Giving feedback to previous doctors

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Over the years I have had many doctors that have dismissed me and my endometriosis symptoms. Unfortunately, this is a reality for almost all patients with endometriosis. Often I just move on to a new doctor without giving the last doctor any feedback. However, after another doctor took my urinary symptoms seriously and found some treatments that helped manage them, I felt that it was my duty to email the original doctor to supply them with this information so that in the future they would be more informed in treating new patients.

I tried to be as respectful, empathetic and civil as possible. Doctors are humans and make mistakes, and endometriosis is a disease that I imagine would be frustrating to treat, as there are no treatments that work for everyone, and often patients end up with none of the treatments being fully effective. It's unpredictable and far from simple. However, on the other side of the equation, women with endometriosis are often marginalised and told that the pain is in their own head or that there is nothing that can be done and that they should just deal with it. This is not okay, and many women end up having to cope with symptoms without even knowing about or trying treatments that may work for them.

Health professionals, can you add any tips for communicating with doctors and health professionals who have misdiagnosed or dismissed symptoms?

The following is my email to the receptionist at this doctor's clinic (name censored to protect identity):

Dear Sir/Madam,

I would like to give some feedback on treatment I received from Dr xxxxxx in December 2012. I went to see Dr xxxxxxx about a few issues that had persisted after a laparoscopy was conducted on me by another doctor in March 2012, where I was diagnosed with endometriosis and some of the endometriosis was ablated.  I went to him as I was being woken up in the middle of the night multiple times with my urinary symptoms (urgency, frequency, burning) and it was also causing me to miss work. Dr xxxxxx dismissed me and told me that if he had to get up in the middle of the night to pee, I could “deal with it” too. Being 24 years old when I heard this, I did not accept this. I went and did my own research, changed my diet (cut out wheat, caffeine, alcohol and soy) and tailored my exercise plan. After these changes did not give me the full improvement that I had hoped for, I then sought a second opinion in Dr Susan Evans in Adelaide. She prescribed amitriptyline (25mg a day) for neuropathic pain that she believed was causing some of these symptoms, and pelvic floor physiotherapy to treat muscles that had become permanently tight due to my long history of pelvic pain. As a combination of both of these treatments over the course of several months, my urinary symptoms have pretty much disappeared and I can now sleep through the night easily and not spend my work day distracted by urinary pain.

Dr xxxx did prescribe me with tranexamic acid for heavy bleeding during this same appointment and that has helped me greatly. I am thankful for that.

I hope you will relay my feedback to Dr xxxxx and that he will take it into account when treating future patients.

Sincerely,
Elizabeth Metz

How I manage my pesky bladder symptoms

This post should also be entitled "How I escaped the living hell that is feeling like you have a constant UTI."

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A UTI, urinary tract infection, for those not in the know, is most commonly caused by a bacteria called Escherichia coli (E. coli) which usually resides in the digestive system and bowel. When this bacteria invades the urethra and subsequently, bladder, it can result in lots of really fun symptoms including:
-frequency (feeling like you need to pee more often than you usually do)
-urgency (feeling like you need to pee really badly, even when you try and end up only peeing a few drops or nothing at all)
-burning pain sensation when urinating a.k.a fires of hell descending on your nether regions
-pain above the pubic bone

If a UTI progresses to the kidneys (through the tubes that connect your bladder and kidneys, called ureters) you can get flank pain and fever. Kidney infections can be fatal which is why doctors tend to prescribe antibiotics quite readily.

I had every single symptom above (apart from fever), plus dysuria (pain at the end of peeing). I would get up multiple times a night to pee, and on my worst nights I would spend hours on the toilet, in pain, not peeing, but feeling like I needed to. I even had a few attacks where the symptoms magnified themselves so much that I ended up with horrible flank pain that had me sobbing and screaming in pain and I was convinced I had a kidney infection (just no fever). I would drink the maximum amount of Ural allowed and drink cranberry juice and take cranberry tablets and it wouldn't make a difference. The pain was so bad it was making me depressed, as I wasn't sleeping properly and was constantly uncomfortable. I would get up to go to the toilet more than once an hour at work and it was difficult to concentrate. I often sneakily hid a heat pack on my crotch at my work desk for relief, and at home I would put an ice pack on my crotch when it got really bad.

