My Pelvic Pain Journey: Part 2

The messages we may have received growing up about sex are confusing.

“It’s easy – the penis goes into the vagina!”

“The first time will be painful, you may even bleed, but it feels better after that.”  

“What is there to learn? It’s anatomy!” 

Except…sex isn’t easy or painless for everyone. For me, it was the opposite. It was incredibly painful and very challenging.

I tried a lot of things when the pain would hit. I would pause to try and breathe through it. I would try to talk myself through the pain, saying it was mind over matter. But no amount of attempted relaxation, breathing, or comfort of word or touch from my husband would allow that to happen. I didn’t know if this was normal or not. And the cycle of sharp, burning pain continued.

I reached back out to my friend who I initially spoke with after the tampon use failure, who said that another friend of hers was also dealing with pain during sex, and that she’d connect us both. We ended up talking soon thereafter, which was the most reassuring conversation I had up to that point. She told me about her own journey with painful sex, suggested some pelvic floor (which was a new term for me) relaxation exercises I could start doing at home, and mentioned that she was receiving pelvic floor physical therapy. I had never heard of this specialty in the physical therapy field before, but I knew that I needed professional support since I had no idea what was going on.

It was October 2016 when I started a Google search in my area for pelvic floor physical therapy (PT). I first tried Yelp because I was terrified of allowing a professional into that part of my personal space and I needed to know that they were good at what they did. Both Yelp and Google searches recommended me to a pelvic floor PT practice that was private – out of network – but I decided to go with it. The testimonials from previous patients who had dealt with pain during sex were excellent, the practice was female owned, and they had a whole section with FAQs and information about evaluations for patients. I felt safe enough to email them to book an evaluation. And one week later, I went in for my evaluation with a pelvic floor PT, Tieya.

Little did I know then that Tieya and I would work closely together for over two years before I could use a tampon and have painless, complete, and effortless sex.

It’s really hard to place into words what those two plus years were like. And if you’re someone working though pelvic floor dysfunction, don’t get hung up on the amount of time it took me to reach my goals. It can take much less time for some folks, whereas for others, it can unfortunately be a longer journey, mostly because many medical providers and counselors/therapists are clueless about pelvic floor dysfunction and dismiss women’s pain as being in our head. As I’ve also come to learn, the pelvic floor is incredibly complex and there is a myriad of reasons why pelvic pain exists, and even more approaches to therapy and treatment. Which is great, and also frustrating.

Through the PT evaluation, Tieya told me about the tightness and weakness of most of my pelvic floor muscles through external palpation, and we worked on my hip flexibility, lumbar spine mobility, strengthening my core, and lengthening abdominal and external pelvic floor muscles in and around my inner thighs. These muscles and systems are all connected, as I learned, and they impacted my pelvic floor system. Tight and weak hamstrings, glute muscles, and abdominal muscles ultimately contributed to my pelvic floor issues. Each session I learned more about my pelvic floor. I was given a home exercise program to lengthen and strengthen my muscles. And after I finally gained comfort after two months of working with Tieya, I allowed her to perform an internal vaginal exam. And that was when the most challenging part of the journey began. 

Tieya told me that I had pretty tight pelvic floor muscles all around the vaginal canal (i.e. they are hypertonic and felt stringy versus pliable). She said that even though I was in my 30s, they had probably been that way since I was a teenager. I had given her my history, including being a victim of child sexual abuse and carrying that trauma in my body for twenty years before I knew what had happened to me. She mentioned that this probably contributed to hypertonic pelvic floor muscles which caused constriction and therefore pain during insertion of anything into the vagina. The goal of PT would be to combine external and internal vaginal releases to lengthen these muscles out, and to retrain them back to a regular baseline of tension. And that vaginal dilator work at home would be needed as well.

That was when I realized that I could no longer ignore those plastic dilators I had received a while back.

I still remember the first time I tried the smallest dilator. It was three months into PT and after the first internal exam Tieya had completed. I took the smallest plastic dilator from the kit (it was the size of a tampon), put lubrication on it, took a deep breath, prayed, and slowly pushed it into my vagina. I was shocked when it went in all the way, without any pain, and came out the same way. I was thrilled. This was a huge accomplishment already because it told me that I could at least insert that size into my vagina without difficulty.  

