Category Archives: Pain

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Insights into Endometriosis

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Previously I posted a story about endometriosis being aired on SBS television. I am sure many people watched it and it is great to see that sufferers are finally being recognised. It is important that sufferers are finally being recognised and that there is more education about this disease.

But, is education and awareness enough?

Well, ‘yes’ and ‘no’. I always say this when I am asked this question. Yes, it is great to get education and awareness out there, but what are we doing to support those who are struggling daily?

Any education and awareness about this horrible disease is great. It is a huge win for sufferers when we do see programs go to air and aren’t scared to ask people their experiences of living with a disease state.

I do think those that were involved and those that are driving this awareness need to be applauded. Getting media to listen is one of the best ways to bring awareness to the disease states such as endometriosis.

While there was lots of information shared, I do believe more could have been talked about. I was a little disappointed to hear that the opening line was more about associating endometriosis and periods. We know endometriosis and its symptoms can be there daily, not just around the menses. But, it does open up discussion for more programs and media recognition for those with endometriosis, or any gynaecological condition really.

I’ll talk about the good things, the not so good things and everything in between. Let’ have a look what was talked about and some of the things that should have been talked about as well. I do realise time constraint mean that not everything can be talked about either.

The important things that were talked about
  • Millions of women world-wide suffer this disease
  • Millions of suffers do have a wide range of symptoms that vary with each individual
  • Period Pain IS NOT Normal
  • There is no cure for endometriosis
  • Millions of women world-wide have been led to believe their symptoms are normal, when they aren’t
  • Women are being missed and dismissed daily and told to basically suck it up
  • Many women take more than 10 years to be diagnosed
  • GP’s and other healthcare people are missing the disease and also failing to refer on
  • Many women are misdiagnosed for other disease states such as IBS, gastro etc
  • When presenting for medical help, many women are told they just have a gastro virus, or it may be an ectopic pregnancy
  • Endometriosis affects the daily life of sufferers and their partners and family as well
  • Partners can be affected by watching their loved one go through this disease state
  • Intimacy and a happy healthy sex life can be hard for sufferers due to pain and associated symptoms
  • Many endometriosis sufferers have to take pain killers daily, just to get through their day
  • Endometriosis requires a laparoscopy to be diagnosed
  • Scans and blood tests cannot diagnose endometriosis
  • Women need a highly specialised surgeon when needing to have the disease diagnosed and cut out
  • Despite the best medical treatments available, women are still in pain daily
  • Many women will require multiple surgeries to deal with endometriosis
  • Despite multiple surgeries, women are still in pain and have all the associated symptoms of endometriosis.
  • Women will need hormones, pain medications, pain management and psychiatric help dealing to be able to deal with endometriosis
  • Often pain and associated symptoms are not managed well at all
  • Women who suffer endometriosis are holding down jobs and many people are unaware they are suffering this disease
  • Many women with endometriosis cannot hold down fulltime employment either
  • Women are not being told the facts about endometriosis
  • Many healthcare practitioner do not know the facts about endometriosis
  • Women of all shapes, sizes and colour have endometriosis
  • Endometriosis is just as common as many other well-known disease states, yet little is known about it.
  • Complementary medicines such as acupuncture and Chinese medicine may help women with endometriosis (although this was brushed over very quickly)
  • Genetics/hereditary links are now known to be a big part in the disease expression
Important things that were not talked about
  • Endometriosis pain and associated symptoms do not just happen around the menses
  • A significant portion of women with endometriosis are asymptomatic (meaning no symptoms) and are only diagnosed through needing to assess for other issues such as fertility investigations
  • Not all women with endometriosis will experience fertility issues
  • Pregnancy does not cure endometriosis
  • Hysterectomy does not cure endometriosis
  • Endometriosis is Estrogen driven and not caused by estrogen dominance
  • Progesterone in suppressive to the disease
  • Pain levels are not related to the extent of the disease
  • Teenagers are not too young to have endometriosis
  • Certain combined contraceptive Pills that contain estrogen, could be making the disease worse, or in fact helping mask and then drive the disease
  • The facts around endometriosis need to be standardised and more freely available
  • Despite the best medical treatment not working for some women, we need to educate about other alternatives, including complementary therapies
  • Women with endometriosis do need a multimodality (team) approach to manage their disease state and daily symptoms
  • There needs to be better funding to help women access all services they need for endometriosis and the associated symptoms
  • Too much surgery can be just as bad as not having surgery
  • The first surgery should always be a sufferer’s best surgery
  • Women with endometriosis need to see and advanced trained laparoscopic surgeon who specialises in endometriosis and is an excision specialist.
  • Not all gynaecologists are advanced trained and not all gynaecologist will be able to effectively manage endometriosis
  • Most of the good advanced trained surgeons do not do public work. Some do limited work, most don’t.
  • Women and healthcare practitioners need to be educated about the facts are endometriosis
  • GP’s and other healthcare providers who are the first point of call for women, should be better educated about endometriosis and the associated symptoms
  • Women with endometriosis can have adenomyosis, PCOS and other gynaecological diseases at the same time
  • Women who suffer bad symptoms of endometriosis have contemplated suicide, or had suicidal thoughts
  • Women with endometriosis will require help with depression, anxiety and other mood disorders
  • Many women with endometriosis are addicted to pain medications and opiates and are not monitored , or managed well
  • Many women cannot function without some of the pain medications and the alternatives that are not as addictive need to be discussed
  • Diet and lifestyle changes can help with reducing the symptoms of endometriosis and may help with reducing some of the inflammation driving the disease
  • Healthy gut bacteria and restoring the microbiome can help with some of the symptoms associated with endometriosis and the inflammatory processes around endometriosis
  • Exercise may assist with the symptoms of endometriosis

There are probably many other things that need to be discussed, but, for now this is a great start. Any awareness is a great outcome and again those that were involved need to be applauded and commended. The sufferers, the specialists, the partners, the families, the media people and everyone involved deserve to be praised for this story. We now just need to take it to the next level of education and awareness for the sake of those and their families that suffer from this horrible disease.

There is no cure for endometriosis and even with surgery and the best medical interventions; women will still suffer the daily consequences of the disease. The best way to treat and clinically manage endometriosis is with a multimodality (team) approach that requires many different modalities and medicines. While there is no cure, with the right interventions and management women can become asymptomatic (meaning no symptoms).  We now just need governments to provide better funding to this with endometriosis and those who will ultimately be involved in their care.

Let’s hope that with awareness and education, this brings further funding and changes. We also need for more programs to be aired on the media to talk about what women with endometriosis can do to manage their disease better and where to access the help they so desperately need.

Take care

Regards

Andrew Orr

– No Stone Left Unturned

– The Endometriosis Experts

– Women’s and Men’s Health Advocate

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Are we really doing enough for women with Endometriosis?

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I often myself “Are we really doing enough for women with Endometriosis?”

That is a hard question to answer in one way, but easy to answer in others. But, the bottom line is that we really aren’t doing enough for women with this terrible disease.

Now, before I continue and start with what I am about to stay and before anyone takes this the wrong way and gets upset (which isn’t my intent), let’s look at the positives around endometriosis.

There has been more awareness of the disease than ever before and awareness brings about change. But unfortunately that change can also be slow. But, it is a step forward in the right direction. At least there is now some government recognition is some countries like Australia. It is about time though and we need all countries to step up on this front. Governments also need to do more, including ours here.

Yes, we have surgical interventions, pain killers and hormones to help those who suffer the disease. All of these things, either in isolation, or in combination can help women with the disease. Some women even become asymptomatic (meaning no symptoms), after certain interventions, or a combination of all interventions combined. That is what we would like for all women with endometriosis.

Surgical intervention can control active lesions and the inflammation and symptoms they cause. Pain meds can help control pain, but after a while women will need stronger pain meds to control the pain. The body will get used to the level of pain meds and there are also high side effect profiles. Hormones such as progestins and GnRH agonists can help with the control of symptoms, help with pain and inflammation and also help with the suppression of microscopic and active lesions. But, again it isn’t enough.

We know that despite the current medical model of treatment that women are still being missed and dismissed, women are still in pain, women are still having numerous symptoms, women are having high levels of anxiety, basic bodily functions are being denied or hard to achieve, and women are being offered multiple surgeries, because that is all that the medical model can provide for them. That is the pinnacle and once that is reached, then this leaves very little options left.

Women are then offered radicle treatments and removal of body parts and that is not the answer to their often horrible daily journey either. Hysterectomy does not cure endometriosis, not at all. But it is still being offered as such by the ignorant, ego driven and uneducated out there still. Sure, it can stop you having a menstrual cycle. Sure it can help with symptoms associated with the menses.

The trouble is that many women that get relief from hysterectomy actually have adenomyosis as well, or in isolation (usually missed diagnosed or missed completely), which a hysterectomy will help, and these symptoms are then controlled permanently by this procedure. But, the problem then is that these women think that their endometriosis is gone and cured. Not so.

