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March 2023 Endometriosis Action month

All about Endometriosis Action Month 2023

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Your laparoscopy

What is a laparoscopy?

A laparoscopy is the most common way to diagnose endometriosis. During a laparoscopy, a small telescope (laparoscope) is inserted into the abdomen to look directly at the internal tissue. Laparoscopies are always carried out under general anaesthetic. During a laparoscopy various procedures can be performed in order to destroy or remove the endometriosis, endometriotic cysts and release scar tissue (adhesions).

You will have a pre-op assessment with your doctor some time before you have a laparoscopy. This is the ideal time to discuss any questions or concerns you have and to agree whether you would like your endometriosis to be treated if it is found. The hospital will write to you with basic instructions for the laparoscopy – but you may also find the following information helpful:

What to take with you to the hospital

Although a laparoscopy is commonly a day-case procedure, you may need to stay overnight or longer if they treat the endometriosis or if there are complications. It is worth taking a small overnight bag with you. Your own slippers and dressing gown will help provide some comfort on the ward. For 24 hours following an anaesthetic you are not allowed to drive.

You should be looked after following your laparoscopy, so arrange for a partner, friend or family member to come and pick you up from the hospital and stay with you afterwards. Ask them to bring a pillow or rug for the car journey home as the seatbelt can cause discomfort against your stomach and you may feel cold. It is possible you may vomit in the car so a bag or bowl would be useful.

It's worth noting that you may not be able to shower for 48 hours after a laparoscopy, so you may want to make sure you shower before going to hospital.

How you may feel after your laparoscopy

You have just had an anaesthetic so you will probably feel groggy and nauseous and perhaps need to vomit. During a laparoscopy, the abdomen is carefully filled with carbon dioxide, this helps lift the abdomen wall from the bowel to help insert the laparoscope. Following a laparoscopy, this excess gas can cause some discomfort. You may find that peppermint oil or peppermint tea help to ease these symptoms. A tube is inserted into your throat to help you breathe during your laparoscopy so your throat may feel sore. You will experience some vaginal bleeding. Most  feel some discomfort following the laparoscopy but if you are in pain or are bleeding heavily, do tell a doctor or nurse. If you are worried about nausea and vomiting afterwards, discuss it with the doctor or nurse beforehand as there is medication that can help with this.

For the first couple of days after your laparoscopy you need to rest and let your body recover from the procedure. Gently moving around will help any excess gas to leave your body – but don’t overdo it. It is normal to feel weak and tired for about ten days following a laparoscopy – longer if you have had any surgical treatment. You will have a few stitches in your abdomen so be careful when bending, stretching and washing. Normally these are stitches that dissolve by themselves but if you experience any irritation or problems, contact your hospital.

Most experience a period of emotional ups and downs following surgery. All of this will pass in time and you will begin to feel in control again. Be gentle and patient with yourself during your physical and emotional recovery. Remember that we do have a free Helpline, run by trained volunteers that all have a direct experience of endometriosis. 

Experiences with the first period after a laparoscopy can vary dramatically. If your period is more painful, longer, or heavier than usual, don't panic. Internal healing takes much longer than external healing. Therefore, your first few periods may be more painful. However, if you are concerned about the degree of pain, or if your pain is severe, contact your doctor.

We are grateful to www.endometriosis.org for their help with this information.

We only intend for this information to help you make any decisions you may face, but not to replace the medical advice from healthcare professionals. Please do continue to talk to your doctor if you are worried about any medical issues.

Laparoscopic Surgery for Endometriosis

As a charity, Endometriosis UK relies on support from people like you. If you found this page helpful please consider making a donation. Thank you.

Endometriosis ~FAQs~

What is endometriosis?

Endometriosis occurs when cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue.

Endometriosis is most commonly found on the lining of the pelvis (peritoneum) and may occur in the ovaries and involve other pelvic organs, like the bowel or bladder. Less commonly, endometriosis can also be found outside the pelvis, such as in the chest.

Endometriosis affects 10% of women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. In the UK, that’s over 1.5 million from all races and ethnicities living with the condition.
 

How did I get endometriosis?

The cause of endometriosis is not known. However, it has not happened because of anything you have done, or not done. Genetic, environmental and anatomical causes may contribute to the development of endometriosis. Read more about the various theories that have been suggested.

Is endometriosis or a form of cancer? Can endometriosis turn into cancer?

Endometriosis is NOT a form of cancer and research shows that the chance of getting cancer from having endometriosis is very low. Every single benign tissue in our bodies has the potential to turn into cancer; therefore it could be argued that deposits of endometriosis could turn into cancer. However, it could also be coincidence to have both endometriosis and cancer.

Can endometriosis be prevented?

Currently, there is no way of preventing endometriosis. There are ways of managing symptoms and of managing the disease.

The type of treatment should be decided in partnership between the patient and their healthcare practitioner. The decision about which treatment to choose should depend on several factors:

  • Your age
  • The severity of your symptoms
  • The severity of your endometriosis
  • If you’ve had any previous treatment
  • Risks or side effects of treatments
  • Your medical history or health risks
  • How long you intend to stay on treatment
  • Whether or not you want children, and when

Read more about information on the endometriosis treatments that are available.

