This article should not be used as a means of self-diagnosis. This is the story of my journey of getting a diagnosis for my severe pain. I hope to help other women seek answers from medical professionals to get the best possible outcome. I am not a doctor, nor do I play one on TV. Please see your doctor if you suffer from extreme menstrual pain.
One of the many struggles we as women are burdened with, is menstrual pain. For most, it can be a minor inconvenience once a month. But for others, it can be debilitating to the point of being bedridden for a couple of days. And the problem is knowing how much pain is normal. I was one of those dealing with excruciating pain every month. And I thought it was normal. That is until I was diagnosed recently with a very common disorder. And now I am learning what it means to be living with Endometriosis.
Unknowingly Living With Endometriosis
I had a somewhat normal menstrual cycle up until the age of 18. That was when I experienced my first ruptured cyst. At least that’s what the doctors assumed had happened. I was in so much pain that my mother took me to the Emergency Room. There the doctors did every test they could think of. They even thought it might be appendicitis. After much fuss, they determined that it was most likely a cyst that had ruptured. And then they sent me on my way with some ibuprofen. Little did I know but this pattern would repeat itself multiple times throughout my adult life.
Over the years I would have many instances of this happening. And no one ever seemed to have answers. One doctor actually labeled me a cyst maker and handed me birth control pills. At any given time I would have multiple large cysts on my ovaries. And I continued to suffer severe pain with my cycles. Most of the time people would say I was just sensitive to pain. Little did they know the level of pain I was actually experiencing. You would think a good indication was that the brief amount of hard labor I experienced giving birth to my daughter seemed like a breeze after what I had been dealing with on a monthly basis.
After much frustration and no answers, I resigned myself to the idea that this was just my lot in life. If I had only known then what I know now. There are symptoms of a normal cycle and mine were definitely not normal. I wouldn’t find out until I was in my 40’s that I was living with endometriosis.
What is a Normal Amount of Menstrual Pain?
Pain is very hard to use as a diagnostic tool sometimes. Because everyone experiences pain differently. And it is basically a subjective feeling. What might be excruciatingly painful for one person, could just be mildly uncomfortable for someone else. So how do you know when you should see your doctor about menstrual pain? First, let’s look at what a normal period should be like. (symptoms vary from woman to woman but should be somewhat within this range.)
Normal Menstrual Symptoms
- A normal cycle lasts on average 28 days (from first day of bleeding to next period) with 3-5 days of bleeding: This can vary depending on your age. A healthy adult female should not be skipping cycles unless she has been ill, under abnormal stress, highly physically active, on certain medications, or is pregnant.
- Pain: Tender or swollen breasts, mild back ache, abdominal cramping (should feel no stronger then gas pain), aching joints, headache, or muscle aches. The pain should be a mild inconvenience and not something that keeps you bed ridden or interrupts your normal routine. Pain should be relieved by taking pain meds.
- Low-energy: You might feel a little more worn out then normal. A good cup of coffee or a short nap should remedy your sleepiness.
- Diarrhea: It is uncertain why this happens during a woman’s period. Some studies suggest it is due to a chemical that is released to assist with the shedding of the uterine lining.
- Bloating: You might notice your jeans fit a little tighter than usual. Hence, why most women live in sweats around this time.
- Acne: A couple of zits before you start your period is pretty normal. I feel like this is the only symptom I experience that is actually normal.
- Normal Bleeding: You should experience some heavy bleeding the first couple days of your cycle and it should taper off after a day or two.
Menstrual Symptoms That Are Abnormal
- Skipping Periods or periods that last longer or shorter than normal: As mentioned above there are only a few reasons a normally healthy woman would miss a period. If you also find your time of the month is super short (1-2 days) or excessively long (more than 5 days). You should mention it to your doctor.
- Pain: Normally you should not be experiencing pain that lasts beyond the day before/first day of your period. Your pain shouldn’t continue after taking pain meds. The pain should not exceed a dull ache or anything more than something like typical gas pain. If you experience extreme pain accompanied by any shock symptoms go to the ER or Urgent Care.
- Constant feeling of fatigue: There’s a difference from feeling slightly tired during your period and feeling exhausted all the time. It could honestly be a symptom of many things. And should not be ignored.
- Excessive or Heavy Bleeding: If you are having to change your pad or tampon after 2 hours, that is too much. You should typically only need to change one every 3 to 4 hours (not because it’s full).
- Nausea or Vomiting: You should not be experiencing nausea or vomiting during a normal menstrual cycle.
- Leg Pain: For me this usually manifests as restless leg syndrome. But leg pain during your cycle can be a symptom of something else.
