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."

via

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.)

Bayer: Release Visanne in Australia

At the The Impacts of Living with Endometriosis Information Night on Tuesday, we were made aware that a new(ish) treatment for endometriosis (Visanne) is not being made available in Australia because it's producer (Bayer) does not see it as a commercially viable decision. It has already been approved by the TGA in 2010 and declared safe for use. Visanne is a pill that contains dienogest, a different form of progestogen that is currently only available in Australia in pills (Qlaira & Valette) that also contain oestrogen (estradiol valerate and ethinyloestradiol, respectively). Dienogest has been found to be equally as effective as Lupron (leuprolide acetate) in the treatment of endometriosis, but with a much less severe side effect profile. One of the most shocking side effects of Lupron is bone density loss, leaving women susceptible to osteoporosis, and dienogest does not have that side effect.

The only thing stopping this medication being sold in Australia at the moment is corporations thinking that there is no market for it.

You can change that. You can email them and tell them that there is a market. They are having a meeting next week to discuss this decision so you have to act fast. Women with endometriosis need to be given more choice in treatments for their disease.

There is also a change.org petition here.

If you're looking for inspiration for what to say in your email, here are the emails my mum & I sent to Bayer:

Dear Dr Twomey 

Since my oldest daughter was diagnosed with endometriosis several years ago she has undergone two medical procedures and struggled to find a contraceptive pill she could tolerate. Visanne may well be the solution that she needs. 

Endometriosis must be one of the most hidden and silent diseases of our age. Since the diagnosis many of my friends and colleagues have revealed that they too suffer from endometriosis. I would assume that there are many more women who are sufferers who remain undiagnosed. My second daughter may well have the disease and not realise it because her symptoms are less severe.

Bayer could spearhead a campaign in Australia to raise awareness of the disease and market their drug to clinicians at the same time. This could be a win for both parties. 

Please reconsider and provide this choice for Australian women. 

Kind regards,

Jackie Street

~

Dear Dr Twomey,

I am 1 in 10 women. I have endometriosis and I want access to Visanne as a treatment choice.

I’ve tried everything else.

I’m currently on Qlaira, another one of your pills that contains dienogest (like Visanne), and I am having much success with that pill. Normally on hormonal medications I get horrible anxiety and depression, alongside many other undesirable symptoms (this includes experiences I have had on Yaz and the Mirena). However, on Qlaira, I have had none of those symptoms. My moods have even been more stable on this pill, and my skin is clearer than it’s ever been. Unfortunately, in the last week and a half, I have been back to bleeding and cramping on Qlaira, even though I am mid-cycle (on pills 16-20) and this should not be happening. I suspect that this may be because Qlaira has extra oestrogen that Visanne does not have, and adding more oestrogen to an oestrogen-fuelled disease is not a smart move. I would love to try Visanne and see what it is like for me to be only on dienogest.

Women in Australia have very few treatment options for endometriosis. I hope that Bayer will be a visionary and see to it that Visanne is made available to women in Australia. If you let us, we will prove to you that it is commercially viable. 500,000 women is a pretty big target market.

Please reconsider your decision and make Visanne commercially available in Australia. Otherwise I will be travelling to Germany to get it myself.

Sincerely,

Libby Metz

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.
~

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.

~

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.

~

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.

~

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 .

~

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.

____________________________________________

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.

New blog title and 11 weeks post op

It's been 11 weeks today since my op, and I have much to report. Recovery has been as expected, long but steadily improving, with an unexpected house move in the middle (at 4 weeks post op) making the whole thing just that little bit harder. I will admit that I ended up in a puddle of tears a few times due to exhaustion. Pro tip: Don't move house 4 weeks after having major abdominal surgery. Just don't.

I'm also 3 weeks into Qlaira pack number 3, and the last few days have seen me spotting and cramping which is quite disappointing. Up until now being on Qlaira has been a breeze and I really thought I had found my miracle pill. No weight gain, no breast tenderness, no migraines, my moods have even been more stable on the pill. Who knew? Here's to hoping that this is just a bump in the road.

You also may have noticed that I have changed the title of my blog. I no longer felt like the title fit with me (particularly as I feel I have outgrown the word "girl") so I've picked something that I felt fits better with what I share on this blog. I am learning to live with a chronic condition, and I want to learn to do that with joy and light. Two and a half years after my diagnosis, I am still learning to cope with it, over and over. every. single. day. I was also a little inspired in the makeover by my friend's blog makeover over at The Sweet Surrender.

I am leaving Canberra in three weeks, and heading to England in four weeks to start my Masters at Durham University. I'm hoping that I will be able to find time to blog before and during that adventure as I have a lot to say, I just need to get it down on (e-)paper. I'm also interested in comparing the how the medical system in the UK compares in its treatment of endometriosis to Australia. I have not heard good things. I am really excited about getting involved with Endometriosis UK as I have been watching them from the other side of the world for quite a while now and I am very impressed by the work they do. I have also found volunteering for the Canberra Endometriosis Network (co-founded by me and another woman with endometriosis) extremely rewarding and a light in sometimes dark days, so I'm excited that there may be a similar group in the UK for me to get involved in.