Endometriosis

Thursday Thoughts: Endometriosis Fertility Index Predicts Likelyhood of Natural Conception

Fri, 10 May 2013 17:25:23 -0400

Thursday Thoughts: Endometriosis Fertility Index Predicts Likelyhood of Natural Conception:

The endometriosis fertility index (EFI) uses the functional status of women’s fallopian tubes, ovaries, and fimbria, to predict chances of conceiving naturally with endometriosis.

Has anyone ever heard of this before? I stumbled across this today…

"The people who have the biggest struggles in life, are the ones whose hearts shine brightest."

Fri, 10 May 2013 17:18:00 -0400

“The people who have the biggest struggles in life, are the ones whose hearts shine brightest.”

- Jennifer Gayle

Words of Wisdom Wednesday

Tasty Tuesday: Raw Oreo Ice Cream Sandwiches

Fri, 10 May 2013 17:11:00 -0400

Tasty Tuesday: Raw Oreo Ice Cream Sandwiches:

Check out my Raw Oreo Ice Cream Sandwiches Recipe. This recipe is raw, vegan, no-bake, gluten free, grain free, soy free, dairy free, rich, creamy and delicious!

Hard to believe that these little pieces of heaven are Endo Diet Friendly? Well friends, let’s indulge our summer sweet tooth because these should be delicious and leave you pain free!

Inspiration Monday: Melatonin Treatment of Endometriosis is in Phase II Trial

Mon, 06 May 2013 11:27:00 -0400

Inspiration Monday: Melatonin Treatment of Endometriosis is in Phase II Trial:

PubMed comprises more than 22 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.

Such an interesting piece of research!

My Story: Being Treated Like A Criminal

Tue, 30 Apr 2013 19:29:26 -0400

I got my response from the hospital from my visit last month. I can’t say I’m surprised that the doctor denied everything - I honestly didn’t expect anything different. What I can’t take is being accused of being a drug addict when I’m simply trying to manage my disease in the only way that the medical community has provided me. He didn’t simply “discuss the pitfalls of narcotic usage” with me that night, he flat out told me I was looking for more pills to “facilitate my addiction”. I never, ever want to waste anyone’s time but when I truly believe something is wrong, I want the doctor I’m seeing to do something besides brush me off as a crazy person with a history of endometriosis. I truly do not think that is too much to ask and certainly am shocked that the hospital’s administration would find a response like the one I received to be sufficient.

It’s moments like these that make me sad because it shows me just how far we have to go as a community. The doctors need to take some time to understand this condition and how to improve the quality of life of those suffering with it. They need to take a moment to listen, and really hear their patients because the truth is we all want to get to the same point - I would just like to get there together.

How many of you have had experiences like this?

Hey! I have Endo as well as other illnesses (Fibro, IC, IBS, Chronic Fatigue). In the past few months I have been exercising more than ever before (to help with symptoms) and I've been eating around 970-1000 calories a day. Still, I am having the HARDEST time losing weight. My thyroid was checked two days ago and everything seems to be in the normal range. I am thinking that maybe its the Endo meds (aygestin). Any ideas on how to help with weight loss??

Sat, 27 Apr 2013 20:41:24 -0400

Hello Anon,

I’m sorry to hear about your struggles. There is one thing that concerns me about your question. 970-1000 calories is far too little in a day! There is actually a misconception between eating less and losing weight. I didn’t realize this until I saw a nutritionist. When you don’t eat enough, your body goes into starvation mode and it turns all your calories into fat. It feels like it isn’t going to get enough nutrition so it stores everything to use later. It actually helps to boost metabolism by eating MORE, not less. It could also be influenced by your medication (I’m not familiar with the one you mentioned). While I am not a doctor, my advice to you is to eat healthy and don’t restrict your calorie intake so much! Healthy, nutritious and delicious food in the right quantities is important. You should also consult with your doctor and perhaps a nutritionist as well who can help determine a diet (if you need one) and keep you on a healthy path.

Hope that helps! Best wishes!

My Story: Emotional Emotions

Sat, 27 Apr 2013 20:35:00 -0400

I’ve been quiet lately. It’s been hard to find the words. I go through these ups and downs when it comes to this disease. There are days when I feel like a warrior - like I can handle anything - and then there are days like I’ve had this week. Where the stress is too much and I’m spontaneously crying about stupid things. It’s so hard to explain the emotional rollercoaster to people. I can go from being thrilled, excited, giddy in one moment to an absolute basket case the next. It’s stupid things that set me off too. For example, yesterday I was finally having a day where I felt like I looked good, starting to get back to my healthy self and then we had a work lunch where they ordered burgers. I got my gluten free bun and tried to be as safe as possible but I ate red meat and within 2 hours I was in pain, swollen and crying. The pain always makes me think things like why me and when will it stop and what if it never stops. I want more better days than bad days but this is one of those weeks where I just couldn’t make it happen. Maybe next week will be better.

