Endometriosis complications

The Complications That Can Result From Unmanaged Endometriosis

A lot of the information about endometriosis, is more about it’s symptoms, time to diagnosis and future fertility outcomes. While it is necessary to educate people about these things, nobody is really talking about the serious complications of unmanaged endometriosis. This is not to scare people, or create fear, but at the same time it does need to be talked about and for all concerned to know how serious this disease state can be at its worst.

We know that many women are missed and dismissed when it comes to endometriosis. It often takes up to 10 years, or even more for some women, before they are definitively diagnosed. Some women are never diagnosed and end up suffering a terrible life because of it. Some women with endometriosis are asymptomatic (meaning no symptoms) and often only get diagnosed as part of fertility evaluation, when they may be having trouble conceiving.

The symptoms of endometriosis are easy to see

The symptoms of endometriosis are very easy to see, if someone knows what they are looking for and knows the right questions to ask. Sure, a definite diagnosis via laparoscopy is still needed, but there are some very clear-cut pointers that a woman may have the disease. But due to lack of education and lack of true experts in this area means that lots of women are missed and dismissed, and that is a fact.

The vicious cycle of mismanagement

But while there are inadequacies in the healthcare profession when it comes to endometriosis, not all mismanagement can be blamed on healthcare professionals. There are people who are not seeking proper help soon enough, and some not at all, and this can lead to long-term complications too. We also have women trying to manage their own disease through advice of friends, social media groups and Dr Google as well. This then creates one hell of a mismanaged cycle that does not help anyone.

I can see the issues from all points of view, especially those who suffer the disease. But as a healthcare professional with a special interest in Endometriosis, I have had my fair share of non-compliant patients too.

While many have been let down through mismanagement, lack of funding and education, being missed and dismissed etc, there are many women who are self sabotaging as well. I have seen many not take on advice, recommendations and proper management of their disease, that could help them, then these same people scream high and low that the system has let them down. There are some who are just happy to live with the disease, as it is their only way of seeking attention. This is a fact also and we need to talk about it.

This is what has prompted me to do this post so that all concerned get to know what the serious side of mismanaged endometriosis is. Sometimes it is only via the serious harsh side of reality, that all concerned may actually get some help and some serious attention be bought to this disease state.

The common symptoms of endometriosis

We know that many women suffer greatly at the hands of this disease. Women with endometriosis can get the follow common symptoms:

  • Period pain
  • Pain with intercourse
  • IBS like symptoms
  • Gastrointestinal issues
  • Chronic constipation
  • Chronic diarrhoea
  • Pain on bowel movement
  • Bleeding from the bowel
  • Chronic abdominal pain
  • Severe bloating (endo belly)
  • Chronic bloating
  • Aversion to foods (even if they are not the trigger)
  • Ovulation Pain
  • Ovary pain
  • UTI like symptoms (with no infection present)
  • Migraines and headaches
  • Chronic pelvic pain
  • Pelvic and rectal pressure feeling
  • Musculoskeletal pain
  • Chronic nerve pain
  • Fluid retention
  • Iron deficiency
  • Mood swings
  • Anxiety
  • Depression
  • Mood disorders
  • Infertility
  • Other symptoms

Early intervention and management is crucial

Women’s lives are greatly impacted by this disease and it is important that not only healthcare professionals understand this but also sufferers of the disease. Early intervention and proper ongoing management is the key to helping this disease and everyone needs to be aware of this. Being missed and dismissed, or waiting too long to help, can really have some serious consequences if this disease is left to grow and spread and cause serious damage in the body

The serious consequences of mismanaged/unmanaged endometriosis

While we have talked about the common daily symptoms that many can put up with, we also need to bring attention to just how serious this disease can get. Let’s face it, it can and does spread like cancer and it can spread to every organ in the body. It has been found in the joints of bones, fingers, in the liver, around the lungs, around the diaphragm, around the heart, on the bowels, on the bladder, on the ovaries, on the pelvic, in the fallopian tubes, one the retina in the eyes and it has even found in the brain.

There is no doubt that this disease can be very devastating for anyone who has it, but what happens in the worst cause scenario, if it is left unmanaged.

The following can be serious complications of unmanaged endometriosis:

  • Haemorrhage from the ovaries
  • Ruptured ovaries
  • Ovarian torsion
  • Obliterated fallopian tubes
  • Ruptured endometrioma
  • Endometrioma infection
  • Pelvic infection
  • Obliteration of the pelvic cavity
  • Peritonitis
  • Sepsis
  • Compacted bowel
  • Obstructed bowel
  • Perforated bowel
  • Bowel haemorrhage
  • Torsion of the bowel and intestines.
  • Ureteral Obstruction (Blocked ureters)
  • Renal infection
  • Bladder obstruction
  • Painful bladder syndrome
  • Severe adhesions
  • Significant scar tissue build up
  • Significant fluid build up in the pelvic cavity.
  • Multiple organs adhered together
  • Diaphragmic adhesions
  • Liver damage
  • Perihepatic adhesions
  • Pericardial endometriosis
  • Cardiovascular events
  • Stroke
  • Chronic nerve pain
  • Pudendal nerve neuralgia.
  • Chronic musculosketal, or spinal pain
  • Arthritic like pain and associated symptoms
  • Chronic Migraine and neurological events.
  • Malignancies and cancers (rare but more research being done)
  • Hysterectomy
  • Recurrent miscarriage
  • Absolute infertility
  • Opioid dependency and addiction
  • Death from opioids medications
  • Complications from medications and hormonal treatments
  • Psychotic disorders
  • Mania
  • Incapacitation
  • Suicidal tendencies and thoughts
  • Suicide
  • Death (rare from endometriosis directly, but can be from associated factors related to endometriosis and also taking ones own life)
  • Other

Women with endometriosis need to see an “Endometriosis Expert”

This is why endometriosis needs to be managed properly and managed by a healthcare professional that specialises in the management of endometriosis and associated symptoms. You need to see and Endometriosis Expert.

