A Year Without Sex Forced Me to Finally Confront My Pelvic Floor Dysfunction

“And your sex life?” asked the pain psychologist in a soft tone of voice that could only be harnessed by someone who was well-versed in navigating these sensitive topics.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

My voice cracked almost immediately as I started to explain that sex just wasn’t possible for me anymore between the hip dislocations, extreme fatigue, and spontaneous projectile vomiting.

“How long has it been?” she asked.

“Almost a year,” I responded, unable to make eye contact.

“Sounds like this is really hard on you,” she said with a kind smile.

Something about her empathy broke me, and I started sobbing uncontrollably.

After a little more talking, she honed in on the fact that my libido hadn’t evaporated, and there was something else that was actively deterring me from attempting to restore my sex life… and she was right.

There was never a time in my life when sex was completely pain-free… but then again, there had never really been a time in my life where any physical activity had been pain-free.

What I realized over the course of our conversation was that the moderate discomfort I used to feel had been gradually escalating over the course of the last two years to an excruciating, sharp pain that was no longer tolerable.

I chose to stay in denial about this realization for a little while longer — until I went to the gynecologist and had a very painful pelvic exam. She prescribed me some different hormonal options for menstrual cramps and my premenstrual dysphoric disorder (PMDD), but unsurprisingly, these didn’t do anything for the actual muscular and mechanical pain I was feeling inside.

She also spoke to me about the psychological cycle of experiencing painful sex and the tendency to “clench up” in preparation for the pain, recommending that I see a pelvic floor therapist. Something about this didn’t ring true to me though. I was pretty well used to everything being painful all the time, so why had it suddenly become so intolerable?

Despite feeling pretty negatively about her suggestion — maybe my judgment was being clouded by previous medical gaslighting, but it sounded like I was just going to pay for the privilege of being told to relax and stop worrying — I decided to schedule a follow up with my general practitioner to ask for the referral for pelvic floor therapy.

When I arrived at the appointment, there was a young person hovering around my doctor, who was soon introduced to me as one of her medical students.

“Terrific, an audience…” I thought to myself.

After a few minutes of awkward stalling, I had no choice but to bite the bullet.

“I have been having a problem with pain during… sex,” I whispered like I was 12 years old.

The suspiciously young-looking medical student nodded at me encouragingly, and I realized that I had perhaps judged him too harshly. He managed to communicate a lot to me in that single look. He seemed to be saying, “It’s OK, and it’s normal. You can do it!”

After ruling out signs of infection, my GP explained to me that painful sex was quite common in fibromyalgia patients as the genitals were simply another area with nerve endings to which the brain could send faulty pain signals. She also explained that it could be a symptom related to my Ehlers-Danlos syndrome as from a medical perspective, it was simply another area made of soft tissues. She said that while pelvic floor therapy may help me, I may also benefit from using a topical solution for a while to break the feedback loop of pain between the local nerve endings and my brain.

She then proceeded to treat me to a short but delightful explanation of how to use this during foreplay — with the recommendation that I combine it with “a lot” of lube. I wondered if I would ever be able to look her in the eye again.

Although the whole process had made me deeply uncomfortable up until this point, I was left with a sense of relief after the appointment (perhaps feeling that the worst was over), and a week later, I was rolling up to my first pelvic floor therapy session, calm and finally ready to tackle this symptom head-on.

Fortunately, the physical therapist was excellent and made me feel at ease. After another pelvic exam, she told me that she felt my difficulties with sex were much more muscular than they were psychological and further explained the link between Ehlers-Danlos syndrome and pelvic floor dysfunction, stating that healthy collagen was vital for maintaining vaginal elasticity. She also explained that the escalation of these symptoms was probably linked to the deterioration of function in the rest of my body over the past couple of years.

She also explained that holding tension in the pelvic floor area was quite common among patients with chronic pain, fatigue, or muscular conditions as we had a tendency to over-engage this area to compensate for other muscles that may not be working properly during physical activity.

This came as quite a surprise to me. When I was doing rehabilitative Pilates at a younger age, I was constantly told how important it was to engage my pelvic floor and felt that this was something I always had to really focus on. However, in the weeks that followed, I realized that at some point, I had indeed crossed over into overcompensation, squeezing the life out of my poor pelvic floor muscles — especially when getting in and out of chairs and cars and when walking on uneven surfaces (looking at you, Brussels!)