Thing is, what I was having was not a UTI. Every time I went to the doctor and peed in a cup, the results would come back saying that I had red blood cells and white blood cells in my urine, but no bacteria consistent with an infection. The doctors still gave me antibiotics but I stopped taking them after the first few attacks because they wreaked havoc with my body (i.e. I ended up with UTI-like symptoms AND thrush. FUN!) I also thankfully have a dad who is a doctor, so even though he lives in another state, I could call up and clarify whether I was making a medically stupid decision in deciding not to take the antibiotics.

So, what did end up I doing about it?

Firstly, I went to my gyne, because I thought that endometriosis on my bladder might be the cause. He told me that if he had to get up in the middle of the night to pee, I could put up with it too. I decided that he was ridiculous and should probably go and get his prostate checked, and got a new gyne. (It took over a year to find a new one, mind you.)

In the meantime, I stopped having caffeine intake of any kind, bar a few squares of dark chocolate occasionally. I had already stopped drinking coffee a few years ago after having terrible reactions to it, but now I cut out all black tea and green tea and only drank herbal teas like rooibus, peppermint, rose or chamomile. This was not fun for me as I was (and still am) a tea nut. I. love. my. tea. However, the UTI-like symptoms were actually driving me crazy with lack of sleep and pain, so I took drastic measures. I also limited my alcohol intake as I found my symptoms were worse when I drank. I even stopped doing my beloved Bikram yoga as I found it was irritating my bladder too much to have to drink that much water to make up for what you sweat.

Next, my new gyne prescribed me amitriptyline (Endep) for neuropathic pain. I had been in pain for such a long time from endometriosis that my entire pelvis and genitalia had become hypersensitive, with my neural pathways sending an expression to my brain that was much greater than the stimulus that was coming in. Think of it as your brain receiving a message that you have just been cut with a samurai sword when you've just had a small scratch.

She put me on 25 mg a day, starting at 5 mg a day and going up 5mg a day in my dosage every week (i.e., week 1=5mg/day, week 2=10mg/day, week 3=15mg/day, etc). This took a few weeks to start working but is AMAZING. Side effects that it gave me were headaches occasionally in the first two weeks of use, incredible drowsiness after taking the tablet (like you have to go to sleep then and there) and slightly dry eyes occasionally. I have now been taking this medication for 6 months have found that I no longer get so drowsy when I take the pill but do have struggles waking up in the morning if I don't take it early enough the night before. I usually take it around 8pm if possible, and if I have to get up really early the next day I'll take it at 6pm. It also makes you very sensitive to alcohol, but that has been good for me as alcohol worsens my endo symptoms anyway so it gives me extra motivation to limit my intake. Another option if amitriptyline does not work for you is Lyrica.

Finally, I started seeing a pelvic floor physiotherapist. I didn't realise it, but I had pelvic floor dysfunction and this was contributing to my urinary symptoms. Pelvic floor dysfunction is when the muscles in the pelvic floor and surrounds spend so much time in spasm due to pain (think of how you grit your teeth when you have a toothache, or clench your fist when you hurt your arm), that that becomes their default position. These muscles become very tight and this can cause even more pain than the original cause over time. Pelvic floor physiotherapy uses exercises, relaxation and massage techniques to try and retrain these muscles to act as they should.

I found an amazing physiotherapist in Ali Burnett at the Pelvic Pain Clinic in SA (when I visit my gynecologist), and Maureen Bailey in Canberra. Canberra also has a pelvic floor physiotherapist in the public health system that you can visit free of charge, but this was not available when I started my treatment. I went weekly and that, coupled with using a relaxation CD and dilators, helped improve my bladder symptoms and also other pelvic pain. I also did regular yoga for stretching and relaxation. Maureen Bailey also does remedial massage on my back which helps with the flank pain.

If you are a woman with endometriosis, notice whether you are clenching your pelvic floor right now. I often notice that I clench my pelvic floor in everyday situations, like sitting on a chair or talking to friends, and need to consistently remind myself to relax it. It's even more important in winter, when the cold makes you tense up.

After taking all of these measures, I still had some vulval sensitivity, and so my gyne prescribed me an amitriptyline topical cream that I apply to the area twice a day. I am more consistent in applying this when I have flare ups, but I find that even just applying it 4 times a week keeps the number and severity of my flare ups of bladder symptoms down.

I hope that this helps any women out there with endometriosis who are experiencing similar symptoms and want an option other than antibiotics. Please be patient with these treatments, as none of them work overnight, but if you persist, hopefully you will have similar results to what I have had. If you have any questions feel free to email me at vintagelib@gmail.com. (However, I am not a doctor or other medical professional so please consult with your doctor if you think any of these treatments might work for you.)

