My girlfriend has endometriosis

Endometriosis and Couples

on the Royal College of Nursing Website.

Endometriosis and Couples Leaflet.pdf

You may also find the following organisations helpful:

With thanks to:

The ENDOPART study participants and advisory group members
The ENDOPART study team: Lorraine Culley, Nicky Hudson, Helene Mitchell, Caroline Law, Wendy Norton, De Montfort University; Elaine Denny, Birmingham City University; Nick Raine-Fenning, University of Nottingham

Endometriosis UK, and particularly: Emma Cox, Daniella, Jess Duffin and Meg Haver
The UK Economic and Social Research Council for funding the ENDOPART study
Dr Hayley Poole, Clinical Psychologist, University Hospitals of Leicester

To provide feedback on this leaflet, please email [email protected]

Co-produced by De Montfort University and Endometriosis UK. Funded by De Montfort University.
Copyright © 2016 De Montfort University. All rights reserved.

This information sheet is primarily about heterosexual relationships, as this was the focus of the research study from which the leaflet was produced. However, it may be that some of the information will also apply to same sex couples.

Information about how endometriosis can affect couples is drawn from the ENDOPART study which comprised in-depth interviews with 22 heterosexual couples (men and women interviewed separately). For further information and to access the study’s report see www.dmu.ac.uk/endopart. Reference: Culley, L, Hudson, N, Mitchell, H et al. (2013): Endometriosis: improving the wellbeing of couples: summary report and recommendations. Leicester: De Montfort University.

Endometriosis: the silent crisis affecting relationships

123RF

There’s a silent crisis out there among men.

The numbers of women suffering chronic pain and illness from things like endometriosis and polycystic ovary syndrome – one in 10 around the world for just those two nasties – means there is also a legion of partners living with that suffering.

I’m already in a dangerous area, but will charge ahead waving this proviso. Yes, I know being a partner of a sufferer is nothing at all, compared to the actual suffering. This is not about “poor us”.

123RF Endometriosis and polycystic ovary syndrome affect one in 10 women.

* My struggle with endometriosis
* Endometriosis: not talked about or understood
* The relief of an endometriosis diagnosis
* Star describes battle with endometriosis
* Endometriosis group offers help

It’s just that men in particular are absolutely rubbish at talking about pretty much everything to each other. Just a little understanding we’re not alone can, for isolated individuals, be a huge positive.

Men are way too prepared to push on alone – silent, bewildered, sad, and angry.

A PAINFUL CHAPTER

Tomorrow morning, I will drive my partner, Jayde, to hospital for a full hysterectomy for a recurrence of cervical cancer and endometriosis. She’s 31. She hasn’t had children. (Here’s her personal story.)

Hopefully, this surgery will be an end to the chapter that pain and disease have written in our lives.

Frankly, how women are put together is an argument against any sort of divine “intelligent design”. You’re all so complicated and delicate, and it seems your parts stuff up way too easily.

Broadly, here’s what happens in a relationship where chronic pain and disease join the party.

IN THE BEGINNING

You’re a couple, so at some stage, you met and fell in love. At that moment, her pain was probably at a low, or controlled, because if she was suffering you wouldn’t have met that night.

Now you’re together. It’s early days. You’re both loving drowning in a mad, physical, obsessive attraction. No one in the world has loved like this.

A few months in, one night she’s distracted, easily frustrated, weirdly unreasonable. She explains she’s in pain. You don’t go out as planned. She says, in a low-key way, there’s something going on that’s worse than a period.

You, knowing nothing about any of this sort of thing (oh, but you will) and park it in the bin of mysterious things that happen to women.

A VICIOUS CYCLE

A few months later, she’s lying on the bathroom floor, crying, kicking her legs, looking like she’s in and out of consciousness. She’s vomiting and has terrible diarrhoea. You now know very well what endometriosis is.

A few years in, you’re into your third or fourth surgery together. The cycle is, for a few months after each surgery, she’s pain-free, and well. Suddenly, the happy, fun, energetic, sexy girl you met is back and you move forward together, almost forgetting that it has no cure, that it will be back.

What pain does is occupy her mind, totally. It’s all she can do to work, be social, see family. When she’s home, she’s collapsed on the couch, recovering from pain or surgery or just gathering energy for her next foray into life.