Is it true that endometriosis only affects white women in their 30s who have delayed childbearing?

Endometriosis affects 10% of women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. In the UK, that’s over 1.5 million from all races and ethnicities living with the condition.

Can diet and nutrition help endometriosis symptoms?

You may have read that certain diets can help to manage endometriosis symptoms. There is little high-quality evidence for this but there is a growing understanding of the role of nutrition for symptom relief. Research is ongoing, and many people report that making changes to their diet helps to relieve symptoms. For example, some people find that certain foods cause bloating or constipation and this can make their pain worse, particularly if they experience bowel symptoms from their endometriosis, but what works for one person may not work for another.

You may have heard that soya should be avoided as it contains oestrogen. In theory all oestrogen can encourage the growth of endometriosis but that is no reason to avoid soya as it would require very large amounts to have a significant effect. For more information on the role of diet and nutrition please see our publication on diet and complementary therapies for endometriosis.

What are dioxins? Are they making endometriosis worse?

Dioxins are chemicals found in our environment. They are released into the atmosphere from the manufacturing and burning of items such as paper and plastics. There is a theory that certain toxins in our environment, such as dioxin, can affect the body, the immune system and reproductive system and cause endometriosis. Research studies have shown that when animals were exposed to levels of dioxin, they developed endometriosis. This theory has not yet been proven for humans.

Can Endometriosis UK recommend a specialist, surgeon or treatment centre?

We are unable to recommend specific specialists, surgeons, hospitals or treatment centres for legal reasons. Additionally, we are also aware that one person's experience and needs of a consultant can hugely differ from another. We recommend seeking out institutions that have been peer-reviewed by other medical professionals and deemed centres of excellence. We feel that a good place to start looking for this information is through the British Society for Gynaecological Endoscopy (BSGE) website. The BSGE accredited specialist endometriosis centres have consultants who are specialists in the field of endometriosis. The centres are reviewed annually.

How can I find a consultant who specialises in endometriosis?

For legal reasons, Endometriosis UK is unable to recommend a particular doctor or hospital. For a variety of reasons, not all gynaecologists will have a particular specialist interest in endometriosis. In the first instance, you could ask your GP if they know which local gynaecologists are interested in endometriosis or pelvic pain. As recommended in the question above, we recommend visiting the BSGE website and viewing their list of accredited endometriosis centres.

How do I get a second opinion? Can I be referred to another consultant?

It is important to feel able to communicate with your healthcare practitioner. They should check your understanding of the condition, explain any medical terms and let you ask questions. If you are not happy or don’t feel comfortable with the advice or treatment from your GP or consultant, do ask for a second opinion. Before you get a second opinion it is worth considering whether this is due to a breakdown in communication. If you do not understand an explanation you have been given, you could ask your doctor to explain it to you again. Your GP will be able to give you advice on getting a second opinion from a consultant. If you wish to see a different GP, you can make an appointment with another GP in the practice or try to change practices. The NHS website has a useful guide that explains your choices in seeking care. 

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Is this normal? Educating young women about endo.

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Endometriosis ~glossary~

This page contains a glossary of medical terms and words that you may read or hear when you are learning about endometriosis.

A-B-C-D-E-F-G-H-I-J-K-L-M-N-O-P-Q-R-S-T-U-V-W-X-Y-Z

 

A

Abdominal hysterectomy A hysterectomy carried out through a cut in the abdominal wall. Learn more about hysterectomy.

Adenomyosis  Adenomyosis (ad-uh-no-my-O-sis) is a condition where cells similar to the ones in the lining of the womb grow within the muscle of the womb wall. Adenomyosis also responds to the hormones in the menstrual cycle and affects 10% of women and those assigned female at birth. You can have only endometriosis or adenomyosis, although it’s quite common to have both.

Adhesion Fibrous scar tissue that is formed inside the body. They are usually caused by trauma to tissue – which can happen with endometriosis or because of an injury, or during surgery. They are a cause of pelvic pain. They can attach organs to each other inside the pelvis, or to the pelvic wall.

Anaesthetic  Induced loss of feeling and awareness in a patient. Anaesthetics can be either local or general. A general anesthetic puts the patient to sleep (makes them unconscious), a local anaesthetic will numb a part of the body.

Androgen  A hormone that stimulates or controls the development and maintenance of masculine characteristics. Testosterone is the most commonly known androgen. 

Anaemia A condition caused by heavy blood loss, excessive red blood cell destruction, or a deficiency in the production of red blood cells.  It causes a low red blood cell count, which leads to extreme tiredness. 

Aromatase inhibitors  Medication that stops (inhibits) the enzyme aromatase from working.  Aromatase changes androgens into oestrogen. These drugs are occasionally being used to treat women with endometriosis, if those women have not responded to other treatments. These drugs are used to treat some breast cancers. They are still in the experimental phase for the treatment of endometriosis.

Autoimmune Disorders  When immune cells attack the body’s own cells by mistake. Examples of autoimmune disorders include Type 1 diabetes mellitus, coeliac disease and rheumatoid arthritis.

B

Back pain Pain felt in the low or upper back. There are many causes of back pain.

