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. 

Weight & Endometriosis

The battle of the bulge is what is what I like to call it. Chronic inflammation, Bloating, weight gain and pain.

We as Endosisters know all too well how much of a problem this is, how annoying it is and how painful it is.

I am Wheat, Spelt and Dairy intolerant so I do my best to remove those from my diet but really it is hard isn't it? I have tried every single diet known to man and there were very few that helped. Paleo takes away all grain and dairy and for me that did help with the pain in the bowels that I get but I still felt bloated.

The hard part with dealing with this problem is medications and hormones because you are constantly craving carbs and usually bad carbs and complete junk. Well for me that is the way it is for sure.

Since my first surgery in 2007 the same year I was put on Marvelon continuously after Lupron I have never been able to keep weight off and I am constantly bloated all the time. I don't get a period which is great but I hate feeling like I am pregnant all the time.

It has been 6 yrs now and I have been on at least one med that entire time so the chances of anything changing for me is minimal. I would say however I don't exercise because of the extreme chronic fatigue from the Endo and Fibromyalgia. I am tired and have no energy ever so I can see also why the weight seems to stay on.

Where does the weight go with you? Mine for sure is in the thighs, hips and Belly. Never to the place where I want it to go like my breasts LOL..

I know that Diet, lifestyle, and exercise are key to combating this problem but as any Endosister knows sometimes its just quite impossible and you get down on yourself. It is like a vicious circle.

What do you do to help with Chronic inflammation, weight gain and bloating?

Bowel Pain and Endometriosis

Today I am going to talk about Bowel Endometriosis. The symptoms for Bowel Endometriosis are;

• Painful bowel movements
• Constipation
• Diarrhea
• Alternating constipation and diarrhea
• Intestinal cramping
• Nausea and/or vomiting
• Abdominal pain
• Rectal pain
• Rectal bleeding
• 
  

When I was 7 I had bowel surgery for Intestinal Volvulus and I feel that a lot of the symptoms I have including having Endometriosis on the bowel contributes to the pain I suffer in daily. Food is my enemy on every level.

From the time I was born I would regurgitate a lot of Dairy and wheat so finding out I had an intolerance to Spelt, Wheat and Dairy made perfect sense thinking back. My pain level from surgery at 7 yrs old until I was 14 yrs old was not bad at all in my bowels.  I never had side effects from the surgery and because I was young I guess I healed quicker than an adult would.

When I turned 15 I started to get severe rectal pain. Sharp stabbing pain that would come on at anytime. I never put two and two together with my period because this pain would be random. However the day before my period my bowels would completely evacuate and that was very abnormal for me as I was always constipated. That was the indicator for me to start popping Aleve or Naproxen whatever I had on hand. If I didn't and I waited and my period came I would be in for it because no med would help at that time. During the course of the week during menses I would become constipated again and the pain would be so intense until around the 5th or 6th day when I could finally go then the pain would subside to tolerable cramping (if that is even what you would call it)

I finally went to see a Gastro and she performed a colonoscopy at 15 yrs old and found nothing called it IBS. UGH!!! Never believed it but had no choice to let it go since every test I had came back negative.

During my surgery they found and removed a recto-vaginal nodule, a Mensentric cyst (Mesenteric cysts are rare and are found in approximately 1 of every 100,000) in the sigmoid colon plus bowel Endo. The doctor shaved and cut out the Recto-vaginal cysts and I was told all the Endometriosis was removed.

After all that was done the rectal pain disappeared, it no longer hurt to have a bowel movement but I was still constipated, so instead of being 7+ days constipated it was 3-4 days before I could go.

Three years after my first surgery in 2007 I started to get bad pain the right side underneath my 3 inch laparotomy scar it was like the stool was getting stuck in that area and would become trapped and you could see a huge lump and the pain was intense. Also it coming down the rectum I started to get a sharp knife like pain and would feel like it ripped me. I started to do enemas after my surgeon told me that it wasn't Endo and to move on. How can someone move on in this sort of pain? That is the one thing I never understood about this doctor at all. Needless to say had to find a new doctor because he refused to operate on me again because I was too high risk because of the damage done from the first surgery.

While waiting the 3 yrs I could barely digest food, so no raw uncooked food, no meat, no wheat or Dairy because it would just make things worse, so I had to juice and have soup and soft foods like mashed potatoes and rice etc just to eat and not feel pain. I was doing 3 enemas a week just to not be in pain and to be able to go to the bathroom.

In February of 2013 I finally convinced a surgeon to operate on me after an entire years hopped on meds that I knew wouldn't help me just to satisfy them and tell them again that the pain is still here the meds have done nothing!!

I did have a partial bowel obstruction from adhesions as well as an embedded ovary and ureter in the same area. My left ovary was stuck to my uterus and the uterus was stuck to the bowel. Needless to say the surgery got too complicated and she closed up leaving the organs embedded into the pelvic wall only to cause me problems later. UGH

So here I am in pain when I eat. It is like my body is rejecting food and can't break it down properly. I have no idea what to do next or if this is a permanent thing thanks to Endo and taking 14 yrs to diagnose. I feel that I have to accept that the damage has been done and it is not irreversible and that I have to come to terms with this being my life. Right now I am just not there yet.