The pelvic floor therapist also gave me some manual exercises to do at home to help release the perineal muscle. Attempting these for the first time was a real wake-up call — my perineum was rock-hard, and I literally could not tell where my pelvic bone ended and the muscle began! In some ways, this was quite encouraging, as it made it seem like it was simply a muscle that could be retrained, like I had previously done for other areas of my body.

The following week, I returned for my second appointment, which was when we really got down to business. The PT did a long manual release session on the perineum (which was painful but tolerable), and we agreed to start doing mild electrical nerve stimulation on my bladder as I had also complained of bladder pain and felt that it was contributing to my overall discomfort during sex.

Sadly, I reached quite a low point after this session as I experienced intense muscular and nerve pain in the days that followed my treatment. The pain was biting and tingly, extending into my legs, butt, and abdomen. It was like the pain that had put me off of sex in the first place, only supercharged, and it made the thought of ever having any sexual contact again sickening to me.

Although I had sunk back into the mindset that I was never getting better, the PT remained optimistic that this was just a temporary road bump. She said all we needed to do was continue with the same therapies at a slower pace.

After my third session, I had the same pain to a lesser extent, but fortunately, this was the last time that I struggled in a significant way after treatment. I gradually became more confident in mimicking the therapist’s techniques at home, and I was able to make slow, steady progress with the perineal muscle. It took a bit longer to see progress with my bladder, but gradually, that started to improve too.

The next step was to take my newfound “elasticity” for a road test…something that forced me to confront another big obstacle: my internal shame and loss of confidence.

I never considered myself to be a prude or particularly body-conscious, but when your body changes due to an illness, it can be very hard not to let it change the way you see yourself, especially when so many of us experience changes in the way that others view and treat us.

For me, it wasn’t just the changes in my physical appearance that I found challenging, but it was also the changes in my abilities — both inside and outside of the bedroom. I worried about whether my partner still felt attracted to me when I was pale, losing hair, and often lacking the energy to dress up and put on makeup. I worried about whether they were frustrated with me for not being able to contribute to our relationship as much as I used to. I also worried about whether or not they would be disappointed if our sex wasn’t as energetic as it used to be.

Despite my best efforts to move past this, whenever I contemplated the idea of initiating sex, I found myself overcome with an intense feeling of sadness and fatigue, and I realized that I had yet to grieve the fact that this was yet another area of my life that had been changed — possibly forever — by my disability.

This grieving process stopped me from giving sex another try for a quite a while after my perineum had recovered, and you know what? That’s OK. I also needed time to heal emotionally before I shared this vulnerable and intimate side of myself again. In fact, I think that waiting longer and ensuring that I was not only physically but also mentally ready largely contributed to the roaring success of my first attempt at having sex again.

The sex was different, but it was different in a good way. I was surprised by how easy it felt and was delighted to learn that having a strong pelvic floor didn’t have to mean feeling like you needed a shoe horn in the bedroom!

The extra time and grace that I allowed myself also meant that I was much more confident in communicating my needs, trying different positions, using props like pillows to get comfortable, and not ending up totally wrecked afterwards (Even when I was younger and healthier, having to pop my hips back into place after sex was basically the norm for me!)

Although I am incredibly grateful for our ongoing sexual revolution and the fact that sex is becoming less and less taboo, something that I have realized over the past year is that experiencing pain or difficulty having sex is still looked down upon and pigeonholed as something that is only experienced by the sexually repressed. While this is sadly still a real issue for many people (and definitely not something they should have to feel ashamed of), there are a whole host of reasons as to why someone may find sex challenging. At the end of the day, sex is a physically demanding and emotionally-charged activity, and we desperately need to have open discussions about this. It’s high time that sex education addresses not only the mechanical and medical aspects of sex, but also how it can be enjoyed by different types of people in a physically and emotionally safe way.

I am still learning more about what my conditions mean for me in the bedroom, and the reality is that pain and fatigue do still stop me from having sex sometimes. From time to time, I also make the mistake of pushing myself too hard and have to pay for it the next day (Remember, fellow bendy babes, that just because you can do something in the bedroom doesn’t always mean you should!) But all in all, I am grateful for the improvement I have found through pelvic floor therapy. I do still need maintenance sessions, especially for my bladder, which seems to flare up whenever I have a migraine attack. However, the most important thing I have learned is to treat these areas just like any other part of my body — a body impacted by an illness I have no control over and that deserves love, so that I can live life to the fullest.