About one in 10 women of child-bearing age lives with endometriosis (Endometriosis UK). In addition to the physical symptoms, women can experience increased stress and anxiety as they try to cope with the effects of endometriosis.
Our short guide below explains what it is, how to spot it and how to manage the impact that endometriosis can have on your day-to-day life and work.
What is endometriosis?
Endometriosis is the second most common gynaecological condition (after fibroids) in the UK. It affects women between puberty and menopause. It causes womb tissue (endometrium) to grow in other areas such as the ovaries, fallopian tubes and the bowel. The tissue thickens and bleeds during your period, causing a range of symptoms from inflammation, heavy periods and pelvic pain to a swollen tummy, nausea and diarrhoea.
Endometriosis can also lead to ovarian cysts, problems with your bowel and infertility – as well as sleep problems caused by the strain of the condition on your emotional and physical health. It’s a serious condition and, if left untreated, can be severely debilitating.
Treatment for endometriosis at Benenden Hospital
Consultant Gynaecologist, Miss Ana Zakaryan, talks about endometriosis; what it is and how our self-pay gynaecology treatments can help.
Endometriosis is a condition caused when tissues of the lining of the womb appear anywhere else apart from the lining of the womb, places such as behind the womb, in the tubes, in the ovaries, on the cover of the bowel, on the bladder, and in the muscles between the vagina and the back passage. It mainly affects women of reproductive age. It can be quite a complex condition to diagnose and the incidence of it is one in ten women.
It is difficult to define what causes endometriosis. It is believed to be connected with the lining of the womb (called the endometrium) appearing in places where it shouldn't be. So it can be congenital. So it's likely the woman will have it if her mother or sisters, aunties had it. It can be physiological. The thing is, when we have periods, the blood is not just coming out through down below. It also, via a retrograde route, goes through tubes inside the abdomen and then it can get embedded anywhere inside up behind the womb, on the tubes, on the ovaries. And when it gets embedded, then every next period cycle, it starts producing drops of blood which cause the irritation of the lining of the abdomen, which is responsible for the pain that the condition presents with.
The main problems are associated with the pain, primarily during the period. Very often women describe pain that starts a week or so before the period and it lasts through the period. Pain can be there during intercourse that affects the quality of their personal life. If the condition affects the ovaries, then ovaries can produce so called chocolate cysts, which can by themselves cause a lot of discomfort during ovulation and the period as well. If the lesion is located between the vagina and the back passage, then the pain can be associated with opening bowel motions, opening bowels. And very often these women suffer diarrhoea and even bleeding via the back passage during their periods.
It's very complex to diagnose endometriosis because if there is no involvement of the ovaries or tubes or any additional organ involvement, endometriosis is not picked up by a blood test or an ultrasound test. So, the main diagnostic tool of mild to moderate endometriosis is by doing keyhole surgery, a so-called laparoscopy, just to identify those spots and lesions by direct vision and to be able to stage them as well. If there is an endometriosis related ovarian cyst, then that could be picked up on the scan and they have specific features that enables the sonographer to label them as a possible endometriomas. Rectal lesions between the vagina and the back passage are identified by deeper modalities of investigation such as MRI and these are done before embarking on the surgical options to know exactly where the location is to be able to retrieve them during the surgery.
So the pre-existing main diagnostic tool was keyhole surgery laparoscopy. A recent NICE guideline recommended we consider medical treatment first. So if the symptoms are corrected, there is no further need for laparoscopy to confirm or rule it out. There is no clear evidence of the impact of endometriosis on fertility. If there is an ovarian cyst, and it's bigger in a size that may affect the process of ovulation. And the cyst content can also have a toxic effect on a pregnancy itself as well. So in those cases, it is recommended to have those cysts removed to facilitate better conception and better protection for a period to avoid miscarriages but otherwise not mild, not moderate, not severe, endometriosis is associated with severe. There is a direct correlation between fertility and endometriosis.
However, there was an evidence suggesting that treating mild to moderate endometriosis with diathermy may slightly improve the chances of getting pregnant if symptoms around the period time and taking time off work is becoming a routine, it is advised to consider long term management with contraceptive, especially progesterone containing ones that are aimed to eliminate period as it is. And as I mentioned before, it can cause the scarring of the pre existing lesions to prevent further additions forming and should allow to get on with the life. There is no cure as such for endometriosis. The long term treatment and main treatment to support the condition to allow women to get on with her daily life is considered a contraception.
So it might not be the cure. Exactly. But we believe that if we stop the period from happening, those lesions inside the abdomen do not bleed, that causes scarring of the lesions. They become silent chronic and they should not cause as much pain and discomfort either during sex. And the way to achieve it more is a progesterone containing contraception which can come as a pill as an implant, as an injection or as a Mirena coil. And the Mirena coil has been one of the popular ones because it's soft and it lasts five years.
What causes endometriosis pain?
Luckily, an increased awareness and recognition of this condition, both by healthcare professionals and by patients, means there is more research being done into the causes.
Pregnancy and breastfeeding can cause regression of the disease. Therefore, delaying pregnancies and having fewer children may play a role in disease progression.
