Month: March 2019

Endometriosis is a whole-body disease. ” ~ Dr. Camran Nazhat M.D.

The History and Symptoms of Endometriosis and Adenomyosis

I was originally diagnosed with Endometriosis when I was 14 years old. I had symptoms even before my first period started. In fact, I was hospitalized overnight, two weeks prior to starting my first cycle, with severe lower abdominal pain. I was only 13 years old. I suffered for months before my mother gave up and took me to see a gynecologist. “Endo…what?” This was my reaction to being told I had a progressively crippling and incurable disease. I didn’t know then that it was progressive, or even that it was incurable. So many people have the same reaction I did that day. I can only hope that by writing this post in particular, that I can shed some light on what 1 out of every 10 women suffer from. Just so everyone is aware, I got all of my data from Dr. Camran Nezhat MD, an endometriosis specialist in California. He wrote an article called “Endometriosis: ancient disease, ancient treatments”, as well as a wonderfully informative website that also houses a link to this article (www.nezhat.org).

First of all, let me start with a simplified explanation of what endometriosis is. The inner lining of the uterus is called the endometrium. Endometriosis occurs when endometrial implants (or tumors) attach outside of the uterus, wherever they please. As the tissue thickens, breaks down, responds to hormones and bleeds during the menstrual cycle, endometriosis spreads and forms deep with in the body. That internal bleeding is exceedingly painful. Dr. Nezhat describes it as “a chronic estrogen dependent disease that can cause incapacitating pain, organ failure, infertility, and other severe medical consequences if not adequately treated”. This isn’t a new disease. Endometriosis even shares features of many non-fatal cancers, such as the ability to metastasize throughout the entire body. There is talk about endometriosis and diseases with similar symptoms written in medical texts 4,000 years ago. It was originally called “suffocating uterus”, “wondering uterus” and “hysteria”. Treatments then haven’t differed too much from the treatments now. Women who suffered from horrible pelvic pain were subjected to bloodletting, leeches, straight jackets, caustic chemical douches, genital mutilation, hanging upside down, demonic possession accusations, and even executions because the pain that was caused by invisible means was not understood by medical professionals and even society as a whole.

Imagine being in so much pain but having doctors accuse you of being crazy, immoral, and that you have imagined your pain. Women have been accused of reading too much, eating too much, exercising too little, expressing their sexuality too freely. It’s 2019 and we still have doctors who believe that our pain is imaginary. I have heard women state that their doctors have told them that they eat too much and need to exercise more. I have been told by other women with endometriosis that they have been told that they got this disease because they were molested, raped, or sexually active at a young age. We don’t know why or how a person comes to have endometriosis. But the fact that medicine hasn’t progressed in 4,000 years when it comes to a woman’s menstrual cycle is disturbing.

So what are the symptoms of endometriosis?

Pain is the number one symptom, but some women have no pain at all. Like Dr. Nezhat said, endometriosis effects all areas of the body.

Pain: During period, during ovulation, during and/or after intercourse, lower back pain, lower abdominal and pelvic pain, pain radiating down one or both legs/thighs, pain when passing urine or while having a bowel movement.

Abnormal Bleeding: heavy menstruation, irregular bleeding, premenstrual spotting.

Bowel or urinary symptoms: Cyclical (happen in a pattern around the monthly cycle) painful bowel or bladder movements during period, Constipation or diarrhea, rectal bleeding, symptoms are often confused with IBS.

Infertility: Primary or secondary infertility. Meaning they may not conceive after their first child or they may not conceive at all. Miscarriages are common.

Other symptoms: Chronic Fatigue, Premenstrual tension, anxiety, depression, and abdominal bloating (called Endo Belly).

