Being a husband to a woman with endometriosis, I often felt worried, helpless, and sometimes even unheard and resentful. The reason being was my lack of knowledge about this insidious condition.
My wife felt like a burden to me even though I never made her feel guilty or useless. She tried to commit suicide on two occasions and asked me to divorce her "for the sake of my happiness" as she put it.
10 years on, I stood by her.
I know that I cannot fix my wife's health, and I will never be able to understand what she's going through. Not only I began to educate myself about this chronic illness, but I went even further - I started a blog to educate male partners of women with endometriosis on how to cope with the new normal in their relationships, and how to best support their chronically ill women.
Men struggle to
grasp what endometriosis is because it's a "female"
problem, and we are not used to talking about female anatomy or problems.
Menstruation and menopause may sound alien to some of us. But when it comes to
endometriosis, many men can't even spell it, let alone understand it!
Endometriosis is a chronic and often debilitating condition that affects millions of women around the world. Though it is most commonly diagnosed in women of childbearing age, endometriosis can occur in women of any age.
The condition occurs when endometrial-like tissue, similar to the one that normally lines the inside of the uterus, grows outside of the uterus. This can cause severe pain, heavy bleeding, and other symptoms such as fatigue, brain fog, anxiety, and depression.
Most men believe that endometriosis is just a pelvic condition. This isn't true - endometriosis is a full-bodied disease. While there is no cure for endometriosis, there are treatments that can help alleviate the symptoms and improve quality of life.
If you are in a relationship with a woman who has endometriosis, there are a few things you can do to support her and make her life easier.
I always say that “the best gift you can ever give to a chronically ill partner is your unconditional love and support”.
But there is more to it. In order to give you a more detailed answer, I give you 15 tips for helping partners with endometriosis:
1. Educate yourself about endometriosis.
The first and most important thing you can do is educate yourself about endometriosis. This will help you to understand what your partner is going through and how endometriosis affects her day-to-day life.
There are a lot of misconceptions about endometriosis, and it can be hard to separate fact from fiction. The more you know about endometriosis, the better equipped you will be to support your partner.
There are many websites like Endo-Resolved and books that provide you with information about endometriosis. If you want to be able to support your partner, it's important that you educate yourself about endometriosis.
2. Understand that endometriosis is chronic.
Endometriosis is a chronic condition, which means it lasts for a long time, often years or decades. It can also come and go, flares up at certain times, and then goes into remission. This can be hard to deal with both emotionally and practically, so it’s important to be patient and understanding.
Endometriosis is chronic, which means it is a long-term condition that can challenge couples, and even break the strongest of relationships. That is why it can be difficult to come to terms with it, especially when you know that endometriosis is not curable – yet.
Let's discuss it a little bit more...
3. There is no cure for endometriosis.
There is no cure for endometriosis at present. There are treatments that can help to alleviate the symptoms, but the cure does NOT exist yet.
This can be frustrating and disappointing, but it’s important to remember that endometriosis is a complex condition and scientists are still working to understand it fully.
Many people wrongly believe that pregnancy or hysterectomy cures endometriosis. This is false!
Pregnancy may temporarily relieve endometriosis symptoms for some women but the endometriosis will eventually return after the baby is born. Pregnancy is NOT a cure.
Hysterectomy (surgical removal of the uterus) may also relieve some symptoms temporarily, but again, endometriosis often comes back after surgery because the lesions grow outside of the uterus, therefore cutting the uterus out does nothing to the endometrial tissue.
Remember - endometriosis is a full-body condition.
4. Accept the new normal in your relationship.
Endometriosis can change your relationship in many ways. She may need more support than she did before, or she may need space to deal with her condition. It’s important to talk openly about how endometriosis is affecting your relationship and what you both need from each other.
Accepting the new normal can be a long journey, but it is so important for both of you. It takes time to get used to the new way things are, but eventually, you will find a new normal that works for both of you.
For my wife, endometriosis is her primary condition, but she also developed fibromyalgia which she was diagnosed with the following year.
