Chronic Pelvic Pain and Depression
Emotional Effects of Chronic Pelvic Pain
In the wake of last year’s tragic suicides of Kate Spade and Anthony Bourdain, two highly successful people who from outside appearances looked as if they “had it all,” I want to write about my experience with depression, suicidal thinking and chronic pelvic pain.
The very sad thing is that both of these individuals looked very good from the outside, but none of us knew what they were experiencing inside themselves. What I do know is that they were in such extreme emotional pain that ending their lives seemed like the only way out of pain.
I know many chronic pelvic pain sufferers who may look fine on the outside but are secretly battling physical pain that can cause a huge amount of emotional pain due to how it can affect a woman’s relationship with herself, her partner and every other aspect of her life.
Both the stories of Kate and Anthony affected me very deeply because I understand the exact type of emotional pain they were both in. However, I was somehow lucky enough to hang on and not act on how hopeless I was feeling at that time. Here’s my story.
The Emotional Impact of Chronic Pelvic Pain
I suffered from chronic pelvic pain for over 25 years before finding my way out of pain in 2012.
My chronic pelvic pain consisted of a combination of provoked vestibulodynia, Interstitial cystitis and endometriosis. Experiencing over 2 decades of going from doctor to doctor trying to find a way out of physical pain coupled with the emotional pain of not being able to have the physical intimacy that I longed for in a relationship with a man took its toll on my emotions and at one point left me feeling like I wanted to end my life.
Today I want to talk about how chronic pelvic pain can leave a woman feeling very depressed, hopeless and often suicidal. In fact, I have followed pelvic pain groups on Facebook for a number of years now and on average I have seen at least one to two suicides a year among pelvic pain sufferers. It always shakes me to my core when I read that another woman has taken her life due to pelvic pain because that could have been me, and I wish I could have helped saved that woman before she made the irreversible choice to end her life.
I want women to know that it is very easy to become depressed when you have pelvic pain because it can deeply affect all of your relationships in a very negative way.
Your Relationship with Yourself
The first relationship that my pelvic pain began to negatively affect was my relationship with myself.
This is especially damaging because I believe from experience that it really is the quality of one’s relationship with oneself than can determine the quality of relationships that we have with others.
It was very hard difficult to be a young single girl in my twenties with a condition that caused vaginal intercourse to cause me horrific pain.
After 5 years of going from doctor to doctor with none of them being able to heal me, I began to feel like I was “damaged goods” and not “good enough” as a woman to be in a relationship with a man because of my condition. In fact, I started having feelings of being unlovable and that was when my self-esteem and self-worth began to take a nose dive.
Impacting Your Relationships with Others
As I mentioned before, once chronic pelvic pain begins to seriously erode your self-esteem it also begins to affect all your relationships.
I remember feeling so jealous of my girlfriends who would brag about having such great sex with some guy she was dating and how they were madly in love. I would sit and listen to them at lunch thinking that there was no way anyone would ever even want me because of my condition.
I never let people know that this was how I felt on the inside because I did not want people to know the emotional pain I was in.
I attempted to have relationships with some men but eventually, the stress of my pelvic pain would eventually end the relationship. I felt so terrible about myself in the relationship due to my condition that I wasn’t able to take in love from any of the men who were trying to cope with my condition.
Even though chronic pelvic pain was having a very negative impact upon my life, I had never felt suicidal until a surgery I had for provoked vestibulodynia went terribly wrong in 1997.
The doctor I thought would cure me
When I was 28 years old, I was rushed to the emergency room one night after having horrendous lower abdominal pains. What I thought was maybe a bad case of food poisoning turned out to be a 6-centimeter cyst on my right ovary.
The next day I found a doctor in Palo Alto named Dr. Arnold Kresch who was a renowned pelvic pain specialist and professor of gynecology at Stanford University. I was told by Dr. Kresch’s staff that he was one of the most highly regarded female pelvic pain specialists in the United States and that I was very lucky to be under his care.
When I met with Dr. Kresch in the exam room he explained to me that I needed to go into surgery as soon as possible because the cyst on my right ovary was on the verge of bursting open. He explained that the cyst on my ovary was a sign that I had endometriosis, and that I would need laparoscopic surgery as soon as possible.
At that time, I also showed Dr. Kresch my provoked vestibulodynia and explained to him that I had pain whenever my vestibule was touched, consequently making vaginal intercourse was very painful for me.
He told me that he could completely cure my condition by lasering my vulvar skin with a pulse dye laser and that I was so lucky to find a doctor like him that knows how to treat this condition. He then explained to me that this laser would shrink the nerve endings in my vestibule and take all my pain away.
I felt like my knight and shining armor of a doctor had arrived. I believed that I was finally going to get out of pain once and for all. I believed that I was now going to be able to have a wonderful life that could include an amazing relationship with a man.
