What is Endometriosis?

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1 What is Endometriosis? Obstetrics & Gynaecology Women & Children s Services This leaflet has been designed to give you important information about your condition / procedure, and to answer some common queries that you may have.

2 What is endometriosis? Endometriosis (pronounced en- doh mee tree oh sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity. 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. In endometriosis, cells like the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue. What are the symptoms of endometriosis? Endometriosis can have a significant impact on a woman s life in a number of ways, and may present with a number of different symptoms though some women may not have any symptoms at all. The following symptoms may be caused by endometriosis including: Chronic pain Fatigue / lack of energy Depression / isolation Painful periods Painful intercourse Some women may only experience nonspecific symptoms such as bloating, nausea and vomiting. Endometriosis may significantly adversely affect the outcome of fertility depending on its severity. How does it produce symptoms? Endometriotic cells that have implanted and grow outside the uterus respond to hormones that are produced during a woman s normal menstrual cycle. Just as the endometrial tissue inside the uterus bleeds monthly, so do the deposits outside the uterus (womb). The endometriotic deposits bleed, irritating the surrounding tissue and then heals over by scarring. The scar tissue may form into a tender nodule or, if the endometrial tissue is in the bowel or bladder, it may cause bleeding when passing urine or stools at the time of a period. Adhesions, (scar tissue) formed as a result of endometriosis, may cause fixation of the normal movement of some organs such as the bowel and this will usually result in pain. How is the diagnosis made? Internal (vaginal) examination revealing a fixed uterus, tender support ligaments of the uterus or enlarged painful ovaries suggest endometriosis. Visible endometriotic nodules

3 can also sometimes be seen in the vagina or on the cervix (the neck of the uterus). Ovaries that are enlarged by endometriotic deposits (called endometriomas) can usually be diagnosed by ultrasound or other imaging techniques. However visual inspection of the pelvis by a laparoscopy, (an operation at which a telescope is inserted into the tummy when you are asleep), is the best way to make a diagnosis of endometriosis. How is endometriosis treated? If you have been diagnosed with endometriosis, your doctor or specialist should discuss possible endometriosis treatment options with you. Currently, there is no cure for endometriosis. The different treatments available for endometriosis aim to reduce the severity of symptoms and improve the quality of life for a woman living with the condition. The type of treatment you receive for your endometriosis should be decided in partnership between you and your healthcare professional. Your healthcare professional will consider many different factors when working out the best endometriosis treatment method for you, such as your age, the severity of endometriosis you have and the severity of your symptoms. We do not recommend any particular treatment for endometriosis, but support patients seeking treatment options appropriate to their individual circumstances. Treatment options available to women with endometriosis are: Surgery Hormone treatment Pain relief Medical Therapy Drug treatment may include analgesia (pain relief tablets) or hormone therapy. Analgesia that helps to control pain in endometriosis may include paracetamol, codeine phosphate and drugs that will suppress the pain of painful periods like ibuprofen (Nurofen), mefanamic acid, or diclofenac (Voltarol). This is useful in patients who are desirous of pregnancy or prior to surgery. The mainstay of treatment is surgery but medical therapy may be the choice if there is delay in surgery especially in the early stages of the disease. Medication should be taken as per the manufacturer s instructions. Hormonal medication prevents cyclical bleeding and can make endometriosis tissue become inactive and this may help to improve symptoms. Hormones may be administered in the form of progesterone tablets or the oral contraceptive pill. Either of these is usually taken for 6-9 months without a break. This may mean that you do not have a monthly bleed - this is not abnormal and may in fact help to reduce new endometriotic tissue growth by reducing backward menstruation. Hormonal treatment for endometriosis can also be delivered by the Mirena intrauterine coil and there is good evidence that symptoms from pelvic endometriosis are improved. Another type of hormone prevents oestrogen production from the ovaries, thereby stopping stimulation of endometriotic tissue. These drugs are called Gonadotrophin Releasing Hormone Analogues (GnRHa). GnRHa is an injection administered on a monthly basis for 6 months. Longer use may result in thinning of the bones though this can be prevented by the additional administration of hormone