There are other diseases that are connected to endometriosis. One such disease can be had by women who have endometriosis, or do not have endometriosis within the abdomen. Adenomyosis is another disease that I suffer from. I ended up with this after a cesarean section delivering my daughter. Adenomyosis is where endometrial tissue exists within and grows into the walls of the uterus. The symptoms are almost identical to endometriosis but it is localized within the uterus. It is curable by removing the uterus. While endometriosis can’t be cured by a hysterectomy, adenomyosis can. Again the symptoms interconnect with these two diseases and are very similar. The symptoms of Adenomyosis are as follows.

Pain: Sharp internal pain when sitting down, pain radiating down or or both legs/thighs, lower back pain, pain during or after sex, sudden stabbing pain across abdomen at any time during cycle, abdominal pressure and bloating, feeling full, due to pressure on stomach, heartburn.

Periods: heavy and prolonged, passing of blood clots, painful periods, vaginal pressure feels like the uterus is trying to push through vagina (similar to labor pains).

Visible changes: enlarged uterus (noticeable in most cases with the appearance of a 3-9 month plus pregnancy, AKA Endo Belly), rapid weight gain or weight loss due to medications, water retention in face, legs, hands, ankles, and hair loss.

Gastrointestinal: Unpredictable bowel changes, constipation, diarrhea, frequent urination, nausea, iron deficiency (anemia).

Other: Palpitations, breathlessness, extreme and chronic fatigue, insomnia, infertility, miscarriage, and mood swings.

Endo Belly is extremely difficult to deal with. My clothes never fit. I feel uncomfortable and in pain. Not to mention the fact that my husband and I are actively trying to get pregnant. So going out looking like I’m pregnant makes me feel horrible. I’ve had people ask me how far along I am and I have to tell them that I’m not pregnant. That I have endometriosis and I’m in the middle of a flare up. I sometimes, will add that we are struggling to get pregnant. It’s a sensitive issue, infertility. One that I will talk about in another post.

So, after being diagnosed, I had numerous surgeries. So far I’ve had 4 laparascopic surgeries,not including my c-section. I’ve also been on Lupron 4 times, and Letrozole once. Lupron is a chemotherapy injection originally created for prostate cancer patients. It shuts off all hormone production and puts the person into chemically induced menopause. Letrozole is a pill form of chemotherapy developed for breast cancer. It does the same thing. These are supposed to shrink the tumors. They also are used to aid in fertility treatments. I have to say…Lupron was horrible, but Letrozole was worse. I lost 40 pounds while on Lupron (in two months time). I stayed sick. I lost hair along with weight. I was moody, and a bit edgy. I was depressed. But Letrozole put me into a whole different world. I was angry, and I cried all the time. I was completely irrational. While on Letrozole I was suicidal and homicidal. It took forever for that drug to get out of my system. It was horrible and I will never take it again. I’d rather be on Lupron. Honestly. Birth control is another treatment option. I think I have been on every type of pill there is. Sometimes they worked to control my period and to control the symptoms. Other times it didn’t. There are two different types of surgery; ablation, and excision. I have gone the ablation route, 4 times. They burn away the tumors. Excision is supposed to be the best treatment option, but it has to be done by an endometriosis specialist and there are only 200 worldwide. Excision is when they cut out the endometriosis. They go through the body, extensively, thoroughly, and cut it out. I’ve heard this has had the best results. Insurance doesn’t normally pay for this. I know that I am at the point where I need to have another surgery done. I would rather have excision surgery done by a specialist. That would mean traveling from South Carolina to California and paying out of pocket. It would be worth it though.

If you are reading this and you have had any of these symptoms, please reach out to a health care professional. Just know that not every doctor knows about endometriosis and adenomyosis! Not every doctor knows how to handle this diagnosis and they aren’t equipped with the knowledge to treat you. Follow your gut. Don’t let a doctor just prescribe you any medication or perform surgery on you without you doing research on the medication/procedure. You have the right to turn down their treatment. You have control over your choices when it comes to your health. I went through 10 or more doctors. Some of them were very good and some of them got their medical degrees through U.F.C. (you know…the University of Cornflakes). Feel free to reach out to me. I’ll help anyway I can!

“Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy.” ~ Thich Nhat Hanh

When Trying To Conceive Is a Long and Painful Process…

Trying to conceive with Endometriosis is a difficult process. Endometriosis alone makes me feel like I’ve been convicted of a crime and given a life sentence of chronic hell. Dealing with Endometriosis, Adenomyosis, Fibroids, ovarian cysts (that rupture), and secondary infertility have left me drained in such a horrible way. It has not only affected me, but my whole family. My poor uterus didn’t have much of a chance from the start. Normal menstrual cycles, which are counted from the first day of one period to the first day of the next, is usually 21-35 days. My menstrual cycles are abnormal and irregular. I pee on sticks everyday that I am not actively bleeding, just to make sure of my ovulation day. I have multiple apps to track my cycle. I take my temperature every morning before I get out of bed and map the numbers. Even with all of that, I still have not gotten pregnant.

I use digital ovulation predictor tests. They flash smiley faces when my estrogen is high, telling me I’m entering into my fertile week. The solid smiley face is that all illusive signal that I am entering into my “peak” fertile period and will be ovulating within 24-48 hours.

This particular month was difficult. I peed on entire box of ovulation predictor tests. I started at the end of my period and TWENTY DAYS LATER I finally got a solid smiley face! Yesterday, I had fully given up. I didn’t even want to test. Today, I had one test left and figured, “Why not?” I thought that maybe I just wasn’t ovulating anymore. So when I saw that solid smiley face…I cried. This test lets you know your window for the ability to conceive. So at that moment I hadn’t ovulated yet. I’m one of those rare women who can physically tell when I’m ovulating. I’m in pain every day, but the pain varies depending on what I have done or where I am in my cycle.

At this particular moment in time, I am in a tremendous amount of pain. Searing pain. At one point today, I laid in the bed, in the fetal position, face down, rocking back and forth. My hands were balled into fists grasping my pillow at my face, sobbing. I just lay there, begging for some form of relief to be bestowed upon me by some higher power. All the while, tears stream down my face and I just scream out, “Why me?!” as my ovaries explode in my body. Like a tiny grenade going off in my pelvis.

Something as simple as ovulation wrecks my body, debilitating me in so many ways. My home, normally so clean and in order, has laundry piled up to be washed. Clean clothes, already washed, dried, folded and gone through (more than once), are still sitting in hampers. Dirty dishes are piled in the sink and on the counter. Clean dishes have yet to be put away and are still sitting in the dry rack. Groceries bought yesterday haven’t been put away, are still on the table. Books, socks, shoes, pillows, and blankets, are scattered across my living room. The rest of my home need to be cleaned as well. And yet, the simple act of an ova dropping from my ovary, keeps me from my daily life. Some months, the high estrogen during the week before I ovulate is also painful. The pain raises steadily to a horrific crescendo. So here I sit, with two heating pads caressing me in places that only my husband has touched. No matter how much pain I go through daily and monthly, I can’t help but think and believe that it will all be worth it if I can just get pregnant.

I go through a difficult cycle every month. Yes, my menstrual cycle is God awful but that’s not the only cycle. You see, after my period there’s the anxiety of waiting for the flashing smiley face on a stupid stick, followed by the anxiety of waiting for the solid smiley face on the same, said stick. Of course then, I have to ensure my husband and I are intimate, which (believe it or not) isn’t always possible. Usually, I’m in so much pain my husband is scared to touch me, because he doesn’t’ want to make my pain any worse. Endometriosis is a bitch. And God forbid my husband is sick or so exhausted from work that he’s unconscious before I can get out of the shower. Once we have done the horizontal tango, during what we can only hope is the right time, there is the waiting period. Aunt Flo never arrives on time and every PMS symptom looks like a pregnancy symptom. I’ve been doing this for 4 years so I totally know the difference… Please pause while I laugh hysterically…. 