From full-time dancer, choreographer, and performer, my wife turned into a part-time medical secretary working from home. She's lost her fitness and dance business. She used to run a dance school and had a lot of friends. Today she has me, and that's about it.
The new normal may seem impossible to get used to but expect the unexpected, and hold on to one another.
5. Be patient, understanding, and empathetic.
Endometriosis can be a very painful and debilitating condition, and your partner may not always be able to do the things she used to do.
Your plans may often be canceled. It’s important to be patient, understanding, and empathetic toward her.
Chronic illnesses can be unpredictable and flare-ups can happen at any time. It is important to be patient and understand that your partner may not always be able to do things that she wants to do.
It can be difficult to understand what your partner is going through, but it is important to be empathetic. Put yourself in her shoes and try to understand how she is feeling. I often imagine how such a situation would affect me, and I felt the reasons why my wife would want to end her life.
As I said, you will never fully understand what she’s going through, just be there for her, listen and just be there for her. Your partner's endometriosis is going to test your patience, but be patient, it's going to help her a lot.
6. Listen to her and offer emotional support.
It’s important to listen to your partner and offer her emotional support. She may need to talk about her endometriosis over and over again, but she just needs someone to listen. Let her know that you are there for her and that you support her.
One of the best things you can do for your partner is to simply listen. Let her talk about her endometriosis without judgment or interruption. Endometriosis can be a very emotionally taxing condition. It is important to offer your partner emotional support when she needs it.
By listening to your partner, you're actually going to learn way more about her endometriosis impact than from any medical professional. Remember, you know her better than anyone else.
It can be easy to feel negative when you are dealing with a chronic illness, but it is important to try to be positive. Having a positive attitude can make a big difference in how your partner feels.
7. Communicate openly and honestly.
Communication is essential in any relationship, but it’s especially important when dealing with a chronic condition like endometriosis.
Without communication, it can be difficult to understand what your partner is going through. Discussing endometriosis openly and honestly will help you to better understand each other and find ways to support each other.
When you communicate, you can learn from her more than from any medical professional. The reason being is that your partner is unique, every woman is unique, and what works for other women with endometriosis will not necessarily help her. Communicate and learn from her.
8. Don’t dismiss her pain, offer help instead.
Endometriosis can be a very painful condition, and your partner may need help to deal with the pain. Offer to massage her or give her a heating pad, but don’t dismiss her pain as “just menstrual cramps”.
Endometriosis pain is real and it is often very severe. It is important to believe your partner when she says she is in pain and don’t dismiss it as being “all in her head”.
Not only I would never dismiss my wife's pain, as it would make me feel guilty and show a total lack of empathy, but I would also fight anyone who tries and gaslight her!
I remember arranging a meeting with my wife's employer, I discussed openly how endometriosis impacts her physical and mental well-being, and how impossible it is for her to plan and travel the distance to physically be in the medical surgery.
I was met with understanding and compassion from her employer, and today, my wife works fully from home which allows her to better control her flare-ups.
I would strongly advise you to reach out to her boss and discuss the matter. Your partner may not be able to work from home (depending on the job) but there are options out there that should be implemented in order to help her at work.
9. Don’t take it personally, respect her decisions.
Endometriosis can have a big impact on your sexual relationship. She may not feel like having sex, or she may need to take a break from sex altogether. It’s important to respect her decisions and not take them personally.
Remember, sex isn't only about penetration. There's much more to it.
It's also important to remember that endometriosis is a medical condition and it is not personal. Your partner is not choosing to have endometriosis, and it is not something she can control. She feels guilty as it is, she feels like a burden to you.
She wants you to be happy.
Your partner will have to make a lot of tough decisions about her endometriosis. It is important to respect her decisions, even if you don’t agree with them. This matters because, ultimately, it is her body and her life.
The only decision I disagreed with my wife was divorcing her. She was willing to sacrifice herself in order to make me happy, to have kids, a family, and the very normal life healthy people take for granted.
But I could never leave her.