Endometriosis can also be genetic, as it often runs in families. It can also be caused by:
- Hormones: oestrogen appears to affect endometriosis (research is ongoing)
- Immune system issues: a faulty immune system may fail to spot and destroy the tissue
- Surgery: C-sections and a hysterectomy can cause endometriosis to be found in scars
There isn’t much you can do to stop endometriosis, but you can help avoid hormonal endometriosis by lowering your level of oestrogen. Oestrogen helps your womb lining to thicken and may increase with the use of contraceptive pills, excess body fat, or alcohol/caffeine intake.
What are the signs of endometriosis?
According to an Endometriosis Inquiry Report (2020), on average it takes eight years from onset of symptoms to get a diagnosis so it’s important to know the common signs and symptoms of endometriosis:
- Irregular, painful or heavy periods
- Pain while having sex, or after having sex
- Fertility problems (difficulties getting pregnant)
- Pain or bleeding while going to the toilet
- Fatigue, tiredness and/or depression
If you have any of these symptoms, they may not necessarily be signs of endometriosis and could be caused by other conditions, but it’s still important to get any ongoing symptoms checked by a health professional.
What are the stages of endometriosis?
Endometriosis has varying degrees of severity and can get worse over time. However, it’s possible to have ‘mild’ endometriosis with a lot of pain, or barely notice ‘severe’ endometriosis.
The stages of endometriosis are based on its location, extent, depth and severity:
- Minimal: small lesions/shallow implants on ovary, inflammation in pelvic cavity
- Mild: shallow implants on ovary and pelvic lining, alongside light lesions
- Moderate: deep implants on ovary and pelvic lining, more lesions present
- Severe: deep implants on ovaries and pelvic lining, lesions have spread
It’s better to be diagnosed in the earlier stages of endometriosis, as treatment is easier.
How can I get an endometriosis diagnosis?
Referral to an endometriosis specialist is recommended if you experience symptoms such as breakthrough period pain despite being on hormonal treatment, or if you develop dyspareunia (pain during sex), dyschezia (pain on opening your bowels during your period) or bleeding from the back passage.
Diagnosis is confirmed by a gynaecological laparoscopy where the Consultant passes a thin telescope through a small cut in the tummy to see if there are any patches of endometriosis tissue in your body.
Ultrasound scans are not always good enough to see endometriosis, unless the ovaries have endometriotic cysts. An MRI scan may be required if there’s indication of more severe disease.
What is endometriosis treatment?
Currently there’s no cure for endometriosis, but there are treatments which can help ease its symptoms such as painkillers, hormone medicines (such as contraception) and surgery.
Surgery in severe endometriosis can be quite complex and hence is best done by specialist surgeons. Following surgery patients need to stay on hormonal treatment to prevent recurrences unless they are trying for pregnancy.
Is endometriosis likely to affect my fertility?
Endometriosis can affect fertility and is one of the major causes of female infertility. There is good evidence that surgical excision of endometriosis in early stages improves fertility. However, in advanced cases the role of surgery in fertility is less clear.
Hysterectomy and removal of ovaries is often considered as the last resort if you’re certain you won’t want any more children.
How can I cope with endometriosis at work?
Endometriosis can manifest itself with a range of symptoms, many of which aren’t immediately obvious, so colleagues may struggle to understand what’s wrong. You may feel embarrassed about taking time off work or feel that you’re a burden on your colleagues.
Be prepared
You should be prepared in case endometriosis affects you during the working day. Keep a heated pad in your bag or desk to place on your stomach and ease cramps and have painkillers on hand.
If your endometriosis affects your energy levels, or you’re more prone to symptoms at certain times of the day, try to plan your workload. For example, if your job involves long periods of standing and this leaves you with chronic fatigue by the afternoon, could you share admin tasks with a colleague? You may want to talk to your Occupational Health department to help with planning.
Take frequent breaks
It’s important to take regular breaks at work, especially if you’re experiencing chronic pain. If you’re able to, take a walk at lunchtime or find a quiet spot to relax.
Eat well and stay hydrated
It’s always tempting when you feel unwell to reach for the sugary snacks, but – if you can – try to avoid them and replace them with healthy foods such as nuts or fruit. Some experts suggest that cutting out wheat and dairy may help to improve the symptoms of endometriosis.
Don’t be afraid to ask your employer for help
It can be difficult to ask for support from your manager or colleagues. It may not be possible to take time out at work or sit down for long periods of time – especially if your job requires you to be on your feet.
Endometriosis UK has published a guide to the law and best practice for employers in supporting employees with endometriosis. This includes their duty to make reasonable adjustments, Statutory Sick Pay (if you’re not entitled to company sick pay) and flexible working.
Some employers have signed up to be Endometriosis Friendly Employers, so it’s worth asking whether your company is part of this initiative.
Speak to our experts
If you’re worried about the signs of endometriosis or if endometriosis is affecting your life or work, help is available from our expert team. We offer a range of private gynaecology treatments in a discreet environment. Contact our Private Patient team via Livechat, by completing our online enquiry form or by calling 01580 363158.
Published on 02 March 2024