Introduction

Today’s post is an important one for anyone with vulvar lichen sclerosus (VLS). There may come a time when you need a genitopelvic surgery or procedure, either for VLS or something else. But before undergoing any procedure, you will want to consider several things to ensure that things go as smoothly and safely as possible. We share how to vet potential surgeons, questions to ask, pre and post-operative advice to consider, and more. So, before you have surgery for vulvar lichen sclerosus or any other genitopelvic condition, read this!

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Genitopelvic Surgery

At some point, you may need a genitopelvic surgery or procedure, either relating to or not relating to VLS. Such surgeries and procedures include (but are not limited to):

• Clitoral or vulvar lysis of adhesions,
• Vulvectomy (partial or complete removal of the vulvar skin, often due to pre-cancerous conditions or cancer),
• Hysterectomy (either of the uterus, the uterus and cervix, or the uterus, cervix and surrounding tissues),
• Cervical surgery (e.g., removal of abnormal cervical tissue),
• Sacrocolpopexy (surgical repair of vaginal vault prolapse),
• Cystocele repair (correction of a herniation of the bladder into the vagina),
• Oophorectomy (removal of one or both ovaries),
• Enterocele repair (correction of herniation of the small intestine into the vagina),
• And many more.

Regardless of the surgery/procedure, if you have VLS, you will want to consider some extra steps to ensure it goes as smoothly as possible.

We at LSSN have witnessed stories where folks went in for both VLS and non-VLS-related surgeries and procedures and were left injured/harmed and we do not want anyone else to go through this.

With that, some tips/advice to consider before your surgery/procedure.

Vet your Surgeon

Always Vet Potential Surgeons

I cannot stress enough how important it is to vet your surgeons. Surgery is an invasive procedure and one that comes with risks (especially if you are having surgery performed on the clitoris). You want to make sure they are an experienced surgeon. How can you know if they are an experienced surgeon? Vet them ahead of time and ask them questions ahead of time.

For surgeons doing a surgery/procedure for VLS, ask:

• Have you performed the surgery before?
  • If so, how many surgeries have you performed?
• Do you have many patients with VLS?
• Do you feel comfortable operating on someone with LS?
• What is your success rate for this surgery?
• What are the risks of the surgery?
• What measures do you put in place to ensure I do not re-fuse?
• You can email these questions to your doctor ahead of time to make sure you go with a skilled surgeon who has experience with VLS and has performed many of these surgeries.

For surgeons doing a surgery/procedure for something not relating to VLS:

• Are you familiar with VLS?
  • If not, are you willing to learn as you may need to take extra precautions to protect my skin during the surgery/procedure?
• Are you willing to consult with/talk with my VLS team to ensure my condition remains stable and risks are reduced?

Consult with Your Vulvar Lichen Sclerosus Team

Before the surgery/procedure, inform all members of your VLS team. We all will have different types of healthcare providers on our VLS team and this is OK. Some have a dermatologist and general physician, some have a gynecologist and a pelvic floor physical therapist, others have a vulvar specialist, a pelvic floor physical therapist, and a sex therapist, etc. Inform them all about the procedure so that they can best advise on what to do before and after the surgery/procedure. Ask them if they have any questions or concerns you should express to the surgical team before the surgery/procedure.

Communicate Your Condition and Ensure All Members of the Surgical Team are Aware

Ensure that all members of the surgical team are informed that you have VLS. Specifically, they must understand that VLS can be fragile, and prone to tearing and injury. Emphasize the importance of being gentle and taking extra care when working around/manipulating parts of the vulva. Inquire if a scrub will be performed on the vulva, and if so, insist that the individual performing the scrub be experienced and do so with great care to not damage the vulvar skin (build this into your written consent form). 

Informed Consent

Informed consent is a process by which a fully informed patient can participate in choices about their health care. It originates from the legal and ethical right the patient has to direct what happens to their body and from the ethical duty of the physician to involve the patient in their health care.