If you think there might be some space for you, champ, think again. As if you have the right to ask for it. She’s sick, man! Yep, you’re that bloke who’s so shallow he’d be jealous of his own new-born baby.

OUT OF CONTROL

You’re out. She’s sharing with her friends, talking about the medication, the next procedure. You’ve heard it so many times before but her support network has been invaluable, deep and strong. You wish everyone would talk about something else, normal things just once. What an arsehole.

When was the last time she called you “sexy man” like she used to? Don’t know.

The pain and disease is actually in her reproductive organs. Her hormones are a mess from medication. Your own personal desires are crass and meaningless in the face of that. What’s wrong with you?

It’s the guilt of the carer. You can’t say “what about me?”, even though you didn’t choose this. Neither did she.

WHAT CAN WE DO?

The above is not specifically our story but drawn from discussions over the past few weeks with men who have partners suffering chronic disease and pain. “I feel like cancer came in and stole her, took away her mind, wrecked her body,” one man said. “If I could physically fight it for her, I would.”

So what do we do? Two things – talk and then push on. Do what she does, share. Be honest. Whinge. Say the totally self-centred arsehole things you can only ever say to mates.

Then, remember why you love her. Remember what it means to be a man and a partner. Use your strength and your calm to help her. Relationship or marriage, it’s for better and worse.

Be so very grateful you’re not among the men who lost their love to disease forever. How much would those guys give to hold her hair in the bathroom one more time?

There will also be many moments of joy amongst it all. They may be fewer and more hard-won than back in the day, but they’re also more precious and beautiful because of it.

Cherish and live in those little shiny nuggets of happiness. Show her how much you love her with your care, consideration, understanding and patience.

Give as many of them to her, and yourself, as you can.

It’ll make you both feel better.

March is endometriosis awareness month.

essentialbaby.com.au

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Endometriosis and its impact on relationships

The Sunday News

OVER the past weeks I have written about endometriosis and some of its physical aspects. Endometriosis affects so many different aspects of a woman’s life, physical, emotional and even fiscal. Today we will delve into endo and its effects on relationships.

I have had endo since I was 17 years old, so my parents have had to deal with it for that long too, as well as my brother and other family members. The most difficult thing is that people assume that sick has a look. It certainly doesn’t. I can be glowing but feel physically terrible. It is extremely hard to explain how you are feeling to your loved ones especially if you “look fine”.

Because they see you all the time and get used to your situation, sometimes it may seem like they are ignoring you but I have come to the conclusion that it too overwhelms them as well, seeing you suffering.

Endometriosis treatments are also very expensive and so are the operations. This can put a strain on finances and in turn affect the relationship you have with people who are paying for your treatment. In most instances endometriosis can prevent a woman from working so she cannot pay her bills on her own.

Remember your family members just want to see you well so if they seem frustrated it’s not because of you, it is because of the demands of the situation. Sometimes however, family members actually think the condition is not serious and they do not help even when they can. Nobody wishes to be in pain so it is important that family tries to understand and even researches the disease. Apathy and ignorance can be very dangerous.

Endometriosis also affects the relationships a woman has with her friends. I absolutely had a hard time in high school as my time compromised going to the sickbay and explaining my symptoms to the school nurse. I became very withdrawn because girls my age spoke about age appropriate things while my mind was consumed with seeing doctors and what medications to take. I also took a water bottle to school almost daily, many people didn’t understand that.

Consequently I didn’t have many friends. Even today the people who really get me are other women who have endometriosis, some of whom I have never met but communicate with online. I do have many people who love and care about me but they don’t always understand that I can’t make a date then shut me out completely.

I speak for many women out there with endometriosis that we want nothing more to be like other young people and we want to be normal. We pray for the one day that we wake up with no pain. Many times we see pictures of friends and it breaks our heart to see that they have forgotten us or probably assume we can’t make it anyway.

The next relationship I am about to talk about might be the most difficult, the relationship between a woman with endometriosis and her partner/spouse. These are the people who stick by us the most especially if you are married. Women who are married often find themselves being called “lazy” or “useless” by family members of the spouse because they can’t understand why their daughter-in-law can’t perform like daughter-in-laws.

