Consequences of PCOS

The Serious Health Complications Of Unmanaged PCOS

Just like endometriosis, there is a lot of the information about PCOS, but it is more about the 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 health complications of unmanaged PCOS.

There have been some big changes to the diagnosis of PCOS, but still it can often take up to 3 years or more to get a proper diagnosis. While it may not take as long as endometriosis to be diagnosed, it still means that many women are being missed and dismissed in those year before they are finally diagnosed.

Like Endometriosis, some women with PCOS are never diagnosed and some women do not have any symptoms and can have very regular cycles etc. Women can have PCOS and endometriosis together, alongside other issues such as adenomyosis as well.

There are serious health consequences with unmanaged PCOS

The main thing I am trying to bring to everyone’s attention is that it doesn’t matter what disease you have, if it is left unmanaged, or not managed properly, it can have some pretty serious consequences of ones fertility, and mental and physical health.

PCOS is not exception. While the symptoms of PCOS are not as bad as those suffered with endometriosis, or adenomyosis, women can still suffer in many other ways. The long-term consequences of unmanaged PCOS can be very serious and can also lead to early death (cardiovascular disease, stroke etc.) and also lead to certain cancers.

Risk factors

PCOS is thought to have a genetic component. People who have a mother or sister with PCOS are more likely to develop PCOS than someone whose relatives do not have the condition. This family link is the main risk factor.

Then there is the insulin resistance factor with PCOS as well. Insulin resistance is a primary driver of PCOS and there is now evidence to show that most, if not all, women with PCOS have insulin resistance by default. Again this appears to be through genetic or family links of someone having PCOS, or having diabetes in the family tree etc.

Excess insulin is thought to affect a woman’s ability to ovulate because of its effect on androgen production. Research has shown that women with PCOS have low-grade inflammation that stimulates polycystic ovaries to produce androgens.

This is why diet and lifestyle interventions are so important in the overall management of PCOS. It is because these changes help with the insulin resistance.

There are other risk factors such as obesity, stress, nutritional deficiencies and sedentary lifestyle. Have a look at my page about more information on PCOS and risk factors etc (Click Here)

The Common Symptoms of PCOS

It is important to know what the common symptoms of PCOS are, so that women and healthcare professionals alike know what to look for.

The common symptoms of PCOS include:

  • irregular menses
  • excess androgen levels
  • acne, oily skin, and dandruff
  • excessive facial and body hair growth, known as Hirsutism
  • female pattern balding
  • skin tags
  • acanthosis nigricans, or dark patches of skin
  • sleep apnea
  • high stress levels
  • depression and anxiety
  • high blood pressure
  • infertility
  • Increased risk of miscarriage
  • decreased libido
  • high cholesterol and triglycerides
  • fatigue
  • insulin resistance
  • type 2 diabetes
  • pelvic pain
  • weight management difficulties including weight gain or difficulty losing weight

Early Intervention and management is crucial

The causes of PCOS are unclear, but early intervention, early diagnosis and early management, can help relieve symptoms and reduce the risk of complications. Anyone who may have symptoms of PCOS should see their healthcare provider, women’s healthcare specialist, or PCOS expert.

Coping with the symptoms of PCOS and managing the treatments can be demanding ands sometimes stressful. But, to then learn there can be serious complications and added risks to your health from PCOS not being managed properly can be distressing.

Be educated and get proper help

Just like any disease state just being aware, and being educated there are added risks is an important first step. Once you have the common symptoms of PCOS under control then you can turn your mind to thinking about ways to prevent further complications.  The good news is that many of the treatments and management strategies you will use for your PCOS will also help to prevent many of the serious complications. A qualified healthcare professional, or a healthcare practitioner who is an expert in PCOS should be managing anyone with PCOS. Nobody should be trying to manage PCOS on their own without some form of professional help.

The serious complications of PCOS

Women with PCOS are thought to be at higher risk of having future heart disease or stroke. They are also at higher risk of diabetes, endometrial cancer and other cancers too.

What are the serious complications of unmanaged PCOS?

