It has a massive effect on the people around you and must be very wearing for your partner because life is not normal for them either, because you can’t do things, you can’t make plans, you can’t just go out to restaurants when you want to, because you’re in pain. – Madison
Depending on how endometriosis affects you, it can have a significant ‘ripple effect’ on those around you – not just to partners or immediate family members but also to friends and colleagues. That can be challenging – you may not be comfortable talking about it with others, or indeed they may too feel discomfort as you talk to them about what is a very personal and hidden disease.
But women’s networks – particularly your intimate relationships, family and close friends – can be an essential part of how you manage your disease and after all, it will impact on their lives too; they’re in this together with you. How does that impact relationships and what can be done, both to help partners and loved ones understand, and to enable them to help you too?
‘It’s very different from being in a relationship and finding out you’ve got endo, to having endo and trying to find a relationship. I suppose it’s like that with any illness, really,’ Scarlett tells us. New partners and what to tell them can be a source of great anxiety for women with endometriosis. So, you’re wondering what to tell someone you are dating, and at what point do you tell them?
Well, it very much depends on you – if endometriosis is having a big impact on your life at that point in time, it might be hard not to tell them. But sharing this information with them can also give them the opportunity to support you, as Sophie found: ‘I was just in a new relationship at the time I got diagnosed, which was really difficult, having conversations about whether I may or may not be fertile at that time. Luckily, I had a supportive partner and I continue to have that supportive partner, who has been a massive support. I don’t think I would have survived it all without him. He is my rock. He goes out of his way to make sure I am okay.’
Partners can be really caring and supportive towards women, so taking the step to talk to new partners about it is important, but not easy. ‘I think it is hard,’ Nicole tells us. ‘At what point do you say when you’re dating, this is what I’ve got, this is what it means? I don’t know the prognosis, the long-term prognosis, because it’s an unpredictable disease, I don’t know what it will mean for us. ‘But he stood by me and he’s been lovely,’ Nicole says of the boyfriend who later became her husband.
However, every relationship is different. Just as it can be hard for a woman to adjust her lifestyle around illness, or to change expectations as a result of symptoms, so it can be hard for partners to adapt, and, unfortunately, endometriosis can place a strain on relationships, as Poppy found out. ‘He told me that he was leaving me because of my ill-health, because he could no longer cope with worrying about me every single day, and that he was no longer taking care of himself. He had seen me going from being such an independent, outgoing person to having no motivation, no interest in anything.’
Sometimes women find that they need time being single, as Lucy explains: ‘I was just so battered by this that I couldn’t do it, so I split up with my then boyfriend, because it wasn’t fair on him. I had to be single to realise what I was feeling and to try to soften myself, rediscover what I did and didn’t like doing, to adjust to this new person that I’d become.’
Fortunately, many partners are able to adjust around the changes endometriosis can make to the lives of women and themselves. This can take time and mean that they too need support and understanding from others around them, such as family and friends.
Some women reported that their partners made special efforts to support them when they weren’t well, as Saskia’s partner does: ‘I’ve got my partner who I’ve been with for 13 years now; we’ve been together a really long time. She’s been with me all through the diagnosis and when my endo was at its worst and she’s just amazing. She’ll bring me things in bed when I can’t get up and she’ll make sure we’ve got food in the house and the housework is done if I can’t pull my weight. She is there to help out and just is somebody who understands.’
As well as being supportive and understanding during and after any treatment, another way partners can help is to go along to appointments. Lucy found that her current long-term boyfriend was particularly empathetic because he also has health problems. ‘I’m lucky that my boyfriend has a medical condition as well, so he understands when you go to the consultant.’ He knows what to do to help her during flare-ups or after surgery: ‘After surgery, he’ll happily look after me. For example, he brought me strawberries and cream and sat me in front of Wimbledon, so that was nice. It’s just simple things like that that actually make a lot of difference.’
Some partners help out with lifestyle adjustments, such as supporting their partners through making changes to diet or exercise regimes that they may find helpful, as Daisy’s husband does: ‘He’s very lovely about saying, well, if you need to, join the gym, or do this, just go and do it. He’s always been there for me because we’ve been together forever, so he knows exactly how I feel without me having to say anything, so that’s good.’
