Referral to National Highly Specialised Care (NHV) in endometrial surgery

It has been estimated that about 10% of the female population has endometriosis. Most of these cases involve superficial peritoneal endometriosis. These patients are not part of the NHV mission and should be cared for in their home region.

Up to 10% of endometriosis patients have more severe endometriosis with deep infiltration of varying degrees. Some, but not all, of these may need surgery. In such cases both the assessment, of whether surgery should be performed at all, and the surgery itself are complex and require team efforts, which is why NHV units have been created.

Endometriosis patients with the conditions listed below and where there is an indication for surgery to be referred to an NHV unit for a definitive decision on surgery:

• Patients with proven DIE
• Patients with strong suspicion of DIE
• Patients with endometriosis and persistent pregnancy wish
• Patients with known DIE who were previously considered for surgery but the situation has changed/deteriorated or are due to undergo hysterectomy
• Request from fertility unit for salpingectomy of a sactosalpinx for IVF in endometriosis. 

Remismall till endometrioscentrum (pdf) (Referral template to endometriosis centre)

NHV referral must be fully completed. The referral is common to all four centres (Uppsala University Hospital, Södersjukhuset in Stockholm, Sahlgrenska University Hospital in Gothenburg, Skåne University Hospital in Malmö/Lund). MRI should be done at the place of residence, especially if bowel involvement is suspected.

After referral assessment and if the patient is considered to fulfil the requirements for the NHV mission, the patient is called for an outpatient visit within 90 days, where a qualified ultrasound is also planned. Decisions on possible surgery are taken at multidisciplinary surgical and medical conferences. Specialist care referral is a requirement.

Referrals that are not NHV 

If we find that there is no evidence in favour of DIE or that the requirements of Socialstyrelsen are met, we will generally respond directly to the referral without seeing the patient but with advice to the referrers.

Who should not be referred to us?

If the referrer does not find evidence of DIE, but considers that investigation with diagnostic laparascopy is needed to establish a diagnosis of endometriosis, the patient can be managed by their home hospital. 

After surgery

After surgery, the patient receives an individualised care plan - including information on hormonal treatment, post-operative pain relief, its tapering schedule, the need for complementary interventions, etc.

Follow-up is done according to the guidelines. The unit's contact nurse will call the patient three weeks after the operation for a follow-up call. A final return visit or telephone follow-up with the doctor is planned for 3-6 months later. We take care of the post-operative follow-ups until a final return visit to the doctor, 3-6 months after the operation.

Recommendations for further care are then planned. Follow-up is also done via the Gyn-Op registry questionnaire (8 weeks and 1 year). Most patients will be referred to outpatient care (inpatient) for possible further checks and prescriptions.

Authorisation to perform advanced surgery for endometriosis

According to a decision by Socialstyrelsen, four units in the country have been authorised to perform advanced surgery for endometriosis since 1 January 2021.

The four units with NHV missions are:

• Uppsala University Hospital, Uppsala
• Södersjukhuset, Stockholm
• Sahlgrenska University Hospital, Gothenburg
• Skåne University Hospital, Malmö/Lund

The mandate is clearly specified by Socialstyrelsen and includes endometriosis surgery when deep infiltrating endometriosis (DIE) is detected or strongly suspected.

According to Socialstyrelsen's decision, all surgery for the following conditions may only be performed at designated NHV units:

• Verified deep infiltrating endometriosis (DIE)
• Endometriosis in fertile patients
• Endometriosis of the abdominal wall
• Endometriosis in fallopian tubes with known or suspected adhesion formation
• Bilateral endometriosis in everyone at surgery
• Patient with endometriosis undergoing hysterectomy and/or bilateral SOE with suspected or verified, pronounced adhesions in the small pelvis, called "frozen pelvis".

All four NHV units are required to have a team around patients, which includes consultant gynaecologists, midwives, nurses, physiotherapists, pain specialists and midwives specialising in sexology. The team sometimes also includes consultants in colorectal surgery, urology, radiologists, plastic surgeons, psychologists and psychiatrists.

All NHV units also have cooperation with a fertility clinic.  

Socialstyrelsen will annually monitor the number of patients assessed, operated on, the region they come from, the operations performed and complications. This information is reported on Socialstyrelsen website.

How we work at the endometriosis centre

The Endometriosis Centre is outpatient based and has no inpatient beds of its own. Postoperative care is provided in our general obstetrics and gynaecology ward.

The idea is that the Endometriosis Centre will support the medical treatment of patients with more complicated endometriosis and more complicated surgery. A prerequisite for effective collaboration on these patients is that the referring doctor - who should have gynaecological expertise - has the main responsibility for the patient's care and, as far as possible, initiates and follows up the treatment proposed in the referral from the endometriosis centre. We generally do not take over responsibility for endometriosis patients living in other regions, nor for patients in Uppsala County if there is already an established contact with a gynaecology clinic.

Primary investigation of possible endometriotic disease takes place in the home region. By the time the patient is referred to the Endometriosis Centre, the diagnosis must be verified and the patient must have tried at least some of the most common hormonal treatments. A referral to us should include a summary of the patient's medical history of no more than two A4 pages and copies of relevant surgical reports and X-rays. Please state if the patient has had an MRI scan or if such a scan with an endometriosis protocol is requested during the visit here at Uppsala University Hospital. We can then either request MRI images for a second opinion or try to coordinate the visit date with the hospital radiology department.

The special referral form common to all NHV units in Sweden is used for patients referred for NHV endometriosis surgery. Please note that the NHV mission is intended to equalise geographical and competence differences in endometriosis care and that patients may therefore be referred within Sweden between NHV units.

Head of services for the NHV endometriosis programme

Gudlaug Sverrisdottir, Head of Women's Health Care at Uppsala University Hospital