Besides the risk factors already mentioned, the serious complications of unmanaged PCOS are as follows:

  • Weight gain or obesity
  • Prediabetes
  • Type 2 diabetes
  • Cardiovascular disease
  • Metabolic syndrome (generally having at least two of high blood pressure, high cholesterol, obesity, high fasting blood glucose)
  • Endometrial cancer
  • Other cancers (breast, ovarian)
  • Sleep apnoea
  • Inflammation of the liver
  • Infertility
  • Increased Pregnancy induced hypertension and pre-eclampsia
  • Increased gestational diabetes
  • Increased risk of stroke
  • Increased risk of sudden death
  • Atherosclerosis
  • Psychological disorders
  • Mood disorders (anxiety, depression)

What you can do

If you are worried about the serious complications of unmanaged PCOS it is helpful to:

  • Get your symptoms of PCOS under control as a first step
  • Discuss any concerns with your healthcare practitioner, or women’s health/PCOS expert.
  • Learn about and understand your risks
  • Learn that early intervention and early healthcare management is the key to assisting any disease state.
  • Have your blood pressure, blood glucose and cholesterol checked regularly
  • Seek guidance and support to help with weight management and dietary and lifestyle management.
  • Remember that all body types can have PCOS, not just those who are overweight.
  • Do not try to manage the symptoms of PCOS on your own.

Final word

If you do need assistance with PCOS and would like my help, please call my friendly staff and found out how I may be able to assist you. There are options for online consultations and consultations in person.

As mentioned before the key to any disease is early intervention and early healthcare management and you taking the first steps to get the help you need. PCOS also needs a multimodality approach. There are many facets to it. Don’t put off your health. Just pick up the phone and make that appointment today. There can be some very serious consequences if you do, especially for some conditions such and PCOS.

Regards

Andrew Orr

-No Stone Left Unturned

-Master of Women’s Health Medicines

-The PCOS Experts

References
  1. Ehrmann D et al. Prevalence and predictors of the metabolic syndrome in women with polycystic ovary syndrome. J Clin Endocrinol Metab. 2006 Jan;91(1):48-53
  2. Meyer C et al. Overweight women with polycystic ovary syndrome have evidence of subclinical cardiovascular disease. J Clin Endocrinol Metab. 2005 Oct;90(10):5711-6
  3. McCartney CR, Marshall JC. Polycystic Ovary Syndrome. N Engl J Med 2016;375:54-64
  4. Hull MG. Epidemiology of infertility and polycystic ovarian disease: endocrinological and demographic studies. Gynecol Endocrinol. 1987;1:235–245. [PubMed] [Google Scholar]
  5. Balen AH, Conway GS, Kaltsas G, et al. Polycystic ovary syndrome: the spectrum of the disorder in 1741 patients. Hum Reprod. 1995;10:2107–2111. [PubMed] [Google Scholar]
  6. Tian L, Shen H, Lu Q, Norman RJ, Wang J. Insulin resistance increases the risk of spontaneous abortion after assisted reproduction technology treatment. J Clin Endocrinol Metab. 2007;92(4):1430–1433. [PubMed] [Google Scholar]
  7. Jungheim ES, Lanzendorf SE, Odem RR, Moley KH, Chang AS, Ratts VS. Morbid obesity is associated with lower clinical pregnancy rates after in vitro fertilization in women with polycystic ovary syndrome. Fertil Steril. 2009;92(1):256–261. [PMC free article] [PubMed] [Google Scholar]
  8. Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome. Fertil Steril. 2004;81(1):19–25. [PubMed] [Google Scholar]
  9. Palomba S, de Wilde MA, Falbo A, Koster MPH, La Sala GB, Fauser CJM. Pregnancy complications in women with polycystic ovary syndrome: new clinical and pathophysiological insights. Hum Reprod Update. 2015 Jun 27;:dmv029. [PubMed] [Google Scholar]
  10. Anderson SA, Barry JA, Hardiman PJ. Risk of coronary heart disease and risk of stroke in women with polycystic ovary syndrome: a systematic review and meta-analysis. Int J Cardiol. 2014;176(2):486–487. [PubMed] [Google Scholar]
  11. Hardiman P, Pillay OC, Atiomo W. Polycystic ovary syndrome and endometrial carcinoma. Lancet. 2003;361(9371):1810–1812. [PubMed] [Google Scholar]
  12. Genazzani AR, Gadducci A, Gambacciani M. Controversial issues in climacteric medicine II. Hormone replacement therapy and cancer. International Menopause Society Expert Workshop. Climacteric. 2001;4(3):181–193. [PubMed] [Google Scholar]
  13. Barry JA, Azizia MM, Hardiman PJ. Risk of endometrial, ovarian and breast cancer in women with polycystic ovary syndrome: a systematic review and meta-analysis. Hum Reprod Update. 2014;20(5):748–758. [PMC free article] [PubMed] [Google Scholar]
  14. Broekmans FJ, Knauff EAH, Valkenburg O, Laven JS, Eijkemans MJ, Fauser BCJM. PCOS according to the Rotterdam consensus criteria: change in prevalence among WHO-II anovulation and association with metabolic factors. BJOG. 2006;113(10):1210–1217. [PubMed] [Google Scholar]
  15. Haoula Z, Salman M, Atiomo W. Evaluating the association between endometrial cancer and polycystic ovary syndrome. Hum Reprod. 2012;27(5):1327–1331. [PubMed] [Google Scholar]
  16. Chittenden BG, Fullerton G, Maheshwari A, Bhattacharya S. Polycystic ovary syndrome and the risk of gynaecological cancer: a systematic review. Reprod Biomed Online. 2009;19(3):398–405. [PubMed] [Google Scholar]
  17. Giovannucci E. Metabolic syndrome, hyperinsulinemia, and colon cancer: a review. Am J Clin Nutr. 2007;86(3):s836–s842. [PubMed] [Google Scholar]
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.

