The truth about living with endometriosis. From a man to a man, the real struggles of your partner.
The truth about living with endometriosis.
Having a chronically ill wife I’ve come to realize how many men are uninformed about this condition. Understanding the truth about living with endometriosis being really complex, is the key to better support.
Loving a woman with endometriosis can be very rewarding but it’s also quite challenging.
Not only has it impacted her physical health, but it also affects mental, emotional, psychological, social, financial, sexual, and parental aspects.
Not many men take women seriously, especially those who are supposed to take care of them – the doctors, partners, fathers, male employers…
In order to take good care of your woman, you need to learn about all the factors affecting her.
Here’s the truth about living with endometriosis:
- You will never understand her.
- Endometriosis is complex…
- The pain isn’t only physical.
- Being well is a full-time job!
- Sometimes she wants to end it.
- She feels guilty and sorry for you.
- She doesn’t feel like a woman…
- GP won’t take her seriously!
- She needs BSGE, not gynecology.
- They will suggest ridiculous “cures”.
- It takes years of trial and error…
- And what about work and money?
Many women are misdiagnosed with other conditions, often being accused of having a psychosomatic or mental illness.
The endometriosis research is poorly funded, causing a really big gap in the knowledge of the disease and treatments.
Most general practitioners don’t understand this chronic illness.
While painful periods are one of the symptoms of endometriosis, there is a “normalization” of female pain, which isn’t taken seriously. Women aren’t treated fairly.
There are so many varied symptoms women go through daily, that stop them from doing what they want. That is the truth about living with endometriosis.
A quick note to men…
As a husband of a woman with endometriosis, I’ve spoken with many women who suffered in silence for years, and many of them attended unsympathetic medical personnel who always dismissed their pain and concerns.
That also was the case for my wife, until I made a choice to step in!
The best piece of advice I can give you, to begin with, is this – don’t shy away, be a man and fight for your partner by attending her appointments with the doctors.
She’ll only have a friend in you, she’ll have hope and trust in you. Don’t let her down, be there for her, listen, and support her choices.
She wants to be wanted, loved, and feel like a woman. She needs some sense of normality.
You will never understand her.
No matter how much you try, you will never be able to understand what she’s going through. The reason is simple – you’re not a woman.
Oh boy, haven’t I tried to achieve that! Thirteen years and counting…
I can sense when her flare-ups are coming, I can notice when her mind wanders, I can visibly see when she suddenly jumps with a stabbing pain.
It’s not a simple period cramp. It’s an agonizing, seriously painful sharp moment, that lasts for a few seconds at a time. Her expression says it all, she cannot hide it, no matter how much she tried.
You may notice bits and bobs, but you will never truly understand what she’s going through.
There are so many variables that need to be taken into account. Endometriosis is very complex…
I help you understand its complexity in a simple way, using my “Endo-Tool, Endometriosis for Men” e-Book. I give you the 1st chapter FREE. It contains 20 pages filled with value, such as:
- 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.
Get FREE “Endo-Tool”
Endometriosis for Men e-Book
Endometriosis is complex…
Endometriosis has four stages and four types.
Additionally, depending on the location and size, endometrial lesions give excruciating pain or give no pain at all.
In the latter, the symptoms may be hidden, often causing delayed endometriosis diagnosis.
Stage 1 – minimal – where there are a few small wounds or lesions, which may be found on your organs, the tissue lining your pelvis, or even your abdomen, but there’s little to no scar tissue.
Stage 2 – mild – where there are more implants than in the first stage. Additionally. they are deeper and may create some scar tissue.
Stage 3 – moderate – this stage has many deep implants. You may additionally have small cysts on either – one or two ovaries, and even thick scars called “adhesions”.
Stage 4 – severe – as the name suggests, is the most severe stage which is widespread. You have many deep and thick adhesions and there will also be large cysts on one or both ovaries.
Superficial peritoneal endometriosis is the first type, in which a thin membrane, called “peritoneum”, lines your abdomen and pelvis, and covers most of your organs in these cavities.
