Endometriosis means that the uterine mucosa grows outside the uterus. Roughly one in ten people who have menses have the disease. A common symptom is having a lot of pain associated with menstruation. The most common thing is that you need treatment to relieve the pain or disappear.
It is important that you get to see a gynecologist get help with the examination and treatment if you have a lot of pain during menstruation. Both to relieve pain and to avoid complications.
Symptoms of endometriosis
It is common for the first symptoms of endometriosis to come in their teens. Some people get symptoms the first time they have menstruation. It is different from person to person what symptoms you have if you have endometriosis. Some people do not know their endometriosis at all or quite a bit. Others may have symptoms that are not listed here.
It is common to have one or more of these disorders if you have endometriosis:
- You get a lot of pain when you have menstruation.
- You have pain far into the vagina and into your stomach when you have a slit joint.
- You have symptoms of endometriosis similar to urinary tract infection. For example, you may feel awkward often or have difficulty getting started and peeing.
- You have symptoms similar to IBS, such as diarrhea or constipation.
- It hurts when you pee or poop.
- You have blood in the kiss or poop in connection with the menses.
- You generally feel sick, tired, nauseated and have a fever.
- It is difficult to get pregnant.
- You have longer and richer menus.
Endometriosis usually disappears after menopause, but sometimes the pains remain.
Endometriosis often occurs in forests
Endometriosis often occurs in so-called forests. This means that the strength of the symptoms varies over time. It is common to have better and worse days or longer periods with more or fewer symptoms.
What can I do for myself?
There are various things you can try to do yourself to see if it relieves the pain. For example, it can feel comfortable with warmth on the stomach, such as warm wheat pads or a heating pad. Acupuncture or tens, transcutaneous electrical nerve stimulation can also relieve. Relaxation exercises, KBT, and mindfulness can be other ways to deal with the pain.
Food can play a role
Some who have endometriosis notice that what they eat affects how they feel and how bad they are. There is no evidence that a particular diet causes endometriosis in itself to be affected. An uneasy bowel, however, affects the entire stomach and can make the pain from the endometriosis more painful.
You can try keeping a diet diary to see if there is food that causes you less pain and exclude it that causes more discomfort or pain. Please contact a dietician for advice.
Exercise is good for the pain
It is good to move, as it activates the body’s own pain relief system. When you move, endorphins are released, which relieves pain. Walking or other forms of light exercise can be enough.
It can feel difficult to move and exercise, for example, if you have a lot of pain from endometriosis. Then you may need help from a physical therapist.
Where and when should I seek care?
Contact a health center or gynecological clinic to see if one or more symptoms are right for you:
- You are so hurt when you have menstruation that it limits your life, for example, that you cannot go to school or work even if you are taking non-prescription pain-relieving drugs.
- You have other symptoms that you think may be due to endometriosis.
Investigations
You are told how you feel and what symptoms you have. The doctor usually does a gynecological examination and a vaginal ultrasound examination.
It is quite common for endometrial cysts to form in the ovaries. They are called ovarian endometrioma or chocolate cysts. They contain endometriosis and old broken blood. An ultrasound can show, among other things, if you have cysts on the ovaries.
In some cases, an examination may be required via dental cavity surgery. It is then possible to remove any endometriosis at once. You can read more about it in the chapter called treatment.
You may need to see several doctors
It can take a long time to get the right diagnosis if you have endometriosis. It is common for the disease to be mistaken for common menstrual pain, urinary tract infection or IBS. Seek care again if you do not think you will be better off by the treatment of endometriosis you receive.
There are several receptions that specialize in endometriosis, such as the National Endometriosis Center in Uppsala and the Endometrioscentrum in Huddinge. You can call there for advice and you can also ask for a referral there from your health care center, no matter where in the country you live.
Seek care throughout the country
You can then increase care at any healthcare center or open specialist clinic you want throughout the country. Sometimes a referral to the open specialized care is required.
You should understand the information
In order for you to be involved in your care and treatment, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. For example, you should receive information about treatment options and how long you may have to wait for care and treatment.
Treatment for endometriosis
The most common thing is that you need treatment to relieve the pain or disappear. In some, endometriosis heals out of itself. When you get into menopause and stop getting menstruation, endometriosis usually disappears.
It is not possible to get rid of the disease by hormonal or surgical treatment, but it can be relieved.
