Endometriosis Awareness

Yes, I am rehashing from an old post but I’ve added alot more to it.

March is Endometriosis Awareness Month

March is Endometriosis Awareness Month

What is Endometriosis? In layman’s terms, it’s when the cells the are supposed to live in the uterus also live outside the uterus.

What does that mean? Well, it means those misplaced cells act like they would it they were in the right place. They have the menstrual cycle, but it can be on the bowel, on the outside of the fallopian tubes, uterus, ovaries, etc, on the rectum, on the bladder, on the kidneys, basically any of the organs in the abdomen. But not only that, these cell can migrate anywhere within the body. This includes more serious, but rare places like the heart, lungs, the spine, and the brain.

What does it feel like? It hurts!! Most women have a regular menstrual cycle. Some women have bad cramps and heavy bleeding. Us with Endo have horrible cramping, debilitating pain that last the duration of the cycle & for up to a week prior & after, and those cycles are irregular & erratic – some times lasting up to 2 weeks, sometimes with only a week, or days, in between. And remember, this happens in those cells that have meandered into the rest of the body, so not all the pain is necessarily in the lower abdomen.

Completely debilitating cramps

How does it differ from regular period pain? Lately there’s been pain simulator videos on the web by somedays.com. They use a tens machine to simulate period pain. Average period pain is 5-7. Endometriosis pain is usually a 9-10. Now, this is not a pain scale of 1-10 but the settings on the machine. Here’s one such video of a US State trooper.  He says he’d call in to work sick at 6, but made it to a 10. Here is a vid of some young health professional dancers. I love the expressions these guys make. One tapped out completely at 6, but the other two did make it to 10 – barely.

What else can happen? In addition to debilitating abdominal pain, there can be issues with infertility. Studies have shown that 30-50% of women experience fertility issues be it the inability to conceive, high risk of miscarriage or just the fact that for some it can really f*”kin hurt to engage in sexual activity .With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. Cuz the tissues are not where they are supposed to be, internal and things very easily get rubbed the wrong way. Add to that the common co-morbidity with Irritable bowel syndrome ,which in and of itself sucks, and other digestive issues. Other symptoms can include painful urination,  blood clots, bloating & water retention, shortness of breath, fatigue, depression, mood swings,  leg cramps, and other general body wide pain.

What if I think I have Endometriosis? Stand your ground with your doctor. Do not let him/her/they brush off your symptoms. A GP is not equipped or trained sufficiently to make this diagnosis. Typically, they try a birth control pill or two or three, or the patch and for some that will help sufficiently. But if it doesn’t, get a referral to a gynaecologist. Again stand your ground. If you believe you have endometriosis and  medicinal treatments like lupron and Depo-Provera don’t help. Push for a laparoscope if you can afford it.My Gyn did not believe I had Endo, but when I pushed for my lap, she found it all across my abdomen, so much so that she didn’t have long enough tools to excise it all.   Advocating strongly  for yourself will significantly reduce your time to diagnosis. From the time I first started having pain in my teens to diagnosis was  about 10 years, a typical duration.

The Spoon Theory & Chronic Pain

I shared the spoon theory in my last post here.

I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.

With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.

I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.

My next post is about The Matchbox Theory which I think is actually a little more apt.

Endometriosis Awareness 2022

March is Endometriosis Awareness Month.

March is Endometriosis Awareness Month

What is Endometriosis? In layman’s terms, it’s when the cells the are supposed to live in the uterus also live outside the uterus.

What does that mean? Well, it means those misplaced cells act like they would it they were in the right place. They have the menstrual cycle, but it’s on the bowel, on the outside of the fallopian tubes, uterus, ovaries, etc, on the rectum, on the bladder, on the kidneys, basically any of the organs in the abdomen. But not only that, these cell can migrate anywhere within the body. This includes more serious, but rate places like the heart, lungs, the spine, and the brain.