Whilst women sometimes identified that their relationships had suffered – or perhaps even ended – partly as a consequence of their endometriosis, others noted that they had grown closer.
I think endo has meant our relationship is stronger. My husband is amazing … he does so much for me and expects nothing in return. We’re just a very good fit … we work despite the endo because he has made time to go to the Endometriosis UK information days, to come to appointments, to understand, he’s seen what physically happens to me, how many hours I spend in the bathroom. He absolutely 100 per cent believes me …
We talk about the future a lot, there are a lot more conversations that have to happen when you are chronically ill, a lot more planning, a lot more closeness to make it work well. I also don’t see why it shouldn’t bring you closer, you go through something bad, emotional and testing together and come out the other side, there’s something bond–strengthening in that. – Beth
Sometimes seeking professional guidance and support for both of you may be helpful. Wendy-Rae Mitchell talks about her role as a clinical nurse specialist, supporting women with endometriosis and their partners. Here she tells us about her work with one couple prior to surgery:
I spent about 45 minutes talking to her and then we talked about where we’re going to go from here with the pathway. I said, ‘Would you feel this is the right time to bring your partner in?’ And she said, ‘Yes, that’s fine.’
I brought him in and he sat down and I said to him, ‘Thank you for coming in, we’ve had an opportunity to have a good talk about how your partner’s feeling about her surgery, but I am just wondering how you are, how do you feel about this?’ And he looked at me in utter amazement and he said, ‘No one has ever asked me that before.’ And I said, ‘Well, I’m asking you now, because this is your time.’
I could hear the emotion in his voice and he was able to talk about his frustrations about not being able to do anything practical to help when she is in pain, the fertility problems … the guilt and shame he has about them not being able to have a child. It’s not all about her, but how he feels. So there’s lots of emotions, it’s not just the one person … it affects the whole of the family.’
When healthcare professionals have the opportunity to involve partners in discussions about treatment, it can be enormously beneficial for both the woman and the partner.
What happens to relationships when endometriosis impacts upon a woman’s ability to work? We’ll be looking at work in more detail in Chapter 7, Adjusting life. Some women described how supportive their partner had been from a financial standpoint. Amy tells us: ‘After my second surgery, I had about five months off work. It was like I was having a breakdown, ten years of being really sick just caught up with me. I needed to take time out and he just took all that financial pressure on himself and never once complained or showed it, and he’s always super supportive and lovely.’
Hints and tips on what to say to partners about endometriosis
It feels like you ought not to be having intercourse, although you do, so you have it in your mind that actually the pain wants you to stop, but you still want to be having the intercourse. It’s a really stressful thing to go through. Luckily I’ve got a really supportive partner and it’s never been an issue. – Sophie
One aspect of endometriosis that can affect women is that some parts of sex, such as penetrative sex or orgasms, may be painful. This isn’t a symptom that affects every woman but it can be very distressing, both for women and for partners. Some women unfortunately describe severe pain with sexual intercourse and some women stop having sex for a period of time. Before surgery for deep bowel disease, Madison says, ‘It was really unbearable, it just completely put me off even wanting to go there because I couldn’t bear it, there was nothing enjoyable about making love at all, it was just unpleasant and I was scared to do it because I didn’t want to hurt.’ After her bowel resection, Madison was able to have sex without pain.
Other women explored trying different positions to see if they were less painful. Sophie says, ‘I’ve found certain positions to be more comfortable, at certain times I’ve had to completely say no, but we have a good routine checking that we are both okay during and after sex.’
Communication with your partner at all times is essential. ‘Perhaps the hardest thing for a partner to realise is that it’s not about them,’ says Lucy. ‘When sex is painful then no, you don’t want to have sex. It’s nothing personal, and there’s no magic pill that’ll take it away. It’s simply the way that we feel. The feeling of rejection is really hard for a partner to take, and I have no advice what to do. Apart from keep talking, and find other things that you enjoy doing together.’
Some women found it hard to discuss painful sex with their doctors, as it can be an embarrassing topic to raise. However, doctors are used to discussing intimate and personal issues every day in their work, so it can be helpful to know it’s normal for them to deal with sexual problems.
