These are some of the main Facts about PCOS
Dr Andrew Orr
-No Stone Left Unturned
-Women and Men’s Health Advocate
These are some of the main Facts about PCOS
Dr Andrew Orr
-No Stone Left Unturned
-Women and Men’s Health Advocate
Many things you have heard about period pain and endometriosis are wrong. These are the facts about Endometriosis
Dr Andrew Orr
-No Stone Left Unturned
The one thing I have learn about life and having to live with a chronic disease is that no matter what you do sometimes, some days are just going to be bad days and that is OK
You can have the best diet in the world, you can have the best emotional outlook, you can exercise, and you can have the best support, but some days “Shit Happens”
Some days the disease state just flares up, or your immune system just doesn’t work as well as it should, or the body just wants to take a break and those are the days when you sit there wondering what you have done, or ask yourself “why is this happening?”
This week I had one of those weeks. I am sure many people can relate. My lung capacity was at half of what it should be and I was really struggling to get on top of it all. I had to work really hard to get back to a state of normalcy and it was really concerning me and also frustrating me. The whole week was a struggle and then by the end of the week, I was starting to feel back to normal again. But, it took some really hard work to start to feel normal again.
“Why?” I kept asking. My diet is good and I am taking my medicines and trying to stay positive and I have been getting to be early, so why is this happening?
Well the truth is that sometimes, when you are living with a chronic disease, no matter what you do, you are just going to have bad days. People can say what they want, or try to justify it being this, or that, but some days there is just no reason why. But, the main thing is that even though you have bad days, as long as the good outweigh the bad, then you are moving forward and probably in a better place than you previously were. We aren’t invincible. We are humans. We get sick. We get tired. We get stressed. We cannot expect to be in perfect health all the time and sometimes we just have to realise this. Then, if you have a chronic disease state, there is more chance of having some bad days and again, that is OK.
Having said that, if you do all of a sudden have a flare up of symptoms, it is good to do the system check and evaluate what may be causing you to have a flare up, or have a bad day, or not feel so great, or feel so tired etc.
The things you need to ask yourself are:
All these things you need to ask yourself and are some of the things I asked myself recently. If you aren’t getting enough sleep, stressing too much, not exercising, not eating well, aren’t being positive, aren’t drinking enough water, not taking your medications, not following healthcare advice etc, and then all these things can lead to a flare of symptoms. Sometimes it is just a bit of everything that builds up and causes you to feel poorly, or have a flare of symptoms. Sometimes it may just be one thing alone. No matter what it is, you need to do a check and see if there is anything that needs to be changed in order for you to feel better.
Some of the things you can do to feel better:
There are many other things you can do to make yourself feel better and help get your health back on track.
As I said, we are humans and we aren’t perfect, but we also need to sometimes stop and take check of our lives and look at what may be causing our health to suffer, or our disease states to be exacerbated and flare symptoms. It is about being proactive and being honest with one’s self and then making the necessary changes to help yourself get better. There is no “try” there is only “do”.
Lastly, just remember to not be harsh on yourself. Be kind to yourself. Just remember that you are human and it is OK to have a bad day. If those bad days continue, it just means you need to get some help and get back on top of your health again and that is OK. Never be scared to ask for help when you need it and ask for support from those around you.
Now, off you go, and be the best version of you and go and have a good day.
Dr Andrew Orr
-No Stone Left Unturned
-Women’s and Men’s Health Advocate
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 as well as it could be. 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 know do what I do and my motto is “No Stone Left Unturned”.
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 surgical intervention, hormonal therapies, pain medications etc, that the disease state can continue to grow and cause debilitating symptoms, both physically and emotionally.
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!” and this is where many get caught in the vicious 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.
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.
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. 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. 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.
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 approach, 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?
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. 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 go and find someone who will help you. It might just change your life. Remember that if you do not change anything, nothing 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.
This is why as a healthcare practitioner, I use a 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 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 help me 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. If you aren’t strong enough to do it on your own, find someone who will be your voice for you. I know this is what I do for my patients.
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. 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.
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. 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 so need help, I can always assist you in the marathon of your own disease as well.
Dr Andrew Orr
-No Stone Left Unturned
-Women’s and Men’s Health Advocate
Vaginal bleeding between periods can be common and is not generally a cause for concern. Most of the time women will get just very light pink coloured watery flow, or just some spotting. There can be many reasons why a woman would be getting bleeding between periods, which includes hormonal changes, injury, or an underlying gynaecological, or health condition.
While bleeding between your periods may not be cause for concern, on one level, the ideal situation is to not have any form of bleeding at all and if you do get bleeding between your cycle, it is a good idea to have this investigated, just to be on the safe side.
What a proper menstrual cycle should be like
I have done quite a few posts on what a proper menstrual cycle should be like, but I will go over this again just briefly
A proper menstrual cycle should be between 26-32 days in length and really only have about 3-5 days flow. Any longer than this can be too long and put a woman at risk of being low in iron, especially if this happens all the time.