Benign Something which is not life threatening or cancerous.  A benign tumor does not invade surrounding tissue or spread to other parts of the body. Benign tumours can cause problems if they are large, or obstruct the bowel or other organs. 

Biopsy The removal of a sample of tissue for purposes of diagnosis. During a laparoscopy, the doctor may biopsy some tissue from your body, to see if it has endometriosis or other diseases. The biopsy is examined a laboratory.

Bone density: The measurement of how strong (dense) a person’s bones are, in their body. If a person’s bones become weak, and lose bone density – this can lead to them becoming brittle and easily broken. This is a condition called osteoporosis.

Bowel The section of the digestive system that runs from the stomach to the rectum (anus). It is also known as the intestine. The small bowel and the large bowel are the small intestine and large intestine, respectively. The bowel works by digesting and then absorbing the nutrients form the food we eat, then by making stools (faeces/poo).

Bilateral salpingo-oophorectomy Surgery to removal both ovaries and fallopian tubes.

Bowel resection Surgery to remove a part of the bowel. The procedure may remove the portion of the bowel where an obstruction is located. Complications of a bowel resection include fistula, the formation of adhesions, and the possibility of a colostomy.

C

Carbon dioxide  A gas known as CO2, which is produced during the breathing process. During a laparoscopy, CO2 is pumped into the abdomen, to enlarge it, and move the wall of the abdomen away from the internal organs, to allow the surgeon room to get at them.

Cauterisation  The removal or destruction of tissue with a laser or an electrical current. This can help with heavy bleeding and removal of endometriosis deposits.

Cervix  The 'neck' of the womb or the opening between the body of the womb (uterus) and the vagina. 

Chocolate cyst (endometrioma)  A cyst in the ovary, filled with old blood, also known as an endometrioma. It occurs when there is bleeding into a cyst. They are called chocolate cysts because the blood is dark coloured and looks like liquid chocolate.

Chronic: Persistent and lasting a long time.

Chronic fatigue syndrome: Persistent, disabling fatigue (exhaustion) that affects every day life and doesn't go away with sleep or rest.

Cul-de-sac The area between the womb (uterus) and the rectum. It is also known as the Pouch of Douglas.

Cystoscopy A procedure where the bladder is examined using a small telescope inserted through the urethra (tube where urine passes from the bladder to outside the body).

D

Disease: Illness or sickness that usually has typical symptoms.

Dioxin a toxic chemical (compound) found in pesticides, the manufacturing and burning of paper and plastics, and food such as meat, diary produce and fish, etc. It may be linked to endometriosis, see our causes section.

D&C (Dilatation and Curettage)  A procedure, done under general anaesthetic, where a woman’s womb is dilated and then the lining of the womb is scraped with a spoon shaped instrument and removed (curettage).

DXA Scan

A DXA scan also called a bone scan uses to low dose X-rays to assess bone density, to see how strong your bones are). DXA scan are often used to assess your risk of osteoporosis, a condition where the bone density is low (weaker bones) which makes them more likely to fracture or break. 

Dysmenorrhea Painful periods.

Dyspareunia Painful sex.

E

Ectopic pregnancy When a fertilised egg stays in the fallopian tube and starts to develop, instead of travelling into the womb.  This can be dangerous and even life-threatening if left untreated.

Endometrial ablation When the womb lining is removed using a variety of methods including lasers, electric currents, being frozen or using heat. This treatment for heavy menstrual bleeding permanently stops periods and prevents future childbearing. 

Endometrial hyperplasia When the womb lining thickens and grows excessively. It is a benign or pre-malignant condition.

Endometrioma See chocolate cyst 

F

Fallopian tube A tube that lies between the ovary and the womb, and transports the eggs to the womb. A woman has two Fallopian tubes.

Fatigue Extreme tiredness. It can come on quickly, or be a chronic condition.

Fibroid (leiomyoma) A benign tumour of the uterus (womb).

Follicles Areas in the ovary, filled with fluid, containing the eggs that are released during ovulation. 

Follicle Stimulating Hormone – FSH One of the gonadotropins - the hormones that stimulate the growth of the follicle.

G

Gonadotropins The hormones that control the function of your ovaries. They are called the Follicle Stimulating Hormone (FSH) and the Luteinizing Hormone (LH). 

GnRH agonists and GnRH antagonists are both used to regulate hormone levels, but they work in different ways.

GnRH Agonists:

GnRH (Gonadotropin-releasing hormone) agonists mimic the natural GnRH that the body produces. When the medication is administered, it initially causes a surge of LH (luteinizing hormone) and FSH (follicle-stimulating hormone), which stimulates the ovaries to produce oestrogen. Overtime GnRH agonists cause a decrease in LH and FSH production. This suppresses the ovaries and lowers oestrogen levels.

GnRH Antagonists:

GnRH (Gonadotropin-releasing hormone) antagonists work differently. Instead of stimulating the release of LH (luteinizing hormone) and FSH (follicle-stimulating hormone), they block the GnRH receptors causing an immediate suppression of LH and FSH, stopping the ovaries from producing oestrogen.

GnRH antagonists typically have a faster onset of action as they immediately block oestrogen production, while GnRH agonists take longer due to the initial oestrogen surge before downregulation. This initial surge in oestrogen can ‘flare up’ endometriosis symptoms, which can be uncomfortable for patients. GnRH antagonists avoid this by providing a more immediate suppression of oestrogen.