 

Kath Mazzella interview

Gynaecological Cancers & Gynaecological Awareness with Kath Mazzella

I’m sharing a video link up with Kath Mazzella (OAM) about her journey with being a gynaecological cancer survivor and her passion for now helping women with better understanding of gynaecological, sexual and mental health conditions.
 
Kath Mazzella OAM is a Gynaecological cancer survivor. Kath is now so passionate about creating change in relation to the level of awareness of Gynaecological, Sexual and related Mental Health challenges and to break down the barriers and stigmas associated.
After her gynaecological cancer surgery Kath discovered how little women knew and talked about conditions “down there”, and how many women were suffering in silence. This empowered Kath to go on a journey … a journey that her partner Tony had no choice initially but to go on with her. Now he has stepped up to stand beside her and promote this very worthwhile and necessary message, extending it beyond just the women, but also to the men that surround their worlds. After all, when one woman suffers, all those in her world suffer with her.
Kath and Tony together are powerful advocates for women challenged by gynaecological, sexual and related mental health conditions, personally inspiring women (and a few men also), arguing for institutional and social change that delivers better awareness, prevention, treatment and support.
Kath and Tony are inspirational public speakers and Kath is the founder of the International Gynaecological Awareness Day.
Most recently, Kath was awarded the Jeannie Ferris Cancer Australia Gynaecological Cancers Award, which she handed to Tony upon acceptance, stating that he deserved the award for his patience in supporting her through all the years of her campaigning.
 
In 2012, Kath received the prestigious WA Senior of the Year Award and the Beyond Blue category award, finally having the link between Mental Health and Gynaecological and Sexual health recognised.
 
In 2009 Kath was awarded an Order of Australia Medal for her service of the community through raising the profile of Gynaecological health; was inducted into the 100 Women WA Hall of Fame and also was an inductee to the Hall of Fame – Our Bodies Ourselves Women’s Health Heroes, Boston, US. Kath was shortlisted for the Centre for Women in Leadership Award; and Most Inspiring Woman of the Year – Momentum Women’s Forum. Kath was also presented with the Zonta International “Woman of Achievement Award” for Western Australia and received an Executive Women’s Forum Woman of the Year award, both in 2005.
 
Have a listen to our video link up and don’t forget to get behind the gynaecological awareness day on September 10.
The No Uterus No Comment speech needs to stop 1

Why the “No Uterus – No Comment” speech on forums needs to stop!

In this latest video post I talk about why the “No Uterus-No Comment” speech on forums needs to stop.

As someone who is a Master of Women’s Health Medicine, a Women’s Health Expert, and work tirelessly to be a voice for women’s health issues (And a Male), I have a very frank and blunt discussion about some of the male bashing hate speech comments that get thrown around various forums.

Have a listen to the latest video blog on this very important topic.

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)

 

10 Common Mistake seen with

10 Common Mistakes Seen With Endometriosis

1 in 10 women are diagnosed with endometriosis and it often takes up to 10 years to be diagnosed. The number 10 seems to be a recurring theme. So, for this post I am going to talk about the 10 common mistakes seen with endometriosis. Hopefully this helps to create some more awareness about this horrible disease and helps those who are suffering, or have not been diagnosed yet.