In this type, the endometrial tissue attaches to the peritoneum, which is the least severe form of endometriosis.
Endometriomas. These are dark color cysts, fluid-filled, also called “chocolate cysts” because of the way they look.
They vary in size and may appear in different parts of your pelvis or/and abdomen. However, they are most common in the ovaries.
Deeply infiltrating endometriosis (DIE). The endometrial tissue in this type invades your organs, either, within or outside your pelvic cavity.
This may include your ovaries, rectum, bladder, and even your bowel. It’s rare, but sometimes a lot of scar tissue can bind organs together in such a way, that they become stuck in place.
This condition is called “the frozen pelvis”, and only happens to 1%-5% of people with endometriosis.
Unfortunately, my wife belongs to the 1 percent, having stage IV deep infiltrating endometriosis.
Abdominal wall endometriosis. Lastly, type four (adenomyosis) is a type of endometriosis where the endometrial tissue grows on the abdominal wall.
The cells may even attach to a surgical incision, like one from a C-section.
The pain isn’t only physical.
Aside from physical symptoms, such as chronic pain, fatigue, anemia, symptoms similar to IBS, there are psychological, emotional, and mental factors that need to be taken seriously.
The truth about living with endometriosis is that your partner will experience a lot of emotions, including loss, grief, guilt, burden, frustration, and anger.
The loss and grief over endometriosis making some women infertile are only natural. When your partner realizes she can’t have kids, it can be really devastating for her.
The feeling of a burden to you is also common. She is going to feel guilty for you sticking up by her side instead of living your life.
My wife asked me to divorce her for my sake on three occasions. Of course, I refused every time.
Additionally, women experience a lot of worry and stress.
Before the diagnosis, not knowing what caused my wife’s health issues, and the unexplained at the time symptoms made her experience a lot of panic attacks.
She used to overthink things such as not being able to work without pain to the point that she hyperventilated, which made her faint often in the middle of the street on her way to work.
Not being able to function properly, evolved into general anxiety.
Many women develop anxiety, OCD (Obsessive-Compulsive Disorder), and depression.
Women suffer from general anxiety because of the fear of the unknown future, which makes them overthink things to the point, they believe it’s really going to happen.
OCD, which is a form of anxiety, is meant to give people a sense of security, a way of keeping control over some aspects of their lives.
However, Obsessive-Compulsive Disorder itself controls them instead.
Depression occurs because of the loss of life they used to have before endometriosis began to change their lives.
Women think about these negative changes and the trauma of the diagnosis they experienced, it begins to blend with reality, even though they went through it a while ago.
It takes time to adjust, but it’s much easier with a supportive partner.
I remember the time when my wife’s invisible symptoms weren’t acceptable by her father, her brother, and even the doctors.
All of these men’s lack of understanding and a total lack of support, disbelief, and ignorance, made my wife feel unwanted, which led her to suicidal thoughts and attempts.
If it wasn’t for me and her mother, two people who chose to believe, she wouldn’t be here today.
Sure, she still struggles. The diagnosis of one chronic condition was traumatic enough to cause her to develop fibromyalgia, a disorder characterized by widespread pain.
You see my man, the truth about living with endometriosis is more complex than physical symptoms, all of which are invisible.
The invisible illness women suffer from is often met with disbelief and a judgmental attitude. This brutal illness affects every aspect of your woman’s life.
Being well is a full-time job!
Imagine waking up in pain, falling asleep in pain. You want to eat breakfast but the problem is, the endo diet makes your choices of food very poor.
You’re not allowed dairy products, sugar, red meat, alcohol, and the list goes on…
Not that you’d drink alcohol in the morning, it’s just to show you, you’re diet is simply miserable. You’re only allowed a so-called “low Fodmap” diet.
It easily makes your vitamin deficient, and you also find yourself severely anemic. However, your iron levels may be bang at the lowest point, but as long as you don’t go below, they won’t give you an iron infusion.
They offer you pills and sprays that you cannot ingest because endometriosis affects your digestive system.
Endometriosis causes inflammation. Have you heard of endo-belly? The symptoms similar to IBS cause it. When your lower abdomen swells, it puts pressure on your stomach.
