What is wrong with me? (this is my story…part 1)

Sex is supposed to be an amazing experience. Okay, so I know it’s not always fireworks and multiple orgasms (I personally think that one is a myth), but it’s not supposed to hurt, right?  Am I doing something wrong?  Do I just need to give it time to get used to?  Why does it seem to be getting worse instead of better?  These are some of the things that frequented my thoughts during the early months of my marriage.

Perhaps my upbringing was a little different from yours, but sex wasn’t exactly a topic discussed at the dinner table.  So, when I first started experiencing the extremes of painful sex, I didn’t know what to do.  I waited several months until my annual OB/GYN appointment before even beginning my search for a diagnosis.  My husband didn’t know what to do with me.  (Needless to say, our marriage didn’t exactly get off to a great start.)  I felt defective, mortified and confused…what is wrong with me?

I did my best to just get through it.  I felt like it was important for me to have sex with my husband, but I didn’t have much of a desire beyond wanting to keep him happy.  I didn’t know how to talk to him about what I was feeling.  I couldn’t get past the overwhelming thoughts of what is wrong with me?!  Shouldn’t I desire to have sex with my husband?  There were many times that I would try to hide my silent tears, and other times when I just couldn’t take the pain and I had to tell him to stop.

In hindsight I am dumbfounded by how I handled those early days of painful sex.  I want to go back in time to my naïve self and yell at her to stop inflicting pain on herself!  Pain tells you that something is wrong.  Stop doing whatever is causing the pain and seek help!  (I would also lecture her on the importance of open communication in relationships.  If he loved you enough to marry you, he should love you enough to listen to you describe what is going on and support you in finding a solution.)

Eventually I found the courage to talk to my doctor and the journey to an accurate diagnosis began.

No, really, what is wrong with me? (this is my story…part 2)

Doctors are supposed to figure out what’s wrong and then fix it.  At least that’s what I thought when I first started my journey to find out why sex was so painful that it would bring me to tears.  It is not easy to talk about such a personal and intimate subject—at least it wasn’t for me.  The Nurse Practitioner I had been seeing for my annual appointments was kind, sensitive, and female—all important attributes that allowed for me to open up about my issue.  Her initial responses, although well-meant, did not help much to alleviate my ongoing self-doubt and hopelessness.  I felt as though she were down-playing my symptoms when she discussed the importance of lubrication and adequate foreplay (as if all I needed was some KY to fix my excruciating pain!).

One of the best things she did for me at that first appointment was recommend a book by the Berman sisters which included a chapter about sexual dysfunction.  Although it didn’t give me any real direction on figuring out my diagnosis, reading their book helped me to realize that yes, there was definitely something wrong with me (well beyond the help of decent foreplay).

Thus, the treasure hunt began.

The search begins (this is my story…part 3)

I’m not sure what the record is for number of tests and trial treatments someone can go through before finding a correct diagnosis, but I must qualify for at least an honorable mention.  I was treated for urinary tract infections, yeast infections, and Interstitial Cystitis (IC).  I took the IC medication, Elmiron, for seven months before moving on to the next potential diagnosis (you should check out the side effects sometime…not exactly pleasant).  After almost two years of looking for a diagnosis, my Nurse Practitioner had to pass me on to the M.D. who worked out of the same office.  He reviewed all of the treatments I had already tried and jumped straight to a laparoscopy to check for endometriosis (quick lesson learned that’s worth mentioning here…NEVER agree to surgery without at least a second opinion!).  Of course he found nothing that could be causing my pain, so then he referred me to a urologist.

I can’t explain how utterly helpless I felt at that point.  I remember running into the Nurse Practitioner in the hallway at my post-op appointment.  She was very kind, asking me how I was doing and whether the doctor had found endometriosis.  I did my best not to break down in the middle of the waiting room, but I couldn’t hold back all of my tears.  (Keep in mind that it had been almost three years of searching for a diagnosis through tests, treatments, even surgery, and all the while I was enduring sexual pain.)