People cannot treat, or manage the symptoms of endometriosis on their own. This is why it is so important to have the right care and also have a multimodality/team approach to endometriosis. No amount of google searching is going to help people treat endometriosis on their own. You need to find an endometriosis expert.

At the same time more education needs to be given to GP’s and other healthcare professionals about endometriosis. Too many women are being missed and dismissed because of lack of practitioner understanding and education at the front line. Women need to see healthcare professionals that specialise in endometriosis and endometriosis experts for this disease, not just a GP. Women also need access to advanced trained laparoscopic surgeons who specialise in excision surgery, not just a regular gynaecologist who is not advanced trained. I have talked about this often.

Endometriosis is not just about period pain

Lastly, we need to educate ‘all’ that endometriosis is not just about period pain. Endometriosis can present with many different signs and symptoms ranging from gastrointestinal symptoms, extreme bloating, bladder issues, bowel issues, IBS symptoms, migraines, fluid retentions, pain with intercourse, pain on bowel movement and so many other symptoms mentioned before. There is also the long-term impact on fertility for up to 50% of women too.

This is why early intervention and management of teenagers presenting with the disease symptoms is crucial. The longer the disease is left, the more damage it can do and all women deserve to be mothers (if they chose) and deserve a normal happy life. We also need to recognise the psychological impact of the disease and how this can present in someone with the disease as well.

Women are dying because of being mismanaged/unmanaged

Let’s face it, there are women dying because of this disease. Maybe not as direct result, but definitely indirectly. No woman should ever be pushed to the point where she cannot handle her pain and symptoms any longer and be only left with the choice of taking ones own life. This is exactly we need to bring more education to all about this disease. This means both healthcare practitioners and people with the disease itself too.

People need to be managed properly and by professionals. We need to start bring education and attention to this, so that people do not try to manage this disease on their own, and practitioners are held more accountable for dismissing women as well. Because if we don’t the complications of this can be very severe and sometime they can be fatal also.

Endometriosis awareness month is next month and I want to see all women with endometriosis being managed properly and seeking the right help. There are endometriosis experts out there who can help you if you have the disease and the associated symptoms. No woman should be doing this on their own.

Let me help you

If you so need help with managing endometriosis and the associated symptoms of endometriosis, please give my staff a call and find out how I can assist you. I have options for in-person consultations and online consultations. I use a multimodality/team approach and I also work in with some of the best medical healthcare professionals and surgeons in the country. I will always make sure you get the best care, best support and best management possible. I will also hold your hand every step of the way and make sure your every concern is listened to as well.

Regards

Andrew Orr

-No Stone Left Unturned

-Master of Women’s Health Medicine

-The Endometriosis Experts

 

 

 

 

 

When a Hysterectomy Should Be Considered

When A Hysterectomy Should Be Considered

Many times I have talked about “Why a hysterectomy does not cure endometriosis” and so I have decided to talk about “When a hysterectomy should be considered”

Now, before you go any further, I need people to sit back, listen objectively and also take the personal out of this. This is a very personal topic and yes, I am a man and a male healthcare practitioner all in one, with over 20 years experience in helping women with women’s health conditions and being a voice for them also. But regardless, this topic does need to be talked about. Any negative comments, or rudeness will get the delete button immediately. Constructive discussion is always welcome.

The long and short of it is this. There are times when a hysterectomy should be considered (lack of quality of life, cancers etc) and we need to be able to give women the facts so that they can make informed choices, and also not be judged for those choices either. The fact is that for some conditions, women actually get their life back after having a hysterectomy and I talk about all of this and more in this video blog.

 

Adenomyosis 2

Let’s Talk About Adenomyosis

As a healthcare practitioner with a special interest in women’s health, more and more I am seeing women presenting with all the symptoms of Adenomyosis. This is why this post is called “Let’s Talk About Adenomyosis”.

Just like endometriosis, many women have had this condition missed and dismissed and then have to suffer the consequences and think that they just have to put up with it month after month.

Some women are completely unaware that they have adenomyosis. Those that have already been diagnosed with endometriosis often believe that all their symptoms are just related to this disease only, when it fact, they could have two diseases creating all their issues.

Many of the symptoms are the same as endometriosis, except that women will usually have heavier menstrual bleeding, or irregular bleeding issues.

Women can have both endometriosis and adenomyosis at the same time and now research is showing that they are basically one in the same disease, but just in different locations.

What is Adenomyosis?

