In 2010, Tara Langdale-Schmidt, now 31, started feeling a mysterious pain during sex. The pain got worse. And worse. Until finally, it was too bad to even attempt sleeping with her boyfriend.
Eventually Langdale-Schmidt discovered she was suffering from vulvodynia, a surprisingly common, rarely talked about and utterly perplexing disorder that causes tingling, stinging and sometimes excruciating pain in the vulva (the external “lips” around the opening of the vaginal canal). About 6 million women suffer from vulvodynia, according to the National Vulvodynia Association, but doctors don’t know what causes it. Many doctors fail to recognize it in patients, and when they do, treatment can be frustratingly hit or miss.
Langdale-Schmidt and her then boyfriend, now husband, Jason Schmidt, talked to SELF about the painful reality of living with vulvodynia, and how after two years, they—and their relationship—recovered.
SELF: Tell us about what it was like when the symptoms of vulvodynia first started.
Tara Landgale-Schmidt: It started as a mild pain only during intercourse in the vulva. As time when on, the pain became worse, it felt like someone was stabbing me with a knife and burning me at the same time. Intercourse would trigger the pain and it would still burn after we would finish having sex. Nothing helped the pain or made it go away.
SELF: What was going through your mind at the time? How did you first bring it up to Jason and how did it affect your sex life?
TLS: I have had many surgeries for endometriosis and cysts, and one surgery they went in vaginally instead of through my abdomen. I thought that it might have been some sort of scar tissue. I told him it hurt to have sex a little and it might be from prior surgeries.
Jason Schmidt: I felt bad she was hurting and never pressured her to have sex. As time went on, the pain became worse and I didn’t want to hurt her. If it hurt too much we would stop.
SELF: Did you seek treatment?
TLS: I went to my gynecologist that did some of my surgeries when the pain started. He thought it could be scar tissue as well. He told me if sex hurt to drink some wine and take Advil. That was in the beginning stages before the pain became worse. Then he realized it was serious, but still didn’t give me a diagnosis and was confused about what was causing the pain. I actually asked him if I had something called vulvodynia because I found it on the Internet. He agreed that is probably was vulvodynia. He wanted me to try [numbing] creams. I was given a prescription for Gabepentin cream and Ketamine creams. These are compounded creams that might help the nerve pain. I was told to use them twice a day. Both of these creams cost over $125 each and did not help at all. Also, I tried lidocaine injections, which only lasted an hour and left me hurting from the needle.
After that he called several doctors and told me none of them had a treatment plan for vulvodynia. He stated doctors did not know what caused it and he was sorry he couldn’t help me.
After no relief with numbing creams, I decided to go to a pelvic pain specialist. He told me that I could take an antidepressant because it can help with nerve pain, do an injection or have a surgery to remove part of the vestibule that was hurting. None of these options appealed to me and I left empty handed.
SELF: Were you able to talk to friends and family about what you were going through?
TLS: I only told my best friends, and they had never heard of anything like this. I had never heard of it and neither had Jason. I was very open with my friends about it.
JS: I didn’t tell anyone because I felt it was a private issue.
SELF: Did your symptoms change over time?
TLS: They became worse. The burning and stabbing escalated and we would not have sex at all. We were getting married and probably not going to be able to have intercourse on our wedding night. I was becoming depressed over the thought of never being able to have enjoyable sex again.
SELF: And that’s when you took matters into your own hands.
TLS: After suffering for two years, and doing a lot of my own research, I decided to try vaginal dilator therapy. Vaginal dilators are used every day in pelvic floor physical therapy and recommended by doctors. From my previous positive experience using magnets to reduce back and neck nerve pain after a car accident, I had the idea to incorporate neodymium magnets into a dilator set for pelvic pain. So I took a set of dilators and made a neodymium magnet insert to put inside. I used the magnetic dilators for two weeks and then had sex with my husband for the first time in months with less pain than normal.
[Editor’s note: After inventing a vaginal dilator that worked for her, Langdale-Schmidt launched her own business selling the product.]
SELF: How are things now for you, personally?
TLS: Things are great now between my husband and I. If I use the dilator twenty minutes before we have sex, I can have close to pain-free intercourse. During my research I have found vulvodynia can disappear or become less painful. I used to feel broken and now I am hopeful and thankful I have a device that allows me to have intercourse with less pain.
JS: I want to address men who have partners with pelvic pain. It’s not an excuse and the pain is real. These women want to be pain free and have a very hard time with the thought they might not ever be sexually active again. This should not end a relationship. It’s not her fault. Please be patient and supportive.
If you are or suspect you may be suffering from vulvodynia, the National Vulvodynia Association has resources to help you find treatment and support.