If endometriosis has been diagnosed, it will still be there and it can still cause inflammation, and flares, and gastrointestinal symptoms, destabilise moods, causes endo belly, still spread throughout the body, still wreak havoc on bodily functions and most likely still need interventions of some sort.

Many women with the disease are at the point on suicide some days; let alone asking them to undergo reproductive suicide. I am sorry to put it so bluntly, but that is what it is. I have seen young women who have being told that the only way to cure their endometriosis is to undergo reproductive suicide and permanently halt their chance at having a family, all due to ignorance and being told BS, heartless, unethical statements like that.

Just go and chop out your uterus and you will feel better they say. No woman should ever be faced with that option because there are ways to manage this disease that many have not even been told about, or even begun to explore.

I want every woman to know that hysterectomy does not cure endometriosis and that is a fact. I also want women to know there are options for a normal life, outside the current medical model, or to be used in conjunction with the medical model.

The other issue is that like the fashion industry and their assault of women through marketing, we also have pharmaceutical companies trying to mislead women to believe they have the latest and greatest “fix all” pill for their endometriosis. Again, much of that is just over marketed hype and remarketing of medications and hormones that we already have and are just being sold under another patent and another name.

Many women work out very quickly that the benefits being marketed are not forthcoming and are again left with the feeling of despair. I would love to see a new medication to help women. I would love to see the cure all pill appear on the market, but unfortunately there is no such thing, it does not exist and probably will not exist in the near future either.

We also now have women basically addicted to pain medication, because without them, they cannot function in a day to day life. This then leads to judgment by many and we are now seeing women being viewed as ‘druggies’ so to speak. Many women are also being questioned at pharmacies, even when they have a doctor’s script.

We also have medical centre GP’s refusing women pain medication because they just have not listened to the women and her symptoms and that she in fact has endometriosis. All they hear is “Here is another addict trying to get pain meds”.

No, this woman is in pain and you are not listening to her, or even able to understand the level of distress and pain she is in daily. Sure, pain meds are addictive and they have side effects, but what other options do we have for these poor women? Until someone comes up with a better solution, on a medical level, then this is what women with endometriosis have to do in order to survive their day.

So, yes, while we have come far in awareness and recognition etc, which we desperately need, but we are still stuck in the dark ages as far as medical diagnosis, disease classification, interventions and true clinical and overall health management of the disease.

What women with endometriosis need is an individualised, case by case, individualised, multidisciplinary approach to fully treat and manage the disease but this is not happening.  Much of this is due to ego, certain marketing, suppression of research by pharmaceutical interests, lack of funding, lack of education, lack of awareness and people not willing to research or explore new ideas around this disease that don’t fit the model they want to explore, or believe.

There are ways to treat this disease effectively and it requires a multi-modality approach to do so. It requires the team approach that I always talk about. There is good research and evidence out there to suggest that there are some great treatments and management options outside the medical model, which can also be used alongside medical options to enhance treatments and overall health for those with endometriosis.

We just need more education, more research, more funding, more open mindedness, less suppression of research and education by those with monetary interests in certain areas of medicine, more subsidisation for affordable treatment options and certain people letting go of old belief systems and ego so that new thought processes and education can occur.

While awareness is great and it brings recognition to those with the disease, we also need to then give those same people ways to manage and treat the disease as well and stop viewing these women and druggies, or hypochondriacs, just because the medical system hasn’t caught up with what these women actually go through and what they need to live on a day to day basis.

I’ll talk about some other options for the treatment and management of endometriosis in some upcoming posts. In the meantime please know there are better ways to manage this disease and while I would love for there to be a “one pill” or “one treatment fix all’ approach, I am sorry but that does not exist and we will probably not see that exist either. We can hope, but please don’t hold your breath waiting. Sorry for the rant, but it need to be said and more needs to be done.

Regards

Andrew Orr

-Women’s and Men’s Health Advocate

-No Stone Left Unturned

-The Endometriosis Experts

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Expectation Versus Reality When It Comes To Hospital Emergency Departments

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Before I start on this latest post, I do just want to say how amazing the people are who work in Accident and Emergency departments around the world. As someone who has a disease state that can be fatal, I know all to well how the amazing efforts at accident and emergency departments can save lives. I should know, because they have saved my life a few times I can tell you.

The reason for this post is that everyday I get messages from people in chronic disease state, such as endometriosis, and many of these messages often complain that they went to their local hospital emergency centre and they did nothing for them. Many of the messages are saying “I waited for hours in pain”, or “the emergency staff did nothing and then sent them home”, or messages such as “The didn’t fix me”

One of the things I always tell my patients is that if they are in pain, and it is after hours, or they cannot get a handle on their pain, then they should go to their nearest A&E (Accident & Emergency) and seek help. But I am also very clear with my patient’s expectation around what emergency centres are there for, or will do for them.

Accident and Emergency Centres at hospitals are there for exactly that; Accidents and Emergencies. They are there to help with people who have been in accidents, the critically ill, the dying, and those that require emergency assistance. Emergency departments are trained to assess who needs help now and who doesn’t.

There is a scale of who requires immediate help and who doesn’t. People who have been in near fatal accidents, people with open wounds, close to death, people having heart attacks, asthma attacks and anyone who could possible die from their suffering, will always be attended to first and if need be with be admitted and monitored accordingly. For the rest of the people it is simply this.

  • How bad is your pain?
  • How long have you had it for?
  • and could it possibly kill you if we leave it too long for you to receive care?

If the answer is that it isn’t going to kill you, but you are definitely in a lot of pain, you will receive treatment. When and how long that takes, compared to critical patients, all depends on how busy the emergency department is that night, or day.

What I do need to reiterate is that emergency departments jobs are to basically assess if your condition could kill you, then administer appropriate treatment, get you out of pain and then either send you home, or admit you if it is absolutely necessary. That is it really.

They are not there to fix your chronic condition. They are there to ease your pain, administer appropriate treatment, save your life if necessary, and then work out if they send you home, or send you to intensive care for critical monitoring, or admit you to the general wards.

If you are assessed properly and your pain etc, has been controlled and then sent home, what should happen then is that you should be given medications to control your condition when you get home, given an action plan and also a referral to your local GP, or healthcare professional to help you in managing your disease state, or pain state, properly. This is to ensure you get proper care. Sometimes you may even be referred back to the hospital you have just been to but to an appropriate department for your condition, or disease state.

But does this always happen like this?

Well, not always and it just depends how busy the emergency centre was and how far down their emergency scale you were. If you weren’t dying, it may seem like they are saying to you “we fixed you up, we helped your pain and then sent you on your way with no help”.

But in reality they have got you out of pain and then have administered appropriate care and treatment, but it may not just be in way your expectation was. Please just remember that A&E’s are there to help you get out of pain and then basically send you home, or admit you if needed. That is it really.

If your pain levels have escalated, or become acute, more often than not it is because your condition isn’t being managed properly, or as well as it could be.

  • Maybe the healthcare practitioner managing you just isn’t as educated on your disease state as you thought.
  • Maybe your medications are wrong.
  • Maybe you haven’t been taking your medications properly.
  • Maybe you have been self-prescribing too long and need to see someone for better care.

There could be many factors to why your disease state has flared

  • Could you flare up be due to stress, or emotional factors?
  • Are you sleeping properly?
  • Are you eating a proper balanced nutritional diet?
  • Have you been drinking too much alcohol?
  • Are you drinking enough water?
  • Are you exercising enough and moving the body enough?
  • Are you taking your medications properly?
  • Could you need surgical intervention?

There are so many reasons why disease states can flare, or pain cycles can start. Sometimes there is no answer to your pain, or disease state flaring.

As I have stated before, places such as the A&E (Accident and Emergency) are there to help people in chronic, or acute pain states and assess you properly to make sure everything is ruled out and then control your pain and have you managed accordingly.

Most of the time, if things are not critical they will send you home, but usually after making sure you are managed properly first. If this doesn’t happen, then you need to ask the questions as to why, and then ask questions of the powers that would be, if necessary. If you are truly in pain, then you should not go home and you need to voice your concerns as to why you need to be looked at further. Sometimes it really is “He/She who cries out loudest, gets heard”

If you do have a diagnosed condition such as endometriosis, it may be best not to let some A&E’s know you have this condition, due to them probably not going to fully understand your condition, and put you in the period pain basket, and probably not take you seriously.

I am not saying this happens all the time, but it does happen and I hear this often. But, just remember that A&E departments are specialised in some disease states such as endometriosis either, so you need to take that into consideration.

But they need to take into consideration that you are in pain and that it isnt just simple period pain, or you are being dramatic. If you weren’t in real pain, you wouldn’t be there.

So, just a precautionary word… don’t tell them you have endometriosis, if that is what your are there for. Let them do a proper assessment and control your pain first and if they work that out, then they have done their job anyway. If they don’t work that out, they will at least manage your pain and then try and work on why you are in pain. If necessary, they will admit you until they can work it out,  so win win situation.

But, even after all this, if your pain, or disease state has reached its peak point, it means that you aren’t being managed properly, you need proper management, or you may in fact need surgical intervention, along with appropriate treatments and clinical management moving forward.