The final part to the cycle, before it starts all over, is the moment I get my period. It’s sad. It’s final. It means I didn’t get pregnant. I fool myself every month with pregnancy tests to believe that they’re inaccurate and could be wrong. Not to mention the fact that almost 99% of the time, right after I pee on a pregnancy test and get a BFN (Big Fat Negative) I start to bleed. Which makes me mad because I’ve wasted a test. I have so many ovulation and pregnancy tests in my bathroom drawer that if I don’t keep them separated and in their original boxes I have no idea what the hell I’m peeing on!

Waiting 3-5 minutes would seem like a drop in the bucket, but I’m waiting on these tests to show results like a toddler waits on Christmas….or how a hyperactive dog waits for you to throw their ball. It’s a painful process! However, I’ve developed the patience of a saint. I can wait in line better than anyone you’ve ever met. Unless it’s ovulation day and well, who wouldn’t be in a hurry for that? Let me see that Smile!!!

Welcome to my life…

Having an incurable disease causes a sense of being powerless and causes self destructive tendencies. I was very young when I was diagnosed with endometriosis. I was 13 when the pain and dysfunction started. My mother knew something was wrong. I am one of the few lucky ones who was diagnosed quickly. By the age of 14 I had a name for my pain. I was so young. I was powerless. My body made me powerless. My mother made me powerless. She was decently controlling. She used lies, exaggeration, and guilt to control my actions. Even still, she was my best friend. We moved every couple years, she was a Pastor. Which also put pressure on me, at home, at school, at church. I was either a demon or an angel. It just depended on the group of people I was with. My father was emotionally distant. I only wanted to make him happy but…I never really felt like he cared. He never played a heavy roll in my life, and even today, he doesn’t remember many aspects of my life.

Due to my age at diagnosis, control of my health went to my parents. Well, my mother. I didn’t have a whole lot of control over the treatment of my disease until I was 18. I was put on birth control to regulate my period and to suppress the symptoms of my disease. I was horrified and embarrassed. I didn’t want ANYONE to know I was on the pill. I didn’t start dating for a while. I had boyfriends but I was not allowed to go on actual dates. Not until I was 16. At the age of 15, I was having my first surgery; I had a laparoscopy and was put on Lupron for six months. During my “lap”, the gynecologist burns away endometrial tumors and adhesions in my abdomen and round my uterus. Lupron is a chemotherapy drug originally designed for prostate cancer patients. Basically, what this drug does is shut off all hormones in the body. For a woman this means they go through chemically induced menopause. It’s pretty horrible. The side effects are horrible. I was 15! It made me suicidal, depressed, anxious, I couldn’t sleep…I was still in a lot of pain. So my parents did what they knew best. They sent me to a psychiatrist. I was prescribed drugs. I took, pain meds, antidepressants, antianxiety meds, and sleeping pills.

I was angry and sad. Again, powerless. I started college at 16. I was honestly too young to start college. I had been kept away from the world by my mother. So when I got a little bit of freedom, I took advantage. I was already self destructive. I was a cutter, secretly. I found it was the only way I could control the pain I felt. It released endorphins and kept my physical pain, from the endometriosis, at bay. I was a smoker by the age of 17. I ended up having another surgery at 17 and was still pretty heavily medicated. I continued to self destruct even more. I became sexually active. I lost my virginity while on Ambien. You see, this sleeping medication didn’t actually put me to sleep. It made me extremely high and I would do things and not remember it the next day. Funny how the doctor was informed of this by my parents, (before I snuck out while on it, thus losing my virginity in the back of a mustang) and he told them to let me enjoy the high. Doctors are a clueless bunch.

That particular incident, in the back of that mustang, was kind of a turning point for me. Not a good one though. It initiated a horrible spiral downward, that having endometriosis (and not knowing how to deal with it) started. I felt like it was my fault. And the poor boy, I have forgiven because lets be real here…he had liked me for a long time. He wasn’t forceful, he didn’t know I was on something, and he asked for permission. I think that is what ate at me for years. I gave him permission. The sober me didn’t want to. But I wasn’t sober. He didn’t know I wasn’t sober. He found out later and I think it ate at him as much as it ate at me.

