Tuesday, September 22, 2015

Motherhood with Endometriosis

Infertility and Endometriosis is something that is talked about a lot these days and so it should be. It is something that is now getting more recognition in the last couple of years due to so much awareness from those that are infertile and those that are still struggling to conceive. Many of the women I have talked to and/or know that are going through this I truly empathize with.  

I really do wish my blog had more to do with infertility but I write from experience and for me after I had my daughter which I believe to this day is a miracle I never tried to have any more because the pain and suffering I went through with her alone was more than I could bear. 

During the first years of my daughters life (not diagnosed still at this time) I honestly thought I was losing my mind and the bowel pain I was going through was only getting worse. One night I actually saw demons that now I can describe as dementors (Harry Potter) I was literally losing it and I was yelling at my daughter and could not get any sleep as she was a very high maintenance baby and I was a single mother with no support in the early years. 

I had a dream that my daughter was hanging out the window and was calling for me and I just let her hand go... I watched her fall and I felt a huge sense of relief.. then I realized "what the hell did I just do?" and ran down to get her.. In my dream when I got there she just looked at me with this look of fear... of me... 

Around the time she was 3 years old I decided that I couldn't take much more after watching a program on Rogers TV about Post-partum depression and although she was 3 I really felt that I had that. Once I talked to the doctor in the ER he told me I just needed sleep and gave me sleeping pills. What if I wanted to kill myself? 

Around this time was when the 10cm complex cyst was found on my left ovary. I had been given marvelon (BCP) to deal with it and within a week it was night and day. I can't even explain the difference it made for me mentally. It was like I had a renewed life and I felt happier, I wasn't depressed and felt totally different with my daughter. 

So that being said most of my child's life (she is 12 now) has been filled with pain from Endometriosis, Chronic Fatigue and Fibromyalgia. It has been a constant battle to be a parent. There are times when I wish I never had a child and wish I could run away. I want to tell people with Endo not to have children but that wouldn't be right because my circumstances are much different than others. 

Being a parent with Endometriosis has been a life of saying I am sorry for being tired, I am sorry I need to lie down, sorry not today, sorry I can't play today, sorry you know how mommy's tummy hurts, sorry I wish I could do more.... you get the point right? I feel like I have been a horrible mother but I know that isn't the case. I just wish I could do a do over and not have Endometriosis and do all the things I always wanted to do with my daughter. 

As the days go by my daughter has become more self sufficient and it has made it easier on me because she can take care of herself, but it doesn't take away the guilt of not being able to give 110% to her. 

This disease has had it's challenges and looking back on it all and looking at my daughter I realize that I did a good job under all the circumstances. She talks about Endo to people and she empathizes when I am in pain and wants to help me. She believes me when I say I am in pain... I really think she was the first one to actually believe the pain of this disease before anyone else because she had to live with me every single day and see everything I did just to survive and I am still unsure if that is a good or bad thing at this time. I suppose time will only tell.  

I can say one thing for sure... I wouldn't be who I am without her or Endometriosis. 

What are my options after Endometriosis surgery when the pain returns?

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. 

 Clear Passage