The impacts of living with endometriosis

Photo courtesy of Donna Ciccia, Endometriosis Australia

Tonight, as you read this, I will be co-MCing a sold-out (tickets were free but limited) endometriosis information night organised by the Women's Centre for Health Matters at the Legislative Assembly in Canberra. At this event, co-founder Katie Williams will be delivering this speech on behalf of the Canberra Endometriosis Network. I'm pretty sure I'm going to cry.

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C.S Lewis said, ‘Friendship is born at that moment when one man says to another ‘what you too? I thought no one but me…’ 

This sums up how Libby and I felt after meeting at an endometriosis information night in May 2012. She newly diagnosed, me at 25, a veteran of 7 years. We had both been living with the impacts of endometriosis since our first period. Before we met we each felt isolated. Together, we knew we were stronger and could not only face this disease, but also change the landscape for others with the same diagnosis. And so, that quote became the motto of what we wanted to achieve.

We created the Canberra Endometriosis Network not long after; initially there were just 3 of us, catching up in my lounge room. We have now proudly grown to over 120 women and have monthly meet ups at the Women’s Centre for Health Matters. We are thankful for the ongoing support of Angela, Marcia and the WCHM, especially for organising and bringing us all together here tonight. To Melissa and the Canberra Endometriosis Centre, we thank you for bringing Libby and I together in the first instance and for your ongoing support and referrals to our Network.
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The Canberra Endometriosis Network supports and welcomes women at all stages of their journey with endometriosis from those in their teens and at the beginning of their journey, through to those still living with the effects of the disease post-hysterectomy. Tonight you will hear a range of experts talk about the symptoms and consequences of endometriosis from a medical point of view. But endometriosis impacts not only a woman’s physical well being; it impacts almost all aspects of her life.

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The widely accepted prevalence of endometriosis is one in ten, but medical professionals acknowledge this number could in fact be much higher. This is a staggering statistic, considering most people in the general population haven’t even heard of the disease and yet with similar or lower prevalence rates we all know about diseases and conditions such as diabetes, arthritis and multiple sclerosis. [Note by Libby for the blog - all these diseases are recognised by spell-check, endometriosis isn't!!]

Endometriosis is rarely recognised, at a minimum, as a chronic health condition, we need to change that. As a society we need to stop seeing endometriosis as a ‘woman’s problem’ but rather a problem that affects all of us. We need to stop seeing it as a condition that affects her menstruation, but rather a condition that requires consideration of the whole person and a multi-disciplinary approach. We need to break down the taboo that remains because talking about endometriosis involves talking about painful sex and painful menstruation. For these reasons there remains a strongly misplaced stigma around suffering with the disease.

In part due to the lack of awareness and ongoing stigma, one of the most significant impacts of living with endometriosis is the feeling of isolation that often starts with the onset of symptoms. And it is just not awareness amongst family, friends, teachers, employers and colleagues we crave, it is awareness amongst the medical community.

The average time it takes for a woman to get an accurate diagnosis of endometriosis is 7 years. Bringing with it a range of often-contradictory emotions. From relief to grief, from empowerment to helplessness, from knowledge to confusion, finally knowing the cause of your pain has a name and yet also knowing there is no cure.

During the interim period to diagnosis, women and girls often feel or are made to feel like they are attention seeking. In some cases this continues well after diagnosis, when treatments are ineffective, do not suit a woman’s lifestyle or needs, or worse when some symptoms are not identified and treated as being linked to, or caused by, endometriosis. When this happens women start to doubt themselves and their sanity.

As you will hear tonight, part of what makes this disease hard to live with, hard to manage and hard to treat, is that symptoms do not directly correlate to the extent of the disease and endometriosis and its treatment affects individual women in individual ways. What works for one, will often not work for another. The Network recognises this and encourages women to search for and find what works for them. This can range from surgery and medication to diet, exercise and physiotherapy. There is no one size fits all approach to endometriosis.

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Symptoms of endometriosis include heavy bleeding and bleeding between periods, extreme and chronic fatigue and infertility. Perhaps the most puzzling symptom is diarrhoea and constipation, and as the endo sisters in the room will know well, the medical miracle that is experiencing both those symptoms in the same toilet visit.

But the most common and debilitating symptom is pain. The pain associated with endometriosis can range from constant, daily aches through to acute sharp, stabbing pains, very few of these are ‘period pains’, often women with endometriosis experience pain throughout the month. In many women constant pain over many years can lead to pelvic floor dysfunction, which Marita will talk about later tonight.