This causes you to have heartburn and acid reflux. When ingested, including iron supplements, it makes you sick.
You become extremely tired and fatigued. You cannot last half a day due to severe anemia. But again, doctors delay your iron infusion for months because the cost of it matters more than your health.
Constant battles, not being able to work, and having a social life, make you deteriorate both – physically and mentally.
Have I mentioned that you have to juggle it with taking care of kids, being a good wife, giving you sex despite excruciating pain?
That’s why having endometriosis and trying to be well is a full-time job! This is the truth about living with endometriosis my friend. This is why I stood by her for over a decade now, in comparison to her, I have nothing to moan about.
Sometimes she wants to end it.
You read this right man, sometimes she just wants to end it all, meaning, kill herself.
And no, she won’t tell you about it. She’ll keep her thoughts away from you, not to hurt you, not to worry you.
Your partner is most likely planning her funeral while drying her hair.
Don’t believe me?
I have spoken to at least a thousand women over the years, so trust me when I say this, she hides dark thoughts because she’s a fighter, she doesn’t want to disappoint you, she wants to live, but not like this.
I am not saying that she’s going to commit suicide, but your partner has every right to feel such emotions. It’s only natural knowing what she has to put up with on a daily basis.
This battle in her head never ends. My wife tried to commit suicide on more than one occasion. I never blamed her.
She felt ashamed, even though I told her not to. She’s not guilty of anything. She’s in emotional, mental, and physical pain. Don’t judge, support her choices, and try to be understanding. Simple listening means a lot.
She feels guilty and sorry for you.
Don’t get surprised if someday she gets angry to the point she tells you to f… off. Sometimes it’s easier to split with someone that way.
She does suffer, but she understands that you suffer with her.
Your pain may not be physical but it’s emotional, psychological, and sometimes even mental. You can also develop anxiety and depression. Many spousal caregivers do.
Watch for signs of caregiver burnout. Feeling excessively angry, frustrated, resentful, worried, sad, and annoyed, may evolve into burnout, and full-blown depression.
Men don’t deal well with their emotional issues. The suicide rate is much higher than the one of women.
She doesn’t feel like a woman…
You wouldn’t think that this can be influenced by this chronic disease, but the truth about living with endometriosis is that your partner may not feel like a woman for three main reasons:
- Sex and intimacy.
To be exact, a lack of all the above. Yes, these aspects of womanhood are common amongst women with endometriosis.
Not being able to give birth is a strong enough reason to make her feel less womanly. Women dream of having kids and a family.
Unfortunately, not all the ladies suffering from endometriosis will be able to have kids.
Infertility is a big problem, so as long as she’s still young enough, she should freeze her eggs for the future if she decides to have kids. IVF gives you the possibility of becoming a father too. Remember, you’re both in this together.
But how do you make kids? Hmm… ah, sex!!
Wait a minute, she can’t, she’s in pain again…
The lack of sex can be really frustrating. The natural need for intimacy will always be there. But try not to be selfish my friend. Remember that endometriosis makes her extremely tight.
However inviting it sounds for you, she goes through agony to please you. She doesn’t take pleasure in sex.
It hurts. It really hurts!
The lesions and scars that endometriosis often creates don’t stretch, their thickness and density don’t allow her to feel comfortable.
Pelvic floor physiotherapy can help, but to get it takes sometimes months, even years.
Remember that sex isn’t only about penetration. You can explore as long as your imagination allow it. And if you’re really desperate, an oral always does the trick, wouldn’t you agree?
No guy will ever say no to a blowjob. Have it in mind.
As for her pleasure, the internal stimulation hurts, but after speaking with my wife and other women, clitoral stimulation never hurts.
That’s great right? Yes, it would be, if the finish didn’t hurt. They unfortunately do.
How can her this hurt?
Remember that her womb is a muscle. The pleasure waves give muscle contractions and since the endometrial tissue is attached to it, she feels like being ripped apart inside during extasy.
So, next time you ask her for sex, think about it and discuss any strategies that, and say that you learned about her pain. She’ll appreciate your care.