Adenomyosis is defined as the presence of endometrial glandular tissue occurring deep in the endometrial lining (myometrium). The exact cause of adenomyosis is unknown, but current research is showing that it is a similar process to how endometriosis is caused.

Histologically both endometriosis and adenomyosis are one in the same disease state, but just occurring in different locations. We know that both diseases are driven by estrogen and that they have all the same signs and symptoms. Adenomyosis and endometriosis are not caused by estrogen dominance either. Even small amounts of estrogen will drive both diseases.

The only difference between the two disease states is that adenomyosis typically causes more heavy bleeding symptoms. The abnormal bleeding occurs when the ectopic endometrial tissue induces hyperplasia and hypertrophy of the surrounding myometrium. This causes uterine enlargement and subsequent changes in vascularisation (the new vessels may also be more fragile than usual) in addition to an increase in the surface area of the endometrium.

One of the key diagnostics for adenomyosis is the presence of an enlarged uterus on ultrasound, or via MRI. The enlarged uterus can also impact the surrounding structures and often impacts the bladder, leading to urinary frequency and other bladder issues.

Adenomyosis can also have the same bleeding symptoms as fibroids but correct diagnosis and investigations, will differentiate the two and ensure correct management moving forward.

What Are the Symptoms of Adenomyosis?

As mentioned previously, adenomyosis has all the same symptoms as endometriosis. Just like endometriosis, some women often have no symptoms (are asymptomatic), and are only diagnosed when they are having issues trying to conceive.

The main symptoms of Adenomyosis are:

  • Heavy, prolonged menstrual bleeding
  • Severe pain and menstrual cramps
  • Abdominal pressure and bloating
  • Bladder issues (frequency, urge frequency, incontinence)
  • Anaemia

Other associated symptoms such are:

  • Irregular bleeding
  • Pain with bowel movement
  • Irritable Bowel like symptoms
  • Urinary Tract Infection (UTI) like symptoms
  • Fatigue
  • Mental and emotional disturbances (depression, premenstrual dysphoric disorder)
  • Pain with intercourse
  • Infertility
  • Musculoskeletal pain
  • Lack of quality of life

Diagnosis of Adenomyosis.

Ultrasound is the most common (and indeed most useful) first-line imaging tool used to diagnose adenomyosis in a women presenting with any abnormal uterine bleeding. While ultrasound cannot definitively diagnose adenomyosis, it can help to differentiate and rule out other conditions with similar symptoms.

Sometimes saline solution is injected in the uterus at the same time as ultrasound is performed to give better imaging and to help evaluate the symptoms associated with adenomyosis. This is called sono-hysterography.

While trans-vaginal ultrasound (TVU) can be used, it can also miss the disease, especially if the user doesn’t have an expert eye, or extra training, or specialises in the diagnosis of adenomyosis.

MRI is considered a much better tool for the finding of adenomyosis, but it is a more expensive option. Even though ultrasound is a cheaper option, it can be inaccurate.

Blood tests cannot diagnose adenomyosis, or endometriosis.

The only proper way to definitely diagnose adenomyosis is via surgical intervention and a biopsy, but this is rarely done prior to a hysterectomy due to risk factors of damage to the uterine lining. Unlike endometriosis, the disease cannot be excised and the only cure for adenomyosis is hysterectomy.

Treatment and Management Options For Adenomyosis

The treatment and management of adenomyosis will depend in part on your presenting symptoms, their severity, and whether you have completed childbearing.

The medical management options for adenomyosis are usually in the form of hormonal therapy (the Oral Contraceptive Pill, Mirena IUS or other types of progestogen therapy) or surgical.

The surgical options are endometrial ablation, uterine artery embolism and hysterectomy. When considering surgical therapy it must be acknowledged that endometrial ablation and uterine artery embolism is less effective compared with the more definitive but more invasive option of hysterectomy.

Research does show that a significant portion of women, who choose to do endometrial ablation, or uterine artery embolism, will end up needing a hysterectomy. Hysterectomy is not the major procedure it was years ago and many are done laparoscopically and done intravaginally. This also helps with the recovery time. It all gets back to quality of life for many women with endometriosis. This is why hysterectomy is now a better option than other surgical interventions.

While hysterectomy is not something to be taken lightly, we do need to be real about quality of life and the ongoing pain, other associated symptoms, long term bleeding and the dangers of long term anaemia that adenomyosis can cause to a woman. Many women often quote getting their life back and wished that they had the hysterectomy sooner, rather than putting up with the lack of quality of life. Hysterectomy is a cure for adenomyosis, but it is not a cure for endometriosis.

Other Management Options For Women With Adenomyosis

  • Medical treatments(pain medications, iron infusions)
  • Complementary medicines (Acupuncture, Chinese herbal medicine, vitamins and nutrient support),
  • Nutrition and diet
  • Counselling & Psychology
  • Meditation and Mindfulness
  • Pain management clinics
  • Physiotherapy
  • Exercise therapy(weight baring exercise, resistance training)
  • Core strengthening(pilates, yoga)
  • Pelvic floor management(Pilates, Kegels Exercises/Kegels balls, Vaginal stone eggs),
  • Urodynamics

For women who do not want to consider surgical options, adenomyosis requires a multimodality/team approach for ongoing management, treatment and support. In most cases it will need a combination of the therapies above, or all of them, in conjunction with medical interventions and medicines.

