Endometriosis is a condition that develops when tissue that normally lines the uterus grows outside of the uterus. This extra tissue can be found on the ovaries, fallopian tubes or the intestines.
The Emotional Impact Of Endometriosis
Being diagnosed with endometriosis and dealing with it can have a big effect on your emotional well-being. From your reaction to a diagnosis and then learning to live with endometriosis, feelings of sadness, depression, anxiety and changes to your body image can all have a significant impact.
When you discover you have endometriosis, you may experience a range of feelings, and often the feelings are similar to the grief reaction. Shock, disbelief, anger, frustration, sadness, numbness, fear, anxiety, acceptance and determination may be experienced – not in any specific order, and not by everyone.
It can sometimes take up to 10 years to get a confirmed diagnosis of endometriosis because the symptoms can differ for each person and change over time. That’s a long time to be tolerant with suffering and not know why, or to not have access to correct treatments. The length of time it takes to be diagnosed will contribute to how you feel.
Some experience a sense of empowerment and relief when they understand the condition. On the other hand, the experience, the circumstances and any fertility problems may mean you could also experience depression and anxiety.
Depression is more than feeling sad. It involves more constant and intense negative thoughts and feelings. It can mean changes to your eating and sleeping patterns, trouble with concentration, feeling tired all the time, losing confidence and losing interest in the things you used to love to do. Depression can also occur as an effect from hormonal treatments and costs.
Anxiety is feelings and thoughts of fear and worry. The physical symptoms might include a racing heart, rapid breathing and sweating; psychological symptoms can involve worry, over-thinking, and avoiding situations. Anxiety can lead to a loss of confidence that makes decision-making difficult, and can lead to withdrawal and avoidance of people and places.
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Endometriosis and Stress
Stress happens when we feel threatened and when we feel things are beyond our control. Stress sometimes can provide us with motivation to act, however, too much stress, particularly over a long period of time can cause us to override and burn out which takes a toll on our health and sense of well-being.
There are various levels of stress, ranging from mild to severe, causing physical symptoms such as nausea, diarrhoea, overeating, and under-eating.
Coming to terms with lifestyle restrictions, pain and other symptoms of endometriosis can be distressing because of it’s sporadic nature. It can be especially stressful and frustrating prior to diagnosis, as many women are misdiagnosed, or are simply told their period pain is ‘normal’ or it will get better as they age. Finding a doctor that listens and understands can make a huge difference.
Endometriosis and Body Image
Body image is how we think and feel about our body. Your body shape, as well as your body image, evolves from childhood to adolescence and into adulthood. For people with endometriosis, negative body image can be a problem, as physical symptoms such as pain, fatigue, bloating, painful sex, irregular periods and bladder/bowel problems can affect the way you feel about your body.
Some endometriosis sufferers may believe their bodies have failed them in some way.
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Endometriosis and Relationships
Relationships with others, including lovers, family, and friends, are most likely to impact physical and emotional well-being. Relationships play a big support role when you have endometriosis. Learning how to talk with family and friends and explain endometriosis, along with the impact and side-effects can allow for more understanding of endometriosis on your life and sex life.
Talking about endometriosis
Sometimes it can feel easier not to talk about endometriosis with people close to you. Maybe you don’t want to burden them with your health problems, or perhaps you feel they won’t understand. However, if people around you better understand your circumstances and what you’re going through, having the support will make a positive difference to you and your relationships.
It can be tough to explain endometriosis and how it affects you, and the decision to notify people close to you is a highly personal one. Think about how you’ll describe endometriosis and its effects, as well as whether you think the person will understand and sympathise with your circumstances.
- Firstly, choose a time that is suitable for all parties to be able to give unwavering focus and attention, free from distractions.
- Begin by explaining the basic physical changes and effects of endometriosis.
- It may be a good idea to offer physical or digital resources for parties to read in their own time, rather than overwhelm them with too much information at once.
- Explain your individual experience of endometriosis and how it affects you physically and emotionally.
- You can choose to go into as much or as little detail as you and they feel comfortable with.
Depending on the nature of your relationship with the person you’re speaking with and their personality, they may require different levels of information and respond in different ways. They may be sad that you are suffering, and they may not realise the severity of the problem at first, or they might even be uncomfortable hearing about it. Or they might already know someone who has endometriosis and understand more of your journey than you expected.