Once this is addressed then the following may assist you also:

  • Eat a healthy low inflammatory based diet
  • Make sure you address the emotional aspect of your health
  • Address stress levels
  • Make lifestyle changes
  • Address weight and body fat (lose or gain weight/body fat)
  • Drink adequate water and electrolytes to stay properly hydrated
  • Exercise and move your body to promote blood flow and circulation
  • Acupuncture may assist with pain
  • Herbal medicines and nutritional supplements may assist pain
  • Chiropractic care, or osteopathy care may assist
  • Do a mindfulness course, or learn some meditation
  • Get at least an hour of “You Time” daily
  • Take your medications as prescribed
  • Book in with your healthcare practitioner and get a proper pain management, or disease state management protocol going
  • Improved your gut health and microbiome
  • Be positive and look at positive words and affirmations
  • Stay away from negativity and negative people
  • See a pain management specialist if need be
  • See a counsellor, or psychologist
  • If something isn’t working, then change it. This may also mean changing the person you are seeing. It may also mean changing self, or self-beliefs.

Lastly, never self prescribe, or try to manage your own disease state. Nobody can manage their own disease state properly, no matter how much they know, or how hard they try. Always seek proper help and clinical management from a properly trained healthcare professional who specialises in your disease state

I hope this has helped everyone understand a little more about what emergency departments do, or are supposed to do, when it comes to pain and critical care.

We really do need to be aware of expectation, versus reality for this type of care and what emergency centres actually do. I also want people to know what they can do also need to be proactive in their disease states and helping manage their disease state and symptoms properly. With proper care and proper management, you truly can reduce symptoms, reduce pain, reduce flare ups and also live a fairly normal life as well.

Lastly, when pain does get too bad, or your are unable to control your disease sate properly, it means you need to get proper help and this also means seeing an appropriately trained healthcare professional to assist you in every aspect of your disease. Please do not try to do it yourself, or google it, or ask friends for advice.

Always see a healthcare professional who is trained to deal with your disease properly and administer appropriate care, treatment and management moving forward. If your current healthcare professional isn’t assisting your properly, I am the first person to tell people the value of a second, or tenth opinion.

If you do need help with a women’s health condition and are not being managed properly, then please give my friendly staff a call and find out how I am may be able to assist you.

Take care

Regards

Andrew Orr

– No Stone Left Unturned

– Women’s and Men’s Health Advocate

-The Endometriosis Experts

-The Women’s Health Experts

The facts about endometriosis

Endometriosis Facts

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Many things you have heard about period pain and endometriosis are wrong. These are the facts about Endometriosis

Endometriosis Awareness Period Pain IS NOT Normal                       Endometriosis Awareness Teenagers are not too young to have endometriosis 1

Endometriosis Awareness Hysterectomy does not cure endometriosis                       Endometriosis Awareness Pain Levels Are Not Related To The Extent of The Disease Present

Endometriosis Awareness Endometriosis can only be definitively diagnosed by a laparoscopy                       Endometriosis Awareness is not caused by estrogen dominance

Endometriosis Does Not Always Cause Infertility                       Endometriosis Awareness pregnancy does not cure endometriosis

There is no cure for Endometriosis                       Endo takes up to 10 years to be diagnosed

Regards

Andrew Orr

-No Stone Left Unturned

-The Endometriosis Experts

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So you have the diagnosis… Now What?

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Many gynaecological issues such as endometriosis and PCOS often take years to be definitively diagnosed and women have to suffer the consequences of their disease state through being missed and dismissed along the way.

Then after many years of suffering, they finally get the diagnosis they have been looking for, but then many are not told what to do next, to manage their disease state moving forward.

From a state of relief then comes a state of despair, as the diagnosis is made and realisation that disease state you are living with isn’t really being helped and managed as well as it could be. So now what?

So now what?

As someone who has had to live with a chronic disease state daily and spent many years trying to find the right help and be diagnosed properly, I know all too well what many face daily. Many days it just feels like you are knocking your head against a brick wall and nobody wants to help, or listen to what you are telling them.

This is why it is important to take things into your own hands and keep searching until you find the right help. That is why I now do what I do and my motto is “No Stone Left Unturned”.

Never try to manage your disease by yourself

When I say take things into your own hands, I don’t mean try and manage things yourself. Trying to manage oneself just does not work and it can created a never ending vicious cycle of thinking nothing works, or nothing will help. The truth is, everyone with a chronic disease state, needs proper professional help to be managed properly.

The sad but real truth is that we do know that despite the best medical interventions and treatments that many women will continue to suffer the consequences of their disease state.

We know that disease states like endometriosis have no cure and despite the best surgical intervention, hormonal therapies, pain medications etc, that the disease state can continue to grow and cause debilitating symptoms, both physically and emotionally.

Just remember that while surgical intervention, such as a laparoscopy is a definitive diagnostic for diseases such as endometriosis, it can also be used to excise the active disease and by a part of pain management too.

But….while surgical interventions, hormone therapies and pain medications can offer women some reprieve in their disease state, are they enough?

Sadly the answer is “no!”

The vicious repeat cycle

Unfortunately, this is where many get caught in the vicious repeat cycle of further surgical intervention, the need for new hormonal therapies and a dependency on pain medications.

There are also the side effects of some of the medications and treatments and also the effects on future fertility. Treatments also tend to be about treating the masses, rather than the individual. We know that while women may suffer the same disease state and similar symptoms, all will have differing symptoms as individuals as well. This is why blanket approach does not work and why an individualised, multimodality/team approach is needed.

Most medical treatments treat the symptoms, not the disease

The trouble with the current treatments for many gynaecological issues such as endometriosis and PCOS, is that they are suppressive rather than being curative. These treatments also tend to mask the disease and also only provide temporary relief of symptoms during the period of treatment.

On discontinuation of treatment the reoccurrence of symptoms is generally to be expected. For example, after medical treatment and surgical intervention, the reoccurrence rate of endometriosis is said to be around 25% after 2 years and around 50% or more at 5 years.

So what is the answer?

For any disease state to be treated and managed properly it needs to follow these treatment principles.

  • Treatments needs to be individualised and not about treating the masses
  • Treatments and management needs to be multimodality and may require a team like approach
  • Treatments need to be curative, rather than being suppressive
  • Treatments need to treat pain and associated symptoms
  • Treatments need to have an acceptable side effect profile
  • Long-term treatments need to be safe and affordable
  • Treatments need to treat and assist fertility and not interfere with ovulation and implantation
  • Treatments need to inhibit the current disease state and inhibit the current formation of lesions and cysts and future growths and cystic formations as well.
  • Treatments are efficient in treating all parts of the disease and all types of the disease, either superficial, or deep infiltrating, or related to the current disease state.
Do treatments like this exist?

Well, the answer is ‘yes!’… and ‘no!’

There is no curative medical treatment for endometriosis, but there are treatments that can assist in helping women with their disease state and to become symptom free, or at least live a fairly normal life.

There are treatments that can assist PCOS and actually assist in the reversal of some of the symptoms that are associated with the disease.

The one thing I explain to my patients is that they need to be real about their disease state and they also need to look at their expectations versus reality.

The longer one has had a disease state for, or health issue for, the longer it is going to take to manage.

There is no Magic Pill

Then I always talk about the magic pill. I think many people are waiting for “the magic pill”, which does not exist, and then get caught up in the vicious cycle of “Nothing works” and then spiral over and over again.

I wish there was a magic pill to take to solve everyone’s disease state, but there isn’t and this is something that all concerned need to come to terms with.  I know I have been there, so I understand where people minds go to.

When you are in pain, or living with disease state, it is all too easy to blame everything and become very cynical and negative, which in turn does not help the disease state either.

Getting caught in the one way approach

This is why when it comes to dealing with any disease state, we need to help the individual emotionally as well, so that they can learn to be focussed, be clear and also learn to cope with their symptoms better. Stress and emotional issues do exacerbate pain pathways and this is something that many overlook. This is why the body mind aspect is something that I look at with all my patients.

The problem is that many just get caught up in the one dimensional medical treatments of surgery and taking a pill approach, when in fact they need so much more.

Again, this is not discrediting that surgery and medications are a much needed part of treatment for many, especially those with endometriosis, or severe PCOS etc. Many will not be able to function daily without surgical intervention, or pain killers, etc.

But, as mentioned before, while they are necessary, they are not enough and women need to be looking outside the box and looking for a more individualised, multi-modality, team like approaches, if they truly want to get the help they are needing and to be clinically managed properly.

So where do you find these treatments and people who can help?

The million dollar question?

Well, that is the million dollar question that everyone is looking for and probably the hardest thing to answer. In every profession and every industry there is good and bad and not everyone specialises in the disease state you are wanting help with. This is the biggest hurdle many will face.

The sad but honest truth is that many people are seeing someone that doesn’t have the skills to deal with their disease state and is actually a big part of them not being able to move forward with proper treatment.