However, as I would soon find out, progress was not always easy or linear. Over the next couple of years, I would attend PT sessions three times a month and continue with my home regime. The dilator sessions, as I went up in size through the 5-set kit, would take 30-45 minutes. I started with a heating pad to gently loosen up the muscles; I would use a pelvic wand to release any internal trigger/tight spots; I sometimes performed perineal stretches (the area between the vagina and anus, which is where all the pelvic floor muscles converge, and is usually the tightest spot for many women); and then I would progress from the smallest to largest dilator I was using at that time. I spent on average three times a week laying on my bed, staring up at the ceiling, summoning God’s powers and praying each time I inserted the largest dilator I was using at the time. 

And this is the most frustrating thing about pelvic floor rehabilitation – it’s not linear. There were days where the largest dilator would go in all the way without any discomfort (those were rare), and there were others where there was pain and the range of motion was less. There were days when I just cried and kept going, pushing through discomfort, and days where my tears were from joy and celebrating successes. It was such a roller coaster ride. Tieya would see me after vacations and tell me how my pelvic floor felt much more relaxed. She encouraged me to do more diaphragmatic breathing, telling me she could feel the whole pelvic floor relax as I did. I journaled, prayed, breathed, cried, and wondered each day if I would ever get through this. Less than a handful of people knew what I was going through. This ordeal was kept tucked away and hidden, much like where I stored the dilators in my bedside table.

My self-worth became attached to how far the dilator could insert into my vagina. Friends around me were getting pregnant and having children, and it seemed so easy for them. I couldn’t have painless and complete sex, let alone get pregnant. I felt like a broken woman and more like a sexual problem than a sexual being. My confidence plummeted, and I had a hard time accepting my body the way it was. Especially given how other people saw me: a healthy, active young woman.

As those two years of PT continued, I would travel for work, and always packed my dilators and a bottle of lubrication. I would wake up each morning thinking about and planning out when I would do my PT homework, and at night, would either feel glad that I was able to or guilty for not doing it. The progress with the dilators slowed down the larger in size I went up. There were five dilators in the set, and the last two took me a 3-5 months each to progress. It felt like I was crawling through molasses on some days, the progress was so slow. I ordered a size up from the largest one, which still wasn’t inserting fully without some discomfort, but I moved up in size anyway. While that larger one would insert, it was slow, painful, and felt like my vagina was suctioned to it when I pulled it out. It was not pleasant, but I breathed and winced through it. I just wanted to get through this although there were days when I thought that I never would. 

With physical therapy, we even tried more than just manual releases. Tieya had taken dry needling courses, a technique used to release tight trigger points in muscles. I had trigger points within my glutes, hamstrings, adductors, perineum and external pelvic floor muscles. She said that while dry needling is painful, it would help release those tight nodules of muscles. So I started that and yes, it was painful and I was sore afterwards. A thin filament needle gets inserted into a trigger point of tight muscle fibers and pulsated, causing tiny twitches until they stop. I did that 5-6 times over a few months. I distinctly remember hobbling to the metro station and riding home after those dry needling sessions, and icing those spots in the evening. And being hopeful that they would lead to greater progress with the dilators. But dry needling wasn’t the magical solution. The largest dilator was still slow and uncomfortable to insert and painful to remove.

In October 2018, I spoke with Tieya during an appointment and told her that I felt like I had plateaued, and I wasn’t sure what was going on. She agreed and noticed that the baseline tension of my pelvic floor muscles hadn’t been reducing, especially in a couple of trouble spots. We had spoken about seeing medical specialists in the field in 2017, but I really wasn’t in the mindset to meet a doctor I didn’t know, go through my whole history again, and then have to trust someone to examine me physically again. The thought of all of that was too much and I was worried that I would need more needles, medication or surgery.

I then remembered that in the summer, I had come across a pelvic pain specialist in New York City. Someone on Facebook had shared an article about Muslim girls lacking sex education and the myths around menstruation that exist. The author had talked about being a pelvic pain doctor. I found the article again and looked up the practice as well as on social media. I loved what I saw – someone who was also South Asian and Muslim, incredibly knowledgeable, and using her platform on Instagram to talk about pelvic pain in a holistic way. I told my PT about her and she agreed that I should see her for an evaluation, just to rule out anything else that was happening. 

That was the beginning of the end, but I didn’t know it then.