Endometriosis – my story

*See my previous post here for some background information on the facts of endometriosis*

One of the reasons why I’m embarking on this GF/V thing is to try to fix, or at least improve, my endometriosis. I first got my period when I was almost 13 years old. Since that first time it has arrived each month like clockwork and each month it has caused me no end of pain and ‘discomfort’. I remember being curled up in a ball with my mom telling me to just take some tylenol and move on (in her defense, she never had cramps too bad so she thought I was just faking it – she has since repented of her mean-menstrual ways). I was on the pill for a few years in my late teens early twenties with the hope that it would help the pain. I don’t know that it did.

After moving to Toronto, growing up a little and getting more interested in women’s health, I started to wonder if maybe these things weren’t normal. I started tracking my monthly pain, researching things and finally went to a doctor who just wanted to put me back on the pill. I refused. She refused to refer me to anyone else. During this time (thanksgiving 2002) I had my appendix removed. I had thought it was my usual endo pain but it was getting worse, not better and a friend finally convinced me to go to the hospital (thanks Debbie!). I had it taken out the next day. I asked the surgeon to have an OB/GYN in the room to see about diagnosing my endo officially. He told me that’s not what they were doing the surgery for. Afterwards, he told me they had a hard time getting my appendix out because it was all stuck to everything (adhesions!) and that it had likely been giving me trouble for some time. Years later I learned that people with endo commonly have chronically inflammed appendixes (appendices?!).

After all this mucking around, I finally got a referral to an OB/GYN who agreed with me that I likely had endo and offered to do the surgery to remove it. I wish I had known then what I know now as I would have reconsidered having it done because it doesn’t always work but it always causes more scar tissue. Anyway, I did it and I got my diagnosis of stage 2/3 with endo on my bowels as well (which they couldn’t remove). There was some talk of medicating me, putting me on the pill and cautioning me about my fertility and I didn’t see her again. I had no interest in meds, unfortunately I also had no knowledge of the dietary stuff that could have helped.

I think it took me another year or two to figure out that red wine was the devil at certain times of the month. My cramps would be horrendous if I had wine within a week of getting my period. It took me another few years to care enough to stop drinking it at the bad times (what can I say, I’m a slow learner). And truthfully, I have pretty much stopped drinking it altogether (except for the odd glass here or there) in the last two years. I have switched to white because even when I wasn’t close to my period, if I had more than a bit of red wine I would feel crampy the next day at anytime during my cycle. Which is why I am thankful I am getting symptoms when I eat stuff I shouldn’t because I think that’s the only way I will get it into my head!

Over the past number of years I have been working with Laura (ND) to fix my endo. Several years ago she gave me a list of foods to eat (stuff I don’t mind once in a while) and a list of foods to avoid (everything I love). Most of the things she suggested fall into the anti-inflammatory, low estrogen category. Around this same time I also found the ENDO DIET cookbook – which basically re-iterated the no meat, gluten, sugar, caffeine, animals products etc. And was full of recipes of the sort. I have been eating recipes from that cookbook for a while, but always found it hard to stick to that exclusively.

Over the past year however, a number of new health issues have cropped up: gastrointestinal stuff and thyroid stuff.

TMI ALERT: Detailed bowel information to follow…

GI Stuff: About two years ago, I started having new bowel symptoms related to my periods. Where before things would tend to move well, they were now moving not so well and giving me some difficulty – but only on the first day or two of my period. And I was having some “spotting” where I would not expect spotting to come from – and again, only with my period. I talked to an OB at work and their opinion was that I was probably mistaken or it was hemorrhoids. Let’s be honest people, I’m a midwife – I know what kind of stuff is coming from where and I know was getting a small amount of menstrual blood rectally on the first day of my period. Also, knowing I had endo on my bowel, this kind of freaked me out.

About a year ago, I saw a different doctor who promptly referred me to a general surgeon for a colonoscopy – let me tell you, that was probably the worst thing I’ve ever had done in my life! The prep was bad and the procedure was worse. Unfortunately, I’m sure I’ll be having them again in the future – it’s good preventative medicine isn’t it? *shudder* ANYWAY, Dr. Surgeon told me prior to the procedure that it was very unlikely that the bleeding was related to my endo – technically possible, but never heard of. I smiled and nodded and waited for the results. Which were inconclusive. Yay. Basically, they saw a large mass pushing in on my intestine and they couldn’t be certain about what it was. Either it was an endometrioma – basically endometriosis has burrowed into my intestine and now I have a big cyst of the stuff in between the inside and outside layers. Or it was something else in my pelvis pushing in on my intestine (not so comforting). He needed to send me for an MRI to figure out a little more about it. What he could tell me however, was that the intestinal lining on the mass looked very healthy and so he was fairly certain it wasn’t cancer, though he didn’t have the biopsy result yet. Of note, it’s been a few months and I haven’t heard anything so I’m adopting the no news is good news approach.

At that visit we also talked options, which were: 1. Meds to put me in menopause (enough with the menopause already!) or 2. Surgery to remove the affected portion of intestine. Problem with 1 is: I’d like to have some babies, and menopause isn’t going to help that. Problem with 2 is: there would be so much scar tissue from the surgery that it would make getting pregnant very difficult. So, REALLY my options are: I’m screwed.

I had the MRI a few weeks ago and I have my follow up appt next Thursday. As luck would have it, a friend was the one doing the MRI and she told me they didn’t really see anything on my intestines, but they did see something on my ovary. I’m not sure if this makes me feel better or worse.

Oh yeah, I did I mention that 40% of women with endo also have fertility issues? The fun just doesn’t stop!