In nearly all cases, treatment and management is the same as endometriosis, except there needs to be more focus on the heavy bleeding symptoms. I always apply a multi-modality approach to assist all my patients who have adenomyosis, or endometriosis, or both combined.

Mild symptoms may be treated with over-the-counter pain medications, complementary medicines and supplements and the use of heating pads to ease pain and cramps. It is important to talk to your healthcare practitioner about treatment options to suit your individual needs and individual symptoms.

Outlook For Women With Adenomyosis

Adenomyosis is not a life-threatening condition, although if some symptoms, such as anaemia and emotional disturbances, aren’t managed properly, or early on, it could potential be life threatening. Many of the symptoms such as heavy bleeding, pelvic pain, pain with intercourse, anaemia and bladder and bowel issues can, and do negatively impact a woman’s life.

Women with adenomyosis are often anaemic and long-term anaemia can have serious health consequences. See my post of serious consequences of iron deficiency. Click here

Many women with adenomyosis, if not all, will need an iron infusion if their iron levels are low. See my post “Could you need an Iron Infusion?”

While surgical options such as hysterectomy can cure adenomyosis, there are both medical and complementary medicines available that may help alleviate the symptoms of adenomyosis.

Adenomyosis and associated symptoms can resolve on their own after menopause. If women have endometriosis as well, they will often require ongoing treatment and management after hysterectomy, as hysterectomy does not cure endometriosis. As mentioned previously, hysterectomy will cure adenomyosis.

Anyone with symptoms of adenomyosis should consult a medical specialist, a healthcare practitioner that specialises in adenomyosis and endometriosis.

Final Word

If you do need help and assistance with the management of adenomyosis, the please call my friendly staff to find out how I may be able to assist you. My motto is ‘no stone left unturned’ and I apply this to every person I see and help. I also have a network of other healthcare professionals I work with as well.

Regards

Andrew Orr

-No Stone Left Unturned

-Master of Women’s Health Medicine and Master of Reproductive Medicine

-The Endometriosis Experts (incorporating adenomyosis as well)

 

Understanding Why Hysterectomy Does Not Cure Endometriosis

Hey everyone. I’ve just recently put up a post about the facts about why hysterectomy does not cure endometriosis.

It seems this is a very contentious issue and many people are not understanding the facts, or how endometriosis presents in the body. I also think that some people just haven’t read the actual article, as I do explain all of the reasons why.

But, it does seem some people are still not getting the reasons why, or have been told the wrong things. As usual, I am here to give the facts and this is what I am here to do with this post.. Give the facts.

I am sorry for many of the journeys you have been on too and that some of you are not being listened too as well. That is why I am here. To raise awareness and give the facts and help women with endometriosis have a voice.

This is to also raise awareness about adenomyosis too. Many really do not realise that they have this disease state, or have it coinciding with endometriosis as well.

So, I have done up the video blog to explain things in more detail and hopefully it helps all of you understand things better. It is also so people can see a visual explanation and see why hysterectomy will not “Cure” endometriosis.

Endometriosis Awareness Month March 2019

Dr Andrew Orr has an honest and open talk about Endometriosis Awareness Month and also about the disease itself.

Dr Andrew Orr talks about the facts, the myths and what women with endometriosis go through on a daily basis.

He also discussed that there is help out there and what is needed in a multi-modality (team like) approach to care and ongoing management of the disease

Lastly, he wants every women, and man, to know that Period Pain IS NOT Normal and that women do not need to suffer in silence. There is always help out there and you just have to find the right people who will care, listen and help you in every aspect that you need.

Dr Andrew Orr has a special interest in Endometriosis and does research and lecturers about this horrible disease that affects 1 in 10 women world wide. If you do need help with period pain, or endometriosis and the associated symptoms, please give his clinic a call. Please do not suffer in silence alone. There is help out there. Dr Andrew Orr’s motto is “No Stone Left Unturned” and he uses this to assist all his patients.

Take care

Regards

Dr Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Expert

01 Dr Andrew Orr 1

time for a change 2015164 1920

The Importance of Following Through With Advice, Treatments & Change

I see so many people who have been ‘missed’ and ‘dismissed’ and who have suffered in silence with their disease state.

But the biggest shame is when those that are offered real help, then do nothing with that advice and continue on the vicious, merry-go-round cycle of their disease.

My motto is “No Stone Left Unturned” and I apply that to every patient that I see. My initial consults are usually 1-2 hours in length and I also do lots of preliminary work prior to see a patient as well. I make sure all my patients are now only sent health appraisal questionnaires, but are also evaluated with mood and stress questionnaires for their mental health too.

I really want to delve into every fine detail of a persons life to see what may be driving their disease state and symptoms. It is to also help with diagnosing those that have not been properly diagnosed either. I then write up a comprehensive report for all my patients, with everything they need to do, the changes they need to make, the medicines they need to take, the investigations and testing they need to have and all their step by step health management moving forward. It really is a matter of ‘No Stone Is Left Unturned’ as I mentioned before.

As I mention in this video blog is that the greatest shame is those that come to get the advice and help and then do nothing with it. Just remember that if you do not change anything, or do the work needed, then nothing changes. The key to real change is actually within you.

