Secret Suffering - A resource community for women who experience pelvic and sexual pain

Perhaps one of the most pressing issues for women suffering from
vulvodynia, IC, or both is sex. Talk to any woman suffering from
these syndromes and the topic will eventually turn to sex. Women have
a wide variety of concerns based on their current relationship status
and prior experience. Some of my clients despair of ever finding a
man who will accept them, problem and all. Others worry that their
current relationship will fold under the strain of little sexual
intercourse. Some women have already lost a relationship because of
the issue. There is no doubt that on the list of things to stress
about, sex is at the top.

The tangle of emotions around sex is sometimes hard to unravel. 
Within a relationship, it’s easy to worry about everything on two
different levels - personal and interpersonal. No woman wants to
continue experiencing vulvar and vaginal pain, urinary frequency, or
any other symptom on the list. Women have constant concerns about
their own self, their own personal longing to feel pleasure instead of
pain, and the life they would rather be leading. Piled on top of that
are the worries about their relationship and sex. It’s no wonder many
women find themselves sinking into depression, hopelessness, anxiety,
or panic. I certainly remember feeling all four of those heavy,
painful emotions when I was dealing with IC and vulvodynia.

Many of my clients feel a host of negative feelings because they
cannot have sexual intercourse. It doesn’t take any effort at all for
me to put myself in their shoes - all I have to do is close my eyes
and remember. I used to feel like I was depriving my husband, like I
was no longer a real wife, like I was no longer a real woman, and like
my chances of having children were nonexistent. I worried that my
husband wouldn’t love me anymore if we couldn’t share that bond. I
felt terribly sad about not feeling pleasurable physical sensations in
an area of my body designed for enjoyment.  I thought my life much
less colorful, less vivid without the beauty of physical intimacy.

I thought that acute (vulvar) vestibulitis and vulvodynia were the worst
things that could possibly happen to me. I thought it would ruin my
sex life forever, damage or ruin my relationship, and strip me of the
joy of physical intimacy. I wanted to strangle those medical
professionals who suggested “other means of sexual contact besides
intercourse.” I wanted the whole thing or nothing, and even found it
hard to just cuddle with my husband. The very thought that those
doors were closed to me was so painful I could not stand to face it.

When I look back at my mental state during that time, I imagine horses
escaping from the pen, galloping wildly in every direction. My
thoughts ran rampant in my head, increasing my stress levels with
every new repetition. As I learned mental tools to reduce my anxiety
and help myself deal with the painful emotions, I discovered I had the
power to look at myself from a new perspective. I realized I was
placing an awful burden on my sex life. It had to define my
womanhood, uphold my marriage, serve as my central source for joy,
give me confidence, represent the gift of love to my husband, and
serve as the only form of physical intimacy we shared.

 From this perspective, I saw I was making everything much worse for
myself. The battle waging within me over my inability to have sex was
only adding stress, anxiety, and fresh despair to the emotional
turmoil I felt. I set out to learn how to feel okay about myself and
my womanhood separate from sex. I worked to improve my relationship
with myself and my husband. I allowed myself to accept the situation
for what it was and stopped fighting myself. Arguing with reality was
only bringing me pain.

Looking back, it is easy to see the whole picture. I went through
physical pain and a period of no sex, that’s true. But as I
recovered my health, I discovered myself. I became the best version
of myself - a confident, comfortable, joyful woman. I let myself
learn about me while stripped of everything I thought I needed. In
the end, this was truly a life-changing experience. I believed so
strongly that not having sex was a damaging thing, but the reality was
just the opposite. The experience taught me about myself and gave my
husband and I a reason to explore our relationship to new depths. I
learned how to feel gratitude for the simplest moments, not just the
exciting milestones.

Making friends with the reality of no sex taught me how to accept and
relax just when I think I need to fight. From this mindset, it is
much easier to feel okay, heal mentally and physically, and find some
peace. From this mindset, sex becomes what it is supposed to be -
just another way to celebrate life.

Women who face health issues such as vulvodynia and interstitial cystitis find themselves struggling to live normally while harboring what is often a secret problem. At first, not many of us desire to disclose these health issues, because that would mean talking about something very personal few people have heard of or understand. We may not even choose to talk to our girlfriends about this embarrassing and frustrating problem. As a result, these disorders can feel very isolating. Often, the only person who knows about the issue is a spouse. Relationship difficulties are common as couples face a host of concerns, stresses, and fears around these diagnoses. As a Martha Beck-trained life coach and recovered vulvodynia and IC sufferer myself, I want to address these relationship struggles in a series of columns and provide tips, tools, and help for everyone involved.

Some women worry they’ll never find a man who will understand and be okay with vulvodynia, while others worry their current relationship will end. There a million other worries sandwiched between these two ends of the spectrum, and none of them feel good. For any woman with pelvic pain, worry and anxiety are troublemakers. They create a fight-or-flight response in the body, which increases the heart rate, muscle tension, and the production of certain hormones. None of these side effects help the healing process, and in fact, they primarily prevent the healing process. So learning to release worry and anxiety is of paramount importance for anyone dealing with pelvic pain disorders.

Of course, releasing worry is much easier said than done. As a life coach, I spend most of my time working with clients on negative emotions such as worry, anxiety, fear, doubt, sadness, depression, hopelessness, and panic. The first step to figuring out what to do with these emotions sounds very simple: you must notice you are feeling a negative emotion. It is not nearly as easy as you might think. For example, how many of us have lashed out angrily at a spouse only to realize later he was innocent of all accusations? PMS, anyone?

It is difficult to feel okay in a relationship with another person when you are not okay in your relationship with yourself. Recognizing the emotions you are feeling as you work through ill health and taking responsibility for them is the key to maintaining and creating good relationships. Your spouses or significant other cannot know what you are feeling or thinking. He cannot fix your emotional, physical, or mental state. That is your job, and in fact, your priority.

For example, if your deepest fear is your husband will leave you, you will feel intense worry and anxiety every time you think about this fear. Not realizing you are in this emotional state, you might find yourself snapping at him, feeling irritated with him, crying effusively in his presence, withholding yourself from him, nagging him, and wishing he would just understand, help out more, or change in whatever way you desire. As a result of this, you might spend most of your time with him acting very unpleasantly, creating a feeling of distance between the two of you. He might pull away instinctively to protect his own emotional state, which only feeds your original fear that he will leave. Though this may be the furthest thing from his mind, it is the only thing on yours. By not recognizing your own emotional state and discovering the real issue underneath it, you actually end up moving toward the very thing you fear – the loss of your husband.

If you can identify your feeling and recognize your own anxiety or fear, you are on your way to changing how you react. Knowing you are feeling this way, even if you don’t know why, will help you step back from it and not get caught up in it. You will recognize the irritation inside you when your spouse comes home and says hello. You will see that he simply said hello, and that your irritation comes from your own emotional state. Were you feeling happy, his hello would be perfectly fine and not irritating at all.

This is the first step toward creating harmony within a relationship even during difficult situations. Take responsibility for your own emotions, recognize them, and notice them. Become aware of the multitude of emotions you are feeling right now on a day-to-day basis, and take some time to sit quietly and jot them down. Let yourself sit with these emotions as you write, and describe them to yourself in your notebook. What do they feel like inside you? Do you notice them settling somewhere within your body? Often, this exercise is enough to dispel and release negative emotion, leaving you with enough clarity to see your spouse for who he is. Without your emotion clouding your vision, your relationship will feel much simpler and more straightforward. From this place, you can have calm, clean discussions and connect with each other on a deeper level.

All pain syndromes have a psychological impact, but for pelvic pain sufferers, there appears to be an even greater impact.  Affecting most aspects of their lives (personal, work, relationships, etc.) most patients suffer in secret until the pain is so intolerable that they cannot NOT seek help.  They avoid discussing it any earlier because patients often feel so alone that they do not know where to turn for effective treatments.  Or, when they do finally seek help, diagnostic tests may come up inconclusive, or they feel dismissed by their physician.  Then, the pain may dissipate providing some relief only to return again and haunt such patients. This continuous cycle can feel very defeating.   

For young adults, the experience can be even further difficult as they are unaware that their pain should be any different, or are too embarrassed to discuss it with their health care provider.  When sex is painful, it can be dismissed as normal or occasional.  Young adults also have difficulty explaining pain experiences to their partners because they do not want to be rejected or seen as “defective.” 