It is different for different people which treatment works best. For example, it may depend on how old you are or if you plan to become pregnant. It is common for you to get together with your doctor to try out what works just for you. The treatment is usually a combination of pain relief and hormone therapy. Sometimes endometriosis needs surgery.
Drugs for the pain
It may help to use non-prescription painkillers if the pain is mild. In the first place, drugs with paracetamol are often recommended in combination with COX inhibitors.
You may need stronger painkillers at times if you have a lot of pain. Examples of these are Tradolan or Citodon, which are both opioids and are prescription-only. Opioids mean that they resemble morphine.
You can get help from a pain specialist
You may need even stronger opioids during periods, but then you need help from a pain specialist or a gynecologist with extensive experience in pain management. You can also get pain relief in the form of, for example, morphine in hospitals if you have a lot of pain.
Some drugs are better for the stomach
Some painkillers may irritate the stomach. Then you can instead take suppositories, which you insert into the rectum. You can also take entero-tablets, which dissolve in the intestine instead of in the stomach when you swallow them. There are also long-acting painkillers that are better for the stomach. Ask your doctor for advice.
Drugs with hormones
Endometriosis is made worse by the hormone estrogen. There are treatments that can reduce estrogen in the body. This is done with the help of medicines that stop you from ovulating and menstruating. Ideally, you should be completely bleeding-free.
It is common to first try regular combined birth control pills that consist of both estrogen and progestogen. If it does not work, you can usually try either drug containing only progestagen or GnRH analogs. All three work equally well against endometriosis, but different people can have different side effects, which makes one or the other method a better fit.
It is common to need treatment for several years. Sometimes the treatment can help with the pain but give side effects so that you do not feel well. Then you can pause the treatment and then start again. Sometimes a combination of different treatments may be needed.
The hormones affect the body and you can get side effects such as irregular bleeding, depression, decreased sex drive, weight gain, and acne. Talk to your doctor if you get any side effects.
You can take birth control pills without interruption
The pill contains the hormones estrogen and progestogen. You take a pill every day without interruption for menstruation.
Many people become completely bleeding-free when taking the pill continuously and it is harmless that the period stops during treatment. Others get bleeding after a while. If you get a bleed, you stay for three to four days to bleed. Then you can take the pill again until the next bleeding comes. You should switch to another treatment or try adding another treatment to the pill if you get bleeding frequently.
Gestagens – medicines that contain only the progestogen
Gestagens usually make you bleed free. There are different types of process and therefore you can try out which one suits you best. You take them as tablets every day.
You can also get syringes with the prog. It is different how often you need a syringe. It can be every three weeks to every three months.
There are various hormonal spirals containing the progestin. The hormone spirals can be used alone or in combination with another gestagen or combined pill.
GnRH analogs
GnRH analogs basically remove all estrogen production in the ovaries and give you the same symptoms as if you were in menopause. You can take the drug as a nasal spray every day, or get a syringe every three to four weeks. You usually get a low dose of estrogen at the same time to relieve menopausal disorders such as sweating and flushing, and to reduce the risk of osteoporosis.
Sometimes surgery is needed
Endometriosis may need surgery. How big the operation will depend on where it is located, how widespread it is and if there are cysts, scars, and convolutions.
It is most common with a puncture surgery, also called laparoscopy. You are anesthetized during the operation.
It is unusual but sometimes the doctor needs to have an operation where the stomach is opened. This may, for example, be due to the endometriosis causing many or large growths.
Sometimes it is easy to see the endometriosis but sometimes the doctor has to take a sample from the tissues for microscopic examination.
You get to talk to a doctor before the surgery so that you are well prepared for what the surgery can mean.
The ovaries are usually left behind
With puncture surgery, the doctor can also remove, for example, the ovaries and uterus if needed. The ovary is usually left behind if you want to have children. Then you get menstruation as usual afterward and can get pregnant.
A large part of the ovaries in the ovary is destroyed if a cyst is removed. However, there are some reasons to still remove cysts:
- The doctor suspects that there is cancer.
- A cyst is in the way of egg picking prior to test-tube fertilization.
- A cyst is believed to cause pain that cannot be relieved otherwise.
How long does the operation take?
The surgery can take half an hour to a couple of hours depending on how much endometriosis you have. It may take longer if more advanced surgery is needed.
After the surgery
It is common to have to take medicines after surgery to delay or at best prevent the endometriosis from returning.
What is endometriosis?