Gynaecologist  A doctor who specialises in female conditions – primarily the reproductive and urological (kidneys, bladder etc) organs. Your GP may refer you to a gynaecologist to investigate symptoms.

H

Hormone  A chemical substance released inside the body that controls and maintains the activity of cells or organs.

Hormone Replacement Therapy – HRT  Medication used to mimic the effects of oestrogen. It is prescribed after a hysterectomy or during menopause (either natural or medical) to counteract the effects of the menopause. Those effects include hot flushes, night seat, loss of libido, mood swings, loss of bone density and vaginal dryness.  HRT has its own risks and should be carefully considered before taking.

Hysterectomy  The removal of the womb from the body during surgery. There are several different ways this is done, see below:

  • Total hysterectomy: The removal of the womb (uterus) and the cervix, under anaesthetic.
  • Sub-total hysterectomy: The removal of just the body of the womb (uterus).
  • Total hysterectomy with bilateral salpingo-oophorectomy: Removal of the womb (uterus), cervix, ovaries and fallopian tubes.  

Hysterectomy can be done with or without removing the ovaries. If the ovaries (or disease elsewhere) are left in place then endometriosis is likely to continue occurring. Some women then need a further operation to remove the ovaries later. Hysterectomy is not the right operation for everyone and not a decision to make lightly. Consider all options and discuss things fully with your GP or Gynaecologist. Remember that a hysterectomy is irreversible. Hysterectomy can treat adenomyosis effectively and is an effective treatment for endometriosis if all the remaining deposits of the disease (which can be hard to find) are removed along with the ovaries.

Hysteroscopy  A procedure in which the doctor examines the inside of the womb (uterus) under anaesthetic, by inserting an instrument (hysteroscope) into the womb. Minor surgery, such as the removal of a polyp, can be done at the same time.

I

Immune system The system within the body that secures against harmful substances; it enables the body to recognise materials as foreign to itself and to neutralise, eliminate, or metabolise them with or without injure to 

Incision A cut made into the body, by a doctor during a surgical procedure.

In Vitro Fertilisation (IVF) Literally means "in glass." Fertilisation takes place outside the body in a small glass dish. 

Infertility The inability to become pregnant; if a couple has a year of regular, unprotected sex and doesn’t become pregnant, then that is also classed as infertility.   
            Primary infertility is difficulty in conceiving for the first time.  
            Secondary infertility is difficulty in conceiving after already having been pregnant.  
            Unexplained infertility is difficulty in conceiving that cannot be explained by a particular          cause or reason.
Infertility should be investigated by a doctor and can be treatable, through surgery or through taking hormones, or trying for a baby using In-Vitro-Fertilization (IVF). These methods are not always successful.

Inflammation A way in which the body reacts to infection, irritation or other injuries. Inflammation causes swelling and pain. With endometriosis, inflammation is caused by the release of hormones called prostaglandins. 

Informed consent A contractual agreement between a healthcare professional and a patient, where the patient understand and agrees to any treatment or surgery and the implications and risks involved and what it is trying to achieve. This agreement should be based upon clear and accurate information being provided to them by the healthcare professional.

Internal exam Also known as a vaginal examination. The patient lies on a couch and sometimes the feet are put in stirrups. The doctor or nurse then inserts fingers into the vagina and also presses on the abdomen to feel the pelvic organs. The patient and the doctor/nurse both have a right to a chaperone for this examination. 

Intrauterine Inside the womb (uterus), the opposite of extrauterine - outside the womb.

IUCD (Intrauterine Device)  A device placed into the womb to prevent pregnancy.

Irritable bowel syndrome (IBS)  A disorder of the bowel disorder causing bloating, cramps, spasm, constipation and diarrhoea.

J

 

K

 

L

Laparoscope: An instrument, like a small telescope with a light on one end, used to look at the inside of the pelvis, during a laparoscopy. 

Leiomyoma The medical term for fibroids. 

Lesion A small area of abnormal tissue – can be caused by endometriosis, other diseases or injury.

Luteal phase The part of the menstrual cycle between ovulation and menstruation

Luteinising hormone (LH) One of the gonadotropins - the hormone that is responsible for releasing an egg.

Laparoscopy  The only way to diagnose endometriosis is through a procedure called a laparoscopy.  Usually done under general anaesthetic, a small telescope with a light on the end (the laparoscope) is inserted into the pelvis through the navel (belly button). The laparoscope usually has a camera to transmit the images to a video monitor, which the surgeon uses to look inside the body. Carbon dioxide gas is used to extend the abdomen, to give the surgeon room to see the organs. The surgeon can move the laparoscope around the abdomen, to look for endometriosis. They may make another small cut to insert surgical instruments to treat the endometriosis or they might remove part of it to be examined at a later stage, this is known as a biopsy. After the procedure, the gas is removed.  

M

Menopause When a woman’s ovaries stop functioning and her periods stop. This can either be artificially induced through drugs or a hysterectomy, or happen naturally.

Menorrhagia Heavy periods. 

