How to explain endometriosis pain to a guy?

Many women ask themselves this question because men speak an entirely different language and don’t think the same way women do. Trying to figure out how to explain endometriosis pain to a guy can be difficult, but here’s what I’ve learned from speaking with thousands of women who suffer from this chronic condition:

Endometriosis pain isn’t isolated to reproductive organs, it spreads beyond the pelvis. This pain feels like the insides are being pulled apart, it can feel sharp and stabbing, and severely impacts women’s life bringing limitations to daily activities, work, and intimacy.

While doing my work I found plenty of women trying to spread endometriosis awareness via video content, but one of them stood out the most. Cécile runs a small charity called “endOF” and asked my wife to appear in her wonderful video. It is very touching!

Women struggle to find a way how to explain this illness to anyone who doesn’t suffer from it. Sometimes even females don’t understand what their friend is going through, but it gets more complicated trying to speak to a man.

Many relationships break and the endometriosis divorce rate is as high as 75%!

I see my wife struggle with her emotions far too often, especially at work, when she’s in a lot of extremely painful symptoms but she puts up with it because she’s afraid to tell her boss.

I simply took the matter into my hands, I called her boss and organized a meeting. I took a day off work and met my wife with her management.

I helped her boss understand her endometriosis by stepping in. Since then, he’s understood. I helped my wife with her job, but there are plenty of people, and I can’t speak to everyone for her.

I also attended my wife’s doctor’s appointments and hospital visits. Sure, I took days off work when she needed me, but I paid a tiny price and really help my wife.

My approach of accompanying her to the hospital, doctor’s, and boss’s appointments paid off. M was diagnosed faster, she also kept her job.

I understand that not every husband is willing to give up a few days of work to do that, but it really pays off! Your partner gains a lot, you just skip a day of work. Think about it gents…

There are so many questions that pop into my head because I don’t suffer from endometriosis myself but after having a long conversation with my wife I realized how uninformed I was.

Sure, I educated myself as much as I could, but what struck me was the fact that my wife doesn’t only experience endometriosis pelvic, abdominal, shoulder, and leg pain, or extremely painful bowel movements and periods. There are many conditions that go along with endometriosis, and one of them is fibromyalgia.

Aside from that, there’s anxiety, panic attacks, and depression. There is the emotional, psychological, mental, physical, social, sexual, and financial impact. Endometriosis is complex.

How to explain endometriosis pain to a guy infographic

What makes explaining endometriosis pain to a guy so difficult?

Learning how to explain endo pain to a guy feels like communicating in a completely different language. Women with endometriosis look healthy from a man’s perspective, even when they’re fighting a lot of symptoms of pain at the time.

Endometriosis is invisible to a guy, it is an invisible illness, and as we all know very well, guys are visual creatures.

Guys can’t experience endometriosis pain, this is why it’s hard for men to make a connection. The same situation applies to describing the pain of childbirth. Guys also don’t suffer from bad or severe period pain either, we don’t have menstruation.

I’ve heard a million times the medical explanation of endometriosis, and I am sure you have to…

Endometriosis occurs when bits of tissue similar to the one that lines the uterus grows in other areas, including other pelvic organs, such as the ovaries or fallopian tubes. Outside the uterus, endometrial tissue thickens and bleeds, just as the normal endometrium does during the menstrual cycle.

As a man, the last thing I want is to hear medical jargon, I want a simple explanation. Men can’t even spell the word “endometriosis”, let alone understand it.

In the beginning, I had trouble understanding my wife’s condition. Today I know how to explain endometriosis pain to a guy, after all, I’m one, and I know how I wish to be explained.

I decided to write this step-by-step guide listing a number of questions to which you will find answers in each part. These questions are:

  1. How to explain endometriosis?
  2. How to explain endometriosis pain?
  3. How to explain endometriosis pain to a guy?
  4. How to explain endometriosis to my boss?

How to explain endometriosis?

Many times I heard my wife’s screams in agony, I saw her climbing the walls from the extreme pain, and the endless visits at A&E which always resulted in a lack of knowledge of doctors, their disbelief, and the stigma attached that it was all in her head.

Doctors can be very persuasive and they will always find a way to turn things around, and despite feeling unsatisfied, filled with anger and neglect, women are made to believe that period is meant to be painful, and in most cases, they hear things like “it is all anxiety and stress”.

At the time I knew absolutely nothing about endometriosis. The first thing I learned about it was that this chronic condition affects 10% of women around the world.