Thursday Thoughts: Endometriosis - The Tip of The Iceberg Documentary

Thu, 18 Apr 2013 12:47:41 -0400

windsweptyellowstickiesofmymind:

The documentary I’ve been waiting and waaaaiting for has finally been released with English subtitles!

It’s a measly, easy $5 to buy and watch online - I’ve just bought it and can’t wait to see it and support the awesome women who made this doco!

As a fellow documentary maker and Endo sister, this makes my heart sing :)

Click here to watch Endometriosis, the tip of the iceberg

I’ve been waiting to see this documentary! Thanks for the link! I know what I’m doing this weekend! Has anyone seen it? What were your thoughts?

"Three choices in life: give up, give in or give it all you’ve got."

Thu, 18 Apr 2013 12:46:24 -0400

“Three choices in life: give up, give in or give it all you’ve got.”

- Unknown

Words of Wisdom Wednesday

Tasty Tuesday: Cheeze Ravioli

Thu, 18 Apr 2013 12:44:00 -0400

Tasty Tuesday: Cheeze Ravioli:

I LOVE pasta and this is the perfect endo friendly recipe!

Inspiration Monday: Endometriosis Surgery Lowers Ovarian Cancer Risk

Mon, 15 Apr 2013 06:00:33 -0400

Inspiration Monday: Endometriosis Surgery Lowers Ovarian Cancer Risk:

Some positive news related to endometriosis surgery.

Followers

Sat, 13 Apr 2013 11:46:22 -0400

I hit the 200 mark! Thank you everyone who has joined here! In the interest of helping to make this blog as informative as possible, is there anything I can help you find? Anything you really want to see on the blog?

Thursday Thoughts: Peppermint Tea

Thu, 04 Apr 2013 07:30:47 -0400

I had an anonymous request to do a post on peppermint tea. This person has found that drinking the tea can be helpful in reducing pain associated with endometriosis so I set out to do a little research!

I found this great article on the health benefits of peppermint tea. Headaches, stomach aches and cramps - sounds like a lot of things I get as a result of my endometriosis. The greatest benefit comes from the menthol which reduces spasms and could explain why it is so helpful in these conditions.

Have any of you tried peppermint tea? Did you find it helped?

Words of Wisdom Wednesday

Wed, 03 Apr 2013 20:26:22 -0400

Words of Wisdom Wednesday

Tasty Tuesday: Baked Quinoa Oatmeal

Tue, 02 Apr 2013 07:27:16 -0400

Tasty Tuesday: Baked Quinoa Oatmeal:

This breakfast looks amazing! And endo diet friendly - as long as you skip the maple syrup!

Inspiration Monday: New Medicine for Endometriosis Treatment

Tue, 02 Apr 2013 07:23:18 -0400

Inspiration Monday: New Medicine for Endometriosis Treatment

My Story: A Whirlwind Month

Sun, 31 Mar 2013 07:47:00 -0400

So this is not how I planned endo awareness month to go on this blog. In fact, silence is the opposite of what this month is supposed to represent but I just couldn’t find the words to express what was happening to me. I think that the experience is a reminder of what this month is actually about and the issues that are associated with having a chronic, invisible illness such as endometriosis. We have such a long way to go! I will warn you that this post is long and while I am giving you the short version, you should get comfortable if you want to get to the end.

Background

So most people have no idea that my husband and I have been trying to get pregnant for a while now. 14 months to be exact. It’s not working. Every month when I would get that negative result, there was a little voice in my head saying “I bet the endo has stolen this too”. When we approached my OBGYN about the issues, he just said “I have no idea why this isn’t working” and I had to remind him I had endometriosis. Let me pause and say that this is my greatest annoyance. Having a doctor who is so busy he can’t spend 5 minutes looking at your chart and reminding himself that you have endo which could be affecting everything. He told me that we had two choices: fertility treatments to get pregnant or to stop the pain. I couldn’t have both. We chose getting pregnant and he ordered a battery of bloodwork and other tests to figure out just how hard this was going to be.