This isn’t just related to the medical profession either. It is the same in allied health, complementary medicine and other areas of health.

Finding the right team

This is why it is so important to find the right person, or the right team to help you. People that have the right skills, the years of experience, the specialisation in the area you are needing help with and also willing to work in with others to help you be managed and treated properly.

If the healthcare practitioner you are seeing isn’t helping you, then you need to change. Don’t just sit there complaining about it. Don’t go back to them and just go and find someone who will help you. It might just change your life. Remember that if you do not change anything, nothing changes.

Being part of your healthcare management

Just to be clear on this though, make sure you have actually taken on board the changes and treatment that has been prescribed to you. If you don’t do the prescribed treatments and follow the prescribed management plan, then you cannot blame the person you are seeing for not getting better. As I always say to my patients, a big part of them getting better is them actually following the advice, taking the prescribed medicines etc and making the necessary changes.

Having to live with a chronic disease state daily, I know the issues people face, on both a physical and emotional level. I know how hard it is to find the right people and get the right help and having to sift through the BS people tell you, when in fact many of these really have no idea. I really get how hard it is and I also hear how people are being missed and dismissed daily and it annoys the hell out of me.

A multimodality approach is needed

This is why as a healthcare practitioner, I use an individualised, multi-modality approach to healthcare. I help people with as much of my own skills and multimodality treatments and then I am also their guide, their coach and their voice, if they need to be referred to others.

I always only work within my close network of healthcare professionals and only refer to those whom I can trust and whom I know have the skills to assist my treatments and to help my patients. I always joke with my patients that I am here to keep the others honest and also be their guide every step of the way.

For those that are living in chronic disease state, I do feel for you, as I know how hard it is when you have to deal with a chronic disease daily. The one thing I did learn though, is that you have to fight and you need to take your health into your own hands. By that I mean that you need to find the right people to help you.  Do not try to manage your disease on your own. Find someone who will be your voice for you. I know this is what I do for my patients. This is what you need to find also.

For something to change, you need to change something

If something isn’t working for you, or your symptoms aren’t getting better, then this means you need to change something. Don’t just keep doing what you have been doing and expect it to change.

Don’t get caught up in the blame game, or get caught up in the label, as this doesn’t help you either. It just creates more stress and negativity. The best way to help your condition is to help yourself and get your mind and body strong again.

One step and one day at a time

You also need to realise that nothing is going to fix overnight and there is no such thing as a magic pill. You need to take one day at a time and do things one step at a time, no matter how hard things seem. You need to put one foot in front of the other and just keep doing that. Yes, you will have bad days, but as long as you are progressive and being monitored and managed properly and you are progressing forward, no matter how slow you may think you are going, then this is a good thing.

It is like running a marathon

I often say that when one is faced with the challenges of having to deal with a chronic disease, or chronic health issue, that it is like running a marathon. You can’t not put in the training and all of a sudden wake up one day, without any training, and expect to run a marathon and complete it.

To run a marathon you need to put in the work. You need to train. You need a coach to motivate you and help you with your training. You need to put good food in. You need to put supplements and additional nutrients in. You need to get your mind right and be motivated.

To do that you need a mind coach, or a psychologist, or counsellor, or mindfulness coach. What will get you over the line in the end is “You” and the work “You” have done and the advice “You” have followed and the lifestyle and dietary changes and the body conditioning. It is about everything “You” have done in combination coming together to help you overcome the marathon of your disease state.

Nobody is going to do this for you and this is probably one of the hardest things I had to learn on my own health journey. You can either stay where you are, and live in the state you are living in, or you can get up and take control of your own health.

It isn’t going to be easy, but it can be done. It just means taking that step to get the right help and if necessary, ask for help to find the right people to help you as well.

Find someone who will support you and care for you

I help people do this everyday. I see people do this everyday. It is also about finding the right people to help you and support you along the way. This is what I now do for my own patients and if you do need help, and cannot find the right people to help you.  I can always assist you in the marathon of your own disease as well. I do online consults, or consults in person as well.

My caring and friendly staff will explain all that to you when you make an enquiry.

Take care

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Advocate

help 3049553 1920

But what do I do and who is going to help me?

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Many years ago I was asking this same question, “But what do I do?” and “Who is going to help me?”

Like so many others, I know all too well about having a chronic health condition and living with that daily.

Yes, I too have a chronic disease state and I also know what it is like to live in that chronic disease state. That is why I understand what many of you go through daily. I may not know what it is like to live with your disease state, but I know what it feels like to live in chronic disease state and have to live with the consequences of that disease.

I also know what it is like sitting there thinking that nobody seems to be able to help me and one seems to be getting nowhere with this. Then the vicious cycle of then doing nothing, because one believes that nothing works and nobody can help, and then nothing gets done and the symptoms continue and then you get even more and more frustrated.

Yes, I have been there too. This is why I do what I do now and why I want to help others get out of their rut, and help them overcome their disease and learn to manage their disease better to then have a better life.

But unlike many others, I do know the power of positivity and know that once I put my mind to something and commit to it, then I’ll do as best I can and it also helps get the process going.  I also know that in order for something to change, that I also had to be proactive and make things change. It is that old saying “If you don’t change anything, then nothing changes”

So one day I sat down and said “Right, let’s just forget about whom I have been seeing, forget the blame game etc and let’s just really look at this objectively. What do (I) need to do to create a change?” and “Can I do all these changes on my own?”

Sometimes asking these sorts of questions about yourself can be quite confronting and when you do, you also need to be completely honest with yourself and have those around you be honest with you also.

Then you have to take that advice, listen to what people are saying and then go about finding someone to help you and then actually make the necessary changes that are needed. But, finding someone to help can be really hard too.

Like every other profession, or industry, or workplace etc, there are good and bad people in what they do. Unfortunately finding the good people to help can often be hard, but it doesn’t mean they are not out there.

There are good people out there, and people who are excellent at what they do, but it also means not being sceptical and also having an open mind, otherwise you will just give up and not do anything again. Then you end up being in the vicious ‘poor me’ cycle again and that isn’t going to help anyone. This is where a good counsellor or psychologist can help and be impartial and be objective in what you need to do to move forward.

Then I also learnt that I had to stop the blame game and had to learn to stop making excuses. I know all too well that it was much as it is easy to blame others and blame things for not working, but at the end of the day we are all in charge of our own health, our own lives and what happens to our body too.

Well, to a point anyway. I do know that sometimes you just can’t help genetics and hereditary disease, but at the same time, these disease states can be managed “If” you get proper care.

I remember a good friend sitting me down and talking to me about what I should do and also some of the questions this friend asked me. Some of the things he said to me and insights he shared with me were things like these.

  1. “Are the people you are seeing good at what they do?”
  2. “Have you noticed any changes after the treatments they have prescribed?”
  3. “How long have you been seeing these people for?”
  4. “What are your expectations around the treatments they have prescribed for you?”
  5. “Have you actually been doing the treatments they have prescribed”
  6. “Have you been taking the prescribed treatments and advice seriously and doing it properly?”

This friend of mine said to sit there for a minute or so and really reflect on what he was asking and be completely honest with myself.

He said to me “You know how some people come to see you and then they go away and then don’t take on any of the recommended changes and don’t do the treatments and then expect for things to miraculously changes and you to somehow just fix them without them having to do anything….. are you one of those people too?”

Not something I wanted to hear, but I did appreciate the honesty. I could relate to what he was saying because if one doesn’t do the necessary recommendation, or do the treatment, then one isn’t going to get better and then you can’t blame the person you are seeing if it all goes pear shaped.

Then he said to me “You can’t keep doing the same thing over and over again. If it isn’t working, you can’t then expect a different outcome each time, or just hope that all of a sudden it works.”

He then went on to say “I’ll put it to you this way. If you keep running into a brick wall and then it hurts and you fall over and then get back up again and try to do it again thinking it might not hurt this time, and expect a different outcome, when you know it is going to hurt, then you need to start asking yourself some serious questions”

Then he said to me “Let’s really look at expectation versus reality. You have had this disease state for a really long time, but in your own mind you want it fixed straight away, or after a few days, or after a few weeks.  The thing is… it isn’t going to happen.”

He then continued “You know all too well that if you have had a disease state for years it isn’t going to fix overnight and that it is going to take months, or may even take a year or more to fully get on top of it, depending on the severity and what is going on”

This friend also said to me “Sometimes pain levels and symptom and all a matter of expectation versus reality too. Sometimes you think you aren’t getting better, when in fact you actually are. If someone where monitoring you properly you may have started out at 10/10 pain and may now be 5/10, which is an improvement. But, because you are still in pain, you won’t see it as such until someone points out the difference. It is all relative to what you believe versus what is actually happening ”

Lastly he then put it rather bluntly to me “Who the bloody hell have you been seeing and are they any good?” then he added “Because we all know there are people out there you wouldn’t send your dog to and the good ones are few and far between. Btw, who sent you there in the first place?”