There is an intense amount of pressure. Moreover in African families that pay a bride price, there are comments about “paying for nothing” either from the spouse or the family member. Another issue that I will discuss in length another time is the issue of endometriosis and infertility.

If a woman cannot have a child it also puts a strain on the marriage and the woman sometimes receives disrespect from family members. Endometriosis can affect anyone and unfortunately people don’t get it, until they get it.

A relationship with a partner is also similar. Sometimes they can be ridiculed because their girlfriend is always away and not be about the town like other girls. Arguments surface as well when we have to cancel outings and cannot be out with our partners. It makes us feel guilty and sometimes even inadequate because we feel we do not do enough.

When partners are out having fun we wish they could just be with us but we have to remind ourselves that they cannot suffer because of our condition. Sometimes it is even our partners who may say the wrong thing concerning our conditions and it cuts very deep.

One thing I do know is that most times they too are frustrated and are overwhelmed by the situation. It is important to evaluate what position some comments are coming from. Do they really mean it? Is the negativity constant? Or are they just having a moment? Some women actually fear entering into a relationship because they feel they will not be loved because of their condition. I however, believe everyone deserves love no matter what their limitation may be.

I could go on and on but the one thing I would like for my readers to get from this piece is that support is the best gift you can offer a person going through chronic pain or endometriosis. They are trying and their one wish is to do more, and be more.

We can fight this, but together. Have a blessed week. Ta!

Endometriosis

My partner has endometriosis – what does that mean for me?

(PantherMedia / Elena Yutilova)

Having a partner who suffers from severe abdominal pain on several days every month will affect your life together too. It is not easy to deal with. If this pain is caused by endometriosis, effective relief is often available. But it is important to be aware of the options, limitations and disadvantages of treatments.

Men sometimes find it hard to understand how their partner’s period pain can be so bad that they regularly have to cancel plans. Perhaps you have also found yourself wondering why your partner can’t simply cope with her period pain “like other women do.”

The answer is easy: If your partner has endometriosis, her period pain is much worse than that of other women – so she is by no means just whining. Endometriosis is a medical condition where the kind of tissue that usually lines the womb also grows in other parts of the body. These “growths” are called endometrial implants. Like the lining of the womb, they build up and are shed every month. But, unlike period (menstrual) blood, the tissue that is shed in the abdomen can’t leave the body, so inflammations and scars often develop.

About 1 out of 10 women have endometriosis. Whether or not it causes symptoms, and what kind of symptoms women have, depends on things like where the endometrial implants are and how bad the inflammations are. Some women hardly have any symptoms, whereas others are regularly knocked out of action by painful cramping. Endometrial implants may grow on a woman’s ovaries and in her fallopian tubes, which can lead to fertility problems. Sometimes women first find out that they have endometriosis when they go to the doctor because they haven’t been able to get pregnant despite trying for a long time.

Diagnosed with endometriosis – Now what?

There are two reasons why it’s important for endometriosis to be diagnosed. On the one hand, the diagnosis may come as a relief to both of you. Many women who have endometriosis believe that their “period pains” are normal, and just try to cope with them somehow. Some get the feeling that other people think they are exaggerating, and start wondering whether they are simply too sensitive or wimpy. The diagnosis helps avoid these misunderstandings and feelings of self-reproach.

Knowing that you have endometriosis also means you can start treating the symptoms. The treatment options include various medications, and sometimes surgery too. The most suitable option for a woman will greatly depend on whether she would like to become pregnant. So it can be important for you to make decisions together. Having a good doctor and good medical advice is important too.

You may need to be patient while waiting for the treatment to work. Many women manage to get their symptoms under control over time. By the way: Endometriosis-related problems nearly always go away on their own after menopause.

How does endometriosis affect your partner?

Severe abdominal pain and cramping force women to make changes in everyday life. They sometimes end up having to cancel plans with friends or other appointments. If they have problems sleeping, they might feel tired and weak too, and less able to cope with stress. Women who regularly have to stay home from work because of their pain often feel guilty towards their colleagues. The pressure at work might increase as well.