March 1, 2013

I went to my OBGYN’s office for an ultrasound to tell me if there was blockage in my tubes that could be preventing me from getting pregnant. He had a student helping with the exam and there were no less than 4 people in the room. They injected some air into my uterus and 10 minutes later, as I laid there half naked in a room full of people, he said this “your tubes are completely blocked. I will do an x-ray test and if it confirms this, we will be having a very different conversation. IVF will then be your only option.” And then he left the room.

I got dressed, picked up my appointment details, went to my car and cried. I cried a lot. Did no one else hear what he said? He just told me I’m never getting pregnant on my own. And IVF? Sure, but who’s to say we can even afford something like that. My heart was completely broken at the thought of losing something I never even had.

March 13, 2013

I went to the movies with my husband and a couple of his friends. Towards the end of the movie, I started to feel that familiar pang in my gut. The one that says “ha ha, you are going to be in bed for days”. I thought maybe I had just eaten too much popcorn but once the movie was done and I excused myself to the bathroom, I was nearly screaming behind the stall door. Something was very wrong. We declined going out for ice cream and instead I told my husband I needed to get home.

As he drove, the pain was intensifying. To a level I have never experienced before. After 15 minutes, I told him to detour to my parents’ house which was nearby. I couldn’t make it home. I was screaming, crying and writhing in pain. I started heaving. The nausea was out of this world. My mom called an ambulance.

On the way to the hospital, the paramedics asked me all sorts of questions. The one I remember most was:

Paramedic: Have you experienced this type of pain before?
Me: Yes, but this is worse.
Paramedic: What does the hospital do?
Me: Sometimes gives me pain killers and sends me home.
Paramedic: *insert surprised face here*

I was taken into the ER, given 2 doses of morphine to dull the pain and 2 doses of Gravol to stop the nausea and vomiting. And then I waited. I was in bed 14 - this is the same bed I was in when I first had these symptoms 15 years ago. Strange how life comes full circle.

After a couple of hours, the doctor came in. I won’t share every detail but the gist is this: while he believed that my pain could be from a ruptured cyst, he believed I was a drug addict here for a fix and he was refusing to “waste valuable hospital resources on doing an ultrasound that would show nothing”. Under no circumstances was he giving me more medication to “facilitate my addiction” and I should take Advil to lesson the pain. At the end of my arguing with him, he gave me 5 days worth of percocet and sent me on my way. No tests. No confirmation of anything. Heck, I didn’t even get out of my clothes. I filed a formal complaint against him the next morning.

March 27, 2013

Things finally started to turn around. I went for my HSG test (this is where they inject dye into your uterus and see if it goes through your tubes). I had read about it online and heard that it was painful but I was half asleep that morning because I was up all night thinking about this test and what it meant and forgot to take anything before I left the house. I was certain that today all my fears would be confirmed - endo had stolen my fertility.

I will spare you the intimate details but ladies, if you ever have to go for this - take all the pain killers you have! Despite my OBGYN telling me “it will just feel like a little cramp”, the pain was incredible. I made him repeat the results 3 times: my tubes were 100% open! My uterus is completely fallen over backwards which causes great pain but my tubes are open! Endo hasn’t stolen everything yet!

I know this still doesn’t explain why I can’t get pregnant but at least it appears to be something fixable right now which is all I can ask for.

Thank you for your patience with me this month. It’s been hard to find the words to share this experience. Keep spreading awareness through your stories - it’s the only way we can change things!

Welcome new followers! I’m so excited you have joined in the fun. It’s been a...

Wed, 27 Mar 2013 12:40:53 -0400

Welcome new followers! I’m so excited you have joined in the fun.

It’s been a rollercoaster of emotions this month and I promise the updates are coming this weekend when I can finally breathe. Good news finally came today and I can’t wait to share it with you all!

Thank you so much for your patience while I have been all but silent for a few weeks!

xoxo

For the anon that can't take birth control, how about trying a nonhormonal IUD? They have worked for some people!

Sat, 16 Mar 2013 14:14:07 -0400

Thanks for your suggestion! I hope Anon will see this too!

so I had an operation last year to remove a cyst off an ovary. The surgeon found a TON of adhesions and stuff, which he dubbed endometreoisis. So I lived with that for a month before the results came back; they were negative for endometriosis. Which should have been awesome - but I still get the WORST period pains, and they're getting worse every month. So I'm just aware that stuff could still be going on inside. And I have that mild looming fear that because I lost 60% of an ovary...

Sat, 16 Mar 2013 09:03:21 -0400

Hi Anon,

I’m so sorry for the experiences that you have had. Keep your chin up and thanks for sharing. It is only through awareness that I believe we can make a difference!