Not all the women we spoke to were in relationships, but some had noted how the physical symptoms of endometriosis had meant that they weren’t ready to deal with a relationship. Scarlett tells us: ‘It wasn’t that I didn’t ever want a relationship, because it’s something I wanted more than anything, but I think because I was always so down from the pain and the depression, it took all of my energy. I didn’t ever really want to prioritise it, I just didn’t have the energy for it.’
Being ready for a relationship, having the energy to date and meet new people can be challenging, but the symptoms – and notably the difficulties associated with painful sex – can also affect a woman’s confidence.
I think it’s had a massive impact on my confidence in terms of meeting someone, and although I’ve been in serious relationships, long-term relationships, there’s no doubt in my mind that endo has undermined my confidence in myself as a woman, as an attractive sexual woman deserving of a healthy, normal relationship, a loving relationship. – Zoe
We all deserve to have people who love us and support us. Sometimes it may be helpful to seek professional support from doctors, or for women to look at other ways to find support or practice self-compassion, like those described in Chapters 6 and 7. Some women found that a period of time being single gave them the time and space to work out what they needed next, as Poppy describes. ‘It’s nice to share things with someone but it’s also nice to do it myself and to know that I have the capabilities to do it.’
Whatever stage a woman is at in terms of relationships, it’s important to know who is there to support you. So let’s take a look now at other people who may be in your own support network.
I’m really very lucky to have the friends that I have. I know exactly who would run towards me when others would be running away, that’s one positive that’s come out of having endo. – Lucy, talking about her friends
Whoever it is that women can turn to – and that might be anyone, from a close family member, to old friends, new friends, neighbours or colleagues – there is someone there who will understand, perhaps not all you are going through, but at least some part of it. Having an understanding person with you during good and bad times both deepens and strengthens many relationships.
Who is in your personal support network? It’s important to know who you can turn to – perhaps your close friend is great at listening when you’re feeling low, or your parents help by bringing you a meal when you aren’t well enough to cook, or your brother is good at phoning you when he knows you’re going through a tough patch? Whoever it is and whatever they do, these people are your incredible support network, and they are invaluable. Let’s hear from women about who their supporters are and what they do to help them.
I have a friend. I’ve known him for quite a long time but recently, over the last year or so we’ve been chatting because he suffers with anxiety and depression and he really helps me, he can tell from my text messages if I’m having a really bad time, so he’ll try and distract me. – Olivia
Olivia’s friend not only identifies with her challenges, because he faces his own health problems, but also he knows her well enough to know when she needs support, which is excellent. Lucy talks about her mum: ‘We went for a birthday meal once when I was really bad and I was just lying in the back of the car with a hot water bottle and she was saying, just see how you go, we can always go home. Mum is really patient.’
When you’re having a bad day, just having someone to acknowledge that and be kind and thoughtful goes a long way. Being able to be honest with loved ones also gives them the opportunity to understand exactly how it is for you. It’s not always easy to be honest with people, but it can be hard for others to gauge how you are really feeling. Zoe explains: ‘I think, the more open I’ve been able to be, the more they’ve understood. They know that this is part of me, who I am and how I am, and that it’s very up and down and that there might be times when I can’t make such an occasion or I’m not up to it. And they understand and that helps.’
This takes away some of the isolation felt with symptoms that are not immediately visible to the eye and means that others are not only able to offer help, but also can understand when arrangements have to change at a moment’s notice, which can be frustrating for all involved.
One of the aspects women found hard with some friends or family was that there isn’t always a ‘quick fix’ – long-term health issues can be very hard for others to understand, if they have neither had them themselves, nor already been close to someone else with them. Saskia has found that some people do lose patience: ‘I think some people lose patience with you, they’re all sympathy for a certain amount of time and then it gets to the point where they’re like “Oh, are you not better yet? It’s been going on for a long time.” Or, if it’s on your mind a lot, because it’s a constant day-to-day thing so you talk about it a lot – and if you are constantly talking about how rubbish you feel then people don’t necessarily really want to hear that. People get tired of what you’re going through.’
Not everyone will ‘get it’ – and it’s important to acknowledge that. It doesn’t necessarily mean that they’re not supportive, it may just mean that they don’t understand it. It was really encouraging to hear that many family members and friends made great efforts to understand, if perhaps they didn’t really know what it meant to start with. But then, often women themselves didn’t understand it to start with, including Scarlett: ‘I felt like I could never really have an honest conversation with my family about my situation, because I didn’t really understand it myself. When I understood it, they understood it – then you can open up to people around you. I feel that really can take the burden off you.’