GP won’t take her seriously!
The truth about living with endometriosis is that doctors aren’t informed well enough about this chronic condition.
The lack of their knowledge will bring you a lot of wasted time and wasted appointments.
Do not fall for their sentences such as “have you been stressed lately?” or “it is anxiety dear, take two of those days and you’ll be fine…”
How annoying is that?
Of course, she’s anxious because she suffers and they are blind enough to notice that. The pain and suffering aren’t in her head. It’s invisible but it is real.
Comments about giving you hormones or SSRI antidepressants won’t solve her problems, won’t stop her symptoms and the underline cause is endometriosis.
They need to wake up and start using common sense rather than the following system, which is only designed to suit their pockets, saving money for FDA ( Federal Drug Administration) which is a business like no other.
What can you do?
As a man, be there. It is as simple as that. Here’s why…
My wife wasted precious years trying to discuss her symptoms with the general practitioners because as a woman, her female issues were always being ignored, swept aside. She was told that period should hurt.
I’ve never heard more rubbish in my life!
Anywho, only when I stepped in accompanying her at her appointments, the doctor’s attitude change.
They began to take her seriously fearing that I would say something. My presence was a strong enough reason for them to act as they should.
Sometimes I had to say a word or to confirm her symptoms, otherwise, they wouldn’t believe her and fob her off again.
Your presence will make a difference. Now, man up to the task and help be taken seriously.
She needs BSGE, not gynecology.
This is extremely important. You have to get this right!
If her doctor isn’t a BSGE specialist, who as the name says, specializes in endometriosis, you should raise your concerns.
Remember, she has a right to a second opinion!
Don’t trust any GP who states that a gynecologist will help her out. They won’t.
Gynecologists don’t specialize in endometriosis, they will not be able to find it, as they don’t know how it looks like. Only experts in this field, BSGE surgeons will spot it without a problem.
Additionally, even if a gynecologist opened your partner during surgery, they would perform an ablation which is a wrong approach.
By burning endometrial lesions they grow back quickly, cause big scars, giving complications after the surgery. Only a BSGE specialist will perform excision and cut everything possible.
So don’t shy away from stepping in and telling her doctor what you think. Remember, you educate yourself about it, general practitioners don’t.
Again, if he becomes cocky telling you he’s the doctor, you have a right to a second opinion. Have it in mind.
They will suggest ridiculous “cures”.
Staying on the subject of general practitioners, they will suggest your partner ridiculous “cures” which they strongly believe will help her.
Again, rubbish. Take it from the couple who knows. My wife doesn’t take any hormones, she doesn’t take any painkillers, no antidepressants either.
I attended with my wife many endometriosis support groups physically, we also joined many webinars.
I can openly say – women who take medicines such as hormones, painkillers, antidepressants. All of the above only mask the symptoms, which isn’t helpful.
Meds have countless side effects. Just think about it, for every benefit she has 5 or 10 side effects, adding her more problems than she already has. Constipation, fatigue, psychosis, insomnia are amongst the most common.
Don’t believe me? Just read the label.
If my M is better off than women who take all these medications, why would doctors even try to offer them to your partner?
There a few reasons:
- To fob her off, she visits them too often.
- They have no time or will to research what your partner suffers from.
- To save money for FDA, which by prescribing they don’t even realize they do.
There’s one more thing that not only doctors but even friends of friends overheard… they will claim that pregnancy or hysterectomy is going to magically cure your partner.
There’s no cure for endometriosis!
Getting pregnant is a temporary solution. After she has a baby, her hormones go back to normal levels, which means, excess estrogen may make endometriosis gradually grow again.
Hysterectomy is simply put a surgical removal of the uterus. Additionally, hysterectomy may involve removal of your cervix, ovaries, Fallopian tubes, and other surrounding structures.
But endometriosis grows also outside her uterus, so by removing the uterus endometriosis is still present.
By suggesting such inconsiderate ideas, shows a lack of knowledge, sometimes even negligence.