The blood flow should be a nice red consistency, no clots, with no stopping and starting, and women shouldn’t have too many digestive disruptions, and really, a woman should not be getting pain with her cycle. A little bit of distention and knowing the period is coming is fine, but there should not be pain at all. If you have to reach for the pain killers and the heat pack, or are doubled up in pain, this is not normal and you need to get this checked out.
As mentioned before, there can be a variety of reasons for breakthrough bleeding, some of which are no cause for concern at all. Some however do need to be investigated.
Below are some of reasons for bleeding between periods:
When an egg is released from the ovary, it does create a tiny wound, through which the egg will then travel through the tubes and prepare to make its way to be fertilised, or then shed with the menstrual flow. At ovulation, this tiny wound can also create a tiny amount of bleeding, which can be seen as spotting during the ovulatory phase of a woman’s cycle.
When an embryo implants into the uterine lining and begins to grow, many women experience spotting around this time. This is called implantation bleeding. They may also experience some slight cramping at the same time and all of this is quite normal. Some women may then experience some lighter bleeding as the embryo grows further. They usually get some light spotting, which can be a light pink, or a brown colour. Sometimes it can be more like fresh blood. While this is normal, it is a good idea to get this checked out just to be on the safe side and to also put the pregnant mothers mind as ease too.
Bleeding between menstrual periods can be an early sign of a miscarriage. Many women may not even know they are pregnant and may be completely unaware they are having a miscarriage. While it is generally thought that once a woman reaches twelve weeks gestation everything is generally going to be ok, miscarriages can occur at any time during pregnancy.
After having a termination women can bleed for some time after the procedure, or taking the medication to start the abortion process. If bleeding continues and is very heavy, women need to seek medical advice.
Polyps are small growths that can develop in the uterus or on the cervix. They are often a cause for unexplained bleeding between the cycles. Polyps do need to be removed as they can prevent implantation happening and they can also turn cancerous if left behind. Polyps are a very common cause of bleeding between periods.
Fibroids, or myomas (also known as leiomyomas, or fibromyomas) are growths, or benign (non-cancerous) tumours that form in the muscle of the uterus. Up to 40% of women over the age of 40 years have fibroids and as many as 3 out of 4 women develop fibroids in their lifetime.
Fibroids can cause heavy bleeding, extended bleed and painful periods. They can also cause infertility, miscarriage and premature labour. In many women, they will not cause any problems at all. Fibroids are a very common cause of bleeding between the cycles.
Polycystic Ovarian syndrome (PCOS)
Polycystic Ovarian Syndrome (PCOS) is a very common condition that can cause irregular periods, absent periods, and can also cause bleeding between periods. PCOS can also cause other issues such as acne, weight gain, infertility and hormonal and emotional disturbances.
Endometriosis or Adenomyosis
One in ten women are diagnosed with endometriosis and many more do not even know that they have it. Endometriosis and Adenomyosis are very closely related, with endometriosis usually being more superficial disease and not confined to the uterus, and adenomyosis being deep within the uterine tissue. Chronic conditions such as endometriosis and adenomyosis, can cause bleeding or spotting between periods. These conditions may also cause heavy or painful menstrual periods and cramps between periods. Adenomyosis will usually cause more bleeding symptoms along with pain etc.
Sexually transmitted infections (STIs)
Some sexually transmitted infections (STIs) can cause pain, vaginal bleeding and spotting. If you do suspect you may have a STI, you need to see your doctor for investigation and treatment.
Injury to the vaginal wall
During sexual intercourse the tissue of the vagina can be damaged and this can then cause bleeding. If the vagina is too dry, lack of arousal, and not lubricated enough this is more likely to happen. It can also happen if there is atrophy in the vaginal tissue as well. This is called atrophic vaginitis. This is more likely to be seen when a woman is going into menopause, or undergoing cancer treatments, or has diabetes.
Menopause or perimenopause
The menopausal stage of life and especially the perimenopause stage, can be a cause of irregular menses and irregular bleeding. It can also cause spotting, or heavy bleeding too. Perimenopause is the period leading up to menopause. This stage of a woman’s life can last for up to 10 years as hormone levels in the body change and can be unstable.
Hormonal contraceptives are a common cause of bleeding between periods. They can also cause irregular bleeding and this can be quite usual in the first 3 months of using the contraceptive. If a woman misses takin her oral contraceptive, it can also cause irregular bleeding, or a withdrawal bleed. Intrauterine Devices (IUD’s) like the Mirena, will often cause irregular periods and irregular bleeding in the first 3 months after it have been inserted. If bleeding lasts for longer than 3 months on any contraceptive, it is a good idea to seek medical advice and get investigated and managed properly.
The morning after pill, or emergency contraceptives, may also cause bleeding. If bleeding persists, you should seek medical advice.
Vaginal bleeding between periods can also be a sign of gynaecological cancers in women. Most bleeding that women get is not serious, but it still needs to be checked. Cervical cancer can affect women of any age. Bleeding between the cycle, or after intercourse, and pain after intercourse, or unpleasant smelling discharge can be symptoms of cervical cancer and these all need to be checked by your doctor, or gynaecologist.