Menstruation The monthly cycle where the body prepares for pregnancy. Every month a woman’s body goes through hormonal changes. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilized egg. If pregnancy does not occur, this lining will break down and bleed – this is then released from the body as a period.  

Miscarriage Spontaneous loss of a foetus from the womb.

N

Nausea Feeling sick or queasy and needing to vomit.

Navel The belly button, otherwise known as the umbilicus.

Neurectomy The removal of a nerve, can be done to help relieve pain. 

Neuropathic pain  Pain caused by damage to the nervous system, which affects its ability to perceive pain. This pain is usually chronic and lasts longer than the time taken for damaged tissue to heal. It can be treated with pain modifiers such as anti-depressants or anti-convulsants. Please see our pain relief section for more details.

NSAIDs such as Ibuprofen, Voltarol and Ponstan (mefanemic acid) block the production of prostaglandins in the body. Prostaglandins occur naturally, in response to injury or disease, and cause pain and inflammation. They have a number of functions including making the womb contract during a period (which helps with the shedding of the womb lining). These contractions can cause pain. It is thought that women with endometriosis may produce more prostaglandins than women without the condition.

O

Obstetrician A doctor who specialises in delivering babies and monitoring pregnancies.

Obstruction When something is blocked (obstructed) e.g. the bowel.

Oestrogen  The female sex hormone produced in the ovary. It is produced in response to hormones (FSH and LH) released from the pituitary gland and controls the female sex characteristics, e.g. breasts. It is responsible for the growth of womb lining. 

Oligomenorrhea Infrequent periods

Oophorectomy The removal of one or both of the ovaries. When both ovaries are removed, the surgical procedure is called “bilateral oophorectomy,” whereas the removal of only one ovary is called “unilateral oophorectomy.” When both ovaries are removed, a woman will experience an instant and irreversible menopause, and will be unable to have children. Women under 50 who haven’t already had a natural menopause, that have an oophorectomy, will need to take some form of hormone replacement therapy (HRT), as the oestrogen produced by the ovaries is responsible for stopping the bones from thinning.

Osteoporosis A disease where the bones lose density, become thin and brittle and break easily. Having osteoporosis makes a person more likely to break their bones frequently and they take longer to heal. It can also lead to changes in posture – notably the formation of a hunched back. 

Ovaries The organs that produce eggs in the female body.

Ovarian cyst A growth in or on the ovary, filled with fluid. Called an endometrioma, when caused by endometriosis and filled with dark, old blood.

Ovarian Hyperstimulation Syndrome A side effect of fertility treatments that stimulate the ovaries to produce follicles (eggs). It can be life threatening. It occurs when too many follicles (with eggs) are produced.

Ovarian failure  When the ovary no longer responds to the hormone FSH and does not produce follicles (with eggs) – either because it is damaged or hasn’t formed properly or has no eggs left. This can be spotted by a blood test in which the FSH in the blood is raised. 

Ovulate/ovulation  When the egg is ripe and is released from the ovary. The follicle surrounding it breaks open and it will travel into the fallopian tube, to wait for fertilisation. If the egg then becomes fertilised it will travel into the womb and implant.

P

Pain The body’s response to damage or injury. It is subjective and everybody has different tolerances of pain. It is a message that travels through the nerves into the brain and is there as a defence mechanism - to alert us to when something has happened to us. It can range from mild discomfort to agony. Pain can be classified as acute or chronic; pain is usually defined as ‘chronic’ when it lasts 6 months or longer. Definitions of pain include, neuropathic, chronic, and visceral (coming from the organs).
  
Pelvic Inflammatory Disease (PID)  A ‘catch-all’ description for an infection in the pelvic area (around the fallopian tubes, ovaries etc). It can be caused by various bacteria – including developing from the sexually transmitted disease, Chlamydia. It can lead to damage of the pelvic organs, cause ectopic pregnancies, other complications and eventually cause infertility if serious or left untreated.
   
Peritoneum The thin tissue that covers the walls of the pelvis and abdomen on the inside, as well as the pelvic organs.

Physiotherapist A specialist healthcare professional who treats patients with exercises, activities and physical manipulation. Physiotherapists treat muscles and joint problems. They can be seen privately or under the NHS (with a referral from your GP).

Pituitary gland The area of the brain that acts as the ‘control centre’. It controls all hormonal functions, including reproductive organs.

Polycystic Ovarian Syndrome (PCOS) A condition found in women which results in the excess production of male sex hormones (androgens). It results in the presence of small cysts in the ovaries. Though PCOS can appear without any symptoms, some of the symptoms are irregular periods, excessive weight gain, acne, and excessive hair growth. It has been linked to problems with insulin and is sometimes treated with insulin medication.

Polyp  A polyp is a small growth of tissue (a tumour) inside the body. They can be benign or malignant.

Pouch of Douglas  The area between to womb (uterus) and the rectum (bottom). Another name for this is “Rectouterine pouch”. Endometriosis can grow here and be hard to find during a laparoscopy.  Having endometriosis here can cause the symptoms of painful sex. 

Pregnancy When a baby develops inside the womb, from being an embryo to developing into a foetus. Pregnancy lasts for nine months until the woman gives birth.

Premature menopause  Menopause that occurs naturally before the age of 40. Also known as premature ovarian failure.