From that point on, I felt even more worthless. Every boy I dated made me feel more and more powerless and used. There was one guy after all of this that I fell for so hard. He had joined the military and I was away at college. I was only getting deeper into drugs and drinking. Almost a year later, that guy just dumps me out of nowhere. Not only did I not handle that break up well, he kept calling me, for about six months for a hook up. I was losing myself. I kept coming to him or had him come to me…because I was hoping to reunite. He had a girlfriend…but was still coming to me. I thought that meant he still cared but all he cared about was me in a bed. Again, I was powerless. When I found out that he really was still with his girlfriend, and he had been lying to both of us, I felt so dirty. It threw me into a tail spin. I was ruined emotionally and mentally. I was in a dark place. I had zero coping skills! Things got so bad, that I went to a party with a classmate. I barely knew her. I don’t remember where this party was except that it was in a motel room. I got so drunk that it took me years to fully remember what had happened that night. I think I may have suppressed a good bit of it too. That night I was raped on one of the queen size beds in that room. The sick and scary part is…that people at that party…watched. Another guy tried to have a turn but he at least listened to me when I said “please, no”. He helped me get dressed. He actually held my hair back later while I puked. I couldn’t handle seeing the girl that took me to that party everyday in class so I dropped out. I was failing anyways. But the kicker? She said to me, “what did you expect to happen? Look at what you were wearing.” Just for the record, it was in November. I was in jeans and a sleeveless shirt covered by a big ass sweater. I got into a really bad relationship after this. He was abusive emotionally, verbally, and mentally. It lasted almost 5 years.

That’s over half my life. But I will say that things changed for me. I realized that I couldn’t live my life as it was anymore. I moved back home with my parents. I met my current husband a few years later. We got married and found ourselves pregnant pretty quickly. Which was a miracle! I had been told by doctors that I probably wouldn’t get pregnant. It was a horrible pregnancy and the birth almost killed both of us. I had a C-section. Which I believe is what led to my diagnosis of Adenomyosis. By the time my daughter was two I was in the worse health ever. Luckily, I got myself help in the form of therapy. My husband was there holding my hand the whole way. This helped me learn to cope with life, my emotions, and my pain. I’ve been sober for 8 years. The only drugs I use now are for treatment of my diseases. I’m currently 33. I’ve had to deal with endometriosis for 19 years. Well, 20 years if you count the time before being diagnosed. During that time, I’ve had 4 laparoscopies and C-section where they ablated away endo-tumors; I’ve been on Lupron and Letrozole a combined total of 5 times. Not to mention test after test after test. I was never told until these last few years that endometriosis is staged like cancer and will only progress. I had been under the impression that it was like high blood pressure or diabetes; controllable with surgery and medication. But I learned that even surgery and medications won’t necessarily control them. Sometimes there is nothing you can do. I’ve seen doctors who flat out tell me they can’t help me. For the last 4 years, my husband and I have been trying to get pregnant. The only true success we’ve had resulted in a miscarriage, last year. We’ve thought that it was possibly my husband and his soldiers, but I’ve been testing for ovulation and I have not been ovulating. So…now I do what I have done for years: see my doctor. Always a fun and exciting experience.

NOT!!!!

I hope you enjoy reading about my past. I look forward to letting you in on more of my life. I am strong! I am an endo-warrior. I’ve found peace somewhere these last few years. I do think that having wonderful people (like my husband) around me and becoming a mother has made a difference in my outlook. I’ve always been a Christian, and oddly enough…my faith is stronger now than it ever was. Secondary infertility has strengthened my faith and hope for my future. I should be angry at God. I do have those moments. But I have control over my life now. Those coping skills are kicking ass and taking names! I think my antidepressant might help a bit too (wink, wink!).