A further possible symptom of endometriosis is pain during or after sex. It’s not hard to understand why the prospect of pain might reduce a woman’s desire to have sex. Many women who experience pain during or after sex try to avoid it. They often feel bad about doing so. Some women simply “get on with it” despite the pain because they would like to get pregnant, or are afraid that their partner might feel rejected or even leave them if they don’t have sex.

As her partner, it’s easy to feel a little rejected or dissatisfied, particularly if you don’t understand why she doesn’t want to have sex. Knowing that sex is painful for their partner makes many men feel guilty or uncomfortable. For all of these reasons, sexuality can easily become an issue within relationships.

Not being able to get pregnant often adds to the burden. Discovering that a woman’s fertility problems are being caused by endometriosis can lead to mixed feelings. On the one hand, you know what is causing it, which means there are treatment options. But there is no guarantee that a woman will be able to get pregnant if she has treatment. Many of the effective treatments actually prevent pregnancy themselves.

How can you deal with endometriosis?

Endometriosis is a disease that both partners have to deal with together, with mutual understanding for each other’s situations. Treatment may help relieve the symptoms of endometriosis. But the treatment can also be distressing in itself.

Women find it helpful if their partner takes them seriously and understands how much the endometriosis affects their life. In phases when the symptoms are worse, it is easier for women to cope if they are given support in everyday life. If painful sex is a problem, trying out different positions or techniques might improve things. These may include extended, relaxed lovemaking sessions that don’t necessarily involve sexual intercourse.

But there’s no need for you, as a partner, to completely ignore your own desires and needs. It can take some time to process and understand the consequences of the diagnosis. Feelings of anger (“Why us/me?”), despair, non-acceptance and helplessness are normal. Over time, most partners manage to face the new situation and find ways to live with the problems associated with endometriosis. Although you may not be directly affected by the symptoms, you will probably have to share the burden of the effects they have in your life together.

It is important to find out how much support your partner would like to have, and then give her that support if possible. But it is also just as important not to ignore your own problems and feelings. Men often avoid talking about these things because they are worried that it may cause their partner even more distress.

Caring for each other and being honest with each other are key – for both of you. It is important to try to shape your lives in a way that focuses on the positive and fulfilling aspects of your relationship rather than on endometriosis and its consequences.

If you feel like you aren’t coping well with your partner’s endometriosis, or you are no longer able to solve problems together, you can get help from others – for instance, through counseling or a self-help group. You could have counseling or therapy on your own, or together with your partner.

Sources

Denny E, Khan KS. Systematic reviews of qualitative evidence: what are the experiences of women with endometriosis? J Obstet Gynaecol 2006; 26(6): 501-506.

Huntington A, Gilmour JA. A life shaped by pain: women and endometriosis. J Clin Nurs 2005; 14(9): 1124-1132.

Strzempko Butt F, Chesla C. Relational patterns of couples living with chronic pelvic pain from endometriosis. Qual Health Res 2007; 17(5): 571-585.

IQWiG health information is written with the aim of helping people understand the advantages and disadvantages of the main treatment options and health care services.
Because IQWiG is a German institute, some of the information provided here is specific to the German health care system. The suitability of any of the described options in an individual case can be determined by talking to a doctor. informedhealth.org can provide support for talks with doctors and other medical professionals, but cannot replace them. We do not offer individual consultations.
Our information is based on the results of good-quality studies. It is written by a team of health care professionals, scientists and editors, and reviewed by external experts. You can find a detailed description of how our health information is produced and updated in our methods.

How to Ease the Pain

Communicate with your partner. Sexual activity is a deeply personal topic. While you may feel awkward talking about it with your partner, that discomfort is probably less than the pain you’ll continue to feel if you don’t speak up. Talking to your partner about dyspareunia will help them understand your situation better. To make it easier:

  • Set aside time when you and your partner can chat without distractions or interruptions.
  • Explain what endometriosis is. If you need a starter definition, try this: It’s when tissue that normally grows inside my uterus grows outside it. This irritates the organs around it and makes me hurt.
  • If you’re comfortable, tell them how the condition makes you feel physically and emotionally.
  • Only offer as much information as you want to.
  • If you want to, take your partner with you to a doctor’s appointment so they can ask questions and feel included in your support system.