He then added one more thing in “You can’t try and do this yourself, or try and treat yourself because that isn’t going to work and this is not your area of expertise. Go and see someone for advice and help and don’t be like many others and try and (Dr Google), or try and self-manage your own disease. That will end in tears”

So, after my brutally honest, but helpful, conversation with my friend, I did have a big conversation with myself and realised some things. These same things I now share with my own patients.

  1. Not everyone you see is good at what they do and if someone isn’t helping you, then you need to find someone that will. This is why now I always say to people that never underestimate the power of a second, or tenth opinion. Never give up until you find someone who will listen and then really help you.
  2. When you get a referral to someone, do your research and make sure the person you are seeing is well qualified to be helping you and your condition. You need to ask them the big questions and don’t be scared in asking the big questions. If they don’t seem qualified to help you, then find someone else. Also make sure your surgeon is advanced trained, if one is needed and also specialises in your disease state.
  3. Look at who is referring you. Look at what their knowledge of the area you need help with. It is your friend referring that may have no idea? Is it mum, or dad referring? Make sure the person referring you has a good knowledge base of the person they are referring to and also has a good understanding of your disease. Sometimes the people referring you have no idea and then refer you to someone mediocre. It is all about perception and sometimes perception of who is good and who isn’t might be a little distorted.
  4. Look at how long you have had a disease for and look at what your expectations are around how long it may take to see some changes? Then ask the person you are seeing for an honest opinion about how long they would expect to see some changes happening. No long term health issues fixes overnight and the longer you have a disease for, the longer it is going to take to help it and see some real changes.
  5. If you are asking to make changes and do a certain treatment and management plan, then make sure you do it 100%. For changes to happen you have to follow the advice given and stick to it.Forget what Dr Google says. If a professional with years of training tells you to follow their advice, then make sure you give it a chance and actually do it.

    You also need regular follow-up consultations and regular management to oversee those changes and also talk about any concerns and also talk about changes as they happen. You need to document changes and actually be managed properly.

    If a treatment isn’t helping, or you perceive it isn’t helping, then have a chat with your healthcare practitioner about this.

    If something really isn’t working, then you need to change something, or change the person you are seeing until you find someone who can help you.

  6. Pain levels and symptoms and healing times can sometimes be distorted when you are in pain. When you are in pain, or have bad symptoms sometimes you don’t always realise you have had changes, because you are still in pain and have symptoms.As my friend mentioned to me, sometimes you may have started at 10/10 pain, or symptoms, but now you may actually be 5/10 pain and symptoms. That is actually a big change and means you are getting better, but because you are still in pain, or have symptoms, you may not be able to see this until it is pointed out.

    As long as you are progressing and moving forward then this is good and something to give you hope that your treatment is working.

  7. You are always going to have bad days. Even with the best treatments and best management, everyone will have bad days and these are the days you need to be careful about and not get negative about.Shit happens. Bad days happen for everyone and we all have to be aware that while the bad days will happen, as long as you are moving forward, even if it is step by step, then this is a good thing. Like they say “Two steps forward, one step back”, which still means you are one step ahead of where you were.
  8. Don’t try and treat yourself. It is good to be educated and good to be informed etc, but relying on Dr Google, or friends advice etc, can be a bad thing too.We don’t try and cut our own hair, or fix our own car, or make our own medicines etc, so we shouldn’t try and fix ourselves either. We need someone who can be objective and someone who is actually qualified in the area that we need help with to get the best results.
  9. Many disease states need a ‘team’ or multimodality approach to give you the best results possible. We know that despite the best medical treatments, that many people are still in pain etc and it isn’t until they incorporate other therapies, that they then start getting positive results. Be open to trying new therapies and new things that may help you.
  10. If you do ever need to go to the emergency department for your disease, just remember that the emergency department isn’t there to fix your chronic disease. They are there to stabilise your pain and stabilise your symptoms and once that is done, they are more than likely to send you home, if you aren’t in any medical danger. If so they will admit you. But part of critical care should be making sure you are referred to someone who can manage you clinically moving forward. The reality is that sometimes this doesn’t always happen.
  11. Never ever let the disease own you. You are not the disease and it does not own you and we need to be careful of not buying into the label and then letting the disease and the label consume us. Take back your power and be positive and use that to help you overcome the disease and being owned by the label.
  12. Be kind to yourself. That means eating good foods, exercise, lifestyle changes and getting out into the sunshine daily. Many foods that we eat are inflammatory and only add to the inflammatory disease process you are dealing with already. Create good gut health to build up your reserves of health gut bacteria to help your body and help your immune system. Get the body moving and get the circulation and blood flow moving to nourish the body too.
  13. Last but not least, never underestimate the power of the mind, or how emotions can be a big part of a disease state and some of those disease states symptoms.We check in our tax to the accountant, we check in our health with the GP, we check in our hair to the hair dresser, but when do we actually check in our emotions and our thought processes.

    Never underestimate the power of talk therapy and seeing a counsellor etc. The body mind connection is a big part of many diseases. Never underestimate the power of stillness and mindfulness and bringing the body to rest and being mindful of your life and what may be needed to help your health. There are people who can help you with mindfulness and meditation and creating that positivity in your life

Having lived with a chronic disease state for most of my life, I do know how challenging it can be for people and to find that strength and courage to actually get up and do something about your health.

It can also be disheartening when the people you have seen have missed and dismissed your disease too. It all just compounds and adds to the daily burden of what you are going through.

But, never let those things stop you from finding someone who can help, or finding the strength to get up and make the necessary changes you need to make a better life for you.

I think that having a disease is sometimes like learning to ride a horse. You may fall off many times, but you need to just get straight back on again until you master the art of staying on and being a good rider and being in control. But even the best rider is going to fall of every now and again, and that is ok too.

Just remember that there is always help out there and there are people who will listen and who do specialise in the area you need help with.

Lastly, for you to get better, it also needs for you to be a big part of the driving force behind that and actually do the work needed. Don’t just sit there in ‘poor me’ mode. Get up and get yourself out there and do what you need to do for you.

If something isn’t working then change it. Just remember that in order for a change to take place, something has to change. Something that means you changing your belief and your thinking too. It might also mean changing the healthcare provider you are seeing too.

As someone who has been there, I hope this helps you all get the help you so desperately deserve. Just remember that if you don’t know what to do, or where to get help, please know I am here to help you as well. You can always book in a consult (in person, or via online) and I can help assist you with your health, and also point you in the right direction too.

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Advocate

Weeding out endo

Weeding Out Endometriosis

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Explaining endometriosis to people is not always easy and sometimes you have to use analogies that seem strange at first, but once you get the gist of where I am going with it, it will all make sense. But before I start, I always like to say that please take the personal out of things and just know that what ever analogy I use, it is with good intention and always about helping others.

I just know that when I used the “Endo is like Rust” analogy, which is what it is like, a few people took it to heart as though they had a rusty uterus and this is not what I was saying. Not at all.

Please know that I have loved ones with this horrible disease, so I am here to help, and my main aim now is to help as many people as possible with what I know, and how to treat people properly. I am also about getting the message out there so that women to not have to remain silent about this disease any longer. My motto is, and always will be, “Period Pain is Not Normal”

So, sit back, take out the personal and know that I am writing from a place of caring and sharing and a place of getting the message out there to help you all. Sometimes you just have to tell it how it is, in order for people to sit up and listen, so here we go J

Many of you have read my article of “Rust Never Sleeps and Neither Does Endometriosis” and the reason I wrote this is because endometriosis and how it attacks the body, is very much like how rust attacks metal. If you haven’t read the article, please do so that you can see what I am trying to convey.

I am always doing lots of speaking events and seminars on Women’s Health and also presenting for workshops on Endometriosis. It is so great to get the message out to the world, so that both the public and healthcare professionals can be educated on this subject better.

We need to stop having this disease “Missed” and women being “Dismissed” as I am always saying now. This disease should not be taking 8 years from onset to definitive diagnosis. It used to be 12 years. This is disgusting, to say the least, and there is no excuse for this to be happening, except poor education, sloppy diagnosis, lack of training, negligence and dismissive egos that need an attitude adjustment.

But, in saying that, we also need to teach women to be empowered and not just put up with being told “This is normal”, or “Just go on the pill and it will fix it”. That is bullshit (sorry). But it is true. There needs to be a better way and we need to stand up and say “Enough”. But we also need to not let the disease define you and get caught up in the blame game either.

We also need to get people to stop “Dr Googling” too, as this is also spreading the misinformation. It is great to be educated, but good old “Dr Google” is full of false information and research shows that up to 75% of the health information that the public can access on google, is either wrong, or only partially true.

Now that I have had my little rant about the injustices of many, I would like to share what I have been sharing to others about what endometriosis is really like and how hopefully we can prevent it from returning, hopefully for good.

I do know this is possible with the right care, right follow up treatments and right team of people helping. I see it daily and know what I share to be true. But, again it requires the person to follow the advice given and then to get the information out there. It also requires people to not be defined by their disease and break free from these chains to open their minds to the possibilities of new thought, new treatments and new ways of doing things. We need to not be caught up in what may cause the disease, but what we can do to help those with it now.