I booked my laparoscopic and pulse dye laser surgery that day, and I went home feeling so excited that my years of suffering were now going to come to an end.
I showed up to the surgery center on the day of my surgery full of hope and excitement that I had finally found the answer to all my pelvic pain problems. I said hello to Dr. Kresch as I was being wheeled into surgery. I then spoke to the anesthesiologist who began to put a black mask over my face and had me count to 10 very slowly as I breathed in the anesthesia medication. By the count of 5, I was completely out.
I woke up in the recovery room full of hope and was then wheeled into my room for an overnight stay for nurses to watch me after the surgery.
It was in the very early hours of the morning that I realized that perhaps something had gone terribly wrong.
I had to use the bathroom in the middle of the night, so I called the nurse to help get me to the bathroom. When I began to pee, I saw that an entire layer of my vestibule skin fell into the toilet, and I felt an excruciating pain in my vestibule to a degree of which I had never felt before.
When I woke up the next day, I was in even more pain than in the early morning hours because the anesthesia had worn off.
Instead of having pain only when my vestibule was touched, I now had pain all the time.
I had the nurses call Dr. Kresch to tell him what happened and he said not to worry about it and that my pain had to get worse before it got better.
A Devastating Outcome
I kept trying to believe that my vulvodynia was only worse now because it was going to get better even though I was now having an increase in pain in my urethra along with bladder frequency. However, the day came when my worst fears were confirmed. It was 3 months after the surgery and I was at work in downtown San Francisco when suddenly my vestibule and entire vagina swelled up to the size of a grapefruit. It was one of the most painful things I had ever experienced.
I told my boss I had to rush to the doctor. I grabbed a bag of ice from the work freezer and drove down to Dr. Kresch’s in Palo Alto office with the bag of ice between my legs.
I ran into the doctor’s office and told the secretary it was an emergency and that I needed to see Dr. Kresch immediately. They took me into a room where I got naked from the waist down and put on a paper gown while I waited for Dr. Kresch. I sat on the examining room table with the bag of ice between my legs and let tears run down my face and hit the paper lining on the table.
Dr. Kresch and his nurse practitioner finally came in to see me. I had Dr. Kresch examine me and I explained how I now had pain in my vulvar region every moment of the day and not just when the area is touched. I explained that I was far worse and I did not know why I wasn’t getting better like he said I would.
Dr. Kresch then looked up at me and said, “Well, the laser surgery obviously did not work for you because you are now worse. I am sorry but I do not know what to do. If I can’t help you I do not know you can help you…”
I looked at him and I said, “I am worse Dr. Kresch. What are you going to do now? Are you going to call a colleague to see if anyone else can help me? Can you research what else you could do to get me better?” He looked at me straight in the eye and said, “No, I am sorry. You are now worse and there is nothing else I can do for you. I do not know how to help you. Again, if I can’t get you out of pain, I don’t know who else can help you!” and with that, he walked out of the room.
I looked at his nurse practitioner and I said, “Are you kidding me? I am now worse and all he can say is he is sorry? He is a Stanford professor of gynecology! Can’t he get on the phone and ask one of his colleagues in this field to give him some ideas of what can be done for me? What am I supposed to do now?”
The nurse looked at me and with tears in her eyes she said, “Here is the name of a really good acupuncturist and a wonderful therapist who specialized in helping women with pelvic pain. She deals with women who are just like you and I think she could help you. That’s all I can do for you” and then she walked out of the room.
I burst into tears again for I could not believe that my condition was now worse and all Dr. Kresch could do was walk out of the room and abandon me in this worsened state.
My Moment of Truth
I drove home to my apartment in San Francisco crying the entire time.
The next day I called the therapist his office recommended because I was in the darkest place I had ever been in my entire life. She could hear in my voice that I was in crisis and made a late-night appointment available to me that day.
It was a very stormy day and the dark clouds, thunder and pouring rain from the sky seem to match the exact inner turmoil I was feeling inside myself. I got in my car and drove through this storm to see this therapist.
As I drove in my car, I started having the worst thoughts come into my head. In fact, I began to realize that I simply did not want to live anymore.
The one doctor who was supposed to fix my problem had made it worse and dropped me as a patient because he did not know what to do. Was I going to be worse forever? I worried that I was now going to be “damaged goods” for the rest of my life.
Horrible thoughts began to pour into my head: “No one is going to ever want to be with you. You are “damaged goods,” not “good enough” and not worthy of being loved by anyone.”
I kept driving as these horrendous thoughts kept running through my head. I then approached the onramp to the Golden Gate bridge.
As soon as my car got on the Golden Gate bridge my heart started to pound deeply in my chest, and I realized that I could end all my pain now if I stopped the car and jumped off the bridge.
