Despite the fact that around 1.5 million women in the UK live with endometriosis, many women are forced to struggle through crippling pain on a monthly basis.
A 2018 study by Manchester Metropolitan University found that women are being routinely failed by the NHS because their descriptions of symptoms are routinely dismissed as being a normal part of the menstrual process. It currently takes an average of seven years to be diagnosed with endometriosis.
Endometriosis is where cells like the ones in the lining of the womb are found elsewhere in the body. Each month, these cells react in the same way to those in the womb – building up and then breaking down and bleeding. When that happens in the womb, cells leave the body as a period…but when this tissue appears elsewhere, there’s no way for it to escape. That can lead to infertility (it’s estimated that up to 50% of infertile women has the condition), fatigue, bowel and bladder problems, as well as really heavy, painful periods. The cause of endometriosis is unknown and there is no definite cure.
Our clinic, co-hosted alongside Wellbeing of Women, was led by consultant obstetrician and gynaecologist Karolina Afors. Below are some of the best questions and answers from the clinic:
I go through one thick, large towel every hour for the first four days of my period. Is there anything I can do to reduce/slow the bleeding down?
Unfortunately, heavy periods are quite common and can really impact on daily living and affect our quality of life. Heavy periods can occur for a variety of reasons.
Your bleeding may be due to non-cancerous abnormal tissue within the uterus. The most common of these are polyps which are small little growths of the lining of the uterus. Fibroids found within the lining of the womb can also cause these symptoms. Or you may have adenomyosis (which often co-exists with endometriosis in up to 50% of cases). That’s where uterine lining tissue grows into the muscular wall of the uterus – leading to heavy and painful periods. Any of these can disrupt the normal cyclical pattern of your periods.
A pelvic ultrasound scan can help determine the cause of bleeding and can detect fibroids, polyps and adenomyosis. Fibroids and polyps can be treated by removing them using a small camera (called a hysteroscope) that passes through the cervix, allowing the lining to the womb to be assessed and a polyp or fibroid removed. In some instances, a myomectomy (surgical removal of fibroids) may be indicated.
Non-hormonal treatment such as tranexamic acid taken during the first four days of your periods can help reduce the bleeding. Alternatively, oral contraceptives such as the combined or progesterone-only pill can help reestablish predictable bleeding patterns and decrease menstrual flow. Hormonal intrauterine devices such as the Mirena coil have also proven to be particularly effective in reducing menstrual blood flow and can also help reduce any associated pain. The most common side effect is normally irregular bleeding or spotting, which normally improves after the first few months.
I’ve had both ovaries removed but after 25 years of HRT, and am still experiencing excruciating lower abdomen pain. Surely it cannot be back again?
Endometriosis in postmenopausal women is uncommon, and as a result, poorly understood. It’s important to arrange further investigations to determine the cause of your pain. You may need to have an abdominal and pelvic ultrasound, MRI imaging and blood tests to assess bowel and bladder function. Depending on the results, you may be referred to meet with other specialises such as the gastroenterology or colorectal team.
From what you have described, it sounds like all residual endometriosis was removed, however, you have had several surgeries (which is often the case in endometriosis) and these could have contributed to scar formation which can also result in pain.
I had my laparoscopy cancelled but have been told that my vagina is now stuck to my bowel. How likely is it that I’ll have a successful operation and that my bowel will be intact afterward?
Bowel endometriosis is where deposits of disease can involve the bowel wall, most commonly affecting the rectum or sigmoid colon (part of bowel on your left-hand side). Endometriosis is often sticky and can cause an inflammatory reaction which can lead to some of the anatomy being distorted with the bowel being stuck to the vagina. Bowel endometriosis is generally slow-growing and I suspect you have probably had it for quite some time – so the risk of it suddenly growing quickly is low. While awaiting surgery, you may wish to consider medical hormonal treatment to treat symptoms which may also help slow the disease process.
Surgical removal of endometriosis may be recommended, which is clearly relevant in this instance. It is common practice to work with other colleagues and specialists to determine the best form of treatment. I would certainly recommend that any surgical treatment is performed in a recognised endometriosis centre of which there are several within the UK. They have the expertise to deal with these more complex cases. You can find a list of accredited centres in the UK here: https://www.bsge.org.uk/centre/
Sometimes surgery will involve removing the disease itself without compromising the bowel wall (so the bowel remains intact). This is often referred to as “shaving.” If the nodule of endometriosis disease is larger or if it is causing a narrowing of the bowel wall and/or is present in several different locations, then complete removal of a section of the bowel may be necessary.
Even after menopause, I have really bad pelvic pain, cramps and a few other symptoms. I am overweight and not sure if this causing issues with it. Could this still be endometriosis or something else?
Endometriosis in post-menopausal women is uncommon. It is generally felt to be less active in the postmenopausal period, however, it does have the potential to reactivate if given appropriate stimulation. Post-menopausal endometriosis may be enhanced in the presence of higher circulating levels of oestrogen for example with hormone replacement therapy (HRT). Being overweight can sometimes result in fat cells being converted to oestrogen and could reactive the endometriosis theoretically.
In the first instance, it would be important to exclude other causes for your pain. This may involve an abdominal and/or pelvic ultrasound as well as blood tests to assess for anaemia, vitamin D deficiency and also to assess the function of the bowel and kidneys. If you experience a change in bowel habits or unexplained anaemia, further investigation of the bowel wall may be advised by your doctor which may involve a colonoscopy.
Why do some women with endometriosis find it easy to conceive while others don’t?
Most women with endometriosis will have a normal pregnancy and generally, during pregnancy, endometriosis symptoms tend to improve. In some instances, however, as the uterus enlarges it can cause traction on surrounding structures or adhesions which may contribute to symptoms of pain – especially in women who have more extensive endometriosis.
Endometriosis may increase your risk for pregnancy and delivery complications. There is evidence of a higher rate of miscarriage in women with endometriosis. Equally, some evidence suggests a higher risk of preterm labour in women with endometriosis. Endometriosis has also been reported as a risk factor for low lying placenta (placenta praaevia) and as such, women may experience bleeding complications both antenatally and postnatally as a result of this. It is therefore recommended that women are monitored a little more frequently during pregnancy.
I had my left ovary and tube removed two years ago but I’m now getting the same pain again. How is this possible?
Even if the tube and ovary were removed, if this was due to endometriosis you can still get recurrence at the same site. The endometriosis may involve some small deposits of recurrence on the sidewall of the pelvis which can lead to significant pain and discomfort. The risk of recurrence may be increased if, for example, the contents of an endometriosis cyst were spilled during the procedure. Unfortunately, with any surgery, there is also a risk of scar formation which can cause pain.
I would recommend further investigations with a pelvic ultrasound scan and clinical examination with your doctor. Ideally, you want to see someone who also has access to the notes from your most recent surgery.
I’m currently on standard HRT but not sure if it’s causing some weird side effects. Would natural progesterone be effective in helping me with the symptoms? Are pills or creams better?
Bioidentical hormones are normally what are referred to as natural progesterone, however, there are no randomised controlled trials comparing their effectiveness and safety against conventional HRT treatment.
The most important aspect of HRT prescribing is individualising management according to your symptoms, and tailoring changes in doses of medication or type of HRT prescribed according to a careful review of side effects. It also depends on your past medical history. Your specific symptoms and side effects will determine whether pills or creams work best.
Find a GP with a special interest in menopause or you ask to be referred to specialist menopausal clinic at your local hospital who can help you find the right HRT treatment.
I have endometriosis in the bladder it hurts so much when I wee. Any advice?
Bladder endometriosis is a rare form of the disease and occurs when endometrial tissue grows on the surface of the bladder and can extend to involve the full thickness of the bladder wall.
Symptoms often occur around the time of your period and can include pelvic pain, urgent or frequent need to urinate, burning pain when you urinate, pain when your bladder is full or sometimes blood in your urine. You may also experience more generalised symptoms related to endometriosis such as painful periods and pain during intercourse.
Pelvic ultrasound and MRI may be useful in diagnosis, but small lesions can often be overlooked. The gold standard for diagnosis is direct visualisation of endometriosis lesions either at cystoscopy, where a camera is introduced into the bladder or at laparoscopy.
Hormonal treatment such as the combined or progesterone-only pill and Mirena coil can help manage symptoms, however, depending on location and size of lesions surgical removal may be indicated. This often involves removing part of the bladder itself and having a catheter (tube inside the bladder) during the healing process. While this may sound drastic, the bladder heals remarkably quickly and the risk of recurrence is low.
You can read more about the Wellbeing of Women endometriosis clinic here. Thank you to our expert who so kindly gave her time to answering questions.