Below are the ten common mistakes I see with endometriosis.

1. Believing surgery has cured their disease

Many people with endometriosis are often led to believe, or have been told, that once they have surgery that their endometriosis is cured.

There is no cure for endometriosis, so surgery is not a cure. Hysterectomy is not a cure either.

All surgery does is deal with the expressed disease and that is it. It does not prevent further regrowth of the microscopic implants of endometriosis that are waiting to express and develop into lesions again. While surgery is a very valid medical option to address acute pain caused by the disease, it is not a cure. It only helps with symptomatic relief.

2. Not doing follow-up management of the disease after surgery

We know that despite the best medical interventions that women with endometriosis often will still be in pain, or have further expression and regrowth of the disease.

As mentioned previously, surgery is a valid treatment option for acute pain and for when hormones and medications are not working. But, from my experience I do see many have the surgery and then are not doing any ongoing management, except for pain medications. This isn’t necessarily the person’s own fault either. Many are also poorly managed post surgery and are not aware that they will need ongoing management of their disease state. As mentioned, many are literally just unaware that their disease can, and will grow back without ongoing support and healthcare management. It is crucial that all women with endometriosis receive ongoing care and management of their disease from an appropriately trained endometriosis expert.

3. Endometriosis care requires a multimodality/team approach

There is no one single medicine, or modality, that can effectively deal with endometriosis and this is why a multimodality/team approach is needed.

Surgery is just one treatment approach, which is also needed to definitively diagnose the disease, and then for when the disease is acute and nothing else is working. But surgery alone is not adequate to deal with the disease as a stand alone therapy.

Endometriosis is estrogen driven so there does need to be some form of progesterone support to help suppress further expression of the disease. This can be in varying forms and something I will discuss in another post.

There also need to be support of the microbiome and working on the microcirculation to the pelvic area and reproductive organs. There also need to be ongoing emotional support and care such as counselling, or psychology

There also needs to be dietary changes (low inflammatory based diet), physiotherapy, exercise, complementary medicines, acupuncture, nutritional medicine other modalities. All of this can be done alongside ongoing medications and medical support. Each individual with the disease has different symptoms and will require different multimodality care and support, based on their individual needs.

4. Not seeing the right surgeon

I know I always talk about it, but this is because many who are suffering from endometriosis and the associated symptoms, just have not seen the right person in the first place.

In every profession there is good and bad. There are those who specialise in a certain area, and there are those who don’t. The same goes for medicine and the same goes for surgeons too.

When needing a diagnosis, or surgical intervention for endometriosis, it is imperative to see an advanced trained laparoscopic surgeon who specialises in the excision of endometriosis. This way you also know that this surgeon is not only advanced trained and highly skilled, but also specialises in endometriosis and every aspect of it.

Not all gynaecologists and surgeons specialise in endometriosis and some dabble in it and are not highly skilled in the actual surgical requirements to effectively excise the disease properly. Some surgeons do not even do excision surgery and tend to just to ablation only. This is not how you surgical deal with endometriosis.

These advanced trained surgeons also have to do a certain number of surgeries per year to attain the status of being advanced trained. Someone who does a few surgeries here and there is definitely not advanced trained. These advanced trained surgeons also do extra years of surgical training and are the best of the best and why anyone who is suspected of having endometriosis, or has endometriosis need to see these surgeons only.

Too many women are under-serviced surgical, by poorly skilled surgeons, who are not specialised in endometriosis and who are not advanced trained and this is where all the problems start. It can also lead to making the patient worse and only leads to further suffering and years of pain as a result. It also means that the advanced trained surgeons then have to fix up the mess these other surgeons created.

The hard thing is some women are limited by demographic and location when it comes to being able to see an advanced trained surgeon. Unfortunately most of them do private work, and any in the public system have long waiting lists and may only do one day a week public surgical lists. You may not even get to see them unless you see them privately first and they put you on there public waiting list.

5. Not seeking help and intervention early enough

There is two parts to this that need attention and need discussion. We know that it often takes up to 10 years (or more) to be diagnosed with endometriosis. This means that a hell of a lot of women are being missed and dismissed by GP’s, allied healthcare practitioners, complementary medicine practitioners, specialists and so forth. This isn’t meant to be negative, or an attack on any one profession. These are the facts and something that cannot be ignored. It also needs to be discussed.