If you so need help with a particular health issue, or you just aren’t getting the right answers and care, then please book in a time to see me and let me be your guide to better health and getting your life back to normal.

ultrasound and pathology

Ultrasounds and blood tests have limited value for diagnosing some causes of period pain and menstrual irregularities

I know I have said this often, but it seems that every day I get another email saying that “I have period pain and I have been to the GP and done scans and bloods tests and he/she says that there is nothing wrong”

The problem is that there is something wrong and the first thing wrong is that someone was told that there is nothing wrong, when they have only had very basic testing done.

The second thing wrong is that most of these women are not being referred onto an appropriate specialist, which is what good sound ethical practice is. This is why some conditions like PCOS are taking up to 3 years to be properly diagnosed and conditions such as endometriosis are taking up to a decade to be properly diagnosed. It just should not happen.

I can’t begin to tell you how many women I have seen over my years in practice, that have been told that there is nothing wrong with them, or that the practitioner hasn’t found anything, when really all they have done is a basic scan and a few random blood tests. Then when these women are properly investigated we end up finding all manner of issues. Yet, these women were told that there is nothing wrong.

All I can keep telling people is that while ultrasounds can find some causes of gynaecological issues, there are many issues they cannot find. It also depends on the technician, or person scanning you too. I know that there are not that many specialised gynaecological radiologists and this is why many things do get missed. I have viewed scans that show abnormalities and the report says that everything is fine. This is why I will only ever read scans and not just reports.

Gynaecological issues such as endometriosis cannot be diagnosed by ultrasound and can only be diagnosed by surgical intervention, in the form of a laparoscopy and with histology. Then, as I have said many times too, it all depends on the surgeon you have seen. If your surgeon isn’t an advanced trained laparoscopic surgeon there is a very good chance you may not have been investigated properly. I have mentioned this in many of my previous posts.

Even some cysts, PCOS, polyps and other masses can be missed on scans and let’s not even talk about blood tests. Sure, some hormones levels can be a pointer to a certain issue, but they are not an accurate diagnostic. To be completely honest, many women with serious gynaecological issues will have normal hormonal levels and have completely normal blood results. This can even happen in certain cancers and why some of the cancer markers are now not being used as definitive diagnosis.

I can tell everyone that I have seen many gynaecological issues being missed, and women being dismissed over the years, and it still happens on a daily basis. If you have menstrual issues, or are in pain daily, or just with your menstrual cycle, and you are being told everything is fine, then you need to get a second opinion and a referral to a good  specialist.

If you would like help with a women’s health condition, please give my friendly staff a call and find out how I may be able to assist you.

Regards

Andrew Orr

-No Stone Left Unturned

-Master of Women’s Health Medicine

-Women’s Health Expert

 

 

 

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Von Willebrand Disease

Von Willebrand Disease (VWD) is the most common inherited bleeding disorder diagnosed in women with heavy abnormal uterine bleeding, due to a coagulation defect.

Women with this disease may also have some tendency to bruising/nosebleeds in childhood but it will be when they get there first period that deficiency in von Willebrand factor – an essential protein required for both normal platelet function and as a co-factor to Factor VIII in the clotting cascade, most frequently presents.

A parent with VWD has a 50 per cent chance of passing the affected gene on to each child. VWD can affect both men and women. Sometimes genes mutate or change and can skip generations. Sometimes a child may have VWD but there was no family history of the condition. This means that VWD can occur in any family.

Women with this condition will present with excessive or prolonged bleeding with all other investigations normal (e.g. structural abnormalities are excluded). The diagnosis of Von Willebrand’s disease is by means of a coagulation screen and vWF antigen testing.

History behind Von Willebrand’s disease

Von Willebrand’s disease is named after Dr Erik Adolf von Willebrand, a Finnish paediatrician. In 1924, a 5-year-old girl was brought to the hospital in Helsinki where von Willebrand worked. He diagnosed her with a bleedingdisorder which he recognised was different from the haemophilia which was initially suspected. He subsequently assessed 66 members of her family and in 1926 first described the disease and its inheritance.

Von Willebrand’s disease is the commonest coagulation defect in humans-but is also seen in dogs (notably Doberman Pinschers),and more rarely in swine, cattle, horses, and cats.

Symptoms of Von Willebrand’s Disease

Many people with the disease do not have any symptoms. Those who do may find that they:

  • have lots of nosebleeds
  • bruise easily
  • have heavy menstrual (period) flow
  • bleed excessively from the mouth.
  • The presence in your menstrual flow of blood clots greater than 1 inch (2.5 centimeters) in diameter
  • The need to change your menstrual pad or tampon more often than hourly
  • The need to use double sanitary protection to control menstrual flow
  • Symptoms of anemia, including tiredness, fatigue or shortness of breath

There are three main types of VWD:

  • Type 1
  • Type 2
  • Type 3.

These can be broken down into further categories. The most common are types 2A and 2B.

Complications of von Willebrand disease may include:

  • Anaemia– Women who experience heavy menstrual bleeding are more at risk of iron deficiency anaemia.
  • Swelling and pain-If abnormal bleeding occurs in the joints or soft tissue, swelling and severe pain can result.
  • Death from bleeding –Rarely, someone with Von Willebrand’s Disease may experience uncontrolled bleeding that can be life-threatening and needs emergency medical attention.