Endometriosis means that there are uterine mucosa or cells that resemble uterine mucosa in places other than inside the uterus. Endometriosis that grows in the uterine wall is called adenomyosis. In addition to menstrual pain, adenomyosis does not produce the same symptoms as endometriosis.
Endometriosis can be found virtually anywhere in the body, but it is most common for endometriosis to be found in one or more of the following:
- peritoneum in the lower abdomen and under the ovaries
- one or both ovaries
- outside of the uterus
- bladder
- rectum
- other internal organs.
Endometriosis can begin as pin-sized bumps that gradually grow into larger areas called endometriosis cures. You can have mild problems even if you have large endometrial cures. The type of pain you get depends in part on where the changes are.
What happens in the body?
The endometrial cures respond to the hormones estrogen and progesterone in the same way as the normal uterine mucosa. Estrogen and progesterone are the hormones that control menstruation. Estrogen stimulates growth while progesterone affects the function of the mucosa so it is susceptible to any fertilized egg. When progesterone levels go down, it starts menstrual bleeding in both the uterus and any endometrial cure.
Endometriosis causes inflammation
When you have menstrual bleeding, there will be bleeding inside the endometrial cure. The bleeding increases irritation and pain. The body’s immune system then tries to get rid of the endometriosis by sending out a lot of different substances. The substances cause inflammation. The inflammation causes the nerves to become more sensitive so you get hurt.
Organs can grow together
Inflammation can also lead to growth. The coalescence is due to the formation of connective tissue on and around the endometrial cure. The connective tissue is like tight threads or shocks. The connective tissue can cause constrictions, for example, between the intestines and abdominal wall, or between the uterus, fallopian tubes, and ovaries.
The mergers can prevent different organs from moving as they usually do. Then there can be draws that hurt. It can also aggravate pain at various postures and physical activity.
What does endometriosis cause?
It is not entirely known what the endometriosis is due to. The most likely explanation is that cells or pieces of the uterine mucosa are squeezed into the stomach through the fallopian tubes when you have menstruation. The cells or pieces of uterine mucosa then attach to the peritoneum where they continue to grow.
Studies have shown that endometriosis is to some extent hereditary. This means that the likelihood of getting endometriosis is greater if you have a genetic relative who has the disease.
There are several causes of the disease and they vary from person to person.
Living with endometriosis
Since it is mentally stressful to constantly be in pain, you may need conversation support, for example with a curator or psychologist. Ask your doctor for help with getting in touch. There are also patient associations such as the Endometriosis Association.
Getting a sick message
It can awaken different emotions and reactions to know that you have endometriosis. Many people with the disease have had to wait a long time to get a diagnosis.
For some, it may be a relief to finally get a diagnosis and treatment. For others, it can also cause grief, for example, if you have gone through a long time with your problems and have not received help before. But most people feel better when they receive good treatment and proper treatment.
A common concern that arises is whether you should always have what you have now. Concerns about getting pregnant are also common. Both of these issues need to be discussed with experts in each area to get the best information possible, suggesting an endometriosis specialist and a specialist on involuntary childlessness. Most people with endometriosis can have their own biological children.
Complications and sequelae
There is an increased risk of ovarian cancer if you have endometrial cysts in the ovaries.
The pain may remain after treatment
There is a risk of so-called pain sensitization if you are in pain for a long time. Then the pain experience has changed so that you have pain regardless of the endometriosis. There is a risk that a chronic pain syndrome will develop.
Pain may not be relieved by treating endometriosis or by removing the uterus and ovaries if you have developed a chronic pain syndrome. The pain still remains with the same intensity. You will need help from a pain specialist if you experience such pain. Most people are helped by meeting a team of pain doctors, psychologists, physical therapists and occupational therapists.
Pregnancy and endometriosis
It may be more difficult to get pregnant if you have endometriosis. There are several reasons for that. Among other things, it may be more difficult for the eggs to be fertilized. It can also be more difficult for a fertilized egg to get stuck, as the inflammation causes the uterine mucosa to not function properly. Endometriosis increases the risk of miscarriage.
Test tube fertilization, IVF, is the most successful method for getting pregnant if you have endometriosis and fail to get pregnant in the usual way. The results are almost as good as when it is difficult to get pregnant for other reasons.
The pain is often worse in the first two to three months if you become pregnant, then it is normal to be in the most pain-free until the baby is born. For most people, the pain comes back sometime after the baby is born, usually, after the period has started again.