4 replacement therapy (HRT). This may extend overall treatment with GnRHa to 9 months or longer. HRT may also help to make some of the side effects of GnRHa treatment which are similar to the menopause less intrusive. These include hot flushes, night sweats, mood swings and headaches. Though up to 7 in 10 patients will have improvement of their endometriois - associated pain the benefits may be short lived. Medical treatment suppresses endometriosis symptoms but annual recurrence rates are 5-10% with recurrence rates of up to 75% after 5 years. Medical treatment is most effective in early stage disease, 2-3 months prior to surgery for advanced disease and after the operation to treat remaining invisible endometrial deposits. Medical treatment has not been shown to be effective in the treatment of endometriosis associated infertility. Surgical Therapy The aim of surgery is to remove or destroy as much or all of the visible / palpable endometriosis to improve pain or help fertility. Surgery offers more long term and effective treatment for endometriosis without the unpleasant side effect of medical therapy. Conservative (uterine and ovarian sparing) surgery for endometriosis is ideally performed by the Laparoscope laparoscopic (keyhole) surgery. Endometriotic deposits and scar tissue can be cut out or diathermised with cautery (heat) or laser, whilst endometriotic cysts of the ovaries can be drained and treated. Surgery may also help women who have infertility by releasing scarring around the fallopian tubes or the ovaries. The procedure, risks and recovery from laparoscopic surgery are as outlined in the leaflet on laparoscopic surgery. In the very severe type of endometriosis affecting the ovary, removal may be inevitable though the ovary can be conserved especially in the reproductive age group. Nevertheless some women who have completed their families and have severe endometriosis are best treated by a hysterectomy and removal of both ovaries. Hysterectomy is usually combined with excision of all endometrial implants to improve the benefits of the surgery. Endometriosis can be quite a difficult condition to treat. Even though medical or surgical treatment may initially cure your symptoms, it is not unusual for similar presenting symptoms to return after a while. If this happens to you, you will probably need further treatment and should make an appointment to see your General Practitioner for another referral to your Gynaecologist. Treatment of Ovarian Endometriosis When endometriosis affects the ovaries it may present as deposits on the surface or by ovarian cysts called endometriomas. Implants on the surface of the ovary can be burnt or cut off with diathermy or laser. Endometriomas can be treated by aspiration drainage of the cyst alone, or by aspiration and diathermy or stripping / excision of the cyst wall. Studies show that recurrence rates are highest with just aspiration alone (about 80%). Furthermore pregnancy rates in infertile women are highest with excision. Laparoscopic surgery is the ideal way of treating ovarian endometriosis. Occasionally your doctor may advise that the whole ovary needs to be removed if it is very badly

5 affected by endometriosis or that a hysterectomy and removal of both ovaries is the best option for managing your endometriosis. Conclusion Endometriosis affects many women and usually presents with pain or reduction in fertility. It may significantly affect quality of life but the symptoms can be treated by either medication or surgery. Your doctor will discuss the best management option with you depending on your individual circumstances. Concerns and Queries If you have any concerns / queries about any of the services offered by the Trust, in the first instance, please speak to the person providing your care. For Diana, Princess of Wales Hospital Alternatively you can contact the Patient Advice and Liaison Service (PALS) on (01472) or at the PALS office which is situated near the main entrance. For Scunthorpe General Hospital Alternatively you can contact the Patient Advice and Liaison Service (PALS) on (01724) or at the PALS office which situated on C Floor. Alternatively you can nlg-tr.pals@nhs.net Confidentiality Information on NHS patients is collected in a variety of ways and for a variety of reasons (e.g. providing care and treatment, managing and planning the NHS, training and educating staff, research etc.). Everyone working for the NHS has a legal duty to keep information about you confidential. Information will only ever be shared with people who have a genuine need for it (e.g. your GP or other professionals from whom you have been receiving care) or if the law requires it, for example, to notify a birth. Please be assured however that anyone who receives information from us is also under a legal duty to keep it confidential. Zero Tolerance - Violent, Threatening and Abusive Behaviour The Trust and its staff are committed to providing high quality care to patients within the department. However, we wish to advise all patients / visitors that the following inappropriate behaviour will not be tolerated: Swearing Threatening / abusive behaviour Verbal / physical abuse The Trust reserves the right to withdraw from treating patients whom are threatening / abusive / violent and ensuring the removal of those persons from the premises. All acts of criminal violence and aggression will be notified to the Police immediately. Risk Management Strategy The Trust welcomes comments and suggestions from patients and visitors that could help to reduce risk. Perhaps you have experienced something whilst in hospital, whilst attending as an outpatient or as a visitor and you felt at risk. Please tell a member of staff on the ward or in the department you are attending / visiting.

6 Moving & Handling The Trust operates a Minimal Lifting Policy, which in essence means patients are only ever lifted by nursing staff in an emergency situation. Patients are always encouraged to help themselves as much as possible when mobilising, and if unable to do so, equipment may be used to assist in their safe transfer. If you have any questions regarding moving and handling of patients within the Trust, please speak to a member of staff in the ward or department you are visiting. Northern Lincolnshire and Goole NHS Foundation Trust Diana Princess of Wales Hospital Scartho Road Grimsby DN33 2BA Scunthorpe General Hospital Cliff Gardens Scunthorpe DN15 7BH Goole & District Hospital Woodland Avenue Goole DN14 6RX Date of issue: October, 2016 Review Period: October, 2019 Author: Advanced Gynaecology Nurse Practitioner IFP-781 v1.1 NLGHT 2016