I went to the urologist next and she went about her own painful search for a diagnosis.  First there was the catheter to get a “clean” urine sample (I put this pretty near the top of my list of torture techniques).  Then there was the cystoscopy which confirmed again that I showed no signs of IC (also on the torture list, but at least they try to give you something to dull the pain).  And, eventually the MRI of my bladder which also provided no clear indication of a diagnosis.

I took a break from my search at this point, too worn down from the journey and not knowing where to go next.

The path to a right diagnosis (this is my story…part 4)

The pain continued, and in some ways seemed to get worse.  But in the end it wasn’t the pain itself that led me to start my search again.  By now the far reaching effects of sexual pain had imbedded themselves into my subconscious.  Sex always led to pain, and physical affection often led to sex.  Thus, I eventually started avoiding affection altogether.  My husband took about as much as he could handle and finally confronted me about it.  It was this reminder and realization that my marriage lay in the balance which gave me the momentum to begin my journey again.

With the psychological effects becoming clear, the next step on my path was to see a sex therapist.  She had some positive advice on how to start the process of unraveling the psychological aspects of prolonged pain association.  The relaxation techniques she taught me were very helpful, but it became clear that we couldn’t make any real progress without first addressing the medical cause of my pain.

She referred me to a gynecologist who specialized in sexual issues.  He was definitely more knowledgeable on the subject than the doctors I had seen in the past, but I did not relate well with him at all.  I remember coming home from my first appointment, crawling into bed, and just sobbing.  Having to tell my whole story all over again of everything I had already been through—all of the unsuccessful tests, treatments, surgery, and the reality that I was still no closer to a diagnosis—just left me in a state of depression.  Fortunately, that doctor referred me to another urologist, who diagnosed hypertonic pelvic floor muscle dysfunction* and referred me to a pelvic floor physical therapist.

That first appointment with my physical therapist was the turning point in my story.

*Here’s my definition of hypertonic pelvic floor muscle dysfunction: when your pelvic floor muscle (that’s the extremely important, often neglected, sling-like muscle that holds all of your internal organs in place and allows you to “hold it” between bathroom breaks) is chronically tightened and shortened.  The best description I have been given is that it is like if you were to take your hand and make a fist as tight as you can and then hold it like that—for days, months, years—without letting go.  Even when you do let go it is likely that your hand will not open back up to its normal state very easily, and it will be incredibly painful.  This is similar to what happens to someone’s pelvic floor muscle who has this disorder.

The long road to healing (this is my story…part 5)

That first physical therapy session was certainly an experience.  If I had to use three words to describe it I would say it was awkward, painful, and enlightening.  Awkward might be a bit of an understatement.  I’ll just sum it up by saying that the most effective way of reaching the pelvic floor muscles is internally (and anyone who knows basic female anatomy should realize that leaves only two options).  Certain aspects were painful, but it was a different kind of pain.  By painful, I mean it literally felt like she was digging her fingernails into me, even though she was barely applying gentle pressure with her soft fingertips.  And by different, I mean the pain was not excruciating, and it was the type of pain that was beneficial.  It is like the pain you feel when someone is massaging a knot out of a tight muscle—it’s a healing pain.

Overall that physical therapy appointment was incredibly enlightening.  Between the painful trigger points (aka muscle knots), clear referral patterns across muscle groups, and the histamine release just from skin rolling, I pretty much fit the textbook description of hypertonic pelvic floor muscle disorder.*  It was amazing to finally find a right diagnosis!

But physical therapy is not an overnight fix—it has truly been a long road to healing.  I began weekly sessions, but had flare ups of my sciatica which would leave me with back pain for days after each appointment.  Eventually I started taking Lyrica, which helped to calm my nervous system and allowed me to continue physical therapy without the painful flare ups.  My physical therapist also showed me how to continue therapy between sessions through self-treatment techniques such as skin rolling, effective stretching, and using dilators.  After a year I was eventually able to reduce my PT appointments to once a month and even stopped taking Lyrica several months later.

