By Joshua Gonzalez, MD
After reading my last post, Jagged Little Pill, many of you who have had similar suspected OCP-related problems may be thinking there’s no hope. Trust me, you are not doomed if you’ve ever taken an oral birth control and you have symptoms of vulvodynia. My goal this week is to reassure you that you’re not alone and that there are many resources and solutions available to you.
Find the right provider.
Once you recognize that you may be suffering from vulvodynia/vestibulodynia, interstitial cystitis, recurrent infections, or any other symptoms or conditions you think may be related to your hormonal birth control, say something. Bring it up with your provider. Voicing your concerns is the first step. As I alluded to last week though, you speaking up may sometimes fall on deaf ears. But that doesn’t mean you should stay quiet.
Much of the attention regarding the adverse effects of OCPs focuses on nausea, headache, breakthrough menses, breast tenderness, or blood clots. Many prescribers of OCPs don’t bother to ask if you’re having pain with intercourse. As long as you’re not getting pregnant, they don’t really care. Some feel uncomfortable asking; others simply don’t want to hear about it. Still others may not recognize the aforementioned symptoms as being at all related to oral contraceptive pills. But that doesn’t mean it isn’t happening to you. If you don’t feel heard by your physician or health care provider, find someone that will listen.
Finding that special someone may mean having to think outside of the box. There are a myriad of providers out there that see patients just like you all the time: internists, gynecologists, urologists, pelvic floor physical therapists, psychologists and psychiatrists, and endocrinologists. Seek these providers out. Heck, seek out more than one. Sometimes it takes more than one provider to provide solutions; to resolve these issues, it often takes a village.
There’s plenty of resources online. Read blogs, search for forums with patients reporting similar symptoms, get informed. You can’t believe everything you read, but there are plenty of national and international societies out there that offer reliable information.
One easy place to start is this very blog. Others have previously written on the topic of oral contraceptives and their potential harm. Drs. Goldstein, Krapf, and Belkin wrote a great piece outlining the differences between different OCPs and discussing some of the potential factors that may predispose certain women to harm after using these medications. Check it out here.
The International Society for the Study of Women’s Sexual Health (ISSWSH) website is another great place to start (www.isswsh.org). ISSWSH is a multidisciplinary, academic, and scientific organization focused solely on the study of female sexual health. They formed to address needs not being met by other medical societies. On their website, you can search for providers well versed in the management of issues affecting female sexual health. There are consensus statements on specific conditions like vulvodynia, news about the latest scientific happenings in female sexual health, and links to important research articles. But remember that this is a medical society, so some of the information may be a little complicated for the average reader.
Sex Health Matters (www.sexhealthmatters.org) is a fantastic website maintained by the Sexual Medicine Society of North America (SMSNA). Established in 1994, SMSNA is a non-profit organization of physicians, researchers, and other allied health professionals. They focus on both male and female sexual health, but there is plenty of good information on conditions affecting the latter. Learn about hypoactive sexual desire disorder (HSDD) or how acupuncture may help women with vulvodynia. Sign up for their regularly distributed e-newsletter to learn more about issues affecting women’s sexual health. The information here tends to be a little more reader friendly and easier to understand.
If you’re having vulvar or vestibular pain, check out the National Vulvodynia Association’s website (www.nva.org). The NVA is another non-profit organization formed in 1994 that focuses specifically on vulvodynia. Many of their services are restricted to members only but fortunately one of the most valuable parts of the site is absolutely free. Check out the Patient Stories section to hear the experiences of women with vulvodynia, maybe women just like you. You can even share your own story. You can learn about the latest research going on in the study of vulvodynia and even volunteer to be part of future studies. The site also offers useful Self-Help Tips that anyone suffering from vulvodynia will appreciate.
The International Pelvic Pain Society (IPPS) website is also another helpful resource. They offer a wealth of handouts regarding conditions like interstitial cystitis, pelvic floor dysfunction, endometriosis, pudendal neuropathy, irritable bowel syndrome (IBS), and vulvodynia. All of them are informative and meant for you to easily understand. You can search for medical professionals in your area that treat these conditions regularly. You can even link to their Marketplace and purchase books that go into more detail about pelvic pain.
Many women with pelvic pain have undiagnosed pelvic floor disorders and may also need to see a pelvic floor physical therapist. Pelvic Guru (https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/) created a thorough resource to help people find a the right PT in their area.
