we have had our family they don’t recommend embolisation and that the other option is a hysterectomy.

    Unfortunately, I’m still trying to convince my husband now is the right time to start a family. He’s concerned about the impact it will have not only on my pelvic pain but on my Fibromyalgia and ME as well.

    My advice is to discuss it with your doctors. Explain the way you are feeling as you have in this post and see what they recommend.

    Like

    1. Often times birth control can make the pain worse so it always fascinates me when providers push it as a fix. The increase in hormones can actually make the dilation of the veins worse.

      I’m not sure who is treating you, but Embolization is safe to perform prior to pregnancy. I urge you to join the Pelvic Congestion Support Group on Facebook. (Google that title exactly) It is a wealth of information about treatment options, doctors all over who get rave reviews, success and unsuccessful stories of treatment. There are even a few providers on there willing to ask questions directly.

      The increase in pain is the reason we decided ultimately not to add to our family. My PCS pain didn’t start until 7 years after my youngest was born, but with each surge of hormones during pregnancy the dilation increase. There are several women in the group who have gone on to have pregnancies since diagnosis and embolization. Check them out, also feel free to email me if you want to take this chat private. I am pulling for you.

      Liked by 1 person

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