Of course prevention is crucial and so important, but once the disease is expressed in the body, what caused it is irrelevant. We can argue about the hypothesis of what may be the initial causal factor until the end of time, but that isn’t helping those with the disease now. The most important factor is how we can help those with it live a normal life and hopefully one day in the future to be free of the disease completely. At least  for now, we can look at hopefully giving people a better quality of life than the one they are living each day. From my experience, I do know that this is possible with the right team of people working the help the individual.

To be honest, the most likely cause of this disease is now known to be genetic links, or chromosomal, most likely through the parental mode of inheritance. Gene therapy is probably going to provide the biggest breakthrough in this disease in the years to come. But like any breakthrough, we just have to wait and see what happens there. You heard it here first. I do believe genetics does play a big part, but like any disease, it is not the only contributing factor.

But, all this aside, we need to focus on the here and now to help those who need help now. In order to make change, you need to make those changes required. If you change nothing, nothing will change. I also get how hard it is for those whom have suffered so long to pick themselves up, to make those changes. Believe me, as someone who has been through a major life threatening illness and pain and crawled their way back to good health and do what I do now, I get it. I’ve been to that point of wanting it all to just stop and I get what many women put up with on a daily basis. Pain is pain, no matter where it has stemmed from.

Getting back to the subject at hand, I have now been explaining that Endometriosis is like a weed. Why would I explain it like this?

Like a weed, endometriosis grows and spreads. You can physically remove the weed (surgically), but unless you control the regrowth, seeds have been dropped (endometriosis regrowth) and then the weeds pop up again and start to grow once more. Sound like endometriosis too you?

Like any weed, it needs certain things for its regrowth. We have just talked about the dropping of the seeds ( regrowth) but it needs a food and fuel source to make it grow (estrogens, insulin, inflammatory response from external factors, stress etc). Then once the seeds are fed, the regrowth continues and then the garden is infested with the weed plague once more. Then you need to try and physically removed the weeds again once more and so the cycle begins again. Are you seeing what I am getting at yet?

Just like these weeds, endometriosis is often removed and many people then either believe they are fixed, or they do not do anything post surgery to prevent that regrowth. Before they know it, they again have to go back for more surgery. Often when people do try to control the regrowth (Progestins, Mirena etc), they are only employing one method, for which is either not effective enough, or the weed (Endo) is now resistant too.

This is why we need to employ a multimodality approach post surgery to hopefully complete eradicate the weed regrowth and halt the life cycle of these seeds being spread and to start growing again, thus starting the horrible cycle all over again

Now that we can see how endometriosis is really like a weed that can spread throughout our garden, we need to look at what we can do to hopefully stop it coming back, or spreading into other parts of the body.

Like I said, treatment must be individualised, using a multimodality approach, taking the clinical problem in its entirety into account, including the impact of the disease and the effect of its treatment on quality of life. Pain symptoms may persist despite seemingly adequate medical and/or surgical treatment of the disease.

The real focus needs to be on prevention and treatment strategies post surgery. Even better still, lets prevent it before it starts

There is an ancient Chinese saying – “To try and treat a disease once it is fully expressed into the body is like trying to forge arms once a war has already started, or like trying to dig a well once you are already thirsty – Yellow Emperors Classics of Internal Medicine”

The same goes for endometriosis. Once the disease is there and expressed into the body, it is hard to treat, especially is known methods of treatment are failing and this individualised, multimodality approach is used.

A Multimodality Approach Should Include:

  • Surgery
  • Pain Management
  • Hormone Therapy
  • Counselling
  • Lifestyle changes
  • Exercise
  • Pilates/Yoga
  • Changes to Diet
  • Traditional Chinese Medicine
  • Acupuncture
  • Holistic Medicine
  • Anything people have tried and has worked for them

The Royal College of Obstetricians & Gynaecologist guidelines for the “Investigations and Management of Endometriosis” have the following quote:

“Many women with endometriosis report that nutritional and complementary therapies such as homeopathy, reflexology, traditional Chinese medicine or herbal treatments, do improve pain symptoms. They should not be ruled out if the woman feels they could be beneficial for her overall pain management and/or quality of life, or work in conjunction with more modern medical therapies.”

This is why it is vital to take careful note of the woman’s complaints and to give her time to express her concerns and anxieties, as with other chronic diseases, just as I do for all of my patients. Healthcare providers actually need to listen to the woman and her concerns. Women need to be listened to and be heard and be nurtured

It is also important to involve the woman in all decisions, to be flexible in diagnostic and therapeutic thinking, to maintain a good relationship with the woman and for healthcare providers to seek advice where appropriate from more experienced colleagues. This is something that I try to educate all my patients with and something I also try to educate healthcare providers with when I do my seminars and speaking events about Women’s Health issues and diseases like endometriosis.

But while there are thing that healthcare providers need to do, there also things you must do also. These include

  • Reducing Stress
  • Look at Emotions and How They Affect You
  • Exercise
  • Get “You Time”
  • Eat more protein and less High GI Carbs
  • Eat less process and package foods that we now call “Carbage”
  • Loss some weight if you have excess fats (which spike estrogens)
  • Gain some weight if you are underweight.
  • Do Something You Love (At least once per week)
  • Laugh Often (Even if some days you feel like crying)
  • Spend Time With Friends and Loved Ones
  • Make Love J ( Climax and Oxytocin are your friends)
  • Do Not Let The Disease Define You
  • Don’t Buy Into The Label
  • You are more than this disease
  • If something is helping, then continue with it, no matter what anyone tells you
  • Just remember that “You” are uniquely “You”

Please remember these words :

  • Do Not Let The Disease Define You
  • Don’t Buy Into The Label
  • You are more than this disease
  • If something is helping, then continue with it, no matter what anyone tells you
  • Don’t buy into everything you read on the internet, social media, or “Dr Google. To be honest, I ban “Dr Google” with my patient (haha)
  • Make sure you have a good laugh each day, but remember it is also OK to have a good cry too
  • It is OK to unplug every so often
  • It is OK to take the “Superwoman” cape off every so often too.
  • Remember “You” are uniquely “You”

This is why it is so important to not get caught up in what others have done, or tried and may not now be working for you either. We need to look at you as an individual and treat you as such. What works for one person, may not work for another. This is why an individualised multimodality approach is needed to help prevent and treat this horrible disease and we often need a team of people, on the same page, to help treat this properly.

Don’t forget to “Get A Second Opinion”, or a Third, or Fourth, or Tenth one if needed

In many other areas in life we will get multiple quotes, and opinions. Yet, when it comes to our health, we often only get one quote, or maybe two.

Just because someone has your history, or is nice to you, or maybe recommended by a friend etc, does not make them a good practitioner. It does not mean that you cannot get another opinion. If someone isn’t helping you, then you need to look at changing, no matter who they are, or how well they know your history.

Not every specialist you see is a good surgeon either, so please remember this. You need to have someone who specialises in endometriosis and who has done advanced surgical training, not just minimal training. There is good and bad in every profession and the medical profession is not exempt from this either.

The complementary medicine profession, or allied health care profession exempt from this either. Your health is important and so is the value of another opinion. Not every practitioner has all the answers. If someone isn’t helping you, then don’t be scared to change.

Lastly please remember to know that there is always help out there. I am always here to help people as well. I have a special interest in endometriosis and do a lot of education and research into this disease. I also have masters level post graduate training in this disease and other women’s health and reproductive conditions.

You can always come and see me in person, or make an initial online consult (zoom) for those who live at a distance. I have a great team of people I work with to give you the best help possible. I have a team of some of the best health care professionals and I make sure all of the team I work in with, are at the top of their game in their chosen profession.

Let me be the conductor of your health issues and help you get the treatment and advice you so desperately deserve. I am here to listen to you and hear you. I make sure you don’t have things “Missed” and aren’t “Dismissed “ and why my treatment motto is “Leaving No Stone Unturned”. I am out there as a voice for women and being a crusader for women’s health everywhere. I don’t mind stepping on a few toes, and ego’s to get you the best help possible J

Take care and remember that “Period Pain Is Not Normal” and neither are and other “Menstrual Irregularities” that women face on a daily basis. I know what you go through daily and I am out there making sure you all get heard. Let’s end the silence on this horrible disease for you, and the ones close to me whom I love, adore and care about also.

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Advocate

-The Endometriosis Experts

Dr Andrew Orr Logo Retina 20 07 2016

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Could You Be Suffering With Interstitial Cystitis?

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Interstitial cystitis (IC) is a chronic inflammatory bladder condition in which there is persisting chronic pelvic pain, urinary frequency and urgency, bladder pain or pressure, and it can also resemble the symptoms of a urinary tract infection, but there will be no infection present. The pain can range from being mild to severe.