Communicate with your doctor. You may not want to discuss painful sex with your doctor, but you need to. Sexual health is part of your physical and mental well-being, so it’s worth working up the courage. Your doctor may recommend medications to control endometriosis, or she might suggest laparoscopic surgery, which is a common treatment. The surgeon will remove as much of the tissue as possible growing outside of the uterus. Most people who’ve had it say their quality of life improves and sex is less painful.

Think about timing. The pain may get worse around your period. You might try to avoid sex during this time.

Experiment with positions. Some women say any sex position causes pain, while other women find only certain positions hurt. It can help to find one where penetration is shallow or where you have control over the depth, like a side-by-side spoon position with penetration from behind.

Consider other forms of pleasure. Intercourse isn’t the only way to be close to your partner, of course. Try foreplay, oral sex, or mutual masturbation.

Use a lubricant. Some women with endometriosis use a type of hormone therapy to treat their symptoms. But this can lead to vaginal dryness, which also makes sex uncomfortable. A vaginal lubricant can help with that. They work better than petroleum jelly or other products that aren’t specifically designed for vaginal dryness.

Oil-based and natural lubricants can damage latex on condoms and diaphragms.

Despite the prevalence of the condition, endometriosis is little known outside of the community. As a single male, I had never heard of the condition and had received very little education about women’s health in general. But then I met my partner and that changed. Endometriosis is a significant part of our relationship; it informs a lot of decisions we make, factors into our planning, and sometimes dictates how we spend our time together. It is something that I think about every day and, by extension, something I have learned a lot about.

I mentioned the importance of educating yourself about the condition in a previous column so that you can better understand your partner’s struggles and better advocate for them, but it was never something that I intentionally set out to do. There are lots of things that I learned about, was told, or stumbled across accidentally that I would never have thought about had I not met my partner.

Following are some of the things I’ve learned since having a partner with endometriosis. I’m sharing them in the hopes that other people will improve their knowledge of the condition, and in turn, increase its visibility and enable you to become better advocates for the endo community.

Modern medicine is male-centric

For generations, medical research has been unfairly geared toward male physiology due to a combination of cultural factors. Even though this medical gender-gap is closing, it has resulted in some women having negative experiences with medical professionals. Research shows hospital staff take women’s pain less seriously, spend less time treating them, and are more likely to wrongly diagnose physical pain as “just emotional.” This is important to remember when going through the journey to diagnosis with your partner.

That said, we’re so lucky to live somewhere with modern healthcare

Especially in the United Kingdom, where NHS covers medical bills through taxes, we can rest assured that our loved ones will be treated in modern, hygienic settings by highly trained and skilled staff. This is not the case everywhere, and women with the condition in developing countries may have less access to diagnosis and treatment. They often have to deal with the condition on their own.

The scope of the condition is massive

Endometriosis affects an estimated one in 10 women of reproductive age — that’s 176 million women worldwide! After seeing the effects of endo on my partner and how bad a flare-up can be, thinking how many other women I know in my life that this might affect is sobering to think about and important to remember.

Research is conflicting

Scientific research of endometriosis is nowhere near as extensive as it is for conditions of comparable frequency, and what research there is, is conflicting. Some research shows links between dioxins and endo, but other evidence refutes that claim. Some doctors will tell patients that getting pregnant can “cure” endo, but elsewhere you will find that no reliable cure currently exists. Some websites advocate lifestyle changes to manage symptoms, whereas others will point to medicines. All of this confusion makes the journey to effective management of the condition long and confusing. Be prepared to support your partner through changes they make and things they try to better manage their endo.

Symptoms are varied and unique

The symptoms of endometriosis are not only vague and shared with many other conditions, but also there are so many linked to the condition. This makes diagnosis hard and finding appropriate lifestyle changes to manage the condition even harder. Be prepared to try lots of things with your partner, and be patient as they try to find a life that works for them.

But there’s always hope in the community

The endometriosis community is active and inspiring, sharing successes and struggles, and giving tips and advice on how they manage the condition. The lack of research and recognition of the condition is somewhat softened by the strength of the community and the endo patients themselves.