Premature ovarian failure  A condition where the ovary runs out of eggs before the woman would normally go through a menopause.

Presacral neurectomy  A procedure where the nerves behind the womb are cut – the aim fo this to stop or reduce pain.

Progesterone  A female hormone which prepares the womb lining (endometrium) to receive and hold the fertilized egg to allow pregnancy.

Progestogens/Progestins  These are synthetic (artificially created) hormones that produce similar effects to progesterone. They are used most commonly in contraceptives but also as a treatment for endometriosis as they have an ‘anti-oestrogenic’ effect on the body which can shrink endometrial tissue; they can have severe side effects.

Prostaglandin  A substance that has a large number of functions in the body. It allows for the contraction and relaxation of muscle, the control of cell growth, the dilation (increasing) and constriction of blood vessels, control of blood pressure, and creation of inflammation. Prostaglandins cause the womb to contract and cause cramping. They can affect the spinal nerve and cause pain. In endometriosis, the endometriosis deposits are said to secrete (expel) prostaglandins which cause pain & inflammation.

Puberty  The time of life when the body begins making adult levels of sex hormones (oestrogen or testosterone) and starts developing adult body characteristics: developing breasts, growing facial and pubic hair, starting periods etc.

Q

 

R

Rectum The last 6 to 8 inches of the large intestine (bowel). The rectum stores solid waste until it leaves the body through the anus (bottom). 

Reproductive age The time in which a woman can conceive a child – e.g. from the start of periods to the menopause.   

Resection  Surgical excision (removal by cutting) of a portion of an organ or other structure.

Retrograde menstruation When you have a period, some of the endometrium (womb lining) flows backwards, out  through the fallopian tubes and into the abdomen. This tissue may then implant itself on organs in the pelvis and grows. It has been suggested that most women experience some form of retrograde menstruation, but their bodies are able to clear this tissue and it does not deposit on the organs. This theory does not explain why endometriosis has developed in some women after hysterectomy, or why, in rare cases, endometriosis has been discovered in some men, when they have been exposed to oestrogen through drug treatments.

S

Salpingectomy The removal of the fallopian tube during surgery.

Side effects Problems that occur when medication or a treatment goes beyond the desired effect or problems that occur as well as the desired effct of the treatment/medication. All medications will have their side effects printed on the information leaflet. If you are ever unsure about this, please speak to your doctor or pharmacists or ring NHS direct (0845 46 47).

Sigmoidoscopy A procedure where a telescope is inserted through the back passage (bottom) and into the sigmoid colon (lower part of the intestine/bowel) to investigate for illness.

Surgery The treating of medical problems or illness through manual treatment – e.g. physically touching or cutting into the body. Usually is done under general anaesthetic or local anaesthetic so the patient doesn’t feel pain during it. Surgery normally carries risks.

Symptom Evidence of disease or illness that is only apparent to the patient. A doctor can see a sign of disease or illness  - for example a swollen ankle, but only the patient will know if it hurts (symptom). Pain is a symptom.

T

Testosterone  See Androgen

Tissue  A group of cells that perform specific functions in the body.  There are four types:

Epithelium - composed of layers that cover organ surfaces such as surface of the skin.
Connective tissue - holds everything together. 
Muscle tissue – parts of the inside of the muscle 
Nervous tissue - Cells which make up the brain, spinal cord and nervous system.  

Transvaginal surgery Surgical procedures carried out through the vagina. The surgeon would insert instruments through the vagina and into the abdominal cavity or womb. Some hysterectomies have been carried out this way. As this means not making an incision into the pelvis, it carries fewer risks.

Transvaginal scan An ultrasound performed through the vagina, using a special vaginal transducer. Transvaginal scans gives better resolution of the ovaries and fallopian tubes. The procedure is usually painless, noninvasive, and safe.

Tumour A mass of cells growing inside the body. They can be benign or cancerous.

U

Ultrasound An investigative procuedure where the inside of the body is looked at (visualised) using high-frequency sound waves. These waves bounce off tissues and organs inside the body. They are then converted into a picture called a sonogram. Ultrasounds allows doctors and their patients to get an inside view of the body in a safe, non-invasive way. Ultrasound is often used to examine a foetus during pregnancy. 

Uterine fibroids  Abnormal, benign (non-cancerous) growths of muscle within the wall of the womb.

Uterine polyps Abnormal, benign (non-cancerous) growths attached to a short stalk that protrudes from the inner surface of the womb. 

Uterosacral ligaments:  The supports that hold the womb in place inside the body. This is a common place to find endometriosis.

Uterus The womb. It is an organ inside the woman’s body which is responsible for carrying a foetus during pregnancy. The lining of the womb sheds every month, in response to hormones, if a fertilised egg is not received. The bottom or opening of the womb is called the cervix.

V

Vagina The muscular canal extending from the cervix to the outside of the body. The vagina allows for the transportation of body fluids (e.g. menstrual or ‘period’ blood or sperm) to and from the womb to the outside of the body. The vagina is also used during sexual intercourse, as the penis is inserted into it.

Vaporisation A method of destroying endometriosis by boiling the deposits with a laser. The heat causes the deposits to turn into vapour and disappear.

