This blog post has to do with women’s health. It may be considered graphic to some. This is my story. In no way am I an expert, but this is my fight for my health.
I’ve debated about writing such an intimate post for months. Then after finally having surgery three weeks ago, I really started praying about it.
I am not an expert. I did not explore all avenues, but I did commit to a very life changing surgery in the attempt to live better.
I realized that knowledge is power. That doctors don’t know everything. That second, third, fourth, and eighth opinions are worth it because it is my health.
I realized that if I didn’t have my mom, my own age friends, and the multiple years of experience found in the older ladies in my life, I could have very well kept living with the pain. I had three or four doctors tell me it is normal.
It is not normal.
If you are living with similar pain–or any unexplainable pain, you have the right to fight for your health. You have the right to demand the doctors listen to you. If they won’t, find a doctor who will.
You are the one who has to live in your body. No one else. The doctors don’t, your friends and family don’t either.
Your body is telling you something is wrong. Pain is your body’s way of telling you to help it. Those who are use to pain too often accept it until the pain gets so bad you can no longer function.
I was quickly getting to that point.
Every single day I lived with pain as my constant companion.
Every day my lower back felt like someome had my spine in a vice as they twisted and pulled it. Occasionally every few hours, I’d get a hot poker stabbing me in the middle of that vice. The feeling of hot lightening would flare through my legs followed by wobbly knee numbness.
My abdominal muscles were equally tyrannical in their doling out of pain. I did not know a day without cramps. Cramps. Such a tame word for something so encompassing.
These muscle “spasms,” would knock the breath out of me and more than once had me running to the bathroom to throw up. Imagine a water balloon. When you tap it, the whole balloon shakes with the contact. That is how these cramps were like for me. I felt it throughout my whole body.
My back pain would multiply during my cramping sessions. Though moments without cramping were few and far between, and as the years went by, even more fleeting.
I had constant headaches that no medication would touch. Two doctors gave me muscle relaxants to calm the spasms to help relieve the headaches, not the cramps or the back pain. One other doctor told me to take a different relaxant during the worse of my cycle to ease the pain. They wanted to throw pills at the problem rather than find the cause.
I bled every day of the month. I have no clue what a “regular” period looks like. I bought 4 months worth of heavy overnight pads that would usually not last me a complete month.
I was always fatigued, from the pain and the bleeding. I battled nausea throughout the month as well as painful gas and other digestion issues.
There was no relief.
I sought after an chiropractor who at least helped to keep me moving despite the back pain and gave me a few hours to a few miraculous days of less pain.
An acupuncturist who helped me at least manage my digestion issues so it wasn’t too consuming, and she also helped take the sharpest edge off of some of my headaches.
And also a Structural Integrationist, whose knowledge helped me to keep breathing despite the pain. Her work on my muscles helped me keep a range of motion that I think would have disappeared if she hadn’t loosened up my joints.
Despite all of these wonderful practioners who truly know their trade and the human body, I didn’t find lasting relief. I just found temporary bandages that last for too fleeting of a moment.
While I had other damage done to my joints, muscles, and bones due to various injuries, that pain was nothing compared to this.
There is a family history of menstrual cycle problems. Some of the women had hysterectomies after having their children because of the pain and bleeding. At least one of the women had endometriosis and tumors.
Every time I brought up the possibility of endometriosis to the doctors, they told me I was too young or there was no proof that I had it.
They instead prescribed numerous hormone treatments that all made me very sick from the age of 17 to 21. Every time I would complain about a horrible side affect, they’d try another. At least three of those treatments are now featured on ads for medical lawsuits. I eventually gave up on them. They didn’t help anything–no lessening of blood or pain. Didn’t even help with my acne! All I got from them was severe nausea, joint pain, and a crabby attitude.
The only truly conclusive way to prove endometriosis was through exploratory surgery. It would take me nearly nine years of doctor searching to find one who was willing to do that exploratory.