There are hormones and other medications that can help with the acute bleeding that can present with VWD.

Although Von Willebrand’s Disease is the most common pathology, other bleeding disorders including thrombocytopaenia and haemophilias should be considered. Consultation with a haematologist should be considered when a coagulation defect is diagnosed, or when the history suggests a clotting disorder. The main aim is to to manage the underlying disease but to also help with effective menstrual regulation (usually with combined contraceptive pills).

Regards

Andrew Orr

-Women’s and Men’s Health Advocate

-No Stone Left Unturned

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Asking the Right Questions about Period Pain & Gynaecological Issues.

All to often women have gynaecological disease states “missed” and “dismissed” because their healthcare practitioner was not asking the right questions about period pain and gynaecological issues.

I didn’t know how I was going to start this post, or begin to talk about what I am about to talk about, other than I got some inspiration after a text message, and a phone call later on,  from my eldest daughter some time ago.

I will talk about that soon. But let’s talk about some of the phone calls and messages I get from people every day and how some of these messages gives me a heads up into what may be going on for these people and then getting them in for a proper consult and the right help.

Every day I get phone calls, emails, Facebook messages etc, from women (young and older) who are experiencing period pain, menstrual issues, and other related symptoms and nearly all of them have the same story.

“I have been to the GP and I have had blood tests and scans and they say that there is nothing wrong”. This is what I hear all so often.

It happens so often and it is like there is a script written for these poor women who just want to get out of pain and get some sort of normal life back. I get so annoyed when I hear this repetitious line. Not at the people telling me, but knowing that these poor women really haven’t been investigated properly at all and probably won’t be unless they come and see me.

I remember I got a text that I really wasn’t expecting, as it was from my eldest daughter.

It read “Hey Dad, is endometriosis hereditary?”

To which I replied “Yes it can be, why?”

I anxiously awaited the next reply and thankfully she was asking on behalf of a friend. But this poor friend had been experiencing really bad period pain and had basically had blood tests and scans and been told that everything was normal.

Apparently one of the scans showed some fluid in the Pouch of Douglas (POD), which can actually be a sign of endometriosis and inflammation. Worse still, this poor girl’s mother actually has endometriosis and nobody is putting two and two together and asking the question “I wonder if the daughter may have it too?”

Well, there is more than a good chance that she does have it and thank goodness my daughter actually knows the signs and knows that scans and bloods tests cannot diagnose many gynaecological issues, especially endometriosis.

Lucky my daughter also knows that you need to see an advanced trained laparoscopic surgeon who specialises in the excision of endometriosis and has done years of extra surgical training to specialise in these disease states. The good thing is that she knows that you cannot just see a regular gynaecologist to get this done.

But, not everyone is as fortunate as my daughter to know this and help her friend to come and see me to help her see my surgeon and then I can help her with management of the disease, if found (which is highly likely) after the surgery.

The other good thing is that my daughter knows there is no cure for endometriosis and that surgery isn’t going to fix the problem either. She knows it will help, and is needed, but after the surgery, the management post surgery is the most important, for disease states like endometriosis.

Unfortunately not many people know this and don’t have the disease managed properly post surgery. Women with endometriosis and some other inflammatory gynaecological issues will need a team approach, or a multimodality approach  post surgery, because even with the best medical intervention, it really isn’t enough and why so many women have the disease and symptoms return, or may still be in pain and have other recurring symptoms.

There is never a one treatment, one pill, fix all approach to disease states such and endometriosis. This is where so many go wrong.

One of the main issues for women can be that they really have not seen the right healthcare professions, especially the right surgeon and unfortunately this is many of the women that have had surgical intervention. This one is so important.

Whenever I get messages from women in pain, or I consult with women who have period pain and all the other associated symptoms, there are some standard questions I ask, to know if they have been given the right information, been diagnosed properly, or seen the right surgeon.

  1. I always ask “what tests have you had done?” – I know that if they have only had blood tests and some scans, then these women have not been investigated, or diagnosed properly.
  2. Then I usually ask “Have you just seen your GP, or have you seen a specialist?”– Most of the time many women have not been referred onto a specialist and have only just been seen to by a GP. This is one of the biggest issues women face when it comes to gynaecological conditions. GP’s are just general practitioners. They are not gynaecologists and definitely not advanced trained laparoscopic surgeons. The best thing any woman can do is ask for a referral to a specialist and a good GP should know to do this anyway. This is one of the biggest reasons that women from all over the world take up to a decade to be diagnosed with disease states such as endometriosis. On a daily basis women are missed and dismissed and told there is nothing wrong, go on the pill, or that they have some inflammatory bowel condition, when in fact they have endometriosis, or adenomyosis, or some inflammatory gynaecological issue. Btw, this isn’t to put GP’s down, unfortunately this is what happens to so many women and why it often takes up to a decade for women to be diagnosed with diseases such as endometriosis. This is an unfortunate fact and it needs to change.
  3. Then I ask “Have you had a laparoscopy?”– One of the most common responses is “What is a laparoscopy?” and that way I know they haven’t had one done. A laparoscopy is the gold standard investigation of the pelvis and the only way to properly diagnose disease states and causes of period pain, such as endometriosis.
  4. If the woman has had surgery I then ask “was the surgery done publically, or privately?” – This will tell me a few things. It will let me know if it was just done be a public surgeon, who probably isn’t an advanced trained laparoscopic surgeon. The issue is that there really aren’t that many advanced trained laparoscopic surgeons that do public work, and even if you strike the jackpot and do happen to get one, there is a good chance they are only in a teaching role to instruct a trainee surgeon to do the surgery anyway. But mostly women do not get an advanced trained laparoscopic surgeon in the public system. It is sad, but true unfortunately. Many times the first surgery in the public sector is purely investigative too and no excision (disease removal) is performed. This means that the woman has to come back for further surgery, or surgeries.
  5. If they the woman has had surgery done previously by a private specialist then I usually ask “Who was the surgeon that did your investigation and surgical procedure?” – Sometimes I can ask if the surgeon was an advanced trained laparoscopic surgeon and the patient usually will respond to not knowing, or even know what I was talking about. That usually gives me a clue that it most probably wasn’t, but then I can go and check the specialists qualifications online and see if they are, or most probably aren’t, an advanced trained laparoscopic surgeon who has done years of extra specialised surgical training.

All those 5 questions can tell me much about what some of these poor women have had done, or haven’t had done, and then I can formulate an appropriate treatment plan and management for these women moving forward.

It is always hard explaining to the ones that have had surgery before that they haven’t seen the right surgeon and that they are going to need further surgery. The hardest thing for me is seeing women on support pages about to have their first surgery and I always worry that they aren’t seeing the right surgeon and if they don’t, there is a good chance that they are still going to be going through the same issues, over and over again, until they find the right person to help them.

If only I could see all these women before they did anything, so that they can be given the right information and the facts and be managed properly.

The good thing is that when I do get to see women who chose to see me, I can explain to them the facts and the right information and then why and how with a proper surgeon, that it can make a huge difference to how they are feeling and their recovery and management post surgery.

I can also explain how surgery really is necessary, but is only a small part of their overall treatment and management of their disease moving forward. I can also explain the facts around their disease moving forward too and make sure that women under my care are given the right information, the right investigations and right management going forward.

This is why my initial consultations take about an hour and a half and we go over everything from their health history, medical history, hereditary issues, diet, lifestyle, surgical intervention, medications, natural medicines, blood tests, scans, investigations, sleep, sexual health, libido and everything that a woman needs to know about her particular issues.

It is also about listening to a woman’s concerns and complaints and really hearing what she has to say and is experiencing.

Then I formulate a treatment plan and management and 20 page report of findings for them for what we are going to be doing to help them moving forward.

I also give them a step by step treatment plan of treatments and medicines etc they will need too. That is why my motto is “No Stone Left Unturned”, because there is no stone left unturned and I also make sure they see the right people (surgeons and anyone else that they may need to see).

If there are things that I can’t do (surgery etc), I make sure that my patients only see the best people, in my trusted network,  and then I can help manage their disease state alongside other specialists and medical interventions.

I wish I could see every woman before they went for any investigation, or surgery, so I can point them in the right direction and help them manage their gynaecological condition properly.

This is why I am so passionate about doing my posts on social media, or giving time for charity events to talk about women’s health issues and gynaecological issues such as endometriosis, adenomyosis and PCOS.

It is why I do healthcare practitioner education and seminars to help educate them better too, so that they can help their patients better and not miss and dismiss them.

I just hope that I can help those who have not been heard and that have been missed and dismissed. I also hope we can get people to listen to the things I have presented above and also help women get a voice, be heard and get government listening and get more education to younger women too.

Lastly, I cannot say it often enough….. Period Pain “IS NOT” normal and if you, or your daughter, or your sister, or your mother, or cousin, your best friend, or anyone you know has period pain, especially bad period pain and other symptoms, please, please, do not tell them that this is normal.

Period Pain is not normal and women who are experiencing period pain need to see someone who specialises in women’s health and gynaecological conditions, so that they can be investigated properly and have their issues managed properly too.

If you do need assistance with a women’s health issue, you can make a booking to have a consultation with me. Please call my friendly staff to find out more.

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Care Advocate

-The Endometriosis Experts

-The Women’s Health Experts

What Affects a Menstrual Cycle Part 2 Common Gynaecological Factors

What Affects a Menstrual Cycle – Part 2 (Common Gynaecological Factors)

There are many things that can cause disturbances to a woman’s menstrual cycle and on my previous post I discussed how Non-Gynaecological factors, such as diet, lifestyle etc, can be contributing.

In this post I will discuss some of the common gynaecological conditions that can cause problems with women’s menstrual cycles.

The sad thing is that many of these are often overlooked and often masked by putting women on the contraception pill. The other issue is that many are led to believe that the pill is the answer to their issues, when sadly it isn’t.

Many of these common gynaecological conditions continue to become worse while having their symptoms masked and exacerbated by these hormones.

Even more disturbing is that many women are not heard when speaking about menstrual issues, menstrual pain and other factors that do in fact interfere with their daily life on both a physical and emotional level.

Lets look at the common gynaecological factors that can affect a woman’s cycle.