Patients are often referred for psychological treatment long after a prolonged history of pelvic pain, which has (understandably!) lead to depression and anxiety.  Stress is a major contributing factor leading to exacerbated pain levels.  When dealt with effectively, therapy can help to calm the patient and provide some hope for the future, while learning how to cope with their condition.  Once the pain is stabilized to a tolerable level, patients can work through the depressive and anxious symptoms, along with any underlying issues (i.e. sexual abuse, marital problems, etc.) that may be contributing to their experience. 

Working with a multidisciplinary team (PT, OBGYN, Psych, etc.) can help patients to feel supported while they work through both the physical and psychological aspects of their condition and work towards recovery.  The most important thing is that patients receive the help they have so desperately wanted and needed for such an intensely secretive and painful experience.

Recently, we received an email from a man who wondered why no one talks about male pelvic pain. My experience with male patients with IC and pelvic pain has not been extensive but we have had good success with those we have seen.  The national statistics show that IC gender ratio is about 8:1 regarding female to male prevalence of this disorder.  However, it is likely in my opinion that it is higher in men than currently believed.  The book, “Headache in the Pelvis,” was written by urologists from California. They describe how so many men are diagnosed incorrectly with “prostatitis”
who really have pelvic pain symptoms from IC.

Symptoms in men can be very similar to those in women and include urinary frequency, urgency, night-time awakening to void (nocturia), and otherwise unexplained pelvic pain including sexual pain.  I have several young men who have erectile pain, ejaculatory pain, and deep myofascial pelvic floor dysfunction with “gripping” sensations throughout the deep pelvis as well. We treat them very similarly to the women.  Most of them have already seen at least several urologists and family doctors and have not improved following the treatments for prostatitis or urinary tract infections as their
cultures are negative.

Medications for IC such as Elmiron, Hydroxyzine, low acid diet, Prelief, and neuropathic pain meds such as Neurontin and nortriptyline can be used very
effectively.  In addition internal release and pelvic floor physical therapy can be prescribed by therapists trained specifically for these pelvic “high
tone” disorders. Men with these chronic symptoms that don’t clear with the usual approaches (just as women) need to seek out specialists that know something about all these approaches in both women and men.

Our web site was developed in large part to start raising awareness to as many people suffering from these disorders as possible.  We are attempting
to educate patients so that they can find the legitimate resources that are available out there in their own communities to find the help that you so
desperately need.

I have been practicing Obstetrics and Gynecology for 37 years. Most of those years have been here in Bethlehem, Pennsylvania (except for a few years in Bangkok, Thailand for the US Army, and 5 years – 1995-2000 - in Las Cruces, New Mexico, working for an indigent based clinic).

As the medical partner for http://www.SecretSuffering.com, I would like to share my background with you and how my own practice as a specialist in chronic pelvic pain (CPP) has evolved.

Upon returning to Bethlehem, PA in 2000, I was asked to establish a non-surgical program for women with chronic pelvic pain for a hospital in Bethlehem. I had no idea at the time how rewarding an experience this was destined to become. I had always thought that the excitement and gratification I received during the years I spent delivering several thousand babies, and doing my best to care for the gynecological needs of women through their life cycles could never be matched … until I ventured into this new professional endeavor.

We developed an approach and a “model” for assessing, educating and treating women with the wide variety of painful symptoms known, in total, as Chronic Pelvic Pain (CPP). Many of our patients (close to 500 women and a handful of men) have benefited immeasurably and regained their health.

Guiding these patients, many of whom had suffered for years and even decades, back to health, made my newly created program an absolute pleasure to work in. It is my hope that I continue to help CPP sufferers for the remainder of my professional years.

The current health care system in America, as many of you realize, is “broken” in many ways and in need of incredibly intense reform. The primary incentives for physicians and other health care providers is to spend as little time with patients as possible, and carry out as many invasive tests and surgical procedures as they can. Consequently, most of the patients that I see in our program have had numerous procedures, surgeries and tests, and have seen many different specialists who have not been able to “fix” their painful symptoms. In many cases, patients are at their lowest point when we begin to see them.

Continue reading My Philosophy of Treatment by Dr. E »

We have begun the process of inviting healthcare practitioners to post their experience with pelvic/sexual pain patients and what has worked for them. We think it will be especially interesting for you to hear from researchers in this field, who are working diligently and passionately to help relieve this condition.