Uterine cancer tends to occur in women over 50 year of age. One of the early symptoms of uterine cancer can be vaginal bleeding. Uterine cancer mostly affects women are in the menopause and no longer have periods, so this is why any bleeding after menopause needs to be investigate and seen as not being normal.
Yes, stress can cause abnormal bleeding and also interfere with a woman’s cycle. Increased levels of stress can interfere with hormones and this can lead to bleeding, irregular cycles, or pain with cycles too.
When to see a doctor
If vaginal bleeding between periods is heavy, persistent, or unusual then a woman should go and see a specialist, or a gynaecologist, who is a specialist in this area of medicine. As mentioned previously, while some causes of bleeding are not serious, some are and need to be properly investigated and properly managed medically.
Treatment and prevention
All women should keep a record of their menstrual cycle and when the period starts and how long it lasts for. Any abnormal bleeding should be recorded so that you can show your healthcare specialist if need be. Any abnormal bleeding should be investigated and the treatment will depend on what the underlying cause is.
Women should try and see their healthcare specialist for regular pap smears and regular check-ups for gynaecological health.
If women are getting small tears and bleeding caused from dryness in the vagina, then there are water based lubricants that can be used to help with lubrication and to moisturise the surrounding tissue.
There is no cure for gynaecological and reproductive issues such PCOS and Endometriosis, but these disease states can be treated and managed to give women a normal life. Proper treatment of these issues needs a “Team”, or multimodality approach using medical options, surgical interventions, pelvic floor specialists, acupuncture, herbal medicines, hormone therapies, and diet and lifestyle changes. It is about using what works for the individual and not a blanket one treatment fits all approach.
Last but not least, all women should know that period pain is not normal and that irregular bleeding really isn’t normal either. While most causes of bleeding are not life threatening, they still need to be investigated and checked out properly. Never ever put off seeing a specialist if you have abnormal bleeding.
Dr Andrew Orr
-No Stone Left Unturned
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 what I was saying. Not so. 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.
Recently I have been 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. 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 be free of the disease completely. At least 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 (surgical), 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 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 Needs To Include:
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
Please remember these words :
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. Neither is 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 and I am a specialist in this area, alongside many other Women’s Health issues and Gynaecological issues. You can always come and see me in person, or make an appointment via skype, 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 there is and I make sure all of them 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 J
Dr Andrew Orr
No Stone Left Unturned
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:
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.
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.
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:
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.
The treatment of interstitial cystitis is complex and needs a multimodality approach to treat it effectively. It may require treatments such as:
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 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.
The exact cause of IC is not known, but there are several theories as to what triggers the condition. Some possible causes include:
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.
Dr Andrew Orr
-No Stone Left Unturned
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.
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
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.
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 treatment.
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 will do 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.
Dr Andrew Orr
-No Stone Left Unturned
-Period Pain IS NOT Normal
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.
New 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 uterine 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 latest 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.
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.
Dr Andrew Orr
-No Stone Left Unturned
-Period Pain IS NOT Normal
A new study published in the American Journal of Obstetrics and Gynaecology has shown that acupressure may help to alleviate menstrual pain. There have been numerous studies on the effectiveness of acupuncture for period pain, but now researchers from Charité — Universitätsmedizin Berlin, have found that acupressure could help to alleviate menstrual pain as well.
Acupressure is a technique derived from traditional Chinese medicine (TCM). Rather than using needles, this technique involves massage or pressure being applied to specific points on the body. The good thing is that this can be taught to women and they can use these methods at home.
Approximately 50 to 90 percent of young women experience pain during their periods. Before we go any further, it is important for all women to know that period pain “IS NOT” Normal and could be a sign of a major gynaecological condition such as endometriosis. Any woman who gets period pain, should be evaluated by a proper specialist.One of my mottos is that Period Pain IS NOT Normal and no woman should have to endure pain each cycle.
While this pain primarily manifests itself as lower abdominal cramping, other symptoms include headache, backache, nausea, bloating, fluid retention and diarrhoea.
The researchers wanted to evaluate whether self acupressure would be more effective at achieving a sustained reduction in menstrual pain than usual care alone (e.g. pain medication and hormonal contraceptives). A total of 221 participants, aged between 18 and 34 years, were randomly assigned to one of two treatment groups, both of which received a study app and short introduction. Only one of the groups had acupressure points on their app.
After three months, (37 percent) of participants in the acupressure group reported a (50 percent) reduction in pain intensity. After six months, this proportion had increased to more than half of the women in this group (58 percent). The acupressure group also used less pain medication than women in the control group and reported lower levels of pain overall.
The researchers also noted the they were surprised to see that, after six months, two thirds of participants continued to use self-acupressure and continued to gain the benefits of this age old technique.
Acupuncture and acupressure is something I do recommend to any woman with period pain, or conditions such as endometriosis, with other associated symptoms and pain.
Dr Andrew Orr
-No Stone Left Unturned