Most importantly, I was finally able to have pain-free sex!

*If you aren’t sure what trigger points, referral patterns or histamine release are, don’t worry.  I’ll go into more detail about skin rolling and other aspects of my physical therapy treatment in later posts.

Another leg of the journey (this is my story…part 6)

I was able to have sex without pain for the first time ever!  I should be jumping for joy by now, right?  Not exactly.  Although I knew it was actually possible to have pain-free sex, this was a very rare occurrence.  I like to describe it as occurring only when all the stars were aligned.  In reality, I was still experiencing pain at least 90 percent of the time.

I say “when all the stars were aligned” because everything had to work perfectly in order to avoid pain.  I had very low libido and if I wasn’t at the perfect arousal level before entry and remaining throughout, it would become extremely painful.  The worst pain I would experience actually came on about an hour after sex.  My pelvic floor muscles would basically start to spasm and I wouldn’t be able to sit, sleep, or do much of anything without experiencing severe pain.  Of course the fear of bringing on this pain only added to my libido and arousal problems.

So, with the goal of increased libido in mind, my urologist referred me to an endocrinologist who did more tests.  Unfortunately, she wasn’t much help since her focus was really on reproductive disorders (she diagnosed me as having Polycystic Ovarian Syndrome based on the fact that I had irregular periods even though none of her tests actually supported this*).  Fortunately, my physical therapist recommended I visit a specialist in San Diego who is a leader in sexual medicine and he was able to address the missing piece in my healing puzzle.

This new specialist didn’t waste any time in setting me out on the next leg of my healing journey.  He explained how important hormones are to our bodies’ health and how specifically our sexual organs are affected when they are out of balance.  My testosterone levels were very low and my sex hormone binding globulin (SHBG) was through the roof, resulting in extremely low free testosterone.  I started on daily hormone therapy and began seeing amazing changes.  I hadn’t even realized that my vestibule wasn’t supposed to be red or that my labia were half the appropriate size until everything began to heal.

Not only did my libido improve, but everything wasn’t painful to the touch anymore.

*What is especially ridiculous about this diagnosis is that many of the symptoms of PCOS are due to high levels of testosterone.  Yet, my correct diagnosis that came later actually showed that my libido and arousal issues were specifically because my testosterone, especially my free testosterone, was so low!

Picking up the broken pieces (this is my story…part 7)

The difference is truly night and day from where I started, but I am still not normal.  It takes effort and extra care, but a healthy sex life is possible.  I continue to see my physical therapist once a month and do as much as I can on my own to keep my muscles healthy.  Pain-free sex does not come easily.  Even though I have found the right diagnoses and gone through years of treatment towards healing, sex can still cause much pain.  This brings me to the last and most important piece to finding healing when sex hurts—a spouse that is loving, supportive, flexible, understanding, patient, and so many other things.

Unfortunately for me, this last piece was too broken to put back together.  By our six year anniversary it became clear that the road to healing had been too long and too hard, and too damaging to our relationship.  A period of hurt and heartache came next, ultimately ending in divorce.*

But there is hope…

I can honestly say that I am a transformed person.  This has been quite a journey and I have learned so much throughout it.  God has been with me every step of the way—seeing me through the struggles, the hopelessness, the heartache, and the healing.  Although I can’t say I would ever choose to deal with the realities that come when sex hurts, I can see all of the good in my life because of it.  My journey is not over and I know there is still more healing to come.  But, I want to take this time now to share with all of you—lessons I have learned, experiences I have had, struggles I have overcome, and the amazing truth that when sex hurts there is hope!

*The psychological pain of a broken heart and a failed marriage is a completely different type of pain which also has far-reaching effects on every aspect of your life.  Likewise, the healing process takes time and effort.  I will share more in later posts about the importance of having a strong relationship with God, supportive friends and family, and a therapist you can trust.