Endometriosis No Longer Keeps Me From My Best Queer Sex

A multi-layered collage of corduroy fabric, in dark brown, then red, and finally pink. On top of the pink fabric is the outline of a person's body with buttons outlining reproductive organs.

Feature image by Carol Yepes/Getty Images // Art by Autostraddle

A few years ago, I had a job at a company where I regularly faced homophobic comments and jokes. When violence and discrimination against our community came up in the news, it was normalized and I was told I was being too sensitive. I responded by refreshing Autostraddle on my phone in secret every chance I could, waiting for each new post to go up and remind me for a few minutes that I wasn’t alone even if I felt like I was.

I hid in my tiny office with the door closed reading every article and every comment desperately looking for a way to feel seen in a job that felt smothering. One day while I was refreshing content at my desk I found, “‘Do Fingers Count?’ Vulvodynia, Medical Heteronormativity and Me” and suddenly I felt more seen than I ever expected.

I was diagnosed with vulvodynia – which essentially means vulvar and vaginal pain without a known cause – in 2012, after many months of pain so bad that I couldn’t actually sit down, because sitting meant putting pressure on my vagina and vulva, and that was unbearable. At that point at my life, even though I’m bi, I’d never had penetrative sex or been to a gynecologist because it hadn’t seemed necessary. I figured if I wasn’t putting anything inside of me for fun, I certainly wasn’t going to do it for medical reasons, and I wasn’t doing anything particularly risky as far as I knew (I say as far as I knew because it’s not like queer folks have access to quality sex education). My periods had been pretty normal until around this time as well. But suddenly my vulva and vagina had announced themselves with sharp, constant pain that got worse when I moved or sat or had my period and I had no choice but to go to a gynecologist.

But the doctors didn’t have answers; they had a lot of gaslighting.(Seriously, do not try any of these things, none of it is good advice):

  • First, several doctors in a row told me it was a yeast infection. Even though lab testing didn’t actually show an infection and, aside from discomfort, my symptoms didn’t match. They put me on so many different pills and suppositories and creams, but I kept getting worse.
  • Then there was the doctor who told me I would get better if I stopped wearing any underwear or pants to bed to give things a chance to “air out.”
  • But the next doctor had a different opinion that underwear was very important: it should be worn to bed and it should be cotton because you do need to let things breathe, but you don’t want moisture to just sit on your skin with nowhere to go.
  • The next few doctors all thought it was some sort of soap related issue. One doctor told me I should use a gentle soap like Dove to wash my vulva, but that made it feel like my skin was on fire. Another said this would cause more irritation and even allergies. Some said to use one of those products they sell in the drugstore that claims to be a pH balanced wash to help with “odor.” Someone else said to use only Cetaphil Gentle Face Cleanser. Another doctor said to use no soap or cleanser but to make sure I really rinsed the area with water.
  • One doctor gave me a lidocaine spray to just kind of numb everything for a bit.
  • No one seemed concerned about the bad cramps I had either.

It pissed me off that I was being forced to suffer through having the fingers of so many strangers and painful medical instruments inside of me when in the eyes of these doctors I was still a virgin. And honestly, I would argue that when you are in severe pain and desperate for answers, it is impossible for gynecologic care to be consensual or trauma-informed. I regularly left doctors’ offices in tears and in more pain and it felt like they were all peddling snake oils rather than real treatments and answers.

Eventually, after close to a year, I was referred to a specialist center for pelvic pain and given the diagnosis of vulvodynia. I was sent to physical therapy for my pelvic floor where I felt even more violated as a medical provider massaged my internal muscles and gave me feedback on whether my kegels were appropriately clenching her fingers or not. I was put on gabapentin for the pain and given a cream that was a compound of a muscle relaxer and a pain medication to apply topically.

It did help, things improved and I could sit down again. But tampons were still not an option and neither was any penetrative sex. But that didn’t seem to matter to any of the medical staff because I wasn’t having “pain with intercourse” because well… I wasn’t having intercourse. So I learned to just accept a certain level of pain. I just wouldn’t be a person that could have penetrative sex or use tampons. I would have to learn to avoid swimming during my period. I wasn’t even sure if I would be able to have an orgasm because even pleasurable external touch tended to become painful before I got anywhere near climax.

When I got into a serious relationship these were things I told my partner as though they were facts about me: I can’t use tampons, I can’t tolerate penetration, I don’t know if I can orgasm. It’s not you, it’s me. My partner was kind and gracious and never pressured me. I learned to enjoy the pleasure of sex without the orgasm and to take the pressure off of myself and my partner. I accepted that for the two weeks surrounding my period each month I would still be in a lot of pain, with not just bad cramps but pain in my vagina and on my vulva. It was better than it had been and I had gone to so many doctors to get here, so I figured this was the best it was going to be.

