Sacral Neuromodulation - its a thing
I wanted to take some time to share the latest instalment of my Endo journey.
A few months ago I attended a Qendo education evening, and one of the speakers talked about Sacral Neuromodulation. For those non-medical essentially it is a few wires up against nerves in the lower spine and a battery in your backside which is used for, among other things, abdominal pain. Now it is not the cheapest option, at around $50k, but I said to my husband as we left that evening, I didn’t care how much it cost I just wanted the pain gone. Not only do I have pain from the suspected return of my endo, I also have pain from the extensive scaring left from 10 laparoscopic surgeries and a bowel reconstruction. (see blog)
A few months passed as life was getting in the way, as always, until one day I just snapped. I went to my GP for a referral and amazingly I was in the surgeon’s office the very next morning. A few weeks later I had my trial leads put in with a temporary battery. The trial was a resounding success, my pain was almost gone, I simply couldn’t believe it. So the final surgery and fitting of the permanent battery was scheduled and fitted a few weeks later.
Now two weeks on from that surgery as the surgical scars (from yet another operation) are healing the reality is setting in. I am not in pain anymore. Sure I still get a little pain now and then, particularly from the scar tissue, but in general I am recovering quite nicely. When I say the reality is setting in, this is not all sunsets and roses at the moment. I have been in pain for my entire adult life, and most of my teenage years.
It is a very scary concept… Did I let the pain define who I was? Will I become a different person now that I am not in pain? These are questions I keep asking myself. Events through life change us, the bowel perforation and subsequent emergency surgery and more and more surgeries has changed me. I am not the same person I was before all this happened to me. So will no longer being in constant pain change me? Well I hope so. I look forward to not being tired all the time, I look forward to having more energy and being able to be more active. These are things that I am looking forward to.
This experience has made me ask a very important question. Did I let it define me? To that I have to say, yes and no. Did I let it control my life? Well sometimes I had to stay in bed rather than do things, but I don’t think I let it control me, because most of the time I just got up and carried on. Did I let it define who I am as a person? No, never, I hope, did anyone see the pain before they saw me. Did I ever refuse treatment because of a fear of losing the pain? Absolutely not, every treatment decision I made was about getting rid of the pain, I never feared not being in pain.
Which leads me to a bigger question… Do other women let endometriosis pain define them? Since my last surgery I have learnt that there are women out there who choose not to have certain treatments because it will remove their pain, and they (I suspect) fear losing the pain because in some way they let it define them. For me I simply can’t understand this, I have spent a life time trying to get rid of the pain, and when I was given an option to possibly get rid of it permanently I jumped at the chance. On some level I can appreciate why women may be afraid to remove something that has been a major part of their life, it strangely feels a bit like getting divorced or losing a loved one. For me to know there are women out there living needlessly in pain because they are afraid scares me so I decided to do something about it.
Very soon I will be launching the #itdontdefine me campaign on Facebook and Instagram giving a place where, I hope, women like me can come and share their stories of how they have worked through the pain and how they accepted living without pain. Visit her #ItDontDefine Instagram page
If you would like to be involved, we’d love to have you on board. You can email me at firstname.lastname@example.org
Till next time