I felt so tempted to jump. I felt completely hopeless and a part of me just didn’t want to live anymore.
As I continued driving, I clenched my hands on the steering wheel until there were completely white to keep myself driving instead of stopping the car to jump over the bridge.
Tears streamed down my face as I fought this inner war inside of myself. One part of me really wanted to end it all and just jump off the bridge and another part of me desperately wanted to get better and find a way to live.
After I passed over the Golden Gate bridge my hands relaxed and returned to their normal color because the opportunity and strong urge to jump off the bridge was over and all I had to do was keep driving forward. The part of me that wanted to live won over the part of me that wanted to die.
I finally made it to the therapist office and I cried with her over the horrible emotional pain I was in and my feelings of wanting to end my life over this condition. I then left her office with the promise that just for this week, I would not kill myself.
My Long Road to a Happy Ending
I would love to say that this was the only instance I thought about ending my life over my chronic pelvic pain but it was not.
Some days I would cry myself to sleep and ask God to either find a way for me to get out of pain — or to take my life in a tragic accident — because I did not have the guts to end my life myself. This was the depth of emotional pain that chronic pelvic pain caused within me.
There were many times that I said the emotional pain of chronic pelvic pain far outweighed the physical pain for me because I felt so lonely and often unworthy of being in a relationship.
I have to say that today I am deeply grateful that the part of me that wanted to live and heal from pelvic pain won. I am proud to say that I never gave up and I continued to search for a way to get out of chronic pelvic pain until the miracle finally happened.
My Healing Miracle
In late 2009, I finally found a very gifted physician named Dr. Irwin Goldstein and highly talented doctor of physical therapy, named Dr. Julie Sarton who helped me put all the pieces together and solve my chronic pelvic pain. After 3 years of working diligently with them, I became pain free in 2012 and have been pain-free every since.
Dr. Irwin Goldstein found a hormonal imbalance that no doctor had ever found in the 25 years I suffered with pelvic pain. He found that a protein made by the liver called Sex Hormone Binding Globulin was nearly 3 times the normal limit within my body. This was caused as a result of being on Birth Control Pills for over 10 years to try to control my endometriosis. Sex Hormone Binding Globulin binds to the free testosterone in a woman’s body. So even though my body was producing normal amounts of testosterone, it was binding in my blood and was not available to my vestibule or other genital tissue. As it turns out, the health of a woman’s vestibule and surrounding genital tissue needs adequate amounts of both testosterone and estrogen. Dr. Goldstein instructed me to get off birth control pills and he gave me supplemental testosterone. This caused my vestibule and surrounding tissues to become more healthy and less painful. However, I still had pain whenever my vestibule was touched and I had pain in my urethra along with bladder frequency. Upon the advice of Dr. Goldstein, I then had a full vestibulectomy performed by him. My surgery was successful. The pain in my vestibule was gone and the pain in my urethra and bladder frequency lessened greatly. However, I was not out of the woods yet because my pelvic floor was still like a cement sidewalk. I then went to Dr. Julie Sarton who was the best physical therapist I had ever seen, and she suggested that I have Botox injected into my pelvic floor before doing physical therapy with her because it would really help us make headway on relaxing my pelvic floor. I agreed and had Botox injected to my pelvic floor by Dr. Goldstein 6 months after surgery. Having Botox injected into my pelvic floor felt like a spiritual experience for me because it was the first time I experienced no pain in the opening of my vagina and urethra and all of my symptoms of bladder frequency were gone as well. I then did lots of physical therapy while my pelvic floor was relaxed by the Botox and the physical therapy finally worked after years of never getting anywhere, and I have been 100% pain-free ever since.
If you have chronic pelvic pain and you feel hopeless about ever getting better, I want you to know that I know exactly how you feel. I have been there myself. People who have never experienced chronic pelvic pain can tell you that they understand — but no one can really understand the depths of pain from this condition until they have lived through it themselves.
What I can tell you, is that no matter how long you have been in pain, there is hope for getting better. No one thought that I could become 100% pain-free after 25 years of pain — but I am here to tell you it is possible and I am living proof of it.
I am so deeply grateful that I never took my own life and that I now live an amazing life filled with love, kindness, partnership, and purpose.
Also, if you are feeling suicide over this condition, please remember my story and believe there is hope no matter how long you have been suffering and call the suicide prevention hotline at (800) 273-8255 (the number may be different, depending on where you live — please Google it or check with your hospital. They are available 24 hours a day.
I truly believe that everything happens for a reason. Since making my full recovery from pelvic pain, my life mission is to help women with pelvic pain to find their way out of pain far faster than I did. If you are tired of suffering from chronic pelvic pain and are interested in working with a pelvic pain coach to give you the support, tools and guidance you need to get out of pain, view your options on how you can work with me here >>