It is going to take more research, more funding, and more time before we understand endometriosis fully, but in the meantime, we can equip ourselves with the knowledge of the community to make facing this condition easier. A wealth of information is out there to discover, and there are so many people going through similar things to connect with. So, immerse yourself in it, and you’ll begin to have a better understanding of the condition and the effect it has on millions of women worldwide.

***

Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

Chris is based in London, where he lives with his partner who has endometriosis. Together they find ways to manage the condition and support each other through its challenges. ×Chris is based in London, where he lives with his partner who has endometriosis. Together they find ways to manage the condition and support each other through its challenges.

5 Things You Can Do to Support a Loved One With Endometriosis

Endometriosis is a challenging disease. Not only is it poorly understood in the medical arena, but most people in general have never even heard of it. Yet it affects one in 10 women worldwide and can take up to 10 years or longer to be properly diagnosed. Symptoms can be debilitating, and women may have to endure multiple surgeries to find relief. The gold standard and best treatment available, surgical excision, is challenging for many women to have access to, due to insurance issues, geography and the sheer lack of skilled and experienced surgeons who are able to perform this meticulous surgery. So what can you do if you have a loved one who is diagnosed with this life-altering disease?

1. Do your research. Endometriosis is a difficult disease to understand. There is a plethora of misinformation out there that is being repeated by women who heard it pandered from their doctors, who are still living in the dark ages of the erroneous information they were taught in medical school. We know a lot more about endometriosis than we used to, but the misinformation is still rampant. You can help by educating yourself about the true facts of the disease. Some of the best, most accurate websites are listed below. I have included my own endo-related blog page, Yellow for Endometriosis, as well for concise information and resources.

  • Yellow for Endometriosis
  • Endometriosis Foundation of America
  • Center for Endometriosis Care
  • Endopaedia

2. Understand her needs. This is a big one that can be divided into several sub-categories.

  • Understand her need for relief. The primary symptom of endometriosis is severe pelvic pain. It is a disease characterized by pain. It is a disease of pain. Get the picture? In many cases, this is a type of pain that can’t be “fought through.” A woman may be affected only during her period or all the time. Pain may be addressed in many different ways, such as heating pads, hot water bottles, hot baths, yoga or over-the-counter pain relievers. But it may come to the point that your loved one needs prescription pain medications. And that’s OK. She is not an addict. She is not selling. She just wants relief, to be a functioning member of society. It may be the only thing that can tie her over until she is able to have proper treatment with surgery.
  • Understand her reluctance to be intimate. If your partner is the one with endometriosis, this is an important one. Another key symptom of endometriosis is dyspareunia, or painful intercourse. This is due to where the endometriosis lesions are located in her body; she may describe deep penetration as feeling like she’s being punched or hit inside. It may be that intercourse is simply far too painful to engage in, so please respect her wishes if she puts the brakes on a romp in the bedroom.
  • Understand her abilities. Since endometriosis can sometimes progress fast and furious, she may go from seemingly all right to bedridden practically overnight. She may need help with daily tasks, such as cooking, cleaning or doing laundry. Never, ever shame her for being “lazy.” Do you honestly think she’d rather be in bed writhing in pain than cooking dinner?

3. Support her decisions. It’s her body, not yours. Only she knows how she feels. If she wants to go with medical (drug) therapy, which will only provide temporary relief and can have permanent side effects, discuss the pros and cons (based on what you’ve learned from your own research, of course!). If she wants surgery (and honestly, she often needs to have surgery to receive an official diagnosis), then be there with her and help her with what she needs while she’s recovering. If she wants a second opinion, support that choice. Many doctors claim to be able to perform excision, but their skills are far less stellar than other surgeons due to experience in the operating room. Do you want a surgeon who’s performed excision 50 times or 2000 times? Excision does not equal excision. You can help her make these decisions by being an active part of her medical care.

4. Understand this is a chronic illness. Technically there is no cure for endometriosis. However, with truly skilled excision, reoccurrence rates are low. But your loved one may have lost something along the way. Depending on how severe her case was, she may have lost several or all of her reproductive organs and now has to deal with the reality of being infertile. Or she may never be truly pain-free due to such things as the formation of scar tissue. Or she may have the evil cousin of endometriosis called adenomyosis, which can be just as painful and debilitating as endometriosis. Just know she’s in this for life and it won’t always be easy, even if her excision surgery goes perfectly and her endometriosis never grows back.

