Something else? Ask Aunt Vadge – bottom left of your screen!
Stevens-Johnson syndrome (SJS) is a severe reaction to a medication that makes the skin blister and peel. It can also blister mucous membranes, including the vagina, mouth, eyes and urinary tract. If it is going to happen, it usually starts within the first two months of taking a new drug.
SJS is a medical emergency. If you have these symptoms, especially after starting a new medicine, stop and seek emergency care straight away. Early treatment genuinely changes the outcome.
Symptoms of Stevens-Johnson syndrome
- Fever and flu-like symptoms
- Painful red or purple skin that looks burnt and spreads
- Blisters on the skin and on the genitals, mouth and nose
- Painful, red, watery eyes
What triggers SJS
More than 100 medicines can trigger SJS. Some of the more common ones are:
- Allopurinol (a gout medicine)
- Paracetamol (Panadol)
- Ibuprofen (Nurofen) and naproxen, and other anti-inflammatory painkillers
- Sulfonamide (sulfa) antibiotics, such as trimethoprim-sulfamethoxazole
- Some anti-seizure and mood medicines, such as carbamazepine and lamotrigine
Infections such as pneumonia and the herpes virus can also set it off. And some people are more susceptible than others: certain inherited gene variants (some more common in East and Southeast Asian and other populations), a weakened immune system, or recent radiotherapy can all raise the risk.
How SJS is treated
Treatment usually means two to four weeks in hospital, cared for by a specialist team in an intensive care unit or a burns centre. The suspected medication is stopped, and you are monitored, kept hydrated, and have your blisters kept clean and dressed to prevent infection.
You may need a feeding tube for a while if your mouth and digestive tract are blistered and eating is too painful. Recovery takes time and careful, ongoing care.
How SJS affects the vagina and urinary tract
The vulvovaginal effects of SJS are often overlooked, but they can seriously affect quality of life. Labial adhesions, urinary symptoms and painful sex can all follow.1
In the vagina itself, SJS can cause erosive and ulcerative vaginitis, vulval blisters and vaginal adhesions, along with painful sex, bleeding after sex, and narrowing of the vaginal opening.2 These symptoms can take time to heal, and sometimes they show up in the vagina before the skin rash appears.3
If scarring narrows or blocks the urinary or vaginal outflow, urine can be held back in the bladder, leading to recurrent urinary tract infections and dribbling. Trapped menstrual blood can also build up in the vagina or uterus. Because that blood can be pushed backwards rather than draining out, obstruction of this kind is one of the recognised situations associated with endometriosis.
One case report describes a woman given sulfa antibiotics for a urinary tract infection who developed vaginal symptoms, was re-treated, and then went on to a much more severe reaction and a diagnosis of SJS.3
Protecting vaginal health during and after SJS
Because the vaginal lining can blister and then stick together as it heals, getting a gynaecology team involved early matters. During the acute illness, gentle vulvovaginal care and, in some cases, temporarily suppressing periods can help keep the raw surfaces from pooling blood and adhering to each other, which lowers the chance of lasting adhesions and narrowing.2
After the acute phase, follow-up is worthwhile so that any adhesions, stenosis or persistent lesions are picked up and managed. Genital lesions that don’t settle should be reviewed by a specialist, as occasionally the healed tissue needs a closer look.1
This is specialist territory rather than something to manage at home, so keep your dermatology and gynaecology teams in the loop through recovery.
Frequently asked questions
Can Stevens-Johnson syndrome affect the vagina?
Yes. SJS can blister and ulcerate the vulva and vagina, and as it heals it can leave adhesions and narrowing.2 Sometimes vaginal pain and lesions are the very first sign, before the skin rash.3
How are vaginal adhesions from SJS prevented?
Early gynaecology involvement is key. During the acute illness, gentle vulvovaginal care and sometimes suppressing periods can help stop the healing surfaces from sticking together, and follow-up afterwards catches any adhesions or narrowing early.2
What are the warning signs after starting a new medicine?
Fever or a flu-like feeling together with painful, spreading red or purple skin, blistering, sore eyes, and blisters in the mouth or genitals, usually within the first weeks of a new drug. Stop the medicine and seek emergency care.
This article is general information and not a substitute for personalised medical advice. Stevens-Johnson syndrome is a medical emergency: if you are developing these symptoms, seek emergency care immediately.
References
- Byun JM, Jeong DH, Kim YN, Lee KB, Sung MS, Kim KT. Labial adhesions caused by Stevens-Johnson syndrome. Dermatologica Sinica. 2015;33(4):239-240. https://www.sciencedirect.com/science/article/pii/S1027811715000245
- Kaser DJ, Reichman DE, Laufer MR. Prevention of vulvovaginal sequelae in Stevens-Johnson syndrome and toxic epidermal necrolysis. Rev Obstet Gynecol. 2011;4(2):81-85. https://pmc.ncbi.nlm.nih.gov/articles/PMC3218548/
- Mergler R, Chuang M. Stevens-Johnson syndrome with vaginal pain and lesions as initial presentation. Am J Case Rep. 2018;19:1519-1521. https://pmc.ncbi.nlm.nih.gov/articles/PMC6322057/