It takes years of trial and error…
When it comes to the truth about living with endometriosis, the diet plays a big part in lowering, and avoiding inflammation, therefore pain.
Whenever I go to a restaurant, I order a second option she normally would. The first one is hers.
What I mean by that is that we research menus before we go out. The meals must be as endo friendly as possible.
We don’t visit any restaurants that have less than two meals that suit her. Unless we’ve been to a particular restaurant before and she knows they deliver what my wife needs, I skip my tasty steak.
If it’s a new restaurant, I always order one of the other meals that are endometriosis friendly. It gives her options in case the meal she ordered is too spicy or has plenty of things they did not mention on the menu.
In situations like that, I give her my meal, taking her first choice instead. She still eats the endo-friendly meal, everyone is happy.
She has to take a holistic approach to treat symptoms of endometriosis. No amount of medication will help as much as doing this in a natural way.
A holistic approach doesn’t harm, brings only the benefits your partner needs, not side effects.
I could tell you a lot about a holistic approach to the treatment of chronic conditions, but honestly, I am not an expert.
I can only tell you what works for my wife, and what works for many women I’ve met…
A lot of light exercises, such as walking in the park or woods, swimming, light weights, yoga, and pilates. Especially pilates, I highly recommend!
It all works well, but to directly target the pain with no side effects, I highly recommend CBD balm. You can use oils too, but we found with M that whenever I apply it to the areas where my wife has pain, it takes 15 minutes to calm it down.
And don’t forget, aside from deep infiltrating endometriosis my wife has fibromyalgia. Her pain is widespread, all over her body.
CBD is extremely useful in lowering painful signals.
Additionally, Cognitive Behavioural Therapy, CBT for short, is a great way of helping with endo symptoms because stress causes your partner to experience pain as opposed to when she’s calm and relaxed.
Unfortunately, that is the truth about living with endometriosis.
Work and money…
There will be financial issues. If not because of your partner’s flare-ups and fatigue, then when you take time off work to help her, if she is your wife.
As her boyfriend, you have no need for taking time off, her family can take care of her, but when you’re married to a woman who suffers from endometriosis, you may feel like me, somehow obligated to stay with her.
This may cause a lot of financial problems, as she may not work enough, only part-time. It can make you feel like you can’t take time off work.
Sometimes, however, you have to.
How can you balance being a caregiver and spouse? And how can you work and be with her at the same time?
The solution is in the front of your eyes. What are you reading right now? You’re reading my blog.
Blogging is the best and least risky way of making income from home, or whilst traveling the world for that matter. The choice is yours…
The pros of blogging?
- Time for your partner.
- Private health care for her.
- No stress with work 9 to 5.
- Early retirement.
- Financial freedom.
- You can travel the world.
Cons of blogging?
- Time and dedication.
That’s it. These are the only cons. If you want to succeed as a blogger and make money, you need to take it seriously and be very patient. Like any business, blogging takes time.
If you want to make a living from blogging, you need to take it seriously and work on it. That means, skip unnecessary things that you do and spend time on writing instead.
Yes, in order to succeed, you have to sacrifice a bit of your time.
I’m not telling you this to scare you but to help you realize that blogging takes dedication and time. If you aren’t prepared for that, you will be disappointed.
If you need details about how to get there from scratch, from zero to hero, from nothing to making money, read this article.
I explain how you can get there from A to Z. No fluff, just good advice.
Alright then! That’s it for the truth about living with endometriosis from the perspective of a man.
I hope you enjoyed it, I hope you found it helpful.
If you feel overwhelmed, my best advice for you is to sit down, have a nice cuppa coffee, and have an honest chat with your partner.
Let her tell you what she feels, and explain to her the importance of your own needs. They are extremely important because if you neglect yourself, you will not be helpful to anyone, you are most likely going to burn.
Educate yourselves about blogging and maybe write one together. It will give you both a sense of aiming for something, getting busy, forgetting about the pain, experiencing some normality.
Additionally, by doing it together, you can get there twice as fast as you normally would.
Isn’t this inspiring?
I’ll leave you with that on your mind. Cheerio!
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…