Endometriosis

Persistent pain and
problem periods.

Endometriosis

Persistent pain and problem periods.

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Endometriosis

More than 1 in 10 women have endometriosis, but it can still take years for many to get the diagnosis they need.

Endometriosis is a painful condition where cells like the ones that line your uterus attach to other areas of your body. The cells act like your uterus lining (endometrium), so they build up, break down and bleed each month. They do this wherever they have attached in your body, although the blood has nowhere to go, and this leads to pain, inflammation and scar tissue developing over time.

Endometrial cells have been found on every single organ in the body, and pain and other symptoms can be felt every day, not just during a person’s period. Endometriosis is not just about having ‘bad periods’, it’s a full-body, highly inflammatory condition. Cells can grow and spread over the years, but this doesn’t mean it’s a type of infection or cancer.

As symptoms come and go, and occur in various parts of the body, getting the right diagnosis can take time. Despite the fact that endometriosis affects 6.5 million women in the US, it takes on average between 7-9 years to get a diagnosis.

You may be wondering, what are the factors that make this condition so challenging to recognize and treat successfully?

Unfortunately, this issue is complicated. Healthcare providers may put pain down to ‘just bad periods’, or fail to fully appreciate the impact symptoms are having on women’s lives and fail to investigate pain thoroughly.

To help your clinician diagnose your endometriosis, you may have to undergo a small surgical procedure called a laparoscopy.  A laparoscopy is a type of surgery that involves using a small camera to investigate where your endometriosis may be.  Small incisions are made in your lower abdomen for the camera to enter your body. During your laparoscopy, your doctor may remove patches of endometrial tissue that they find, or schedule a follow up procedure to do this.

Once endometriosis is diagnosed, treatments mainly focus on managing symptoms. There is no cure that can stop cells growing outside of your uterus. The best course of action for you will depend on your age, whether you would like to become pregnant in the future, how widespread or deep your endometriosis is, what your symptoms are, and how much they impact your life.

Most treatment regimes include pain relief and medication to help you control your hormonal fluctuations and menstrual cycle. Read our sections below for more information on how to manage this common condition.

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Top Tip

Keep a pain and symptom diary (in as much detail as possible) so you can give your doctor clear and accurate information.

Causes and Symptoms of Endometriosis

The exact cause of endometriosis remains unknown, however it is likely triggered by a combination of factors including:

  • problems with your menstrual flow, where some of the blood travels elsewhere instead of out of your body
  • your genetics, as endometriosis is known to run in families
  • your immune system struggling to deal with migrating cells
  • possible estrogen sensitivity. Further research is needed regarding the potential connections here.

One thing we do know is that you can’t prevent endometriosis from happening. Similarly, nothing you’ve done will have caused this condition. Endometriosis can be quite mild, with only one or two small patches of tissue attaching in one area of your body, or you might have lots of patches over different areas of your body. Everyone’s experience of endometriosis is different, but it’s common to start noticing that your periods are particularly painful and/or heavy during puberty, with them getting worse over the years.

It’s important to remember that even if you are told your endometriosis is ‘mild’, it can still cause significant pain. Research shows that even small amounts of endometriosis can cause significant discomfort for those that have this condition.

The most common effects of endometriosis are:

  • chronic pain (bad menstrual cramps, lower back and pelvic pain, pain after sex, painful bowel movements)
  • bleeding or spotting between your periods
  • stomach and digestive problems including diarrhea, constipation, bloating, or nausea, especially during your periods
  • fatigue and a lack of energy
  • sexual and relationship challenges
  • fertility concerns
  • disruption to your work and social life.

The effects of endometriosis on your life may leave you feeling isolated at times, even depressed. It may feel like no one else understands what you are going through, including your healthcare provider. Remember, even though it shouldn’t, it can take time to get the right help and support you need.

It’s important to keep talking to your clinician about what you are going through and persist, even if it feels like you are being dismissed. Hormonally is here to support you and we are building a community of people impacted by hormonal conditions. If you feel isolated or alone in what you are going through, check out our Hormone Allies section where you can share your experiences.

Sometimes sharing your story can be a great first step in reminding you that you deserve access to the right care, support and treatment for what you are going through.

Getting a diagnosis

It’s a sad fact that it can take years of experiencing symptoms, before you get a diagnosis of endometriosis.

Why this long?

Here are some possible reasons:

  • Because of the expectation and acceptance that periods can be heavy or painful, some women don’t speak to their doctors when they experience very painful periods, as they have been taught that this is “normal”. As well as this, physicians may not take reports of pain seriously enough to investigate them thoroughly when women do seek help.

This context of women reporting pain, and it not being taken seriously or investigated is a good example of the gender pain gap. 