But over time the cramps got worse and nothing helped with the pain anymore. I would take Tylenol and Advil at the max dosage, use heating pads on my stomach and my back, and use pain creams, and I was still curled up in a ball on the couch unable to move. Some days the pain would become so overwhelming I would collapse on the floor. It was like my brain was so busy processing all of the pain that it forgot to send signals to my legs and they just simply gave out under me. Whenever I had my period I had to cancel anything out of the house from visits with friends to doctors. I quickly went through sick days at work because the pain was too intense to concentrate on anything else, even if I could work from home. My period also became really heavy and unpredictable. One day, I got my period when I was waiting to board a cruise ship with friends. I had been so excited for this trip with my friends but then I bled through my pants in line to board and had to wash the blood out in the cabin’s sink and shower immediately when we got to the room. It was humiliating. My period was so heavy that it only lasted one day–as if it had crammed the entire week’s worth of blood into that day–and I had to pay for phone access on the cruise to call my doctor and make sure I wasn’t in danger from losing too much blood.

It became clear that I needed to find a new gynecologist and new options. I was started on a birth control pill to help regulate my cycle and my symptoms and it helped a little. The pain didn’t stop, but the volume knob got turned down slightly.

The first gynecologist I saw referred me to a pain specialist who was kind and affirming and took the time to really understand my history of pelvic pain and the ways it had impacted my life. She told me that it sounded like my treatment wasn’t working and this was truly the first time I had allowed myself to consider that I had been forced to settle for pain I shouldn’t have had to settle for. When I told her that my vulvodynia also gets worse around my period, she said she wasn’t sure I had vulvodynia at all. Instead she suspected I had endometriosis.

I was expecting her to say that the cramping was endometriosis, but I was shocked to hear that all of my pain could be explained by endometriosis and that perhaps I had the wrong diagnosis all along. She explained that a hallmark of endometriosis is that the endometrial lining of the uterus migrates. It can attach itself to nearby tissues and organs like the intestines and the vagina itself. It was possible that the pain I had been feeling this entire time was actually from endometrial tissue.

The doctor started me on a high dose version of a birth control pill with the goal of completely suppressing my period so that the endometrial tissue wouldn’t have a chance to grow, spread, and respond to changes in my hormones and cycle. She sent me for an internal ultrasound with a dose of xanax and a suppository or lidocaine because she knew it was going to be really difficult for me. And she was right, I was in so much pain afterwards that I couldn’t walk for a week. But when the results came back I got a real diagnosis.

The ultrasound determined that I had adenomyosis, a similar condition where the endometrial tissue grows in the muscular wall of the uterus. It causes extremely painful and heavy periods. The ultrasound didn’t find endometriosis itself, but the doctor explained that it’s harder to see since it is attached to other tissues outside the uterus. She said that adenomyosis and endometriosis are common together — and the fact that we confirmed adenomyosis made her feel more confident I had endometriosis, too. She said sometimes the only way to truly know for sure if you have endometriosis is a surgery to look for and remove endometrial tissue in other parts of the abdomen but that we didn’t need to consider that until we tried non-surgical options to treat the symptoms. We increased the dose of my medication even more and after two months my period stopped. And my world changed.

All of my pelvic pain, internal and external, nearly went away. The irritable bowel syndrome (IBS) that I had thought I had for years calmed down too, making me question that diagnosis as well. I ate vegetables I hadn’t been able to tolerate in years. I stopped having half of every month be filled with pain. The compound topical medication I had been getting prescribed for years sat unused in a drawer in my bathroom because I simply hadn’t needed it. The pain had more or less just stopped.

I realized that for the first time I might be able to consider having sex with internal stimulation. For the first time I was able to experience, without pain, the feeling of having my partner’s fingers inside of me and we found a new level of intimacy and excitement. Suddenly there was an entire world of toys, feelings, and experiences I could consider and experiment with. It was like being a teenager exploring sexuality for the first time. Do I like strap-ons? What about a double-sided dildo? Or about those rabbits they were always so obsessed with on Sex and the City?

Everything was brand new. We bought so many toys in such a short period of time and went through more sex toy cleaners in a month than I probably previously had in a year. There were new positions and creative uses of furniture that I had never even considered before.

There was one time we decided that an armchair in our bedroom created some opportune angles. My partner stood between my legs with their fingers inside of me and found just the right spot. And just like that… I had my first g-spot orgasm.

I had been resigned, for years, to the fact that I just might never experience an orgasm at all. Now here I was feeling pleasure so intense it made my entire body shake. It was so incredible, and it was infuriating.

Why the FUCK is there so little research and funding going in to pelvic pain where billions are spent on cis men who can’t get it up? And while it’s true that little is being done to address the pelvic pain of straight cis women, I find it hard to believe that the dozens of doctors I saw would be so quick to tell a straight cis woman that her inability to have penetrative sex is acceptable. Because if a straight cis woman cannot tolerate penetration, it is a reproductive problem, and a problem that affects her male partner’s ability to get off. If a queer woman can’t tolerate penetration, it doesn’t matter because pleasure, intimacy, and queer joy have no medical value.

How did I spend an entire decade of my life letting the medical system tell me that constant pelvic pain was acceptable? How did I shut off an entire part of my sexual experience because mostly-straight doctors decided that it was okay for me? I had to grieve and experience these new highs while also learning to process what I now realized was a decade of medical trauma, discrimination, and gaslighting. And you know what? I deserved better.