Statistics say that 1 in 10 women have endo, but this is only data from confirmed cases. When you take into account women who aren’t diagnosed, the real number is definitely higher.

Thinking of trying to answer how to explain endometriosis pain to a guy, I decided to compare endometriosis to cancer. I know it sounds really unfair to those who have cancer, but before you judge, hear me out…

As a paramedic, I’ve seen many kinds of cancer, and my family and friends also had it. I found many similarities between both these diseases.

Which one is worse, endometriosis or cancer? I thought about it many times, and here’s what I realized…

Cancer has an end-point to it. It’s either curable and people recover, or the person dies. In both cases, there is an end-point. When it comes to endometriosis:

  • There is no cure, no relief, and no end.
  • Endometriosis itself can evolve into endometrial cancer.
  • Endometriosis spreads just like cancer.
  • Endometriosis is as painful as cancer.
  • Untreated affects multiple organs, it is also a whole-body disease.
  • There is no chemotherapy for endometriosis.
  • Regardless of repetitive surgeries, in most cases, endometriosis grows back.
  • It lowers the quality of life, making women’s diets very restricted.
  • Endometriosis gives a high risk of infertility.
  • Gives gastric and hormonal problems.
  • It erases sex life and intimacy, breaking many relationships.
  • Affects not only a woman but those who love and support her.

Why do I compare endometriosis and cancer?

Because not many people may know that the cure for cancer exists! Doctor Stanisław Burzyński, discovered the cure a while ago. Here’s a short BBC clip, and the actual full documentary.

Okay then, why don’t we hear about it? Because of one of the biggest cover-ups in the history of medicine which the FDA will never admit.

Burzynski, a bright and pioneering biochemist discovered a unique method of successfully treating most cancers. The 50-year journey, both Dr. Burzynski and his patients, have been enduring in order to obtain FDA-approved clinical trials of Antineoplastons.

Antineoplastons cure cancer patients in a matter of a few months. They don’t give side effects or kill patients (like radiotherapy does).

Defying skepticism, legal attacks from state and federal agencies, and a powerful propaganda campaign to stop Burzynski, he refused to give up, curing many people.

But FDA was determined to put stop to this game-changing innovation because they never wanted his discovery to reach the open market.

The primary reason that the cancer industry and its regulatory agencies fear the approval of Antineoplastons is purely economical. The cure for cancer exists, but the cure for endometriosis doesn’t.

How to explain endometriosis to a guy 1

How to explain endometriosis pain?

Endometriosis pain can vary from day to day or night to night. Endometriosis symptoms and severity differ from woman to woman too. Pain can be difficult to describe.

It’s true that men won’t be able to understand entirely what endometriosis pain feels like and opening up the conversation about endo pain can be overwhelming, especially when it comes to sex.

So, if you don’t know where to start, I have some tips for you:

You are most likely going to be worried that he won’t understand you. I’m here to reassure you, that it’s okay to be worried, so plan things ahead. You know the condition yourself but planning what you’re going to say will help you make this conversation more successful.

The best way to describe any chronic condition is to understand it well so you can answer any questions he may have.

I know it may seem like an early stage, but it’s good to be prepared to talk about what your future might look like, for instance planning on having kids, and potential IVF, if endometriosis was to affect your fertility.

When you’re in pain, it can be easy for you to forget that your partner also goes through things trying to work out how to help you cope.

Like myself, he may also be juggling many of the same emotions. I personally felt sadness, loss, grief, guilt, anger, loneliness, and sometimes even resentment. Knowing that endometriosis is your common enemy makes you realize, that you are both in this together.

Wait until he has a good day, and he’s relaxed before you make time for the two of you to sit down and have a conversation.

I found in my marriage with an endometriosis wife that honest and open communication is most effective, but try to switch off the phone and the telly, and create a quiet environment free from distractions.

It may happen that your guy may struggle to understand it the very first time, so try again another time.

Tell him that endometriosis is a whole-body condition and that it can affect any part of the body. Paint him the full picture of pain and highlight the range of symptoms that affect your life, including fatigue, diet, emotions, and work.

Explain to your guy that endometriosis pain stops you from doing even the simplest tasks.

So, to wrap it up:

  • Learn about endometriosis.
  • Choose the right time to talk.
  • Be patient with him.
  • Remember, you can be supportive too.
  • Don’t give up, try again…

If you want to learn more about endometriosis, I wrote an “Endo-Tool, Endometriosis for Men” e-Book of which you can get a FREE 1st chapter containing all you need to know about this chronic condition, plus how to cope and support your partner.

  • What is endometriosis?
  • What are the symptoms?
  • What causes endometriosis?
  • What does endometriosis look like?
  • What are the stages?
  • What are the types?
  • What is adenomyosis and how is it related to endometriosis?
  • Why do some women develop severe endo and others don’t?
  • Does endometriosis cause infertility?
  • How is endometriosis diagnosed?
  • Do types and stages affect the treatment?
  • Recurrence of endometriosis after excision surgery.

FREE Chapter of “Endo-Tool”!

an Endometriosis for Men book

FREE Endo-Tool e-Book yellow image

    How to explain endometriosis pain to a guy?

    I asked directly my wife, her mum, my sister, and my mum. I wanted to know the difference between a “normal period” and a period during endometriosis.

    What I found was the fact that “normal period cramps” don’t compare to those women who suffer from endometriosis.

    Aside from my wife, all the women said that they had moderate pain during their cycles. My wife, on the other hand, was in a lot of pain.

    My wife had extremely painful periods and also painful ovulation, but none of the non-endo ladies went into the details of how it meant to feel because every woman is unique and has a different level of pain threshold.

    The cramps women get during their period can be tough, but with endometriosis, the pain may be so intense that it affects your daily routine. It might even stop you from doing some of the things you love. For my wife, it is dancing.

    What I’ve learned by talking to my wife is that endometriosis causes pain in more than one area of your body, including:

    Pelvic or belly pain may start before the period and last for several days. It can feel stabbing and sharp, some women say it feels like their insides are being pulled down. My wife has very intense pains, driving her psychotic, wanting to cut herself open.

    Backache. The uterus and ovaries are near the back and so belly pain radiates over hurting your back, too.

    Leg pain. The nerves that connect to your groin, hips, and legs are also involved. Their pain can make it hard to walk. My wife limps or has to curl often.

    Painful sex. It’s almost non-existent. Many women with endometriosis feel pain while having sex but despite the pain, they try to please their partners, ignoring their own well-being.

    Painful bowel movements. Depending on the affected areas, it might hurt to poop or/and make you constipated.

    All the above pains can be confusing, as 40% of women, including my wife, have fibromyalgia which causes widespread pain. This is why it’s difficult to know how to explain endometriosis pain to a guy, as it’s extremely complex.

    How to explain endometriosis to a guy 2

    The complexity of endometriosis!

    It gets even more confusing because when a period signals a problem, it can reflect itself in different ways – periods, no periods, painful periods, stabbing agony, light periods, heavy periods, or completely opposite – spotting.

    As you probably learned back at school, menstruation is the monthly shedding of the female uterine lining.

    It can be very uncomfortable and sometimes inconvenient because the period is the body’s way of saying that the reproductive system is working properly.

    Every woman is unique and every woman’s period has its own personality, therefore it reflects the pain differently. Some are short, others are long. Some are heavy, others are light.

    That adds up to the complexity of endo and makes it more difficult to answer how to explain endometriosis pain to a guy…

    Is there such a thing as a normal period? The answer is no, not really.

    The reason being is that the average woman’s menstrual cycle lasts about 28 days, and the average bleeding lasts for three to five days but periods can vary from woman to woman.

    Every woman should be tracking her own menstrual cycle because it allows her to notice whether something is wrong or not.

    The period can either:

    • Slow down or stop.
    • Get heavier than normal.
    • Bleed between periods.
    • Get extremely painful.

    Many women have heavy bleeding and strong cramps when they have their period. It is known as “menorrhagia”. However, heavy periods are sometimes caused by other health problems.

    Beyond that, they can lead to other health issues. If you soak through a pad or tampon every hour or so you need to consider that option and contact your doctor.

    It is important because heavy bleeding, as was the case of my wife, causes anemia, which undoubtedly is going to leave you weak, fatigued, drained, and tired all the time.

    My wife had to:

    • Change pads at least once an hour or two for an entire day at a time.
    • Change pads in the middle of the night.
    • Wear pads at a time to manage the heavy flow.

    Women may also:

    • Skip things they love doing, due to painful cramps.
    • Pass blood clots that are the size of quarters.
    • Have periods that last longer than 7 days.
    • Feel tired or short of breath.
    • Bleed between periods.
    • Bleed after menopause.

    There are some common causes of period changes. These causes might be:

    Hormone problems. Every month, a lining builds up inside the womb which needs to be shed during the period. If the hormone levels aren’t balanced, the body can make the lining too thick, which leads to heavy bleeding.

