What impact does endometriosis have on relationships?

Originally Published by 1News: 29th March 2024

As Endometriosis Awareness Month draws to an end, the pain and discomfort for many individuals who have the condition doesn’t stop.

One in 10 women have the inflammatory disease that causes painful cramps and periods, bloating, pelvic pain, pain with intimacy, and infertility.

These are just some of the physical issues that arise with endometriosis. However, a study conducted by Otago University earlier this year shows that the often painful condition also affects the brain.

“We know from pain science that pain very much affects the brain,” clinical psychologist Leena St Martin told 1News.

“It depends what the nature of the symptoms are, because we can’t assume that everyone has pain.

“I think that’s one of the first myths about endometriosis.”

St Martin explained that endometriosis can also affect an individual’s way of regulating many aspects of their nervous system and bodily functions such as pain control which can have effects on the brain.

It may also have psychological effects due to other symptoms such as infertility, mood changes, or having continuous symptom of bloating and fatigue.

“Everyone is different regarding to [what] kind of primary symptoms they have.”

The often-forgotten side of this disease is the impact it may have on any relationships – romantic or platonic – the individual may have.

“The general literature of pain is fairly conclusive that depression and anxiety go hand in hand with any kind of chronic health condition.”

St Martin said this can lead to emotional fatigue.

An emotional few months

Summa and Sammy on holiday in Rarotonga.
Summa and Sammy on holiday in Rarotonga.

For Summa Stewart and her partner Sammy Gilchrist, it has been a emotional few months after her diagnosis.

Stewart was diagnosed with endometriosis a few months ago. She has since gotten a full diagnosis through laparoscopic surgery earlier this month.

Stewart said the diagnosis was a little shocking as growing up she had no symptoms of endometriosis.

“There is no family history, but out of the blue [I] started getting really bad pains,” she told 1News.

She said she visited Family Planning, who told her it “was all in my head and I couldn’t handle my monthly cycles”.

After multiple visits and ongoing issues with her periods, Stewart was referred by Family Planning to a specialist.

The specialist told her she had symptoms of endometriosis and, after several appointments, she was booked in for surgery.

“It was a really fast process, which I’m really grateful for.”

That’s not the only thing Stewart is grateful for – having her partner that she can rely on “emotionally” has been a massive help.

“Our relationship lets us open up emotionally and not hide [our] feelings.”

An endometriosis diagnosis can also be overwhelming for their partners, especially when they see their significant other in pain.

“That was the hardest part of this whole thing because I can’t do anything,” Gilchrist said.

“You feel helpless watching your partner in like excruciating pain.

“Only thing I can recommend is paracetamol and Nurofen – you [start to] sound like the mama.”

Couples supporting each other.
Couples supporting each other. (Source: istock.com)

The couple expressed that while communication is key for all relationships, it’s particularly important for those living with the disease.

“I’m grateful for the type of relationship that we have; we can talk about things a lot more openly,” Gilchrist said.

He added while some couples who place more importance on physical intimacy would find it “extremely difficult”, their relationship is “very different than a normal relationship”.

They both expressed that it’s not about the physical intimacy but deeper connections that make their relationship so special.

Gilchrist stressed that partners should be considerate and show their support, rather than making it about them.

“I had to be very careful not to do that, and I didn’t and we’ve had no problems, but I can see how it could be an issue for some people.”

Many people may find this condition a deal-breaker, due to social stigmas and some limitations it may cause.

“The negatives are probably fairly obvious, and that is a partner’s intolerance of social difference that comes from condition like this,” St Martin said.

However, many partners may find no problem in being in a relationship with a person who has endometriosis.

“I’ve seen lots of partners who are amazing supporters and have really done an amazing job of the ripping themselves with information and skills to be really helpful.”

Stewart and Gilchrist said it has “brought them closer” as they learned more about the condition and how to equip themselves with the communication skills needed for their relationship.

Advice for couples

Stewart’s advice for women with the condition is that you need to be “gentle to yourself”.

“I know it’s annoying and it’s such a pain, but just go with the flow, don’t force yourself.”

Stewart found social media platforms and communities for people living with endometriosis have helped on her healing journey.

“[If] I was experiencing something I could just write it in the group.

“You don’t feel so alone.”

The couple said “community is a really powerful tool” to help navigate the overwhelming information about the condition.

As for Gilchrist, he wanted partners to know “you don’t have to fix everything”.

“Just sometimes you need to listen and hold your partner.”

Advice for friends

Friends gathering together
Friends gathering together (Source: istock.com)

It’s no surprise that endometriosis affects other relationships outside of romance – it also has a major effect on the person’s social life.

St Martin said among the difficulties are being “unable to commit to dates, to social group activities, to outings where there might not be a safe place or safe person present”.

Many may fear that their endometriosis will flare up or be caught in a situation where there are triggers such as topics of sexual life, fertility, or finding suitable partners.

St Martin expressed that there are “a lot of different impacts socially” that may cause someone anxiety.

For Stewart, she found that some of her friends didn’t quite understand her condition.

“She couldn’t understand, you know? She wants to come over and I was really not feeling it.”

“If I couldn’t do something she was like ‘oh, that’s right. You’ve got endo’.

“It was very difficult because you know she’d make me feel bad for not going out.”

Stewart said while it impacted her friendship and made her feel rather lonely rather than supported, the relationship with her mother grew.

“She’s been there every step of the way with the surgery.”

For many with the condition they just want to be heard and supported.

Expert advice

Health Professionals look for Endometriosis
Health Professionals look for Endometriosis (Source: istock.com)

Endometriosis New Zealand is a charity providing support and resources for people living with endometriosis.

They provide free appointments through EndoHelp, as well as a safe space to discuss their concerns and receive information, advice, and practical support.

CEO Tanya Cooke said endometriosis “can have a significant impact on a person’s relationships due to the unpredictable nature of symptoms and challenges in understanding this invisible condition”.

But while it can be “challenging to manage”, she said, “supporting someone with endometriosis doesn’t need to be challenging”.

Cooke said there are “a number of key things you can do to help”.

“Validate their experience, build trust to help them communicate their needs, and walk alongside them in their journey.”

St Martin said for people seeking advice on how to navigate a relationship with someone with endometriosis, start a conversation.

“I’m aware that you’ve got the diagnosis. I really don’t know much about it. Would it be alright if I ask you questions about it? Or, you know, ‘when you’re feeling in the right space for conversation’.”

This isn’t just a challenging conversation for a partner to have but also the individual going through it.

These conditions may cause extra stress and anxiety, but being opening and ‘disclosing’ your condition to those closest to you will help leave room for growth within your relationships.

Endometriosis support networks

Endometriosis New Zealand – Book a free 30-minute appointment for help and advice through EndoHelp

A safe online space can be found through the Endometriosis New Zealand Facebook group.

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