Worldwide Interstitial Cystitis affects up to 100 million people and it can affect both men and women, regardless of age. IC is also known as painful bladder syndrome (PBS), bladder pain syndrome (BPS) and chronic pelvic pain (CPP)

Women with interstitial cystitis may experience many of the same symptoms as those with endometriosis. Women can have both Interstitial Cystitis and endometriosis at the same time. Some people with IC may also have irritable bowel syndrome (IBS), Fibromyalgia and other pain syndromes

People with IC have chronic symptoms in the urinary tract that last more than 6 weeks in duration. Infection has not been identified as a cause of IC. Physical and emotional stress can worsen the symptoms of IC.

Interstitial Cystitis can cause the following symptoms:

  • Chronic pelvic pain that lasts 6 months or more
  • Symptoms affected by the menstrual cycle
  • Pain, pressure, discomfort or unpleasant sensation that may worsen as the bladder fills
  • Urinating often alleviates the pain and may give a temporary sense of relief;
  • Suprapubic pain or discomfort
  • Pelvic pain (lower abdominal pain), sometimes extending to the lower part of the back, the groin and thighs
  • In women there may be pain in the vagina and vulva
  • In men, pain in the penis, testicles, scrotum and perineum
  • Both men and women may have pain in the urethra and rectum
  • Pain with sexual intercourse in both men and women (dyspareunia)
  • Pain on ejaculation in men
  • Pain may worsen with specific foods or drinks
  • A frequent need to urinate (frequency), including at night (night-time frequency or nocturia)
  • An often urgent or compelling need to urinate (urgency)

The pain may be experienced as discomfort or tenderness or irritation or burning sensation in the bladder, in the form of spasms in or around the bladder, or stabbing or burning vaginal pain or simply a feeling of pressure on or in the bladder or a feeling of fullness even when there is only a little urine in the bladder.

In many people, the pain is relieved temporarily by urination, while other people may also feel strong pain following urination.

The pain or discomfort may be constant or intermittent. It may also be felt throughout the pelvic floor, including the lower bowel system and rectum. In some patients the pain may be very severe and debilitating.

Other people, particularly in the early stages, may have milder frequency with/without urgency and without a true sensation of pain. What they may experience, however, is a feeling of heaviness, fullness, discomfort or pressure.

Diagnosis

During the evaluation of potential IC, several tests may be completed to make a diagnosis. These tests may include taking a full medical history, completing a bladder diary, pelvic examination, including a neurological exam and urinalysis to rule out or diagnose an infection

Other diagnostic tests that can be carried out include:

Cystoscopy: This is performed inserting a tube, with a camera attached, into the bladder to evaluate the lining and to look for inflammation and signs of disease. A specialist may also evaluate the bladder capacity with a cystoscopy.

Urodynamics: The bladder is filled to test its capacity by measuring the pressure during filling and voiding. These tests evaluate the function of the bladder, urethra, and sphincter muscles.

Biopsy: During a cystoscopy, a biopsy may or may not be taken to rules out cancer or other inflammatory bladder conditions that can cause pain similar to IC.

Potassium sensitivity test: This is a test in which potassium and water are instilled into the bladder. In healthy bladders, pain is not felt with either solution. In cases of IC, however, pain is typically experienced when the potassium is instilled.

Diet

People with IC may be sensitive to certain foods and beverages. There is a range of items a person may need to excluded from their diet after receiving an IC diagnosis. This will be different for each individual but there are certain foods and drinks that an individual with IC should be aware of potentially needing to avoid. There are food and drinks such as:

  • tea and coffee
  • Soft drinks and soda (including diet drinks)
  • alcohol
  • citrus, citrus drinks and cranberry
  • artificial sweeteners
  • spicy food

Some people with IC may need to a food elimination diet over several weeks to see which specific foods and drinks may be exacerbating their symptoms. There are many foods that do not have an irritating effect on the bladder and contain vital nutrients to help fight disease. This is why elimination diets and specific dietary requirements need to be done under the guidance of a healthcare professional.

People with IC should also give up smoking if they are a smoker, as the chemicals can affect this condition too.

Treatment

The treatment of interstitial cystitis is complex and needs a multimodality approach to treat it effectively. It may require treatments such as:

  • Urodynamic Therapies
  • Physiotherapy with a specialised pelvic floor physiotherapist
  • Pelvic Floor Therapy (Kegels, Yoni eggs, Ba Wen Balls, internal TENS)
  • Surgery, including laser surgery
  • Neuromodulators, such as electrical nerve stimulators
  • Injections, such as Nerves blocks, Antispasmodics and Botox therapy
  • Pain medications- including narcotics, NSAIDS, Anti-inflammatories,
  • Hormone therapy, both oral and intravaginal
  • Antidepressants
  • Acupuncture
  • Pilates and Yoga
  • Exercise
  • Herbal Medicines, including Chinese Herbal Medicines
  • Amino acids, vitamins and antioxidants
  • Sex Therapy and counselling
  • Mindfulness
  • Adopting health sleeping habits

Your specialist or healthcare provider will discuss the best forms of treatment for your individual case. People with IC should also be referred to a Urodynamic and Pelvic Floor Specialist who specialises in this area.

Complications

Complications from IC can vary between individuals and why there is no one treatment fix all approach to this conditions. IC can affect a person life on so many levels. It can affect their bladder volume, their quality of life, their sex life, their libido and have an affect on sexual intimacy and it can also cause them emotional distress. It is a complex condition that can affect every aspect of a person’s life both physically and mentally and why a multimodality treatment approach is needed.

Causes

The exact cause of IC is not known, but there are several theories as to what triggers the condition. Some possible causes include:

  • Damage due to previous surgery
  • Defects in the lining of the urinary bladder that cause irritation
  • Overstretching of the bladder due to trauma
  • Pelvic floor muscle dysfunction
  • Autoimmune disorders
  • Spinal cord trauma
  • Genetics
  • Allergy

IC is a chronic inflammatory condition that affects many people world wide. It cannot be fully cured and requires close clinical management and care. A multimodality treatment approach needs to be adopted that is suited to the individual. When this is done properly, people with IC can still have a good quality of life.

Recommended treatment usually involves diet and lifestyle changes, stopping smoking, drinking less before bedtime, and scheduling planned toilet breaks to ensure the bladder does not get too full.

If you do need assistance with Interstitial Cystitis, please call my friendly staff and find out how I may be able to assist you.

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Advocate

-The Women’s Health Experts

Bladder Endometriosis

What is Bladder Endometriosis?

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Endometriosis is a condition where tissue resembling the uterus lining grows outside the uterus, such as on the ovaries or fallopian tubes. Endometriosis can spread to every organ in the body and can grow inside, or on the outer surface of the bladder.This is what is known as Bladder Endometriosis.

To learn more about endometriosis and to learn about the symptoms of this disease, you can click on this link to find out more (Click Here)

If endometriosis forms in, or on the bladder, it that can cause severe discomfort and pain. It can also make a woman want to urinate more and also with urgency, pain, burning and frequency.

There are other bladder conditions with the same, or similar symptoms, but endometriosis can also aggravate these conditions, or be present at the same time as well. I will discuss the other forms of bladder pain and interstitial cystitis, which can have similar symptoms to endometriosis affecting the bladder, or bladder endometriosis.

Prevalence

Bladder endometriosis is not common. Reports state that around 2 percent of women with endometriosis may have endometrial growths in their urinary system, with endometriosis growing in, or on the bladder. But even if endometriosis isn’t on, or in the bladder, it can still cause issues with the bladder and cause associated symptoms.

What are the Symptoms of Endometriosis in, or on the bladder?

One of the main symptoms bladder endometriosis is pain when the bladder is full and a woman needing to urinate more frequently. It can also cause symptoms resembling a urinary tract infection, but no infection will be found to be present.  Women do need to be aware that a significant portion of women with endometriosis are asymptomatic (meaning no symptoms) and may not be aware that they have endometriosis until they have investigations for another reason, such as not being able to fall pregnant.

Some women are more likely to notice symptoms of endometriosis around the time they are due to have their menstrual cycle.

Other symptoms of bladder endometriosis may include the following:
• More frequent need to urinate
• Needing to urinate urgently
• Feeling pain when the bladder is full
• Stinging and burning or painful sensations when passing urine
• Seeing blood in the urine
• Experiencing pelvic pain
• Having lower back pain, more on one side of the body

Diagnosis

The definitive diagnosis for endometriosis is via a laparoscopy as this is the gold standard investigation for investigating disease states inside the pelvic cavity. A biopsy is usually taken at the same time to check the microscopic implants of endometriosis, which cannot be seen visually. Normal ultrasound, transvaginal or abdominal, cannot diagnose endometriosis. Blood tests cannot diagnose endometriosis either.

If Endometriosis has spread inside the bladder a cystoscopy would be needed also. A cystoscopy is where a small scope is inserted into the bladder and the specialist can then see if there is endometriosis, or other inflammatory disease in the bladder lining.

The specialist will then see what stage the endometriosis is at. This is a staging system from 1-4, but this is only to let the surgeon know how much of the disease is present. The staging system does not have anything to do with pain levels, as pain levels “are not” related to the extent of the disease. A woman with stage 1 endometriosis could have more pain than someone who is stage 4, and someone who is stage 4, may not have any pain, or associated symptoms at all.