And it can come on in an instant. We may look fine one day, one hour, one minute, and be completely struck down with debilitating pain the next.

It is the invisible and unpredictable nature of the pain associated with endometriosis that impacts many women the most. It makes planning everyday activities, having a social life, making commitments to friends, work and hobbies at times feel impossible.

It is pain that often impacts so many facets of a woman’s life and the choices she makes. For me, in my late teenage years, that meant making the decision to forgo university as I could not commit to study when I couldn’t predict what my body would do. For others, that may mean that they need to take longer to complete study, or career paths that require long hours or are physically demanding are no longer an option. Sometimes passion and drive can overcome these hurdles, but often endometriosis leaves women in a very different position to that which they imagined they would be, leaving them with grief for what might have been. Many women with endometriosis end up re-evaluating how they measure their self-worth.

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Endometriosis has a significant impact on our intimate relationships. Many of us long for the day when we can have spontaneous sexual experiences with our partners without worrying about the associated pain and often bleeding that comes with it. It is also important to note that simply the act of arousal can flare symptoms such as pain.

Many women who suffer from endometriosis also experience various levels of vaginismus (sometimes making penetration impossible). In these situations it is important to acknowledge the impacts and frustrations of sexual dysfunction on both partners. Many people express themselves physically as well as emotionally so when the physical is not possible, communication can be interrupted. It is important for partners to understand that it is not a lack of attraction or desire that leads to women with endometriosis not wanting to engage in sexual activity.

Between the pain, painkillers, side effects of medication (many of which result in diminished libido), medical procedures, unpredictable bleeding, unpredictable bowel and bladder habits, sore breasts and mood swings, a woman with endometriosis may not exactly feel ‘sexy’. But it does not mean saying goodbye to intimacy in your relationship. Taking the time to simply kiss, cuddle and enjoy physical closeness can be very powerful.

It is also important to acknowledge the impact of endometriosis on fertility and the threat of infertility. Infertility is physically and emotionally draining and can also really affect a woman’s self-perception of femininity and worth. Endometriosis is a leading cause of female infertility, and yet in 2014, the primary treatment is still hormonal castration.

Once those who wish to, accomplish the hurdle of motherhood, endometriosis and its symptoms such as pain and fatigue can impact the type of mother a woman wants or desires to be.

Some women are unable to work. Some find themselves facing thousands of dollars’ worth of surgical or fertility bills. The financial impact of having endometriosis can be an overwhelming burden and trigger for stress which in turn is a trigger for pain.Compounded with all the ‘unknowns’ of the disease, you can see how a woman may feel a lack of control.

For family and friends, the disease is hard to fathom and conceptualise because most of the time, we just don’t look sick. How can you see pain? How can you see fatigue? I guarantee that most women with endometriosis wished, at some stage, that they looked the part. But beyond the often-unimpressive signs such as scars, we carry on the outside, tonight you will hear; our insides tell a very different story.

Our symptoms are not imagined, created for convenience or to excuse behaviour. They are real. Women need to be taken seriously, have their concerns addressed and have their symptoms treated appropriately.

Endometriosis is a poorly understood, often inadequately managed and life-long condition with no cure. But is not all doom and gloom. Endometriosis has brought me some positive experiences and taught me some important lessons. It has taught me that my journey is individual. That I need to be my biggest advocate and the change I wish to see with this disease. That asking for help or taking time out are not signs of weakness, but absolutely necessary. It has taught me that I need to educate others who are ignorant of this disease. It has taught me to be more empathetic for the journey of others. And perhaps most importantly it has taught me resilience, to fall down seven times and to get up eight.

More recently it has taught me of the need for support for family, friends and partners of women with this disease, something we are still working on and why it is so important and heart-warming there are so many of you here tonight .

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The Canberra Endometriosis Network is a shoulder to cry on, a sister to commiserate with and a platform to help see the bigger picture. We are 120 women with one goal, to help each other in the daily journey of living with the impacts of endometriosis.

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No part of this speech can be used or reproduced without permission. Permission can be obtained by emailing canberraendometriosisnetwork@gmail.com. Feel free to share and pin this post though, as the more people who read Katie's words, the better! Thank you to Change Focus Media for volunteering their time to film the speeches on the night. Because of their gracious help, a youtube link to the speech will be put here as soon as it is available.