Thanks so much for sharing Sarah MacLeod and it’s great that you’ve found the Pelvic Pain Foundation (PPFA). They’re a wonderful group of people doing fantastic things. For those of you who haven’t heard about the PPFA, you may have heard of Adelaide Gynaecologist and Laparoscopic surgeon Dr Susan Evans who is on their board. This is Sarah’s story.
Believe it or not I actually had to pick between multiple positive points of my journey. As hard as dealing with endo for many years and then 24/7 pain for the past two years has been, it has forced me to take care of myself. The list of things I have tried to help that actually have could go on forever; physio, Botox, neuropathic pain medications, diet, exercise, remedial massage, stretches, acupuncture. The list of things that may or may not have helped is even longer. However all of them have made me healthier over all.
One of the best things I have found to help me is amazing support. A few months into my most recent journey with pain I found the most incredible support in the Canberra Endometriosis Network. We have an amazing supportive environment and through it I have also made some great new friends. Between them and having a partner who goes above and beyond, that is how I get through.
Sometimes telling somebody how you feel and them understanding is all it takes to make the goal of battling endo seem achievable. It is also a great environment for sharing knowledge, many people do not have access to the best specialists, are newly diagnosed and haven’t been told much or do just not have the most up to date knowledge for whatever reason. An environment full of supportive, understanding and informed women is to me the best place to learn.
When I sent Syl the above she asked me to write a little more about other aspects of my journey, so I shall! I am going to concentrate on the neuropathic pain medications and stretches. Luckily there is a whole website about them, so I can tell you ladies about my personal experience, and then if you are interested there is a link to follow.
These medications can do amazing things, unfortunately there can be a bit of trial and error to find the right one for you. Years ago I tried amitriptyline and never made it out of a zombie state, then I tried pregablin and it was the one for me. My pain reduced massively. Unfortunately more recently when my nerves flared up causing 24/7 pain I have had to add more medications to my regime. Without them and the Botox I would be bedridden with pain every day. Please consider asking your doctor about these if you have never been told about them. You can find more information here.
I also do daily stretches that help to relieve the tight muscles caused by pain. I feel it straight away if I accidentally skip them one day. Along with that I have regular remedial massage with a lady who has endo experience and will work on the muscles on my front as well as back. Initially I found the results unbelievable and now it’s a regular part of my self care routine. You can find the stretches I do here.
The Pelvic Pain Foundation website has a wealth of knowledge.
Thank you for reading and wishing you all a minimal pain day!