Treatment

There is no current cure for endometriosis. However, the condition can be managed through a multimodality approach that involves surgery, hormones, pain medication, physiotherapy, herbal medicines, acupuncture, yoga, pilates, diet, lifestyle changes, counselling and an individualised approach. Women with endometriosis need a team approach.

Surgery, via a laparoscopy, is the most common treatment, and definitive diagnosis, for those with endometriosis. If endometriosis had been found in the bladder transurethral surgery will be done at the same time. This involves a scope inside the bladder to cut away any endometriosis in the bladder lining. Sometimes a partial cystectomy is needed to remove an affected part of the bladder.

While surgery is a much-needed part of the treatment and diagnosis of endometriosis, it is not a cure. Endometriosis can, and often does, grow back again, even with the best medical forms of treatments and interventions.

Fertility

Bladder endometriosis does not have any effect on a woman’s fertility. However, endometriosis does grow in other parts of a woman’s body and reproductive system such as the ovaries, which may affect a woman’s likelihood of conception. But, endometriosis does not always affect fertility.

The Difference Between Bladder endometriosis interstitial cystitis
When endometriosis gets in the bladder it can cause very similar symptoms to another bladder condition called interstitial cystitis. This can often make it very hard to differentiate on symptoms alone.

It is also very possible to have both interstitial cystitis and endometriosis present at the same. This is why further investigations are needed to definitively diagnose both these conditions.

I do have a separate post on interstitial cystitis so that people know more about this inflammatory condition that affects the bladder.

Outlook for Women With Bladder Endometriosis

At present there is no real known cause of endometriosis and only speculation as to what the true cause is. We know that endometriosis is estrogen driven (not from estrogen dominance), but the most likely cause is probably due to genetic reasons and being a hereditary condition passed on through the parental mode of inheritance and then expressed into the body. The how, when and why will hopefully be answered in the not too distant future hopefully.

Women with endometriosis in the bladder do need to be careful and managed properly as it can cause kidney damage. There is also some research to show that endometriosis in the bladder can lead to cancer in the bladder, but this is thought to be very rare.

For now, anyone with endometriosis needs to be clinically managed properly through a multimodality team approach mentioned before. Let’s get more education out there so that women with this horrible disease have a voice and we end the silence for these women as well. Hopefully through education, funding and further research, this leads to the cure that women with endometriosis so desperately deserve.

If you do need help with endometriosis, please call my clinic staff and find out how I may be able to assist you. I do have a special interest in endometriosis and am very passionate about women receiving the right care and health management moving forward.

Regards

Andrew Orr

-No Stone Left Unturned

-Period Pain IS NOT Normal

-The Endometriosis Experts

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Genetics & Gene Sequencing May Be The Path To a Cure for Endometriosis

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I have always said that the biggest inroads to the management and treatment of endometriosis will come from the area of genetics. I’ve also said that if there is going to be a cure, this will be the pathway that is comes from.

We know that there are hereditary components to endometriosis and that if a parent, or someone in the family tree has the disease, it is likely to be passed onto the offspring in the gene pool of that family tree.

Research published in the New England Journal of Medicine has revealed that Gene sequencing has found a set of genetic mutations which may help to develop molecular tests to distinguish between mild and aggressive types of endometriosis.

This is a big step forward into finding out more about endometriosis and developing better medical treatments and management strategies. Hopefully one day it will also lead to a cure for women with this horrible disease.

Endometriosis is a painful disorder in women which ‘endometrial like’ tissue grows outside of the womb, most commonly into the abdomen, and will affect at least 1 in 10 women. It can spread to every part of the body.

Many women with endometriosis will experience symptoms of abdominal pain, migraines, pain with sex, ovulation pain, IBS like symptoms, UTI like symptoms (without infection present), menstrual cramps, abdominal distension and possible issues with infertility.

Endometriosis can affect both physical and mental health in sufferers. While a portion of women with endometriosis get pain and associated symptoms, it needs to be noted that a significant portion of women with endometriosis are asymptomatic (no symptoms) and would not even know that had it, until they are investigated for fertility purposes.

This discovery helps moves towards developing genetic based systems for classifying endometriosis to sort out which forms of the disorder needs more aggressive treatment. Presence of the unusual set of mutations suggest that while origins are rooted in normal endometrial cells mutations change their fate, the mutations identified have links to genetic mutations found in some forms of cancer. Abnormal endometriosis tissue growth will often spread throughout the abdominal cavity but rarely becomes cancerous with exception to a few cases when the ovaries are involved.

The close links to cancer have always baffled scientists, as endometriosis does behave like a cancer the way it spreads, and now they have found some of the same mutations found in cancers, in some of the endometriosis lesions. But again, endometriosis rarely turns cancerous, except if it does spread to the ovaries, but there have been some studies to suggest links that women with endometriosis may be at more risk of endometrial cancer.

In this research, the research scientists analysed the samples looking for mutations or abnormal changes in DNA and filtered out normal variations in genes which commonly occur. At least one or more mutations in endometriosis tissue that were not present in their normal tissue, in which the number and type of mutations varied per endometriosis lesion and each woman.The types of mutations found were among the most common mutated genes found, which are all known for DNA repair, controlling cell growth, and cell invasion.

The researchers are working on additional studies to investigate whether patient outcomes correlate with the mutations. Testing which can sort lesions into less or more aggressive has potential to help decide how to monitor progression as well as control and treat the endometriosis. It may also be possible to develop new treatments which use agents that block gene related pathways specific to an individual’s disease.

Women are normally prescribed anti-hormonal treatments, which block estrogen to shrink lesions. Endometriosis is estrogen driven and is not from estrogen dominance, as some people would have women believe.

Even small amounts of estrogen can drive the disease and cause the expression of the lesions. When endometriosis occurs on the ovaries and forms a large cyst, or endometrioma, it is typically removed as it increases the risk of developing ovarian cancer in some women.

I honestly believe (in my opinion only) that Endometriosis is a genetic condition passed down through the parental mode of inheritance and is much the same as other hereditary genetics issues such as haemachromatosis etc.

I also believe that the closest disease we can compare endometriosis to is cancer, as endometriosis spreads very much the same and can cause inflammation and pain in many part of the body. I do think we need to start talking about endometriosis being more like a benign form of cancer, in the way that it behaves and spreads through the body and the havoc it causes on the body too.

While this new development is not a cure for endometriosis, it is providing new insights into the disease, which will hopefully one day see a cure in the not so distant future. Lets help end the silence for women with this horrible disease by getting more awareness out there and let us hope that the cure will eventually come one day soon.

Regards

Andrew Orr
-No Stone Left Unturned
-Period Pain IS NOT Normal
-The Endometriosis Experts

References:

    1. https://www.nejm.org/doi/10.1056/NEJMoa1614814 –  (Cancer-Associated Mutations in Endometriosis without Cancer)
    2.  https://www.ncbi.nlm.nih.gov › pmc › articles › PMC6447774 – the genetic profile of endometriosis
    3. https://imb.uq.edu.au/article/2017/03/spotlight-endometriosis-research-long-game-help-our-daughters
    4. Stefansson H, Geirsson RT, Steinthorsdottir V, Jonsson H, Manolescu A, Kong A, Ingadottir G, Gulcher J, Stefansson K. Genetic factors contribute to the risk of developing endometriosis. Hum Reprod. 2002;17:555–559. doi: 10.1093/humrep/17.3.555. [PubMed]
    5. Matalliotakis M, Goulielmos G, Zervou M, Matalliotaki C, Koumantakis G, Matalliotakis I. The familial risk of endometriosis among the female relatives of patients with endometriosis in Greece. JEPPD. 2017;9:184–187. []
    6. Treloar SA, O’Connor DT, O’Connor VM, Martin NG. Genetic influences on endometriosis in an Australian twin sample. sueT@qimr.edu.au. Fertil Steril. 1999;71:701–710. doi: 10.1016/S0015-0282(98)00540-8. [PubMed] [CrossRef] []
    7. Krishnamoorthy K, Decherney AH. Genetics of endometriosis. Clin Obstet Gynecol. 2017;60:531–538. doi: 10.1097/GRF.0000000000000293. [PubMed] [CrossRef] []
    8. Wang M, Hao C, Huang X, Bao H, Qu Q, Liu Z, Dai H, He S, Yan W. Aberrant Expression of lncRNA (HOXA11-AS1) and Homeobox A (HOXA9, HOXA10, HOXA11, and HOXA13) Genes in Infertile Women With Endometriosis. Reprod Sci. 2018;25:654–661. doi: 10.1177/1933719117734320. [PubMed] [CrossRef] []
    9. Christofolini DM, Mafra FA, Catto MC, Bianco B, Barbosa CP. New candidate genes associated to endometriosis. Gynecol Endocrinol. 2019;35:62–65. doi: 10.1080/09513590.2018.1499090. [PubMed] [CrossRef] []