Before any surgical procedure, patients are typically required to sign an informed consent form. This document serves several important purposes:

• Information Disclosure: The form provides detailed information about the proposed surgery, including the purpose of the procedure, potential benefits, and the risks and complications that may arise. It also outlines alternative treatments, if any, and the risks associated with not undergoing the surgery.

• Understanding: By signing the form, the patient acknowledges that they have received and understood the information provided. This understanding is often confirmed through discussions with the surgical team, including the surgeon, anesthesiologist, and nursing staff.

• Voluntary Consent: The patient must give their consent voluntarily, without coercion. They should feel free to ask questions and express concerns before agreeing to the surgery.

• Authorization: The informed consent form serves as authorization for the medical team to proceed with the specified procedure. It is a legal document that protects both the patient and the healthcare providers.

• Documentation: The signed form is a record that the patient has been informed of the nature of the procedure, potential risks, benefits, and alternatives, and has given consent for the surgery to be performed.

• Risk Management: In the event of an unexpected outcome or complication, the informed consent form can be reviewed to ensure that the patient was adequately informed of the risks and that they consented to the procedure with this knowledge.

Special Notes on Informed Consent

It’s important to note that informed consent is an ongoing process, not just a single event. If your condition changes or if there are significant changes to the proposed procedure, the healthcare team must update you, and additional consent may be required.

If possible, ask to have the fact that you have VLS and that the surgical team needs to be gentle and mindful in touching and manipulating the parts of the vulva (including any scrubs to be performed) built into the informed consent document.

Discuss Surgical Implications

VLS can affect the elasticity and blood supply of the skin, which may impact wound healing. Discuss with your surgeon and your VLS team how your condition may affect the surgery and recovery process.

Preoperative Skin Management

Continue to use your prescribed topical treatments (such as corticosteroids or calcineurin inhibitors) as directed by your healthcare provider. These treatments can help manage inflammation, which may improve healing after surgery.

Medical advisory board member, Dr. Jill Krapf, notes: “VLS must be in remission (no active inflammation) in order to do an elective procedure, such as lysis of vulvar adhesions”.

Ask your surgeon if any part of your VLS treatment and care plan (e.g., steroids, calcineurin inhibitors, topical estrogen/testosterone, emollients, barrier creams, etc.) needs to be stopped or modified before and after surgery. Discuss any changes with your VLS team so they can best support you through this stage.

Postoperative Skin Management

Follow postoperative care instructions carefully. This may include wound care, pain management, and resuming topical treatments as advised by your surgeon. Ask them before the surgery/procedure about when you can resume treating with topical corticosteroids, as they can have a very slight delayed healing effect. You may also want to enquire about whether you can still soak or whether you should refrain until you are healed. 

Discuss any lifestyle modifications that may be required post-surgery/procedure with the surgeon before the procedure. Make any necessary lifestyle adjustments recommended by your healthcare provider, such as avoiding activities that could irritate the surgical site or exacerbate LS symptoms.

Make sure you have a plan in place if you flare post-surgery/procedure; we recommend discussing this with your VLS care team.

Pain Management

Discuss pain management strategies with your healthcare provider/surgical team. You may require more aggressive pain control due to the sensitivity of the affected area (remember, we all experience pain differently). One of our medical advisory board members, Dr. Jill Krapf, notes: “If there is pelvic floor muscle tightness, this can also flare symptoms after surgery. In these cases, pelvic floor physical therapy techniques and muscle relaxants may be helpful”.

Psychological Support

Surgery and chronic conditions like VLS can be stressful. Consider seeking support from a counselor or support group to help manage the emotional and psychological aspects of the surgery/procedure and your healing journey. 

Follow-Up Appointments

Attend all scheduled follow-up appointments to monitor your recovery and address any issues that may arise.

Conclusion on Before You Have Surgery With VLS, Read This!

In sum, healing from surgery can take time, especially with a condition like VLS. Be patient with yourself and your body as you recover. Save this post and re-read it before any genitopelvic surgeries and procedures to reduce any risks and help things go as smoothly and as safely as possible.

Share your thoughts and experiences in the comment section below. 

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