Only for her to do lack luster job of it. She told me that my surgery would last a minimum of an hour and half, but probably be two hours. I would have a minimum of four incisions but will probably have five.
I was praying as I signed the release form, that maybe her scalpel would slip, so I would have to have an emergency hysterectomy. That should tell you how exhausted I was physically and emotionally facing that surgery.
I was under anesthesia for a total of 30 minutes and only had 2 incisions. She found polyps, scrapped my uterus, and was done. That was it. At post-op when I couldn’t handle the disappointment and started crying, she told me that I’d have to get used to my “supposed” pain. And offered me another muscle relaxant.
Her bedside manner sucked.
And my pain became even worse. My bleeding was so excessive after the polyp removal and scrapping, I was changing pads every two hours if I was lucky. My cramping was making me vomit, and no matter how I laid, I couldn’t stop my back from hurting. I’d wake multiple times during the night because it was hurting so badly.
I was becoming bitter. I had trusted my doctors to help me, and they weren’t. My emotional health was finally starting to cave under the pressure of the chronic pain. I was becoming angry at the drop of the hat and my patience was in short supply. I wasn’t me.
The masks that I wore to hide the pain were starting to fray.
It was affecting my ability to care for my client. It was affecting my spiritual life as well.
Three years later, the back pain was so intense I was getting ready to attempt to find a new doctor. I was talking to multiple ladies I trusted and asking for prayer. I was trying to get my nerve up to talk to another doctor.
I had nearly 10 years worth of charts, mapping out the different symptoms and the durations. The first surgeon had barely looked at them. But I knew that I had to be ready, because many doctors had told me to go home for six months and chart before they’d do anything. My mom kept that fresh in my mind, so I constantly updated those charts.
One friend spoke to a nurse friend of her’s about my history and she urged me to get an appointment with the doctor she worked for.
It took that one visit with one of the first doctors I had seen, to get the ball rolling. She remembered my history and how badly I reacted to hormone treatments. And I was bawling. I was at my wits end. She offered other possibilities such as a IUD, new hormone treatments, another scraping, or an ablation, but said that there’s the strong possibility of having to come back in in less than 6 months.
I was done. I had prayed about it for over 12 years. I was mentally prepared for the hard decision. I could not handle the pain any more. If it was just the horrid bleeding and cramping, I could do it. I’ve done it for 20 years. But the back pain. I couldn’t handle that anymore.
The day after my birthday I met with her, and we started getting the blood tests and ultrasound tests out of the way. I was having a hysterectomy. A month and a day later, I got it.
I think I also got to the magical age when they listened to me. Maybe finally at 32 I knew my own mind.
My back pain has basically disappeared. Once my chiropractor gets the surgery kinks out, I think it’ll be great. That twisting vice is gone. It’s only been 3 weeks, but I noticed it in the hospital hours after the surgery. I was laying down and my back wasn’t killing me.
My doctor found clear endometriosis on both fallopian tubes, the left ovary, and on my uterus. There were multiple cysts in both tubes as well as the ovary. She sent my uterus in for a biopsy and they found extensive adenomyosis that was nearly through the uterine wall. The only way to diagnose adenomyosis is through a hysterectomy biopsy according to my research.
The possibility of me getting pregnant would have been very slim, and being able to carry a baby to term was even less.
My doctor told me that women with endometriosis tend towards bad periods. Women with adenomyosis have hellacious periods, with excruciating back pain.
And 95% of women after a hysterectomy no longer have back pain.
I have to remind myself to still take it slow because my surgery pain from the removal of an organ and a half is nothing in comparison to the pain I’ve been living with.
Do you know that on average it takes women anywhere between 7 and 10 years to get a diagnoses for endometriosis?
It’s considered a low estimate that 1 in 10 women are dealing with horrible pain that can cause miscarriages and infertility. Depending on where the endometriosis spreads to, it also can cause bowl and bladder issues. Some types of endometriosis are even hemorrhagic, which causes bleeding within the belly cavity.