Some women found they were more isolated in certain situations. For example, Beth found that, at university, a lot of students were simply unaware of chronic health problems like endometriosis. ‘They’d seen, perhaps, their grandparents being ill but a 78-year-old person being ill is very different to a chronic illness in your twenties. It’s not expected at this age – you’re meant to be invincible. I think I was really shocked at how unsympathetic some people were. I think I learnt, though, that the friends that I do have now are good friends, that I will have for life.’
Overall, it can often be the small things that people do that help. Women mentioned so many things that their supporters do – family, friends, neighbours and colleagues – if you’re supporting a woman with endometriosis, or you are a woman with endometriosis who is struggling to ask for help, here are some of the things women found helpful:
I think I’ve been very lucky that my mum’s been so supportive and calm and understanding and has equipped herself with information, done the research and has been there throughout this. – Zoe
I went (to my appointment) with my mum, my dad and my husband, and as I went in to see the consultant I said, ‘I’m really sorry, is it okay if I bring in my mum, my dad and husband?’ And I can always remember him saying: ‘Bring in as many people as you want, because the more people you have to support you through this, the better.’ – Olivia
My brother, he’s a man of very few words but when I was ill, he was an absolute rock, he would just come and tell me silly things. He doesn’t want to know any of the details at all but he is usually the one who says to me ‘Oh don’t be ridiculous, you can’t do that as well as that, you’re doing too much.’ He’s just very calm and he’s really good. – Daisy
I went to see my dad and I got quite upset. My dad said, look, we will take it together, we’ll work at it just like we’ve always worked at it, that’s the important part. My mum used to come round and clean my flat for me, my sister used to come and clean my flat for me … they used to come and clean, I’d be lying in bed and my sister would be cleaning my bathroom, they’d be saying ‘Right, Poppy, do you want to come up for dinner? If you don’t want to come up for dinner, I’ll bring dinner down to you so you don’t have to stand and cook.’ Or my mum would be saying, ‘Do you want to come to the shopping centre, we’ll go and have a drink.’ Just to get me out of the house. I think it’s those little things that they do, as well as being there for support. It’s just a level of understanding that they have as well and they’ve never doubted me. I think that’s huge. – Poppy
Some people at work just don’t get it, they think ‘Oh she’s working from home again, why what’s wrong with her?’ You get that anywhere, don’t you really? No matter what condition you’ve got. – Nicole
If trying to explain the impact of endometriosis to friends and family is hard, trying to get colleagues to understand may be even harder. What can you do about this? Well, firstly it’s important to work out how much you want to, or can, tell colleagues. This depends almost entirely on your relationship with them. We have heard from women who have very understanding bosses, like Nicole: ‘My boss is really good and he’s a bloke so, he was a bit like “Oh dear, what’s this?” And then he came back the following day and said, “My wife’s friend’s got it” so I think it helps that you have an understanding boss, because some days I can come in and say “actually, I’ve had enough today, can I go home?”’
Establishing a rapport with your boss where you can discuss endometriosis and explain symptoms that people cannot see is not always easy. Equally, it can be hard for other colleagues to understand. For many women, they’re likely to have a mixture of colleagues, some of whom ‘get it’ and some who remain unaware. Sophie has found this in her work: ‘Some colleagues have been really supportive, some haven’t really wanted to know about it, others want to know more.’ So gauging who you can talk to at work and what you’re comfortable saying to them is essential.
Madison worked in a team with people who would come and look after her when she wasn’t well and needed help. ‘They were quite supportive and they knew that if I said that I wasn’t feeling well and I was going to the toilet – because quite often the pain would come on so severely that I would tell them, ‘I don’t feel very well, can you just come and check in the toilet?’ because I pass out. I worked with a close team and actually everyone knew what was happening and people were quite supportive.’
Colleagues can be a tremendous source of support when you’re not well, so spending time explaining endometriosis to interested people at work can be very useful. We’ll look in more detail at how to manage work itself in Chapter 7, Adjusting Life.