- Excessive Gassiness: Gassiness with your cycle is usually caused by above normal bloating. I actually experience upper intestinal gas during my cycle because my cysts are usually inflamed. Things get pushed up when this happens.
- Painful urination or bowel movements: You should never experience painful urination or bowel movements with a normal menstrual cycle.
What is Endometriosis?
Endometriosis is a disorder where the tissue that forms your uterus grows and implants itself outside of your uterus. It is uncertain why this happens, there are some theories surrounding the idea of retrograde menstruation. Commonly it deposits on the ovaries forming cysts. It can also grow on the fallopian tubes and pelvic lining.
Many women suffer from this disorder and don’t even know it. On average it takes up to 10 years before a woman finds out that she is living with endometriosis. My story is not uncommon at all. Over 7 million women in the US alone suffer from endometriosis.
Effects of Endometriosis
Besides many of the symptoms I listed above on the abnormal menstrual symptoms, there are only a few side effects of living with endometriosis. Like those symptoms aren’t bad enough? Women like me, who have endometrial cysts, will have a harder time conceiving. It’s not impossible. But most doctors will advise you to try to conceive sooner rather than later. Because endometriosis has been known to get worse as you get older. There is also a slight increase in the risk of ovarian cancer.
What to do if You are Diagnosed With Endometriosis?
If you find that your menstrual symptoms fall under the abnormal category, it is time to make an appointment with a gynecologist. You doctor may request an ultrasound, labs, and possible even an MRI. Even then the only way you can get a definitive diagnosis is by laparoscopy. But your doctor may be satisfied with the previous tests to safely say you are living with endometriosis.
Once you know what you’re dealing with it’s time to make a plan of attack. Depending on the severity of your endometriosis you will have a couple options. There is no cure for endo. But there are many treatments for the symptoms. They can range anywhere from medication to hysterectomy. This is why it is so important to communicate with your doctor not only what your desired outcome is, but also what the best treatment for your unique situation is.
When I Found Out I Was Living With Endometriosis
At the beginning of this year I had finally had enough. Because I am now in my 40’s it seemed like my symptoms were getting worse. Honestly my hormones were nuts. I knew I had cysts because of all the ultrasounds I had had over the years. They seemed to have shrunk when I lost a bunch of weight, but I recently started gaining some weight back. And now they were back with a vengeance. So, I finally broke down and went to my gynecologist.
Once again an ultrasound was ordered and once again I could tell them exactly what would show up on the screen. More cysts. But then, surprisingly an MRI was ordered. I won’t lie, that scared me. Never had one of my doctors ordered an MRI. Well, they had also spotted some other issues. But my doctor finally had a diagnosis for me. Everything he saw indicated endometriosis. And I had to decide what I wanted to do. He recommended robotic surgery. The specialist he sent me to wanted to remove both my ovaries, even though she admitted there was no concern for cancer. The only thing they were worried about was torsion of the ovaries. And a complete removal would eliminate the majority of my pain.
My Endometriosis Treatment Plan
I discussed wanting other options. My biggest fear was that the surgery would push me head first into full-blown menopause. I already have many menopausal symptoms, I don’t need help. And my doctor told me himself that endometriosis has a habit of resolving itself when a woman starts menopause naturally. So, for me this was not an answer. My plan is to lose weight, use natural hormone therapy, and monitor my symptoms. I am under the supervision of a doctor as well. This might not be a solution for you if you have been diagnosed with endometriosis. All treatments need to be tailored to your personal situation and should be discussed with your doctor.
Be Your Own Health Advocate
For many years without any answers I foolishly self-diagnosed and believed I had Poly Cystic Ovarian Syndrome. This is why you should always keep searching for answers from your doctor. Many of the health professionals I saw said I didn’t look like a typical woman with PCOS. That was ultimately what made me decide to finally get some answers. And not give up until I got them. Don’t do what I did and put off asking the hard questions from your doctor. I firmly believe my laziness about my health was why I was unable to conceive another child. If I had taken things more seriously my doctor may have been to help improve my chances.
It is so important that we take our role as our own health advocate seriously. You should never take the advice of your doctor as written in stone. Seek a second opinion if you are uncomfortable with what your doctor has to say. Absolutely give your doctor all the details of what you are experiencing. After all, they are only as good as the information you give them. The best possible outcome can only be achieved if both you and your doctor work together as a team to approach your diagnosis and treatment. Living with endometriosis doesn’t have to be the end of the world. Many women live full and happy lives after seeking a treatment that best fits their lifestyle. There is no reason why you can’t also.
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