Endometriosis is a common condition affecting one in every 10 women, where tissue like the tissue which lines the womb (endometrium) is found elsewhere in the body. Usually it occurs in the pelvis: around the womb, ovaries (forming the cysts called “endometriomas” or “chocolate cysts”), fallopian tubes, in the area between the vagina and the rectum, bowel or bladder.
Sometimes other areas may be also affected, such as the diaphragm (the muscle separating your chest from your abdomen), chest and lungs, belly button, nerves, and scars from previous operations.
Endometriosis can be a long-term condition. In some women it has a significant impact on day-to-day life and emotional wellbeing. Common symptoms include lower abdominal and back pain (often worse just before and during your period), pain during or after sex, pain related to opening your bowels or passing urine, and tiredness.
In some women, it may be associated with difficulty becoming pregnant. However, symptoms are very variable, and some women even with extensive endometriosis do not have any symptoms or problems.
The wall of the womb is made up of two layers. The outer muscle layer is called the myometrium and the inner lining is called the endometrium. Adenomyosis is a condition in which the cells that form the inner lining of the womb (endometrium) are found in the muscle layer (myometrium), where they are not normally present.
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You will need to be referred by your General Practitioner (GP) or consultant to be seen in the Endometriosis Centre.
Once the referral is received, it will be triaged by the Endometriosis team. If the referral is accepted, you will be added to the waiting list for a first appointment with a Clinical Nurse Specialist (CNS). If you need to make enquires about your appointment please call 020 3447 9411 or email uclh.
Due to the high volume of referrals we receive, we are currently only accepting referrals with evidence of deep endometriosis confirmed via scan or laparoscopy. If your referral is rejected, our clinical team will notify your GP.
We have a central booking team who look after new patient referrals. You can contact them via 020 3447 9393 to follow up on the status of your referral.
If you have been referred to a different specialty within UCLH e.g. GI physiology, urology, etc, either by us or by your GP, please contact the relevant department via the contacts provided on your correspondence from them.
If you have not heard from them yet, please ask to be transferred to the relevant team via hospital switchboard (0845 155 5000 or 020 3456 7890). We are unable to help you with queries regarding referrals that are not to the Endometriosis team.
Your first appointment will be with a Clinical Nurse Specialist (CNS). The CNS will take a detailed history, discuss your symptoms and quality of life and explore available treatment options with you.
The demand for endometriosis care is high, and waiting times can vary. The average waiting time for a first appointment is currently around 40 weeks. We are working to reduce this wait time wherever possible.
Before your first appointment, you may be sent a British Society for Gynaecological Endoscopy (BSGE) questionnaire from the administrative team which explores your symptoms and any treatments you may have already tried. It is important that you complete and return this prior to your first appointment in the service. If this is not completed, it could delay the scheduling of this appointment.
If an imaging scan has been requested for you (e.g. MRI), then you will be contacted regarding an appointment by the imaging department with details of the appointment. They will inform you about preparation required before the test (if any).
The imaging team aim to book routine patients within six weeks. A member of the endometriosis team may write to you with your results. Alternatively, these results can usually be discussed with you at your next clinic visit.
If you have any questions about your scan or preparation required, please contact the imaging team directly on 020 3447 9010.
Blood tests and imaging reports are available to see via the MyChart app. Below show the timeframes in which you can expect to receive these results via the app:
- Blood tests – up to four weeks after you have had your blood test.
- Imaging reports – between six-eight weeks after your procedure.
The clinician who arranged the tests will review them and contact you by letter or phone if they have any significant concerns. Otherwise, these results can usually be discussed with you at your next clinic visit.
If the GNrH injection is to be started, a letter is sent to your GP, and copied to yourself advising your GP/practice nurse when to start it.
If this is to be given three - four months before your operation, the admission officers will advise you when to start them once a date has been allocated.
For queries regarding the GNrH appointments, please contact the Endometriosis admin team by calling 020 3447 9411 or emailing uclh.
For clinical queries about GNrH, please contact the CNS team via the email in your appointment letters.
MyChart is a patient portal which gives you the ability to view information about your care including appointments, letters and some test results. We may also send you questionnaires to complete to check in on your state of health. Please do not try to contact us via this app as we are currently unable to reply to these messages.
We strongly recommend that you sign up to MyChart as you will receive instant notifications regarding appointments and may be sent questionnaires relating to your condition via the app.
You can make changes to demographic details e.g. if you move house or get a new phone number by updating the “personal information” section of the app. It is really important to keep us informed of any changes to your personal details. If you change GP, please inform us by emailing uclh.
You will routinely receive a copy of any letters sent to your GP about you either via the MyChart app if you are signed up, or by post.
MyChart is an app which can be downloaded onto your phone via MyCare UCLH.
If you are having any issues accessing MyChart, please email uclh.
Should you require surgery, you will be placed on a surgical waiting list. All patients on this list will be scheduled for a pre-operative assessment prior to surgery. Please note that undergoing a pre-assessment does not necessarily indicate an imminent surgery date. In some cases, multiple assessments may be required to ensure your information remains up to date.
Waiting times for surgery depend on the complexity of the procedure required and theatre availability. For more complex surgeries, coordination with other specialists may be necessary, which could result in longer wait times.
We will contact you via phone to offer surgical dates and aim to provide at least three weeks’ notice.
If you wish to discuss your operation date, please call the admin team on 020 3447 9411 or email uclh.
Please do not email the Clinical Nurse Specialists (CNS) as they are unable to organise operation dates.
Should your symptoms worsen whilst you are waiting for your appointment, please contact your GP or, in urgent circumstances, call 111, attend Accident and Emergency or call 999.
As part of your care pathway, your clinician may place you on a system known as Patient Initiated Follow Up (PIFU).
Under this arrangement, follow-up appointments are not routinely scheduled in advance. Instead, you are encouraged to contact the service to request an appointment should your symptoms change or if you feel you require further clinical input.
This approach is designed to provide timely and appropriate care tailored to your individual needs. Patients are offered a time limited window in which to arrange follow up appointments, at the completion of which they are discharged.
If you have been seen in the Endometriosis Centre, you will have been given a letter with the email of the CNS mailbox. Please use the CNS email provided on your letter.
You should only contact the CNS if:
- You wish to ask further questions about your diagnosis or your treatment plan.
- You have been advised by the doctor to let them know you have completed any further investigations requested.
- You have had your operation and have been seen or admitted back in a hospital elsewhere due to problems or complications.
- Please do NOT contact the CNS to routinely arrange and change your appointments as they will not be able to do this.