Talking with your partner
Talking about your endometriosis with a partner can be equally as challenging, but once done it’s a huge relief to have someone close to you understand and support you along the way. Or they might already know someone who has endometriosis and understand more of your journey than you expected. When you’re in pain, let your spouse know how they can help and support you.
While not every couple will find it easy, one study of male partners of women with endometriosis found going through the experience brought them closer as a couple. It is important to try to include your partner in your experiences of endometriosis as much as possible, as this will help you to feel more supported and reduce the chances of your partner feeling excluded.
It’s common for people to experience a decreased libido when suffering with chronic pain and other physical effects of an illness and reluctance to engage in sexual intimacy can happen on both sides. Partners can feel fearful of hurting their partner or be worried that raising the desire of sex could be upsetting.
Rather than ignoring the issue, it’s healthier for your relationship and future sexual experiences to talk about the physiological and emotional changes that endometriosis causes, as well as your expectations of each other. If required, seek the advice of a psychologist or a relationship counsellor.
When endometriosis affects the tissue behind the uterus at the top of the vagina, painful sex (also known as dyspareunia) is typical. It’s also possible that the pelvic muscles are affected, which might aggravate pain.
If this is the case, simple treatments like physiotherapy to increase muscle function and reduce pain during intercourse may be possible. Pain during sex can affect sex drive as well as sexual expression as an individual and as a couple.
If you are experiencing pain during sex, speak to your doctor or gynaecologist about possible treatments.
Dr Robert Atkins has recommended taking L-Glutamine if you suffer from endometriosis because L-Glutamine is involved in many metabolic processes, including the synthesis and protection of muscle tissue, the production of glycogen, as well as immune support during periods of immune and muscular stress. L-Glutamine is also a major source of fuel for enterocytes (intestinal cells) and hence supports the integrity of the intestinal lining.
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Libido, often known as ‘sex drive,’ differs from woman to woman and is influenced by a variety of circumstances. Sexual desire varies depending on your health, stress levels, mood, and relationship satisfaction, as well as other factors in your life. You may have a high level of sexual desire or a low level of desire; neither level is right or wrong as sexual desire is a individual thing.
A variety of additional factors come into play for women with endometriosis. Between chronic pain, painful sex, taking medication and hormonal therapies, undergoing surgery and dealing with a variety of emotional issues, it is little wonder that sexual desire is affected.
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Best sexual position for endometriosis
Some positions put less pressure on areas of the pelvis that contain endometrial tissue. A person should experiment with their spouse to find the positions that are most comfortable for them.
Many people, feel that certain positions are better than others. When someone with endometriosis is on top, for example, they can control the depth and speed of penetration, allowing them to choose a comfortable pace.
Shallow penetration is said to be most comfortable Some of these positions include:
- Face to Face
- Laying on the back with hips raised and supported by a pillow
- Modified doggy style
Missionary is often painful for those with endometriosis and at times anytime of penetrative sex can cause pain, especially if they’re experiencing a flare up. In this case you may prefer to engage in other types of sexual activity including;
- Oral / mutual oral
- Various foreplay
- Toys and or vibrational stimulation
Anyone experiencing pain during sex should talk to their doctor to determine a pain management plan.
Below are some additional steps a person with endometriosis can take to reduce pain during sex:
- Having penetrative intercourse at certain times of the month. It may be less painful in the week after ovulation, or in the 2 weeks following a period.
- Extending foreplay to increase the amount of natural lubrication before penetration.
- Practicing gentle and slow penetration.
- Use plenty of lubricant during sex.
- Communicating with a partner about what does and does not feel good.
- Having a warm bath or taking a painkiller to ease symptoms before sex.
- Trying different positions.
- Trying different positions.
- Attending counselling or sex therapy
- Learning Tantra from a qualified practitioner
Professional help in Australia
Talking with your healthcare provider can be a good place to start. Your doctor may refer you to a psychologist or counsellor. Ask your doctor if they can find you a psychologist with an interest in endometriosis, or visit www.psychology.org.au and look up the referral section of the Australian Psychological Society. There is now a Medicare rebate available for psychologists and allied health professionals for a specified number of sessions. Your doctor (GP) must write the referral for you to obtain a rebate.
Endometriosis support groups give you the chance to talk to other women who are experiencing the same ups and downs as you. If there aren’t any support groups in your area, consider joining an online group, or even starting a group of your own. Visit Endometriosis Australia to find a support group near you.
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When partners are able to foster an environment of understanding and communication about forms of sex that are pleasurable and free of pain, love flourishes!