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11 Comments

  1. Thank you so much for this piece, and for sharing your experiences seeking aid from a system that often seems completely disinterested in actually helping anyone who isn’t cis, het, or otherwise actively reproducing.

    My mom raised me to be a strong “self-advocate” in medical settings, and even as a kid she would hold space for me at appointments so I could ask the doctors questions. As an adult, I’ve dealt with several health scares, manage a couple chronic conditions, and have even gotten myself sterilized; of course, every time, I have to slog through the litany of doctors who range from dismissive to actively hostile towards me as a loud patient.

    I thought I was fine and equipped to deal with all of it because of the practice my mom gave me. But this year, it finally got to be too overwhelming, and for the first time in my life I felt myself avoiding the doctor’s office.

    I don’t have a larger point here, other than gratitude for your writing and ability to articulate the pain of something so many of us just take for granted when we go and seek care.

  2. Thank you so much for writing and sharing this. I’m in a similar position; however, while birth control helps the pain, it completely tanks my sex drive all together. Still looking for a good solution.

  3. “I find it hard to believe that the dozens of doctors I saw would be so quick to tell a straight cis woman that her inability to have penetrative sex is acceptable”

    Hello it is I, the straight-presenting bisexual cis woman who was told by multiple doctors that my inability to have penetrative sex (due to adenomyosis, no less!) with a male partner was acceptable. They don’t care either way, if you have a vagina. Your partner can always find someone more accommodating, after all. Family history of ER+ breast cancer makes hormonal birth control not an option. I’m glad it worked for you, but it’s devastating that that is the only option we are given.

  4. As another commentor said, even saying you can’t have penetrative sex with a male partner won’t get you anywhere either.

    However! Saying that you want to get pregnant suddenly opens a lot of doors. I have never had better reproductive healthcare in my life by just saying i want to have a baby.

    Suddenly having an ultrsound to investigate pelvic pain was entirely reasonable.

    (it turned out to be benign cysts and afterwards i just entirely coincidentally realized now wasn’t the right time for babies maybe next year)

  5. I’m somewhat speechless by your article because i had the exact same symptoms, was seeing doctors about it for decades, and have never heard once from them about adenomyosis !!??
    In the end all my debilitating health and pain issues turned out to be hormone driven, and not mental, because they immediately went away on day 1 of menopause, and never came back.
    So yeah, thanks for nothing, medical industry.

  6. I’m so, so sorry to you and others in this boat (all women?).

    On a lighter note, I’m Team Water Only to wash the vulva. Only took a week or so for pH to adjust when I stopped using soap inside and out of my vulva, then I smelled and tasted way better than when I was washing with soap. Hate that there are so many products out there that seem unnecessary, expensive and shame-inducing for most!

  7. Thank you for being vulnerable and sharing your story. I am a queer pelvic floor physical therapist who is new to the practice and have had several patients with endometriosis. I went into pelvic health partly due to my own history of pelvic floor dysfunction and the subsequent lack of available information on/around queer sexual health and mostly because I want to be able to provide gender affirming care for trans and non-binary individuals.

    I am new to the practice and appreciate your perspective. Is there anything your pelvic PT could have/should have done to help you not feel violated, or to be more affirming and supportive? I do try to inform my patients that internal work is always voluntary, not always necessary, and typically only perform internal work for evaluations/reevaluations or when internal work is beneficial for their specific condition. But, I’m still learning how best to be a trauma-informed provider and work within my patients’ comfort level, and provide that education within the time constraints of a typical treatment session. Any thoughts you have on this are welcome.

  8. Oh, and I’m also Team Water Only! The vagina is a self cleaning oven and you should only need to use a (gentle, unscented) cleanser in the crease between your vulva and upper thigh.

  9. I’m sorry that you’ve been through so much, unfortunately endometriosis is a “new” disease, with little research, information and treatment, and this shit is genetic. I have it, just like my mom e a cousin of mine.
    Both of them had fourth degree, that it’s the worst case. They’ve been through multiple surgeries, my cousin lost a kidney and my mom lost part of her intestine.
    Today both are on menopause, but lately we found out that endometriosis has no cure, it doesn’t stop when you hit the menopause period, simply because my mom have been experienced severe belly pain, without explanation. She went to the hospital and doctors, they made multiplus exams and found nothing, she’s now doing more and we just found out that this pain can be because of the 5 surgeries she made because of the endometriosis or the endometriosis itself. She have 55 years old.
    I found out that I have it it’s been two years, I’m 30 now and just this year I started to feel the symptoms more, especially with severe cramps (to the point that I can’t be seated at my job or even go to the gym), and because of my mental health I just can’t take birth control, so basically I just wait and manage the pain and symptoms.
    I really hope that someday women will get to have the care they need for this, because I’m lucky that I have health insurance and live in a country that have public health, but even with all this, the lack of information are still there. But I’m also very happy for you being free and being able to live a normal and happy life after all this.

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