What is endometriosis?
Endometriosis is a condition in which cells similar to those from the uterus or womb are found in other places in the body. The most common places are areas close to the uterus, such as the fallopian tubes, bowel and ovaries. This then leads to pain in some but not all people with endometriosis1. It can also sometimes lead to problems getting pregnant. 1 in 10 women of child-bearing age have endometriosis but many are not diagnosed.
How do I know if I have endometriosis?
Endometriosis is often not diagnosed straight away as the symptoms can be so non-specific and also in unexpected places.
Pelvic pain can mean you have extremely painful periods but also can have period-like pain at other times of the month. It can also occur when having sex or when you are urinating or opening your bowels. Depending on where the uterus tissue has implanted, it may lead to symptoms such as back pain.
Sometimes it is only when a woman tries to conceive that endometriosis is first thought of as until then she has not noticed any out of the ordinary pain or symptoms. Endometriosis can lead to decreased fertility2.
Endometriomas or chocolate cysts are ovarian cysts filled with old blood and these may show up on a routine ultrasound or felt on examination.
How is it diagnosed?
The only way to diagnose endometriosis definitively is to look at the tissue inside your abdomen by laparoscopy. This is a surgical procedure and your doctor may decide that your symptoms are enough to suspect endometriosis. In this case, they may decide to try some treatments and see if they work. Common treatments for endometriosis are: NSAIDs (Non-Steroidal Anti-Inflammatory Drugs), hormonal contraceptives, gnRH agonists and surgery.
What causes endometriosis?
The cause of endometriosis is not known. Previously, it had been thought that menstrual blood flowing back into the fallopian tubes and other areas was a cause. This is no longer thought to be a definitive cause and there is ongoing research to look for other causes. The use of menstrual cups is not linked to backflow of menstrual flow. 3
Is there a cure for endometriosis?
There is currently no cure for endometriosis but there are treatments. It may take a few trials to find the one that works for you but it is worth keeping going.
NSAIDs (Non-Steroidal Anti-Inflammatory Drugs): These medications, which include ibuprofen, can be the first step or combined with other treatments. They need to be taken regularly the days you have most pain rather just when the pain hits you. Prolonged use is not recommended so make sure you speak to your doctor about combining with other types of pain relief medications and the maximum dose you can take. Non NSAIDs such as paracetamol / tylenol may be a good option to combine or try on their own.
- Hormonal contraceptives: These can be in the form of pills or vaginal rings. Regulating the menstrual cycle can decrease heavy bleeding and make your cycle and periods more manageable.
- GnRH agonists: Going to the body’s hormone receptors, this medication causes a temporary menopause. They are effective in reducing the symptoms but can’t be used if you are trying to get pregnant. The symptoms are also reduced only while you are taking the medication and will come back once you stop taking them.
- Surgery: This may be to free adhesions or a full hysterectomy. Hysterectomies especially are not to be undertaken lightly as the symptoms may not disappear completely. If the cause is due to the tissue outside of the uterus, then removing the uterus won’t help.
Will I be infertile because of my endometriosis?
No. It used to be said, and some people who are not up to date may continue to say that having endometriosis meant that you couldn’t become pregnant. It is true that having problems conceiving can lead to the diagnosis of endometriosis and it is not fully understood why. However, women with endometriosis can still conceive naturally. Endometriosis UK has a very useful pregnancy and endometriosis information pack which will help answer your questions.
What can I do to help my endometriosis?
Making sure you have efficient pain relief is one of the steps you can take and this means making sure that your health care professional is aware of the impact that endometriosis has on your daily life.
Painful sex can be embarassing to talk about but acknowledging that you are worried is the first step. Changing positions can help as can talking to your partner about fantasies and worries. They might be worried about causing you pain and you may be interpreting that as a lack of interest.
Counselling may be helpful in dealing with the diagnosis or the frustrations. If you can’t see someone in person, there are telehealth options with licensed practitioners. Maintaining a healthy lifestyle including exercise and healthy eating will not cure endometriosis but natural endorphins will make you feel better.
Can I use a menstrual cup if I have endometriosis?
Yes you can. Concerns about endometriosis and the cup were linked to the retrograde flow of menstrual flow4 theory which has been discredited.
If you have established endometriosis, we recommend consulting your gynecologist as depending on the location of the endometriosis it might be more painful (rectovaginal). Also if sexual intercourse is painful then a period cup may be painful.
However many people with endometriosis use a cup pain free. Every body is different. We offer a 120 day full money back guarantee so that you can try a Ruby Cup for a few cycles to see if it works for you.
Some Ruby Cup users with endometriosis have told us that they like the fact that the cup allows them to see how much they are bleeding.
Where to turn to when I can’t deal with my endometriosis anymore?
Speak to your doctor, they may not be aware how much it is affecting you and there may be more treatment options you haven't tried.
Dealing with endometriosis before diagnosis is challenging as it is natural to worry what might be causing these symptoms. Even with a diagnosis many patients feel that they don’t get the support or understanding they need. Endometriosis can severely affect your ability to work at certain times and you can speak to the occupational health department of your workplace.
Engaging in person or online with others in a similar position can help although just remember that most people turn to the internet when they are feeling low. When you are feeling good you are too busy out having fun and living life to spend time on the web.
Sharing the diagnosis with your close friends and family can also help even if they don’t understand all the details. You can always direct them to the web pages below if talking about it is too emotional.
Some support groups include:
- Endometriosis UK
- Endometriosis Australia
- Endometriosis America
- Endometriosis groups across the World.
Date last reviewed: March 2020
Written by Dr Alice Byram Bsc Med & Surg UMA MA Hons MML Cantab
Dr Alice Byram was born in England to a French-British family. Following on from a degree in Spanish from the University of Cambridge, she went to Spain to study medicine. On her return to the UK, she worked in Emergency Medicine for several years before recently returning to Barcelona.
1Shafrir AL, Farland LV, Shah DK, et al. Risk for and consequences of endometriosis: A critical epidemiologic review. Best Pract Res Clin Obstet Gynaecol. 2018;51:1–15. doi:10.1016/j.bpobgyn.2018.06.001
2Tanbo T, Fedorcsak P. Endometriosis-associated infertility: aspects of pathophysiological mechanisms and treatment options. Acta Obstet Gynecol Scand. 2017;96(6):659–667. doi:10.1111/aogs.13082
3-4van Eijk AM, Zulaika G, Lenchner M, et al. Menstrual cup use, leakage, acceptability, safety, and availability: a systematic review and meta-analysis. Lancet Public Health. 2019;4(8):e376–e393. doi:10.1016/S2468-2667(19)30111-2