I will never have children or a big family, but I have something irreplaceable. I am healthy.
Whenever I wake up and left my head off the pillow, I have everything I ever wanted - I have health, and I have the love of my life by my side. My only burden is to make her happy. I love her, that's not a burden.
10. Don’t try to fix her endometriosis.
There is no cure for endometriosis, so don’t try to fix it. The best you can do is offer your support and understanding.
As men, we are wired to fix things. And when we cannot repair something, it makes us feel useless.
You cannot fix someone else's condition, no matter how much you want to. The best you can do is offer your support and love. Endometriosis is not a car or a broken pipe, you cannot repair something you have no control over.
She cannot do it, let alone you. Don't take it too personally.
11. Be an advocate for your partner.
Endometriosis can be a very isolating condition, so it’s important to be an advocate for your partner. This means standing up for her when she needs it, being her cheerleader, and letting her know that you are there for her.
Advocating for your partner can be a great way to support her. This could involve speaking up for her when she is not able to or attending appointments with her.
I used to go to every endometriosis group session to show my wife support. I was always the only guy present. I attend all of her therapy sessions (when allowed), and all her hospital and doctor's appointments.
As you already heard, I even organized and spoke with her boss. Today, I mostly advocate online through my blog. I even wrote a book called "Endo-Tool: Endometriosis for Men".
12. Offer practical help and assistance.
Endometriosis can be a very demanding condition, both physically and emotionally. Offer to help with household chores, child care, or anything else that she may need help with.
Offering practical help is one of the best ways you can support your partner. This could include helping with household chores, cooking meals, or taking care of children.
You may not be able to fix her health, but you can fix that sink, take the rubbish out, do shopping, and clean that bathtub or shower. Do your manly things, go outside your comfort zone and do something for your partner before she asks you for it.
13. Help her to find a support group.
There are many endometriosis support groups available online and in person. These groups can provide valuable information and support for both you and your partner.
These days, my wife doesn't go to the endometriosis group meetings, but she used to. In the digital world, it's easier to fire up the laptop and attend online meetings. What we never try to miss, however, are some serious endometriosis conferences.
If you don't have any access to those, a support group is a great option.
14. Plan ahead for endometriosis flares.
Well, that's a tricky subject because you cannot predict your partner's flare-ups. But you can learn what are her triggers, most of the time it may be:
Worry and stressful situations.
Sugar, dairy, coffee...
Too much physical activity.
Endometriosis flares can be unpredictable, so it’s important to plan ahead as much as possible. This means having a backup plan for childcare, knowing where the nearest pharmacy is, and having pain medication on hand.
It may not be easy, and it may mean that you will have to cancel a day of work, or two, but it will show her that you are there for her, no matter what.
15. Seek professional help.
Many people (including your ill partner) may not be able to understand what you are going through. It isn't widely spoken of our struggles. There is a ton of information out there for our ladies with endometriosis, but we feel unheard, even marginalized.
Society expects men to be strong and always in control, but sometimes we need help too.
If you are struggling to cope with accepting the new normal of having a partner with endometriosis, don’t hesitate to seek professional help. There are many counsellors and therapists who specialize in helping partners of those who deal with chronic illness.
If your partner is struggling with endometriosis, encourage her to seek medical help. This could include seeing a doctor or a specialist or getting surgery. Advocate for her, defend her and encourage and support them to do some things together.
There are many endometriosis support groups available, both in-person and online. Helping your partner find a support group can be a great way to provide emotional support.
Accept that endometriosis will impact your relationship because it will likely have an impact on it. It's very important to accept this and be understanding of the ways endometriosis may change things between you.
If you are struggling to deal with her endometriosis, talk to her. Communication is the key here. But if you don’t want to burden her with your own feelings, don’t hesitate to seek professional help. This could include seeing a therapist or a counsellor.
Don’t forget about your own needs, they matter. You cannot help her without being okay yourself. So take care of yourself as well. Make sure to schedule time for yourself and do things that make you happy.