W

Womb The uterus. It is an organ inside the woman’s body which is responsible for carrying a foetus during pregnancy. The lining of the womb sheds every month, in response to hormones, if a fertilised egg is not received. The bottom or opening of the womb is called the cervix.

X

 

Y

 

Z

 

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Pain Relief for endometriosis

Heat and comfort

A simple hot water bottle or hot bath may help to reduce pain. Some women also find heated wheat bags to be effective.. Being comfortable and reducing stress will also be beneficial.

Painkillers

NSAIDs such as ibuprofen, naproxen, diclofenac and mefenamic acid block the production of prostaglandins in the body. Prostaglandins occur naturally, in response to injury or disease, and cause pain and inflammation.  They have a number of functions including making the womb contract during a period (which helps with the shedding of the womb lining). These contractions can cause pain. It is thought that women with endometriosis may produce more prostaglandins than women without the condition.

NSAIDs work more effectively if they are taken before the body produces prostaglandins. Many people take NSAIDs as they would other painkillers such as paracetamol. It is best to start taking NSAIDs the day before, or several days before, a period or pain is expected. Common side effects of NSAIDs include nausea, vomiting, diarrhoea, stomach upsets and stomach ulcers. These side effects can be reduced by taking NSAIDs with food or milk. A medication may also be recommended to take alongside NSAIDS to protect the stomach, these are called proton-pump inhibitors.

Codeine-based painkillers are effective painkillers but can cause constipation and gastro-intestinal upset, which may aggravate symptoms in women with endometriosis.

Simple analgesics such as paracetamol can be used to treat mild pain.    

Physiotherapy

Physiotherapists can develop a programme of exercise and relaxation techniques designed to help strengthen pelvic floor muscles, reduce pain, and manage stress and anxiety. After surgery, rehabilitation in the form of gentle exercises, yoga, or Pilates can help the body get back into shape by strengthening compromised abdominal and back muscles.

Pain Modifiers

These drugs work by altering the body’s perception of pain. Tricyclic anti-depressants (example – Amitriptyline) are drugs that are mainly used to treat depression but have been found to have an effect on the nervous system and the way the body manages pain.  The pain messages travel through the body’s central nervous system, but these drugs can help to stop those messages from reaching the brain.

Transcutaneous Electrical Nerve Stimulator (TENS) machines

TENS machines are an alternative to pain killers.  They are small, unobtrusive machines with electrodes that attach to the skin and send electrical pulses into the body. This does not hurt but instead feels mildly ticklish. The electrical pulses are thought to work by either blocking the pain messages as they travel through the nerves or by helping the body produce endorphins which are natural pain-fighters. Some TENS machines can be clipped to a belt. Check with your GP before using a TENS machine as they are not suitable for those who may be pregnant or who have a heart condition.

Pain Clinics

Some hospitals and trusts have specialised pain clinics providing advice and support to people in chronic pain. Ask your GP about a referral to your nearest pain clinic.

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Surgery and endometriosis

As a treatment for endometriosis, surgery can be used to alleviate pain by removing the endometriosis, dividing adhesions or removing cysts.

There are three options of surgery for treating endometriosis:

Conservative surgery

Complex surgery

Radical surgery

Conservative surgery

Conservative surgery aims to remove or destroy the deposits of endometriosis and is usually done via a laparoscopy (keyhole surgery). The surgeon can either cut out the endometriosis (known as excision) or destroy it using heat or laser. Although surgery can provide relief from symptoms, they can recur in time. Please see our factsheet on laparoscopic surgery for endometriosis for more details. 

Read more about how to prepare for a laparoscopy

Watch our video on surgery for endometriosis 

Complex Surgery

Depending on the severity of your endometriosis, you may need to undergo more complex surgery that involves different organs within the body, such as the bowel or the bladder. These types of surgery will often include a multi-disciplinary team such as a colorectal surgeon, and are usually carried out via laparoscopy. Any complex surgery should be discussed thoroughly with your doctor or specialist.

Radical surgery

More radical surgery can be considered if a patient has not responded to drug treatments or conservative surgery and is not planning to start a family. Radical surgery refers to a hysterectomy or oophorectomy.

Hysterectomy is the removal of the womb, and is performed under general anaesthetic. It can be done with or without removing the ovaries. If the ovaries are left in place then the chance of endometriosis returning is increased.  Some women need a further operation to remove the ovaries at a later date. Hysterectomy is not the right operation for everyone and not a decision to make lightly. Consider all options and discuss things fully with your GP or gynaecologist.  Remember that a hysterectomy is irreversible.

Oopherectomy is the removal of the ovaries. When both ovaries are removed, the surgical procedure is called “bilateral oopherectomy,” whereas the removal of only one ovary is called “unilateral oopherectomy.” When both ovaries are removed, a patient will experience an instant and irreversible menopause.

These procedures may be considered for a number of reasons. The decision to have either of these procedures is a big one to make – they are irreversible, so the advantages and disadvantages of each surgery should be discussed in full with your consultant.

For further information on radical surgery, download our resources

Endometriosis Treatment Information Pack

Having a Hysterectomy Information Pack

Surgery for endometriosis Information Pack

As a charity, Endometriosis UK relies on support from people like you. If you found this page helpful please consider making a donation. Thank you.

