CD is a woman who has been living with pelvic pain. Here she gives an honest account of her life with pain and all that she has gone through. Her story is a hopeful one, but it wasn’t all roses. She has seen too many therapists. Too many.
1. What symptoms brought you to physical therapy in the beginning?
Pain during pelvic exams, tampon use as well as pain and tearing during intercourse. Eventually my symptoms progressed to constant itching and burning in the vulva. I felt like I had a yeast infection constantly but always tested negative.
2. Why do you think you had these symptoms?
In the beginning I had no idea what was happening and why. My first gynecologist told that I was just “wired differently”. I was experiencing other health problems and was told by doctors that they were all in my head – and for a while I believed them. Much later I found out that I had Hashimoto’s disease and Lyme disease causing systemic inflammation and hormonal imbalances contributing to multiple pelvic pain conditions.
3. How were these symptoms affecting your life?
These symptoms caused a lot of conflict in my marriage and eventually was a big factor in my divorce. It was difficult for me to sit while driving and at work. I dreaded going to the gynecologist. Eventually I had so much pain that I could not wear jeans or tight pants and avoided wearing underwear and pants as often as I could.
4. Was physical therapy helpful in eliminating your symptoms?
Physical therapy was very helpful in eliminating my symptoms. Not only did it reduce my pelvic floor dysfunction but my physical therapist was able to identify my symptoms as being related to a few pelvic pain conditions. She referred me to a few knowledgeable pelvic pain specialists who were able to correctly diagnose and effectively treat the cause of my symptoms.
5. How many pelvic floor physical therapists have you seen?
I’ve seen 8 or 9 pelvic floor physical therapists
6. What was your first experience with a pelvic floor physical therapist like?
It was scary and extremely painful. The manual therapy she performed hurt a lot and my husband had to come with me to hold my hand. Eventually the pain reduced a little but we didn’t make much progress. She was very stern and she recommended that I have sex often – even though I tore every time I had intercourse. She was impatient with me and frustrated at my lack of progress and eventually told me that we were done and that she was discharging me.
7. What about your other experiences?
My second PT was from a different clinic that specialized in pelvic floor physical therapy. She focused on manual therapy but was also very creative with her work. She would base her work on how I was feeling that day. She massaged my hamstrings, hips, and stomach instead of just internal work. She performed lymphatic massage, craniosacral therapy, and visceral manipulation. She gave me advice on what kind of lube to use and how to care for my vulva. She ended up having to leave the practice for her own health reasons and I started to see a different PT at the same clinic. She had the same approach to my care. After a while, my insurance stopped paying for my visits and I stopped going. Then after a new year began and my insurance started paying again I started to see a different therapist at the same clinic. Her approach was similar to the others at the clinic. My symptoms improved during this time in that I could tolerate internal therapy much better but sex and pelvic exams were still painful.
Eventually, I moved out of the area and started to see a PT near my new home. Her approach was that I needed to strengthen my pelvic floor muscles. She was very patient with me and we worked on strengthening, biofeedback as well as manual therapy. I saw her for maybe 6 months – 1 year until I moved out of the area. I didn’t notice any improvements during this time.
When I moved to Texas I was referred to a PT at a urology clinic who came highly recommended. This PT had a totally different approach. She was focused on strengthening and only strengthening. She would leave me alone in a treatment room for an hour to do strengthening exercises on my own. My symptoms became worse during treatment and when I told her my concerns she criticized me. She was not supportive at all and her bedside manner was very angry and reactive. Eventually, it became clear to me that I needed the manual therapy that the other practitioners provided for me. When I asked her if she would consider this for me her reply was “I don’t do that. I am very experienced. I know what works and this is what works so this is what we are going to do. Also, I have arthritis and can’t do manual therapy.” I didn’t want to argue with her but I knew my body and I knew that her approach was not for me.
I was finally referred to Sullivan PT and started to see a physical therapist who was focused on manual therapy. She ended up leaving and I was assigned to a different therapist. My new PT was out of the office one day and I was assigned to Sara and that’s when I started to see the most improvement in my symptoms.
8. 8 or 9 physical therapists is a lot. Why did you keep seeing therapists?
I kept seeing different physical therapists at my husband (now ex’s) urging. I had pretty much accepted that I was always going to have pelvic pain and didn’t want to do anything about it because I was sick of getting dismissed but my husband encouraged me to address it. I had hope that a different therapist and a different approach would be the key for me to overcoming pelvic pain.
9. What was your lowest moment throughout your rehab process?
My lowest moment was probably when my husband and I separated. I was noticing improvements at this time but I knew that I was going to have great difficulty affording the cost of therapy without his help (at this point insurance had stopped paying).
10. How did you know that you were starting to improve? What did you feel or what were you able to do?
I knew I was improving when I could start to wear pants and underwear again without pain and burning. I felt well enough to sit for long periods of time without discomfort. I also started to tolerate internal therapy much better and had a much better range of motion in my hips. Eventually, I started having intercourse with a new partner and was able to do so without tearing. It was still painful but significantly less.
11. How do you feel your pelvic pain affected your sexuality?
My pelvic pain interfered in the relationship between me and my body and me and my sexuality. When I was in pain, I was not in touch with my body and felt very much like I was broken. Now that I am better, I understand that I am entitled to pleasure and a pain-free life. I have a much better relationship with my body and I appreciate it much more. This has allowed me to explore and become better acquainted with my sexuality. I am much more confident now because I know what my body needs. The whole process has been a sort of rediscovery or reclaiming of my sexuality and it’s been very empowering.
If you have any questions or comments, please leave them anonymously in the comment section below or email me at [email protected]