It took me 14 years to receive an official endometriosis diagnosis. Unfortunately for me, I was in the (literal) honeymoon phase of my marriage and completely unable to enjoy it. My husband and I got married just two months before my laparoscopy, and let me tell you, the road was rocky.
Endometriosis, for those of you who may not know, is a condition in which tissue similar to the lining of the uterus grows outside of the uterus, like on the fallopian tubes and the bladder, amongst other areas. If this tissue is present behind the vagina or has stuck itself between the vagina and the front of the rectum, penetration can stretch or pull it, causing an immense amount of pain.
A few months before my diagnosis, I was in desperate need of a doctor who not only listened to what I was trying to tell them, but one who actually believed me. My life was quickly becoming unbearable — I couldn’t use the restroom without urinating blood that felt like liquid fire, I couldn’t sleep because I was writhing in pain, I couldn’t be intimate with my soon-to-be husband, and I could barely make it to work (I had to leave two jobs). Several gynecologists and two urologists later, I was diagnosed with interstitial cystitis (IC)—an oh-so-lovely gift from the endometriosis monster.
Following my IC diagnosis, I went to the Worldwide EndoMarch in Long Island, NY, and met Dr. Farr Nezhat — an endometriosis specialist and my saving grace. Dr. Nezhat performed my laparoscopy — the most common procedure used to diagnose and remove endometriosis — just two weeks after our initial consultation. (I also had a hysteroscopy, cystoscopy, and dilation and curretage) After a bit of recovery time, my life slowly started to feel normal again, including my sex life.
Even though I still experience flare-ups, I don’t let endometriosis get in the way of my relationship with my husband — physically or emotionally. It took me a while, but over time, I found a few tricks for being intimate sans pain.
Communication is so important.
Before my diagnosis, I was silent. I didn’t tell my partner what was going on with my body, the pain I was in, or how I felt emotionally. Holding in those thoughts and feelings brewed a terrible cup of resentment toward him. For a while, I wasn’t even certain we’d make it to the altar.
Some nights, all I felt was hatred. We’d do the normal charade – he’d attempt to touch me and I’d let him, all the while I was wincing in pain and just praying it would be over soon. He’d finish and just pass out completely unaware that I was lying there wishing I was dead.
As soon as I knew he was asleep, I would sneak off to the bathroom so I could lie on the shower floor because the hot water helped a little. I would stay there for hours hoping the pain would subside long enough for me to crawl back into bed.
I would go back into the bedroom where I’d lie beside my fiance writhing in pain and hating him for being able to sleep so soundly. Hating him for not realizing I was in pain. I felt like he was selfish, like he didn’t care. But how could he? I hadn’t said one word to him. Even so, the hate would burn well into the morning.
This wasn’t exactly healthy for our relationship. Instead of making love to me, he kindled a relationship with porn – which only made me feel worse, physically and mentally.
Looking back on it, I know we lost our intimate connection because I wasn’t willing to open up. But I didn’t know how. That silence seeped into our relationship and before I knew it, we were barely talking at all. Our lives consisted of work, dinner, and sleep. It’s no wonder he turned to his screen for intimacy – I was both emotionally and physically unavailable.
Even so, I’ll never forget how I reacted when I found out. We were watching TV and I grabbed the iPad that I’d gotten him for Christmas to look something up. And there it was – one of the raunchiest porn sites I’d ever seen. I was pissed, to say the least. Steaming with rage. . . All I could think was that I wasn’t good enough for him, that somehow he‘d always need more. I threw the iPad on the couch, went into the bedroom, and slammed the door. I was waiting for him to come and apologize, but he never did. He slept on the couch the entire night.
Then, one glorious day, I had a mental breakdown. I literally fell into his arms and cried for what seemed like forever. Once I’d finished sobbing into his T-shirt, I told him everything. All of the gritty details from the excessive bleeding to the bloating to the long bathroom breaks I had.
Post-diagnosis, we talk about everything. He makes it a point to ask me beforehand if I’m “feeling up to it.” I know that’s not exactly the most romantic opening line, but it’s much better than what we were doing before – one kiss and he assumed he had the green light. (I should note that when we first started dating, we were very passionate and very sexually active. So, one kiss usually meant “yes” for both of us. It wasn’t until my condition became worse that we lost that connection.)
Now, however, he knows he needs to be verbal with me, too. I’d also like to mention that communication is important for any couple – whether you have a chronic illness or not. Sometimes just a headache is enough (or simply not wanting to have sex at all!) is reason enough to slow down and say “Hey, I’m just not in the mood.”
Opening that line of communication was a game-changer for me – I feel closer to him.
Use lots of lube.
I cannot stress this enough. Thanks to endo and all of the side effects that come with that, sometimes my vagina is really dry even when I’m excited. Thankfully, there’s lube.
Being well lubricated isn’t just a physical issue, it’s a mental one, too. Even after all of the overly honest talks we’ve had, sometimes he sees it as a shortcoming on his part. He’ll say things like, “I’m sorry you don’t like it. I want you to like it.” and “You’re still turned on by me, right?” Which leads to both of us wondering if we’ll ever be good enough for the other.
My personal favorite is a water-based lube that’s odorless and less sticky. Lube makes things much easier in the bedroom. Without it, it’s like jumping onto a slip-and-slide, mid-August sans water. (We’ve actually torn vaginal tissue before, so lube it up. It will make things less painful, trust me!)
Toys are your best friend.
Whenever I’m feeling uncomfortable or particularly uninterested in penetrative sex, my husband will pull out my vibrator. Clitoral stimulation is a great way to be intimate if I can’t handle penetration.
Another toy I recently discovered and love is called the Ohnut. It’s the first intimate wearable toy for people who experience pain during sex. It allows users to adjust the depth of penetration. Both parties can enjoy themselves with it, and no one gets hurt.
Intimacy doesn’t always mean penetration.
Kissing, massaging, play, etc. can be more exciting than the actual act, especially if you try to keep your clothes on. After I broke down, my soon-to-be husband and I spent an entire hour just kissing and it was magical. I felt so connected to him and it really felt like we were both 100 percent in that moment.
Before my diagnosis, I couldn’t have sex without feeling broken. The fact that this condition had taken over my relationship, both physically and emotionally, made me feel inadequate in almost every way possible. I turned my fiance against me because I was too scared to open up – terrified he wouldn’t be able to handle what was actually going on. I ignored the fact that using lubricant doesn’t make me abnormal and adding a few toys to the mix doesn’t make me or him any less of a sexual being.
Once I came to terms with the fact that endometriosis is something I’ll have to deal with for the rest of my life, it was easier to implement small changes here and there. In order for my relationship to work, I had to accept myself – endo bloat, burning urethra, and vaginal dryness, among other symptoms I experience during a flare-up. I’ll be honest, I still have those crappy little moments when I feel like a bloated puffer fish and sex is often the last thing on my mind. But at least now I can experience those moments with my husband instead of sobbing in the shower.
Ultimately, it comes down to what you do and do not like. Don’t step outside of your comfort zone for anyone. And, please, let whoever you’re with know if something hurts (whether you have endometriosis or not!)