  • Symptoms of endometriosis vary from person to person. They can be quite general, so it’s not always immediately obvious what’s causing them.
  • Symptoms can also look like other conditions, such as irritable bowel syndrome (IBS). This means endometriosis can often be misdiagnosed, or symptoms end up being put down to a pre-existing condition.
  • There’s no simple test that makes diagnosis straightforward, the only definitive test is a laparoscopy which is an invasive surgical procedure.

Here are some tips if you think you might have endometriosis and want to seek help:

  1. Keep a pain and symptom diary (in as much detail as possible) so you can give your doctor clear and accurate information.
  2. If you can, find a doctor that specializes in endometriosis.
  3. If you’re not satisfied with your initial consultation, find a second opinion, if you’re able.
  4. Lastly, don’t give up, it can be frustrating to feel like no one is listening but keep pushing for answers.

How will I get tested for endometriosis?

There are a few steps that normally happen before you undergo a laparoscopy:

  1. Pelvic exam: your doctor will feel inside you, for any large cysts or scars that may be behind your uterus.
  2. Imaging tests: your doctor may use ultrasound scanning. This involves inserting a small scanner into your vagina, or using one across your abdomen and pelvis. A magnetic resonance imaging (MRI) is another type of imaging test that can be performed. An MRI creates a picture of the inside of your body.
  3. A trial of medicine such as: hormonal birth control to reduce pelvic pain and heavy bleeding during your period or medications called gonadotropin-releasing hormone (GnRH) agonists. These work by stopping your periods, which in turn, lowers the amount of estrogen your body makes. This is thought to help to reduce pelvic pain.  However, they only work for as long as you take them.
  4. Laparoscopy: doctors make small incisions (usually through your belly button and at the top of your mons pubis) and insert a thin flexible tube with a light and a video camera on the end to look inside your pelvic area for endometrial tissue. They might be able to tell from the tissue appearance that you have endometriosis, or they might take a sample to test in the lab. You would usually have a general anesthetic for this procedure, meaning you are sedated.

There is a new type of test in development that is non-invasive and uses measurements of electrical activity (similar to an ECG) to support a clinician’s diagnosis of endometriosis, but more research is needed into this particular diagnostic tool.

Treatments for endometriosis

As there is no cure for endometriosis, treatment focuses on managing your symptoms and improving your quality of life.

Your doctor should advise you on your treatment options and together, you and your healthcare provider can decide on the right approach. Choosing a course of treatment will depend on:

  • your age
  • whether you would like to become pregnant in the future
  • how widespread and deep your endometriosis is
  • what your symptoms are
  • how much your symptoms are affecting you.

You may have to try several treatment options before you find something that works for you, and your treatment needs may change over time.

Some people find that following a surgical procedure to remove endometrial tissue, their pain resolves, or gets a lot better. however, it is fairly common for endometriosis to recur, with endometrial tissue regrowing and attaching to body parts/organs outside your uterus.  You may only ever have to have one procedure in your lifetime, or you may have to undergo a few.

Treatment options for endometriosis

Pain relief

Including:

  • Heating pads and hot water bottles.  Heat, in general, is your friend when it comes to dealing with menstrual pain.  It can help reduce muscle tension and discomfort.
  • Painkillers available over the counter (including Tylenol, Advil, Motrin, Alleve or Naprosyn). If your pain is particularly bad, your doctor may prescribe you a stronger painkiller. It’s important to use any pain medication you are prescribed responsibly.
  • Physical therapy, exercise and relaxation programs or techniques.
  • Pain modifiers (e.g. tricyclic antidepressants). These medications work well if you are struggling with nerve pain as a result of your endometriosis.
  • Pain clinic (specialist centers that treat all kinds of pain).  Treatments with a pain specialist might include injections at the site you are experiencing pain.  This can help to relax any muscles that have tensed up.
  • Transcutaneous Electrical Nerve Stimulator (TENS) machines: these are small machines with electrodes that attach to the skin and send electrical pulses into the body, blocking the pain messages and/or boosting endorphins which are natural pain-fighters. TENS machines are not too expensive and you can purchase them at most pharmacies.

Treatments to control your hormones

  • If you’re not planning a pregnancy: hormonal birth control can help to reduce pelvic pain and heavy bleeding.
  • If you’re hoping to get pregnant: medications called GnRH agonists can be prescribed to stop your periods. These lower the amount of estrogen your body naturally produces. You take GnRH agonists to treat the endometriosis first, and when and if your symptoms improve, you stop taking the medication and try to conceive.

Surgery

For symptoms that haven’t improved, surgery may be performed which can help aid fertility. The surgeon will remove patches of endometriosis using a variety of methods. They could use surgical tools, or use heat or a laser to cut away the tissue. There are a variety of opinions when it comes to the best way to remove endometrial tissue. If you are going to have surgery and want to know more about the procedure you are having, make sure to ask your surgeon during any consultation.

Alternative approaches

Some women find pain relief with therapies such as acupuncture, chiropractic care, herbs (like ginger or turmeric), or supplements, such as thiamine (vitamin B1), pyridoxine or pyridoxal-5-phospate (vitamin B6), magnesium, or omega-3 fatty acids.

The evidence base for alternative therapies is not robust, but it will not make your endometriosis any worse and could be an option worth exploring.

Endometriosis and your bowel

If you have endometriosis within the bowel, the symptoms are similar to irritable bowel syndrome (IBS), but they often worsen in the days before and during a period.

Symptoms can include:

  • pain with bowel movements
  • deep pelvic pain during sex
  • rectal bleeding (from your anus) during a period.

If you think you might have bowel endometriosis, keep a note of your symptoms to look for a monthly pattern. If you are experiencing rectal bleeding it is worth talking to your doctor. In addition to being a possible symptom of endometriosis in the bowel, there are other things that rectal bleeding can point to. Typically, small amounts of bright red blood may indicate a small cut or tear in the rectum, and is usually nothing to worry about. If the blood is darker in color (e.g. dark red or maroon), or your poop is black and tarry, this is something you should talk to your doctor urgently about.

Surgery is the usual treatment for bowel endometriosis, although hormone treatments may be tried first. It might be done via a laparoscopy or via open surgery, and several surgeries may be needed to treat the affected areas.

Endometriosis and your bowel

Endometriosis and the bladder

Endometriosis can affect your bladder. Symptoms tend to become worse in the days leading up to and during your period. They can include:

  • bladder irritation
  • feeling the need to pee more often
  • pain when your bladder is full
  • occasional blood in the urine or during a period
  • pain in the kidney area.

Depending on how bad your symptoms are, you can help to control your endometriosis with a combination of painkillers and hormonal treatments. You may need surgery to remove patched of endometriosis on the bladder and these options include:

  • treating the affected areas with a laser
  • using a deep heat treatment (diathermy) on the affected areas
  • removing patches of the endometriosis with surgical tools.

Fertility, pregnancy and endometriosis

It’s estimated that 60-70% of people living with endometriosis will struggle to become pregnant. There are several options that may help to support your fertility if you do want to get pregnant. This includes surgically treating the endometrial tissue, which can help to increase the chances of pregnancy in some women, as well as exploring fertility options such as in vitro fertilization (IVF).

There is an increased risk of having an ectopic pregnancy (where a fertilized egg implants itself outside of the uterus, usually in one of the fallopian tubes) or miscarriage if you have endometriosis. Pregnancy does not cure endometriosis, but some people find that their pain does improve while they are pregnant. For most however, the pain usually returns after they have given birth and their periods have returned.

Living with endometriosis

Endometriosis is a serious condition that can impact many different areas of your life. For example you may find endometriosis impacts your:

  • ability to perform at work
  • ability to look after your family
  • social life
  • financial situation (if working is difficult)
  • relationship including having sex or being intimate
  • fertility

Experiencing chronic pain of any kind can be emotionally and physically draining. You may find yourself feeling frustrated, agitated and depressed about your situation. It can be particularly hard when it feels like important areas of your life are limited by your condition. While there may not be a cure for endometriosis, there is plenty that you can do to reduce the effects this condition is having on your quality of life.

Alongside the medical treatments that your doctor can help to provide, consider the following tips on living well with endometriosis.

  • Look after your mental health.
  • Fatigue and prioritize sleep and relaxation.
  • Combat isolation, keeping up with connections to loved ones and friends.
  • Speak to your boss or HR representative at work to discuss whether there may be flexible ways of working when your symptoms flare up.
  • Be open with your partner about the impact endometriosis has on your intimacy and sex life. It can be really helpful to try to come up with solutions together.
  • Explore complementary therapies such as acupuncture, herbal remedies, osteopathy, reiki, reflexology, and yoga if you feel like this could be a helpful solution for you.
  • Look into recommended diet changes for endometriosis.
  • Adopt some lifestyle changes. This could include reducing the amount of caffeine and alcohol you consume, quitting smoking and regularly exercising (ideally) outdoors.
  • Try to work on accepting and living with endometriosis, rather than focusing on curing or getting rid of the symptoms altogether.
  • Find support from others who know what it’s like to live with endometriosis, or speak to a counselor or therapist.

Hormonally understands that women’s pain is regularly dismissed and stigmatized. Our organization is committed to addressing unsupportive attitudes towards women’s experiences of pain when seeking care. If you feel comfortable sharing your story with us, head over to our Hormone Allies page to let us know about your experience. It may help to support others, and in turn, help Hormonally to raise awareness of this issue.

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