    If then the ovulation (release of an egg from an ovary) won’t happen, this can throw off the hormone balance in the body and that leads to a thicker lining and a heavier period.

    Growths in the womb. They can be in a form of polyps or fibroids, which are non-cancerous tumors that grow within the uterus. Both, too, can make periods much heavier or make them last longer than they should.

    Certain IUDs. Some of them can definitely cause changes in the period and many women use them for birth control. If IUD doesn’t contain hormones, it may make periods heavier.

    Female cancers. It’s pretty rare but cancer of the uterus, cervix, or ovaries may cause excess bleeding, which may appear to be a heavy period.

    Pregnancy problems. An example here is an ectopic pregnancy. It’s also rare but it happens. After sperm and egg meet, the growing ball of cells. It may cause serious health problems and such as heavy bleeding.

    Besides all the above there are bleeding disorders, which can occur in a family or certain medications such as blood thinners may also cause heavy periods.

    So, there’s plenty to take into consideration when it comes to menstruation changes if you are looking for evidence of endometriosis pain.

    How to explain endometriosis to your boss?

    So here is another issue my wife had. Not only did she struggle with how to explain endometriosis pain and people who could not understand it, but she also didn’t know how to explain endometriosis to her boss.

    Whatever your boss will decide to do, there are changes that might follow, you may be asking yourself more questions, which may impact your life, including:

    • physical health
    • psychological health
    • mental health
    • your relationship
    • planning family
    • work and social life
    • financial situation

    Before you begin to think about how to explain endometriosis to your boss, there will be an avalanche of questions popping into your head, so before the meeting with your boss, you need to get to know your options and your rights!

    I have no idea how it is in other countries but I base this on my wife’s case, which took place in the United Kingdom.

    Your sick pay. In the UK we have Statutory Sick Pay which is not paid at your normal rate of pay but at the SSP rate – £88.45 per week.

    Seems laughable, right? Well, unfortunately, that’s real.

    SSP is not paid for the first three days of sickness. Furthermore, it runs out after 28 weeks. Additionally, if you’re self-employed you are not entitled to this.

    You must provide the self-certification form or a letter from your GP (let’s call it “a sick note”) in the case of your absence being 7 days or more. Self-certification forms are available in your GP surgery.

    For women suffering from endometriosis, the reoccurring situation of not being paid for the first three days of their absence results in a great loss of money.

    Longer-term sickness results in the statutory sick pay period of 28 weeks but after that period you are no longer able to receive this kind of pay from your employer. Don’t get alarmed – the government will take over in continuing to pay you, thanks to you paying money through your payroll.

    Privacy. You are entitled to refuse any of the information about your health. You cannot be forced by your boss to agree to disclose your medical history.

    Endometriosis is a very personal and feminine condition. You may feel frightened and refuse to talk to your male boss but also from the fear that your colleagues at work might hear you speak and you worry about what they might think or say.

    My wife works from home these days but feels guilty, and says that work colleagues probably talk behind her back.

    I try to reassure her that they have their own lives to worry about, I say that “people don’t think what you think, these are your thoughts. Besides, they aren’t your friends or family…”

    Equality and Disability. This might be tricky to consider and I will be the first to admit, that my wife refuses to be seen as “disabled”. She’s fit, she’s a dancer and she doesn’t want to feel limited in any way.

    I am pretty sure, this is the case for many of you lovely ladies.

    Women suffering from endometriosis feel a physical or mental impairment that has a substantial, and long-term negative effect on their ability to carry out normal day-to-day tasks, and when it comes to a job, it may seem impossible.

    In some cases, such as my wife’s, if you work with a computer, you have the option of working from home. Ask your employer for just that. Remember that you’re entitled to work within reasonable adjustments under the protection of the Equality Act since 2010.

    None of you are going to lose on it and it might be a win-win solution. If you take zero days off, you are more efficient at work. Both parties win!

    Occupational Health. My wife also reached for it. People often think that it isn’t in their right to reach out to OH, but actually, with my presence at the meeting with her boss, my wife did exactly that.

    She told her boss to contact Occupational Health for her because contacting “Occy Health” is her employer’s duty.

    As my wife found out firsthand, not all OH consultants are familiar with endometriosis, and it might be necessary for the various doctors to work together, and with your consent, collect the appropriate data to make recommendations.

    Ordinary Flexible Working Request. You have the right to make flexible working requests but your boss is not obliged to grant them.

    As I said, my wife asked to change her work location (home) and change her working hours like it was for the majority of people being able to work from home during the epidemic of Covid-19.

