Before you read my story please note that it reflects my experience alone. It is my hope that my story will assist in raising understanding and awareness of pelvic pain in our community and is written for no other purpose. Some of the treatments I have tried may or may not work for you, though it is important that you always follow the advice of qualified health professionals. The important thing is that you give consideration to both cure orientated and management orientated approaches to pelvic pain. This process is individual and can take some time and is not always easy, so if this is you, hang in there! I decline to mention the names and locations of services and health professionals I have discussed in my story in the interests of remaining unbiased.
My name is Tiffany Brooks and I have experienced pelvic pain for over 15 years. My experience with pelvic pain began with particularly bad pain before, during and after my periods from the age of 16 while in high school. This quickly escalated to experiencing pain in my pelvic region almost daily and particularly severely just prior to and during my period. My high pain levels meant that I often had time off of school and the grades I had worked so hard for began to suffer. I often felt fatigue and flat and spent a lot of time in bed and sleeping. My pain meant that I had to give up many of the interests I had enjoyed outside of school, including long distance running. After experiencing pain for around a year, I began to seek professional help with the assistance of my supportive family.
Initially when I first began the process of seeking help, I believed that if I could just find the right professional or the correct medication, then I could go back to my pain free life as it was before and forget all about it. My first port of call was a very confronting appointment with my GP. I remember feeling embarrassed and uncomfortable as I described my pain and the impact it was having on me. As I was rather slender at this point, my GP asked a huge range of questions as to whether I was taking drugs or refraining from eating. I was then tested for every sexually transmitted infection under the sun (all clear!). After a few appointments my GP recommended I try the contraceptive pill. Several nasty side effects later I returned to the GP with the same amount of pain. Over the course of seeking treatment for my pelvic pain I have tried seven different contraceptive pills. I have heard a range of stories from other girls and women who have found the pill to be an effective method of managing their pelvic pain. However, none of the contraceptive pills offered effective relief of pain for me, and their side effects did not make them worthwhile in my case. My contact with the GP lasted about five years with no noticeable improvement in my pelvic pain.
Having contact with a doctor and having limited success took a toll both physically and emotionally. I found it difficult to pursue activities I enjoyed such as seeing friends and doing leisure activities. I often found that others did not understand my pelvic pain and the impact it had, as they could not see anything wrong with me based on my appearance. I remember being accused of being lazy, avoiding people or trying to get out of things such as attending school or doing homework tasks. A number of people told me to just take some pain relief and get on with it. As a teenager dating was a nightmare, as there was the ever daunting prospect in reference to why I could not do certain things. I remember many boyfriends across the years suggesting that I had an infection, that I had been promiscuous, and that I was cheating on them or worse holding out on them. Even more hurtful were the partners that appeared not to be bothered when I explained the situation, then changed their mind as soon as things took a turn for the worst. By the end of five years my self-esteem was pretty much non-existent and I had felt helpless with regard to my pelvic pain. I began to feel as though I would never experience life without pelvic pain and I began to have difficulty coping with this thought.
I was eventually referred to my first appointment with a gynaecologist. I recall at this point I had no idea what a gynaecologist was and was quite honestly expecting to rock up to the appointment for a chat with someone. What followed was an appointment full of very confronting questions about my body followed by a very painful and invasive internal and external examination. Following this the gynaecologist told me that there was nothing physically wrong with me and perhaps an appointment with a psychologist might help. At this point, I was unaware of what a psychologist was other than thinking they saw crazy people. Currently, as a registered psychologist myself, I have a better understanding as to how valuable psychology can be in assisting people to manage their persistent pain. However, at the time, I took this as a suggestion that my pain was all in in my head and I was essentially making it up. I left the appointment feeling devastated that nobody believed that my pain was real and that it would continue to ruin my life.