Both endometriosis and adenomyosis are also notorious for causing problems in a woman’s sex life. The diseases can attach to the pelvic wall and the cervix, which then can become inflamed which leads to infections, torn skin, and horrible pain. All of these added pressures can eventually break down some of the most solid relationships between partners.
(The following three charts were the most beneficial for me. Because I could say, yes! This is what I’m feeling!)
Dr. Axe’s chart- he promotes all natural treatments
Endo-resolved, a website that offers information & support
A blog about an artist living with Endometriosis
The emotional toll that these diseases have on a woman are immeasurable.
We look to other women–mothers, sisters, and friends– for support and encouragement. We want to compare and contrast what we are feeling to know if we should seek medical help. But too often, we either don’t speak up about our own problems, or we mock the other woman’s pain, telling them that they’re being weak and a period isn’t that bad.
Endometriosis is not just a period. It is a disease that is extremely painful to live with.
Then when we do get up our gumption to go to the doctor, we find someone who won’t even contemplate the possibility. I’ve been told by various female doctors that painful periods are normal. That heavy bleeding and back pain are normal. That I need to toughen up because I’m going to be living with it for years.
It is not normal.
The emotional toll can be more devastating than the physical sometimes.
I choose the most drastic step in fixing my pain. I removed any chance of giving birth to my babies.
No matter how much I wanted an end to my pain, that is still a bitter pill to swallow. I choose the ending of a possibility of a dream of a biological child, for the chance of less pain. When/If I ever have the opportunity of a relationship, that pill may very well feel like it’s choking me. I just pray that the man can love me for more than my uterus.
I had the chance to not go through with the surgery. I had the opportunity to really pray over it for 12 years. Numerous women don’t get that chance.
I’ve had people tell me that “I never realized you were in so much pain.” Or they would rather mourn over the discarded organ instead of asking how I am doing.
I can’t Velcro it back in. Nor would I want to.
The surgery isn’t fool proof. There is always a chance that the endometriosis had spread. Though my doctor did look at my bowls, bladder, and surrounding muscles to hopefully make sure it hadn’t, there is always a chance that it was hiding. Some women continue to have problems with the disease even after a complete hysterectomy.
There is a possibility at a later date that I will have to go back under the knife to remove my remaining ovary if it is painful. We left it in hopes of keeping my hormones in balance. It wasn’t encased in endometriosis like my other one was.
Endometriosis is not spoken about much. Not nearly enough doctors know about it, or know the symptoms well enough to suspect it.
Women are speaking about it more. Younger women are seeking help for it. It’s not an older lady problem only. Doctors have to become aware of it so they can help. If you suspect you have it–research it! Gather intel so you can show your doctor how your symptoms match up with women who had it.
Fight for your health. No one else will fight has hard as you do.
This is my story. It’s still being written. I’m only 3 weeks out from the surgery. But I wanted to share it with you before my memories fade because I don’t necessarily remember the sharpness of the pain i lived with every day.
This story is very intimate. But it is true. If I can help one woman fight for her health or one man understand a small bit of what their loved one is dealing with, then baring my soul and my underwear drawer for public consumption is worth it.
I am not ashamed of the choice I made. Everyone deals with pain differently. I figured there was enough pain I have to deal with every day, why keep battling something that can be taken care of?
This is me. Looking forward to being healed and facing the future.
~~For more information about endometriosis and adenomyosis these are a few websites that were helpful for me:
Hystersisters-This website is dedicated to helping women who are facing a hysterectomy and have already had one. It has forums and articles to help you.
>>It also has information to help the men in a woman’s life understand what this surgery and the recovery entails. Mister Hystersisters
medicinenet.com— a list of symptoms and medical information
Endometriosis Foundation –a resource to help spread awareness and provides valuable information.
Adenomyosis Advice –similar to the Endometriosis Foundation.
Gyn Care –learn the difference. While endometriosis and adenomyosis can happen together, they are two different diseases that can cause different symptoms.