    Remember that you don’t have to do everything yourself. If you have a helpful male in the family, use him so to speak. Have a man by your side!

    Yep – this is where we step in guys – it really does miracles!

    Having a man by her side the employer will not dare to dismiss or blindly blame endometriosis on stress and anxiety, not knowing what it is in the first place.

    You are there to put your foot down if anything was to go along these lines! If needed, do it, be the man, and confirm what your wife is going through.

    A recap of how to explain endometriosis pain to a guy?

    How to explain endometriosis pain to a guy who never experienced it?

    THERE IS NO CURE. Regular surgery is needed to physically cut out the unruly tissue. After that, you literally can’t move for a week or more. Women truly deserve to be treated special. I believe that women’s life is more difficult than men’s.

    Even the women who are healthy have more struggles than us in life, let alone women who suffer from endometriosis.

    I hope I managed to at least touch the subject and answer in basic terms how to explain endometriosis pain to a guy.

    Let’s meet in the comments section below. We can help spread awareness of endometriosis, one of the most brutal chronic conditions.

    Signature Lucjan
    Lucjan B

    About Me

    Hi, I’m Lucjan! The reason why I decided to create this blog was my beautiful wife, who experienced a lot of pain in life, but also the lack of information about endometriosis and fibromyalgia for men…

    2 thoughts on “How to explain endometriosis pain to a guy?”

    1. Best Lucjan,
      My wife sends me this link to read, because we, just like you guys, went through the whole process of going from doctor to doctor and hear almost every “expert” opinion all these doctors have with regards to Endometrioses.
      My wife is on the waiting list for her 5th operation now, but because of the Covid-19, she is not seen as a priority. Painkillers are not working anymore, and I wish I could change places to ease her burden. That is the powerless feeling any husband or partner has seeing his wife in this agony of severe pain.
      It is a lengthy piece of text to read, but its full covers what I also try to explain to people if they ask me;” what is Endometrioses?” Sometimes I am not even going there anymore because people just do not understand, and it is hard to explain.
      We are by the way Dutch, and in the Netherlands, there is only 1 specialized hospital that has extensive knowledge and experience with the condition and that hospital in in Amsterdam. For us, a 3-hour drive from home.
      Just like your wife, my wife loves dancing (we did ballroom dancing on competition level), see loves horseback riding (she also does that on high competition level, and was gymnastics on national level when she was younger. So she also learned how to “eat” away the pain and not have this condition stand in her way, but when she is getting older and older it is harder to do. (she is now 37)
      She also sometimes wanted to make the comparison with cancer, but as humble as she is, she never did that because she thought that cancer is considered much worse, until she read your blog. Basically, same for me. What we already thought, you put into words. Thanks for that. We feel not being alone in this anymore.
      Nobody in our families understands this. They all think it is treatable and should be fine after an operation. They are every time again surprised if I tell them that my wife is going backwards again and soon need to be operated again. They do not understand.
      I will send them this article and maybe it will be an eye opener for them. (I will first translate it into Dutch, so it is a bit easier to understand. (I work in Saudi, so I read, write, and talk English all day, so basically my second language now.)
      I just wanted to thank you for this. I will share (did it already) with close friends and family in the hope of a little more understanding of this problem.
      I wish you and your wife all the best and strength in the world. Just like you, I love my wife very much and I made a promise when I married her. We are all in this together, and no matter what, we will go through it together. That makes a good team.
      Regards,
      Gertjan (& Angelique)

      Reply
      • Dear Gertjan & Angelique,

        It is so lovely to hear from you guys. You are really kind and you made me realise that I’m on the right track to helping people or ar least letting them know that they are not alone.

        I’m so sorry to hear that your wife has a 5th operation now. My M had only one but she was lucky enough to be operated on by one of the top specialists in London where we live.

        However, she still suffers with pelvic pain and all-over, widespread body pain which has been diagnosed as Fibromyalgia.

        The things that help her through is doing excersise, pilates and dancing but not too much. She uses CBD cream to help her pain but she doesn’t take any hormones because they cause her very bad mood swings and she already suffers from anxiety and depression. She doesn’t take painkillers aside from Paracetamol.

        She’s 45. What helps her is psychotherapy CBT for anxiety because stress is the trigger for pain.

        I am happy that you want to translate my post to Dutch. This is so nice.

        Thank you both so much! I’m certain that she finds an angel in you, you sound like the best man for her. She’s lucky to have you. You’re doing fantastic job advocating for her.

        Sending our love and support Gertjan & Angelique,

        Lucjan & M.

        Reply

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