What does it feel like? It hurts!! Most women have a regular menstrual cycle. Some women have bad cramps and heavy bleeding..Us with Endo have horrible cramping, debilitating pain that last the duration of the cycle & for up to a week prior & after, and those cycles are irregular & erratic – some times lasting up to 2 weeks, sometimes with only a week, or days, in between. And remember, this happens in those cells that have meandered into the rest of the body, so not all the pain is necessarily in the lower abdomen

What else can happen? In addition to those fun issues already discussed there can be issued with infertility.. With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. And it can really f*”kin hurt to engage in sexual activity. Cuz the tissues are not where they are supposed to be, internal and things very easily get rubbed the wrong way. Add to that the common co-morbidity with Irritable bowel syndrome which in and of itself sucks.

My Atypical Endometriosis

When I was first referred to a gynecologist in the Spring of 1998 for abdominal pain that she was certain that it was not endometriosis. She referred me back to my GP with recommendation of a referral to a gastroenterologist as she believed the issue was more through my digestive system then my gynecological system.

I saw the gastroenterologist, had my colonoscopy and did confirm that yes I did have IBS & was referred back to the gynaecologist in March of 1999

Symptoms of Endometriosis: Heavy Menstrual Cycle, Severe Pelvic Pain, Fatigue and Long Irregular Menstrual Cycles

She was still very hesitant on the idea that I have endometriosis as my symptoms were ‘atypical’ . For me my symptoms included

• Pelvic Pain. Yes, but all month long, not just during my cycle
• Heavy & irregular cycles but controlled with birth control pills
• Lack of reaction to Depo-Provera
• Bowel pain all month long, not just during my cycle
• Both diarrhea & constipation which could easily just be IBS.

Symptoms I don’t have:

• Cycle dependant pain
• Pain during or following sex
• Heavy & irregular cycles because they were controlled with the birth control pill.
• No consistent IBS flaring during Menstrual cycle
• No family history (that we knew of) of endometriosis
• Severe & regular migraines during Menstrual cycle
• No bloating
• No breakthrough bleeding between cycles because cycle were controlled with birth control pills
• High sex drive as most women with Endometriosis have a below average sex drive

So while I had some symptoms, they weren’t a standard or typical case.After 3 months of pushing her to do an exploratory laparoscope which she eventually did. I think she agreed to do it more to shut me up than believing I had endo.

And low & behold! Endometriosis stage 2 I believe. Since she went in believing she would not find endometriosis, she did not have sufficient tools to access & remove all the endometrial tissues. But I had my diagnosis.

So, if you know you have Endometriosis and your doctor does not, push the issue. Worse case it’s negative. Or if you are like me, you prove your doctor wrong.

Endometriosis Awareness Month

March is Endometriosis Awareness Month.

Endometriosis is a chronic & painful gynecological medical.condition . It occurs when endometrial, the tissue that grows inside the uterus, grows outside of the uterus, anywhere in the human body.

In most cases women with Endometriosis the endometrial cells are located within the abdominal area including bladder, bowel, uterus, fallopian tubes, ovaries, etc. Unfortunately it can be found elsewhere in the body including musculature, and other organs including at worst the heart, lungs, or brain. Fortunately endometriosis occurs only on those last three locations on a very very rare occasion.

Examplesof Endo Symptoms

Typical symptoms of Endometriosis include, but not limited to

• Painful Menstruation
• Excessive Bleeding During Menstruation,
• Shortened or Irregular Menstrual Cycles
• Back Pain
• Painful Sex
• Infertility
• Painfull Urination especially during one’s period
• Painful bowel movements especially during one’s period
• Sensation that your insides are being pulled down lower in the abdomen
• Fatigue
• IBS either constipation, diarrhea or both
• Spotting or bleeding between in typical menstral cycle
• Nausea and vomiting,
• Pelvic pain

This is by no means an exhaustive list, but these are the highlights of a woman with “typical” endometriosis..

Check ibacklater to see my posts concerning treatment, my atypical endometriosis.and my experiences with treatments.