Seeing a gynaecologist

If your doctor thinks you have endometriosis, they will refer you to a gynaecologist.

You should ask to be referred to an endometriosis specialist wherever possible.

It is important to get the most from your appointment. You can download our useful Consultation Questionnaire to help you remember relevant information that will be invaluable for this consultation. You may have to make some difficult decisions about treatment so it is important that you build a good relationship with your gynaecologist and that you trust them. It is a two-way process and the better you can communicate with your gynaecologist the better your care will be.

During the consultation write everything down to help you remember what has been said. It helps if you can take someone with you for emotional support. Ask that person to write everything down so that you can concentrate on what is being said.

Asking questions

You need to ask questions as well as listen to the gynaecologist. Get everything clear in your mind, do some research on the internet or ring our Helpline (0808 808 2227) before the appointment. The questions you ask can include:

  • What do you think is causing the symptoms?
  • Will you want me to have a scan? What are you looking for?
  • Will you want me to have a laparoscopy?  What are you looking for?
  • Do you think my fertility is affected?
  • How can I control my symptoms?
  • What treatments do you suggest and why?
  • What if this treatment is unsuccessful?

If the gynaecologist suggests surgery you may wish to ask the following questions:

  •  If you find endometriosis, will you treat it at the time?
  • What complications could arise?
  • Under what circumstances would you perform a laparotomy or remove organs?

If you have any concerns about the laparoscopy you should not be afraid to ask your doctor questions. You could also discuss any concerns at your pre-op appointment.

Endometriosis symptoms

Common symptoms of endometriosis

The classic endometriosis symptoms include:
  • Pelvic pain
  • Painful periods that interfere with everyday life
  • Heavy menstrual bleeding
  • Pain during or after sex
  • Painful bowel movements/when having a poo
  • Pain when urinating/peeing
  • Difficulty getting pregnant – up to 70% of those with endometriosis will be able to get pregnant naturally
  • Fatigue, with one or more of the above symptoms

Symptoms vary from person to person, some may have severe and debilitating symptoms, others may have no symptoms at all. Symptoms are not always related to the location, amount or the type of endometriosis. It’s also important to know that endometriosis symptoms can also be symptoms of other health conditions. We recommend that you speak to a doctor if your symptoms are interfering with day-to-day life.

Important to know

Endometriosis is not cancer. It is not a sexually transmitted infection and is not contagious. Endometriosis symptoms can also be symptoms of other health conditions.
 

Symptoms of bladder endometriosis

• Needing to pee more often 
• Pain when peeing 
• Having an urgent need to pee 
• Having trouble emptying your bladder when peeing 
• Blood in your pee 
• Frequent urinary tract infections 
• In rare cases you may have kidney pain 

Symptoms of bowel endometriosis

• Bloating or gas in your tummy 
• Pain in your lower back. 
• Pain during sex. 
• Rectal bleeding while menstruating. 
• Extreme pain when having a poo 
• Digestive pain or symptoms similar to IBS - nausea, diarrhoea, constipation   
 

Symptoms of thoracic (chest) endometriosis

It is rare to have endometriosis in your chest. If you do have thoracic 
endometriosis you may experience:
•    Shortness of breath
•    Chest pain specifically during a period. 
•    Shoulder-tip pain 
•    Shortness of breath 
•    Chest pain during a period 
•    Shoulder-tip pain 

Other symptoms may also be experienced, including:

• Pain starting before periods 
• Ovulation pain  
• Pain on internal examination (i.e smears) 
• Prolonged bleeding  
• Bleeding after sex 
• Feeling faint or fainting during a period

All of the symptoms above may have other causes and may not necessarily be endometriosis. It is important to seek medical advice to clarify the cause of any symptoms. If your symptoms change after diagnosis, discuss these changes with your doctor. If your symptoms are interfering with your day-to-day life, speak to your doctor.

Many people with endometriosis also experience significant bloating around the time of a period. Bloating is common in those without endometriosis too, and bloating that does not go away can be a symptom of other health conditions.

Endometriosis can significantly impact mental health and wellbeing. With treatment, many of these issues can be addressed and symptoms made more manageable. Sometimes it can take time to find a treatment that works for you - keep speaking to your doctor.

Period pain - what is normal?

Period pain can be experienced even without endometriosis. Most cases of period pain are caused by contractions in the uterus - blood vessels in the muscle wall are compressed by these contractions, which temporarily cuts off blood supply to the womb, causing discomfort.

In endometriosis, the pain has a different cause. Endometrial tissue that has grown outside the uterus also breaks down and bleeds during a period - but because this internal bleeding has no way of leaving the body, it leads to inflammation, intense pain and a build-up of scar tissue.

Endometriosis is often characterised by pain in the days before a period begins. Periods become typically very painful - often meaning days off school, college or work. If period pain is preventing you from carrying out your normal activities, please seek medical advice.

Think you might have endometriosis?

If you think you have symptoms of endometriosis, the most important step is to speak to your doctor. Our Getting Diagnosed pages can help you prepare for that conversation.

You can also download our Understanding Endometriosis Information Pack for a thorough overview of the condition.

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