5. Stand with her. Join her if she goes to an event to raise awareness for endometriosis. You will never forget the stories you will hear from other women and their loved ones about their journey, because no two stories are alike. The movement has started to grow over the past several years to the point that those of us affected are demanding better, correct, appropriate care, and people of importance are starting to listen.

Endometriosis is a complex disease with an equally complex forest of medical information (much of which is false) to wander through. It is a hellacious disease to struggle through and those of us affected deserve help, and someday, a cure. You, our loved ones, are on the front lines of those we need to lean on to help us. Will you do that today?

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Getty Images.

Endometriosis: My wife isn’t alone, I suffer with her

123rf I might not be able to fully understand the effects this disease has, but I can make sure my wife doesn’t have to go it alone.

I have lived with endometriosis for the last three years.

But not as one of the hundreds of thousands of women who have been diagnosed with this crippling, life-stopping, soul-sucking affliction; I have lived with it as a boyfriend, fiancé and now, a loving husband.

I don’t, and never can, understand the kind of pain endometriosis causes, but I can see it most days and nights in the drained and weary look on my wife’s otherwise gorgeous face.

I took it upon myself at the very beginning of our relationship to try and understand this illness as much as I could. I educated myself on the triggers, the remedies, and basically anything I could so that I would be able to help and support my wife. I never wanted her to feel like this was a journey she would have to take alone.

* Endometriosis: Why I fought for my diagnosis
* ‘I chose to have a hysterectomy at 23’
* My painful lifelong curse
* Endometriosis: I just want to be a normal 20-year-old

There have been many hours spent in emergency departments holding hands, adjusting beds, making cups of tea and reassuring my wife that everything would be alright. For me, this was hard because every time I would say it, I wouldn’t believe it.

After a few hours of being pumped full of opiates and being assured it is only a flare-up where the only thing they could do was manage the pain, I would scrape up my weary, dazed wife and take her home to rest.

The first surgery I was involved with was the oophorectomy – ovary and tube removal – in February, 2017. The endometrial tissue was so bad it had attached itself to other organs and was causing unpleasant side effects to manifest, but everything else was clear and healthy, according to the surgeon.

Hope sprung and for the next few months there were little to no flare ups, so we started to plan our wedding and began looking forward to our new life together – free from endometriosis. Unfortunately, it was not to be.

In May, 2017, the flare ups started to become more frequent and more intense, requiring stronger pain relief until none of the medications we had been prescribed for self management were at all effective. So, we went back to the familiar staff and confines of Waikato Hospital ED and Short Stay units.

Over the next couple of months we were in and out of hospital until we managed to get in to the Women’s Health Unit to see a gynaecologist. Possible solutions were discussed and proposed but we were only interested in one, a hysterectomy.

Our gynaecologist agreed and it was decided that we would be booked into surgery to have everything removed with the exception of the left ovary. Until the surgery, we were to have monthly injections of Zoladex to stop my wife’s cycle, and while she has a high pain tolerance, I could see by the expressions on her face just how much these hurt.

Between the months of September 2017 and March 2018, we averaged an emergency department admission once every 8.3 days. We were both getting more anxious every day as we waited for word of the surgery.

We were planning to get married in March and I selfishly wondered if we would be able to do as most newlyweds did on their wedding night, or if we could even get through our wedding day without a flying trip to the ED. Thankfully, our wedding was one of the only pain-free days for what seemed like as long as we could remember and we managed to get through it without a hitch (no pun intended).

Due to the endometriosis and other factors, we decided not to take a traditional honeymoon. Instead, we had an amazing long weekend in Melbourne, thanks to comprehensive and expensive travel insurance. The surgery came in April and we finally thought once and for all this is it, it’s over, there is nothing left to cause pain.

But since the operation, we have been back to the ED six times for pain management and are now awaiting our referral to the pain team. We are still uncertain if we can live a full and normal life without the worry, pain, stress and heartache this brings.

I might not be able to fully understand the effects this disease has on a woman, but I can make sure my wife doesn’t have to go it alone and that she knows I am always there for her and always will be.

I have use the word ‘we’ a lot in this story and that is because we are one and whatever she goes through, so do I.

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