  1. Endometriosis – is one of the most common causes of period pain and it caused by abnormal growth of endometrial cells both inside the uterus and outside the uterine lining. The exact cause is not known.While period pain, clotting, ovulation pain, pain with sex, pain on bowel movement, IBS like symptoms etc are commonly talked about, many women with endometriosis are asymptomatic and would not even know they had it.It is commonly missed, misdiagnosed and overlooked by healthcare practitioners and is why it often takes up to 10 years for the definitive diagnosis to be made. There is no cure and now it is thought that genetic factors and parental mode of inheritance is a predominant part of this disease. We do know that estrogens drive the disease and make it worse also.

    Endometriosis can only be diagnosed by surgical intervention. For more information please read my posts on endometriosis and also visit the Endometriosis Australia website.

  2. PCO/PCOS – Polycystic Ovaries/Polycystic Ovarian Syndrome is one of the most common caused of menstrual cycle irregularities, or ceasing of the menstrual cycle.It is mainly caused by insulin resistance and it also runs in families. There are two types of presentation with this condition. One is just having the cysts on the ovaries and the other is just the syndrome without the cysts.These days it is common lobbed under the one condition called PCOS.Along with menstrual cycle disturbances, it can also cause mood swings, hair growth/hair loss, acne, ovulation pain, infertility, anovulation, weight gain/weight loss, pot belly, fluid retention and much more.

    Diet and lifestyle changes are the number one treatment for this condition. Scans can pick this condition up, but can also miss it too.

    It can be diagnosed via surgical intervention and sometimes-extreme forms of this do need surgical intervention known as “Ovarian Drilling”

  3. Fibroids – Also known as myomas are benign growths that can occur inside and outside the uterus. Up to 40% of women over 40 years old have fibroids.They can cause problems with irregular uterine bleeding, heavy long bleeding, bleeding in between cycles, anaemia, pain with sex, problems with urinating and back pain.They can also cause infertility and miscarriage.There are 3 types of fibroids (intramural, submucosal & subserosal). They are thought to be caused by excess estrogens and problems in hormone metabolism.

    They can be removed surgically and some small ones embolised.

  4. Polyps – Are benign overgrowths, or bulges, of the normal tissue lining the uterus into the uterine cavity.They can cause irregular bleeding, heavy bleeding, bleeding after intercourse and infertility. Some women have not symptoms at all.Polyps may also be found in the uterine cervix. Polyps are usually attached to the underlying tissue by a base or stalk, and they vary in size.They can basically act like an IUD and stop implantation and therefore need to be removed in order for a woman to fall pregnant.

    Polyps only rarely contain cancerous cells

  5. Adenomyosis– Is very similar to endometriosis by the fact that it causes pain, irregular bleeding, heavy bleeding, bloating, lower abdomen pain and can affect the day to day functioning of woman all over this world.Adenomyosis growth penetrates deeply into the uterine lining and also inflames the nerves inside the lining. It cannot be seen visually and some special high contrast scans and MRI can pick it up, but not always.Usually a biopsy is needed to diagnose it. Medically the only way to properly get rid of Adenomyosis is via a hysterectomy.In the meantime, mostly anti-inflammatories, some hormones and other forms of pain management are given to provide symptomatic relief.
  6. Thrush– Vaginal thrush is a common infection caused by an overgrowth of Candida albicans yeast.This yeast lives naturally in the bowel and in small numbers in the vagina. It is mostly harmless, but symptoms can develop if yeast numbers increase.Symptoms you may experience if you develop vaginal thrush include vaginal discomfort – itching or burning, a thick, white discharge with a ‘cottage cheese’ appearance and yeasty smell, redness or swelling of the vagina or vulva, stinging or burning while urinating or during sex, splits in the genital skin that can cause bleeding and irritation.The condition is mainly treated with antifungal creams, pessaries and probiotics.
  7. Cancers – In 2008, a total of 4,534 new gynaecological cancers were diagnosed in Australia; this equates to an average of 12 females being diagnosed with this disease every day.On average 4 females in Australia die each day from a gynaecological cancer each day.The most commonly diagnosed gynaecological cancers are uterine cancer, ovarian cancer, cervical cancer, vulval cancer, cancers of other female organ and placenta and vaginal cancer.All can cause irregular bleeding, but some may not present with any symptoms at all.

    Proper diagnosis and early intervention is the key to any gynaecological cancers. For more information on diagnosis, symptoms and treatment please refer to the cancer council website.

There are other conditions that I haven’t discussed because of focusing on the main gynaecological conditions that can affect a woman’s cycle. I haven’t gone into the treatments of these disease states and will go into this at a later date.

What I will say it that early intervention is the key to any disease state in the body and seeing the right people is paramount too. Please know that many of these disease states will require a multimodality approach and please remember that there is always help out there.

Never put up with period pain, or menstrual irregularities, or be told the symptoms many women face daily are normal. The value of a second, or third, or tenth opinion is crucial for some people to get help and to find the right person to help.

Please remember that period pain IS NOT normal and neither are many of the menstrual irregularities that many of you face daily. There are always treatments and help out there too.

Take care

Regards

Andrew Orr

-Leaving No Stone Left Unturned

-Women’s and Men’s Health Crusader