I provide all of this information primarily to demonstrate that you’re not alone. There are patients suffering out there just like you. There’s whole societies and associations established to conduct research on these very topics. All you have to do is look.
Before you start the road to recovery, you have to figure out what the problem is first. You need a proper diagnosis because not every woman experiences the same adverse effects of OCPs. Skillful providers will likely need to do a careful evaluation and may need to perform some diagnostic tests. This can include blood tests to measure specific hormones like testosterone, estradiol, and progesterone. A pelvic floor physical therapy evaluation should also be completed. Your providers will need to take a careful history and learn about when your story started and how it developed.
Once the evaluation and testing is done you should have a diagnosis. Is it pelvic floor dysfunction? Is it a hormonal problem? Is it interstitial cystitis? Maybe it’s all three. The point is you need to have a diagnosis before you can get the right treatment.
First things first, get off your OCP. I don’t mean to imply you should abandon contraception altogether, but find an alternative. There’s plenty out there. For instance, the American College of Obstetricians and Gynecologists (ACOG) published a Practice Bulletin in 2011 stating: Intrauterine devices (IUDs) and contraceptive implants, also called long-acting reversible contraceptives (LARCs), are the most effective reversible contraceptives (1). So talk to your doctor about LARCs. They are widely under-utilized largely because women aren’t told about them or have heard horror stories that are based on older contraceptive options or are grossly inaccurate. Bottom line: you need to find something else.
Once the OCP is gone, you need to figure out what additional treatment might be needed. As I mentioned just stopping your oral birth control pill will often not resolve the problem completely. Not every woman will need the same treatment, so it’s important that your provider(s) come up with a comprehensive strategy tailor made for you. As I said before, it takes a village. To get better you will likely need a physical therapist, you might need topical and/or systemic hormonal treatments, you might need a pain specialist, or you might need all of the above. The best and most informed clinicians who work in this field already know this so don’t be surprised if they recommend you see another specialist.
The most important part of starting treatment is to remain patient. You may have been dealing with some of these issues for months, years, even decades. It can be incredibly frustrating, I know. But once you are plugged into the right providers, trust them. These problems likely didn’t occur overnight and won’t get better that quickly either. I reassure my female patients all the time to hang in there. I promise that we will work together and bring in anyone necessary to help fix their problem. You can and will get better with the right village behind you. It just takes time.
Here’s just one example:
Remember CL from the last post? After spending years of not finding answers and coping with continuous vulvar and vestibular pain, she was referred to Pelvic Health and Rehabilitation Center. Thankfully PHRC helped CL address her pelvic floor muscle dysfunction over several months. PHRC asked the right questions, learned of CL’s previous OCP use, and suspected that her issues went beyond the pelvic floor. They astutely referred her to my office for a hormonal work up. CL had improved with physical therapy, but she still didn’t feel right. After performing my own careful exam and running some standard hormonal blood tests, I diagnosed her with hormonally mediated vestibulodynia. CL was started on systemic testosterone therapy and a local hormonal cream to improve the health of her irritated tissues. She continued with physical therapy and continues to improve today.
I did not write this to imply that every woman who ever took an OCP is going to have problems or that every case of vulvodynia stems from OCP use. My point is to suggest that it’s a possibility. We have some data indicating certain pills are worse than others but the risk is always there. With other forms of contraception out there, why are we still so quick to push The Pill? Especially if ACOG has published a bulletin stating that IUDs and other LARCs are more effective anyway. Why aren’t more clinicians discussing the potential risks of vulvar and vestibular pain with women? Certainly if women knew this was a possibility they might think twice about trying an OCP and might ask their physician to suggest an alternative. I hope this blog has been informative and thought provoking and forced you to question the purported “safety” of a medication that is prescribed to millions of women, young and old, every year.
In 2015 an International Consensus Conference on Vulvar Pain was held to examine levels of evidence surrounding causes of vulvar pain and associated factors. During this meeting, it was decided that hormonal insufficiencies can cause vulvar pain. The details and resource list have been published in three locations, the references are listed below.
American College of Obstetrics and Gynecology: http://www.sophiebergeron.ca/images/publications/Bornstein_2015_ISSVD.pdf
American College of Obstetricians and Gynecologists. ACOG Practice Bulletin No. 121: Long-acting reversible contraception: Implants and intrauterine devices. Obstet Gynecol. 2011 Jul;118(1):184-96