A question came up on in one of the Facebook Endometriosis support groups that triggered me to write this post. The conversation was about patients trying to go to the US to have surgery as Canada is very limited when it comes to Endometriosis specialist and in fact there are many provinces that literally have none. What is a patient to do when there is no care? Why are there more and more Endometriosis sufferers in general continuing to have surgery after surgery?
I have found that all over the internet people are having their 10th, 20th surgery like it is nothing to be worried about. It completely baffles me. I am not sure if people feel pressured to get more and more surgeries or that when they have pain they feel it is Endometriosis returning but unfortunately the problem with this disease is that it can't be seen.
The biggest problem all around the world is after care. Once your surgery is done where are you supposed to go and what are the next steps? Is the pain you are feeling really Endometriosis or could it be something else?
I myself have been in this situation and I myself have not followed through in doing the things that I needed to after surgery. Yes it is extremely possible for Endo to grow back if it was not removed properly however the pain we sometimes feel after a good surgery could be a variety of things and many women are having surgeries when they are not needed, only to cause more and more problems for them down the road.
So, that being said what are the next steps?
1) The very first thing with Endo that every woman should be aware of is that the first surgery matters a lot so make sure it counts. That means having surgery with an Endo specialist period. No OBGYN or someone claiming to be versed in Endo that is not good enough. You need someone who specializes in the disease and I know for some this is completely and utterly impossible and I will get to that in another post.
2) Rest. Once your surgery is completed do not try to rush yourself or try to pick up heavy items etc. Just because you feel good on the outside does not mean the inside is healed yet and you are putting yourself at risk of damage inside. Take it slow and let your body heal. Try meditating during this time and let the natural course of healing take place.
I am not an expert on the Pelvic Floor Therapy (PT) but I know it works for many people. That being said going to PT once a week or once a month does nothing when it comes to scar tissue. You need to find a place like Clear Passage. I know it is around $5000 a week but you are worked on for hours and its everyday. Your body has to remember the change in order for it to work so going daily is what will help but lets face it, how many people can afford that? I know I can't but it is something that I will be doing in the near future plus I would have to add in travel to the US as it is not provided here in Canada as of yet. What is your health worth? To me saving $5000 for Clear Passage is worth it for many reasons. It is good for women who have infertility problems, surgical adhesions, Bowel obstructions etc. I have heard great results from a fellow Canadian and Endo patient (See here and here) I think if you are interested in alternative options you really need to read everything they have on their site and even contact a consultant which is free of charge.
PT from Clear Passage is not only on the outside they also do internal and from what I hear very gentle and caring during the process.
Here are some statistics regarding adhesion formation after surgery. A lot of the time what we are feeling is not Endo but adhesions.
Below is a visual of what adhesions do to cause pain
I was able to speak with Dr. Wurn personally in 2009 at an Endometriosis symposium in Toronto and he was so helpful and caring about what I was taking about and to this day I truly believe that this is a vital part of recovery when it comes to Endometriosis and Adhesions.