So this entry’s going to get a bit personal.  And possibly full of Too Much Information.  But it is a topic that needs to be addressed.  Not only for myself, but for countless otherssuffering from the same issues.

One of the symptoms of Endometriosis for a lot of EndoWarriors is painful sex (either during, after, or both), and it’s estimated that more than half of the people with Endo suffer from it.  The fancy name for pelvic pain during or after sex is Dyspareunia. It’s common and it could have a myriad of causes and factors.  Some of those factors can be vaginal dryness, herpes, Endometriosis, ovarian cysts, fibroids, Adenomyosis, uterine tilt, bowel tenderness or fullness, pelvic inflammatory disease, infections, or bladder issues.  The pain can be limited to the vaginal opening or canal, or it can extend deeper into the pelvic region and thighs.  This pain can stop as soon as sexual activity is stopped, or can last for hours, or even days afterward.  It can be a dull ache, a sharp pain, stabbing sensations, and can range from barely there to excruciating.

But why does Endometriosis cause pain with sex?  If you suffer from this disease, or know someone who does, you know it causes inflammation where implants are located, as well as scar tissue called adhesions.   These inflamed bits become tender and sensitive.  The adhesions may tether organs together in an unnatural, binding fashion.  The penetration of sex may bump these tender or stuck-out-of-place bits…causing pain.  The jostling around may even be enough to cause pain or rupture cysts and Endometriomas.  Think of your last transvaginal ultrasound, pelvic exam, or abdominal quadrant palpation.  Did those procedures cause you pain?  If so, I’d imagine you also experience pain with sex.

In 2013, the Endometriosis Foundation of America hosted their annual Medical Conference.  Lone Hummelshoj discussed Endometriosis, painful sex, research studies, and treatment.  If interested, you can read the transcript and watch the video.

I lost my virginity when I was 21.  I was told the first time would hurt…and it did.  Later, I had experienced that same piercing, horrible pain as my first time, and learned I had two cervix and two hymen…and that the 2nd bout of pain was the rupture of my second hymen.  So I thought sex is supposed to hurt.  So, I had grown accustomed to sex causing at least some type of pain, aching, and cramping.  I even attributed it to a Damn Good Orgasm; didn’t hurt so much that I didn’t want it…never knew it wasn’t normal.  Fourteen years after my first sexual encounter, I received my Endo diagnosis.  And learned the symptoms.  And learned sex isn’t supposed to be painful.  That this cramping isn’t a sign of a Damn Good O.

After Lupron Depot dried up my mighty lube-maker and girly bits, our sex life changed.  Yes, we resorted to KY Jelly, but everything was paper thin, dry, and uber sensitive down there regardless.  Once off of Lupron Depot, I started a continuous birth control pill.  My lube came back, but my libido has not recovered in over a year.  We have sex drastically less since my diagnosis and some positions just don’t work anymore without causing extreme sensitivity/pain.  I don’t know if it’s because I’m being more aware of my broken body, or if I’m subconsciously scared to cause my body more unnecessary pain, or if it’s the lack of libido, or because I’m on the pill, or a combination of all of these.  I am grateful that my Partner is incredibly understanding.  Sometimes sex hurts.  Sometimes it doesn’t. Sometimes afterward (and into the next day) I can have bad cramps.  Sometimes not.  It may be that I’m not all lubed up prior to starting (vaginal dryness can lead to painful sex), or I’m still suffering from vaginal atrophy from the Lupron Depot (more kegels!), or it may be my Endometriosis.

Bumpin’ Uglies is one of the most Beautiful Gifts I cherish with my partner.  It’s a deep physical, mental, and spiritual connection with him. Sometimes the decrease in our lovemaking causes me sadness and remorse, I feel like it’s my fault, or I fear I’m not meeting his wants.  But then I have to remember, or am simply reminded by him, that those are not true.  Sex is not the end-all-be-all of our relationship.  Do I miss it? Yes. We still have it from time to time, few and far between. Will it ever go back to the way it was before? I have no idea…

And I’m not alone in my feelings of … failure, sadness, loss, and incompleteness.  Braave.org posted a very touching blog about the comments they received from women about Endometriosis and their sex lives.  It also goes into how you, as a partner, can handle things.  Reading this blog today not only made me cry, hold my breath, and nod my head in agreement…but it forced me to understand that I am not alone in this grief.  And that’s what it is (I think…) – grieving, mourning.  If you haven’t heard of Braave.org, it’s by partners, for partners of women with Endometriosis.  They bring the “significant other” perspective to our disease.  And it’s great.

Some suggestions to help with avoiding painful sex…while not avoiding sex:

• Listen to your body.  If you’re having a flare-up day, don’t even attempt it.
• Foreplay, candles, music!  Get in the mood.  And if your body isn’t creating enough lube, grab the tube and go to town.
• Tempo and pace.  If the pace is too fast or too hard, slow it down, keep it tender.  If it’s too deep, ask that they pull back a little.
• Change positions.  Certain positions may cause more pain than others.  If it hurts, try switching to a different position which is comfortable for you.  There’s endless inspiration out there…
• Communication.  Feel free to tell your partner you’re not up to it.  Or ask them to stop because it hurts too much.  If he/she loves you, they’ll listen without question, hesitation, or regret.
• Heating pad.  Overdid it?  Feel those aches and cramps coming on after the fact? Grab that heating pad.  Yeah, it’s ridiculous…but it helps.

Many EndoWarriors may wish to avoid sex because of the pain.  Many partners may not wish to initiate sex, afraid of hurting her further.  It can make sex a “walking on eggshells” matter…It’s a deeply personal and often embarrassing topic of conversation.  But it is something you should definitely discuss with your partner, if you haven’t already.

And…talk to your doctor.  Just like killer cramps aren’t normal, painful sex is not normal.  It may be as simple as you need to be more excited before you actually have sex…or use lube…but it may be something else…

And if you need someone to talk to, I’m here.

Yours,

Lisa

Resources:

Braave.org – Sex & Endometriosis : 4 Quotes that will Teach You Everything Women Go Through

Carolinas HealthCare System – Is Endometriosis Hurting Your Sex Life?

Endometriosis Foundation of America – Endometriosis and Painful Sex (video)

Endometriosis.org – Painful Intercourse

Every Day Health – Why Sex Hurts with Endometriosis

InformedHealth.org – My Partner Has Endometriosis -what does it mean for me?

Patient.info – Dyspareunia (Pain Having Sex)

Prevention – 8 Reasons It Hurts During Sex – And How to Fix It

ReproductiveFacts.org – Why Does It Hurt When I Have Sex?

Shape – 8 Reasons Why Sex Hurts

Smart Living Network – Painful Sex as a Result of Endometriosis

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa