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What it Really Means to Have Endometriosis

Dr. Cook Dr. Cook, Endometriosis & Pelvic Pain 8 Comments

Girl in pain

Endometriosis by definition is a disease process whereby tissue somewhat like the endometrium (the lining of the uterus) exists outside the uterus. This “rogue” endometrial-like tissue most commonly involves the peritoneum, a thin layer of tissue that lines the pelvic structures, the bowel, the bladder and the ovaries. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways.

In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.


In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis.

Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.

Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery.

A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain.

In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.

In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.

The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity.

As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.

Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.

Woman in hospital

Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.

The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.

Further Reading
About Vital Health
What is endometriosis?
Is my pelvic pain due to endometriosis?
Does endometriosis have a cure?
What causes endometriosis?
What are the symptoms of endometriosis?
Treating endometriosis

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Comments 8

  1. Kate

    Hi,

    I have had many issues with pelvic pain since I was in highschool. I was diagnosed with ovarian cysts, but the doctor assured me they would resolve on their own and there was no need to worry. Fast foward a few years later and I still had almost constant pain, which worsened around my period. My doctor suggested I see a specialist as he thought it may be endometriosis. After about a year waiting for the specialist appointment I was more than eager to find out forsure what was going on. To my dissappointment the doctor immediately gave me progesterone pills and that was that. I was so deflated at that point I didn’t ask all the questions I wanted answered. Sorry for the novel, I suppose my real question for you is, is it wrong of me to want a laproscopy? I was afraid to mention this to the specialiat becuase he seemed very dismissive, but I want to know forsure if I have a time limit on having kids, or if I even have a chance…

    Thanks for your time, I hope to hear from you.

    Kate

    1. Margaret Sterner

      Hi Kate,
      You are welcome to call our office at 408-358-2511 if you would like to chat about your case or have a complimentary record review. Certainly with pelvic pain a laparoscopy is in order, to find or rule out endometriosis or possible other causes of your pain. A good case review would also help. Please feel free to call if we can help you. Thank you for your post. Margaret

  2. Kim Scharfenberg

    I am just wondering. I had a hysterectomy about 15 years ago due to endometriosis. The Dr. left one of my ovaries. I had my gall bladder removed 2 years ago. I have been having severe pain under my sternum in the middle of my abdomen for months that has spread to the left side of my abdomen. I have had every test there is for the stomach, heart, and all other organs in my body but all have come back negative. I was wondering. Can endomotrios still be in my body? Where I hurt? Do you have any advice?

    1. Margaret Sterner

      Hi Kim, I am sorry you are having pelvic pain … many surgical techniques vary, so it is possible that endo was missed or perhaps burned instead of being excised. Perhaps you should see a specialist or consult with our office, as we do complimentary phone or internet consults for those interested. Margaret

  3. Kimberley

    For four years ive been suffering with tummy cramp and had lots of test and scans, the doctor told me it was actually IBS. Each period the pain would get worse but I just kept putting it off. Christmas 2014 I had pain in my back, tummy, groin and down my leg, I went to a walk in centre and they referred me for an ultrasound, they found I had 3 cyst 2 measuring 4cm and one measuring 7.5cm, since then k have been in and out of hospital several times and been for several tests, ive now been told I also have endomtriosis, it’s taking over my everyday life, im in hospital every other week in absolute agony, im in constant pain 24/7 and I feel as tho the hospital isn’t doing anything to rush the procedure up. I’m now waiting on an MRI to see how bad the endomtriosis is and what it’s effecting. Im taking lots of pain killers, tramadol, morphine patches, codeine etc.. Nothing helps ease the pain and I just don’t know what to do anymore, ive looked at going private but it’s going to cost thousands of pounds. any advice will be so grateful.

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