My family encouraged me to seek a second opinion with a different gynaecologist. So after enduring a painful six month wait, I attended a second appointment with a similarly painful and uncomfortable examination and series of questions. Following this the gynaecologist told me that I would need observational surgery as they thought that I had something called Endometriosis. Not only did I have no idea what this excessively long word meant, I was also in total shock as to the two totally different opinions I had received. I agreed to have a laparoscopy and this confirmed mild endometriosis. I remember being shocked that so little Endometriosis could have caused me such severe pain. I now know that the level of pain you experience does not necessarily reflect the size of physical damage, in my case amount of endometriosis. In fact, some women experience pelvic pain without a diagnosed medical condition or injury. The gynaecologist showed me pictures as to where she had burnt the endometrial cells which usually grew inside my uterus off of some of the organs in my abdomen. The pictures alone would have been enough to make my stomach turn. However, the procedure was also associated with severe pain and swelling that had strangers asking ‘how long before you’re due’? However, at the time none of this mattered as I believed I had found the reason for my pain and that after the swelling had subsided I would be pain free!
Sadly this was not to be. Following a brief stage of reduced pelvic pain after my surgical wounds had healed, my pelvic pain gradually returned until it was almost as severe as prior to my surgery. I was then referred to a number of other specialist gynaecologists and a pain clinic, facing long waiting times to get into each. Throughout the time I waited, I was in severe pain that on some days meant that I could not manage much at all. During this time I tried a number of recommended medications including pain relief prescriptions, hormones and creams with limited success. I have recently tried a pelvic physiotherapist to work on relaxing my pelvic muscles and this has been very successful for me. I was also prescribed medication to assist with managing nerve pain. Despite some improvement in my pain levels I still had only mild improvement in my pelvic pain.
After a few years I was referred to a specialist pelvic pain clinic. After the now all too familiar questions and examinations to which I had become much more accustomed, a second laparoscopy was recommended. I remember at the time being confused as to why I needed a second surgery of the same type as I had experienced before. I was also very much afraid of experiencing the pain and discomfort I had experienced following my first surgery. This time a small amount of Endometriosis was excised (cut out) of two small spaces in my lower abdomen called the Pouch of Douglas. I was also diagnosed as having the cells from the lining of my uterus growing inside muscle tissue in my abdomen (Adenomyosis). Hormone treatment was recommended in order to manage both the Endometriosis and Adenomyosis and I gave the Mirena (IUD) a try. A Mirena delivers progesterone to the inside of the uterus and it worked for me. I noticed a significant improvement in my pain level, and less bleeding with periods. However, after two years I worked out that I needed my Mirena replaced every two years rather than every five, to keep the hormones at the level I needed.
Despite improvements in my pain, I still had pelvic pain each daily especially around period time. This is when I started to see the pelvic physiotherapist I mentioned earlier. I learned that my history of pelvic pain, had resulted in pelvic muscles that were tight, painful but also weak. I began working on exercises to relax my pelvic muscles and this resulted in significant pain relief on a daily basis. Light exercise such as walking or yoga became possible again, something I could not have managed before due to my pelvic pain.
Throughout my experience of pelvic pain, I also experienced persistent infections, back pain and muscle tightness, for which I have sought treatment from gynaecologists, chiropractors and an osteopath. I’ve used alternative therapies for my pain and energy levels. I’ve personally found that naturopathy and acupuncture have helped, and I’ve researched psychological techniques for pacing activity to manage my pain and avoid burning out.
At this point I had days which were pain free. I noticed that at times of high stress with my studies, my pain level and pelvic muscle tightness would increase. However, I also noticed that around every four to six months, there was a week of severe abdominal pain not related to my period. On a few occasions, I attended an emergency department, concerned it might be my appendix. After one such visit, an internal ultrasound showed an ovarian cyst, which whilst too small to be operated on was extremely painful! I re-tried a newer pill to stop the ovarian cysts, but once again found the side -effects mad this too difficult. I still experience these bouts of severe pain with ovarian cysts at times.
Currently most of my days are pain free, though it does flare up again with stress or an ovarian cyst. That’s when the muscles tighten up again and I feel sick. However, it has taken 15 years to get to this point as well as a combination of medication and pain management techniques from many professional disciplines. My pelvic pain has proven very frustrating at times and occasionally still is. There were times were I just tried to get on with things and ignore it and ended up in more pain feeling completely burnt out. Over this time I have been amazed at the limited services available for people with persistent pelvic pain, the lack of understanding and awareness of pelvic pain in the community, and the lack of research into pelvic pain conditions. By raising awareness and understanding of pelvic pain and related conditions I believe that we can begin to change these things and make adequate treatment available.