Then we also have parents waiting way too long to seek help for daughters, using the wait and see if it will go away approach. I see this often and I am often getting asked if a parent should just wait and see if their daughters pain will magically disappear. I often have to point out that if my daughter was passing out, or laying on a bathroom floor crying with pain, I would not be waiting to see if it was going to go away. Early intervention is the key to any disease. The wait and see approach is often the reason many women end up with years of fertility issues and years of pain, and other associated symptoms of endometriosis. The longer a disease is left to spread, the more damage it does, and the harder it is to treat.

Teenagers are not too young to have endometriosis and we are now seeing young girls as young as 5 years old having endometriosis found.

The other issue we see if women who know that they have the disease, putting off seeing someone for fear of more surgery, or fear of being dismissed. Again, this only leads to further complications and disease growth and thing being harder to treat.

Once a woman has endometriosis, the reality is that she may need further surgical intervention. But, it is needed to help with symptomatic relief and reduce inflammatory response in the body. The other thing is that by going and seeing someone who specialises in endometriosis, they are trained to help you manage your disease properly.

There may also be some non-surgical options that can be used and help with symptoms and disease management as well. But, you need to go in the first place, to get the help you need. Please do not put off getting your health and disease state managed properly. If you are in a bad place with your disease, make sure you get on that phone and book yourself in with someone who specialises in endometriosis.

6. Trying to manage the disease by yourself

I’ve covered this a bit in the last statement, but so often I see women trying to manage endometriosis themselves. This only leads to a vicious cycle that keeps going around and around and nothing good ever comes of it. The disease does not get managed properly, the symptoms get worse and then it all becomes way harder to effectively treat and manage.

Sometimes if things are left too long, there can be permanent damage that is not repairable. This is definitely why people should not try to manage their own disease and symptoms themselves.

If your disease state and associated symptoms are out of control and you aren’t being managed properly, please get on that phone and book in to see someone as soon as possible. Do not put it off any longer. Now is the time to do something about it, not tomorrow, or next year.

7. Getting medical advice from support groups

I am a big advocator of anyone with a long-term health issue receiving emotional and physical support. It is a must. But, it needs to be via trained professionals who are specialised to help you properly.

While I am also a big fan of support groups, I am not a fan of non-medically trained, non-healthcare people giving healthcare and medical advice to people within these groups. I love seeing the emotional support in these groups, but I don’t love it when I see people getting medical advice about medications, hormones and medical procedures. This is dangerous. I’ve even seen advice given on how to take ones own IUD out and this is when I have to speak out.

By getting medication advice, medical advice, surgical advice and any other healthcare advice from someone who is not appropriately trained, you are actually putting yourself in great danger. Please do not take the advice of anyone who is not a healthcare practitioner, or a specialist in endometriosis. Sure, get the emotional support from like minded people, and people who understand what you are going through, but leave it there.

The other thing is just being careful of not getting caught up in some of the negativity of some groups, where you also then start to focus and become your disease. You are not your disease and to move forward you need proper healthcare and lots of positivity.

8. Letting pain and associated symptoms get out of hand

Some of this I’ve also spoken about, but this is one thing I see often as well. Many people are at a point of self-managing with pain medications that are not working effectively any longer. This then leads to increased reliance and dependence of pain medications and it can also lead to increase pain and associated symptoms.

I have talked about pain medications and the withdrawal affects in previous posts. I have also talked about how increased pain medication use can actually cause pain and lead to further inflammation in the body. I have also talked about the addiction of pain medications too. It is a catch 22 situation. (Click here to see previous posts mentioned)

The point I am trying to make here is that if your pain levels and associated symptoms are getting out of hand, then you need to do something about it. Please do not try and manage your pain and symptoms on your own. Increasing your medications can have detrimental effects on your body and long term health consequences.

If you have to increase your pain medications, it means something is drastically wrong and that your pain levels need urgent professional attention. Your endometriosis expert/specialist is trained to help you get your pain levels and associated symptoms managed properly.

There may also be something else going on that could be sinister and require urgent medical attention. Never presume that all your symptoms are related to your disease. Seeking proper medical health and ongoing management, could just save your life.

9. Buying into the label and letting your disease own you

Having a chronic health condition myself, I know all too well how easy it is to fall it the trap of buying into the label of the disease. I also know all too well by doing this, you are letting the disease own you.

I also understand how hard it is on the bad days, not to get down about everything and think that there is no help, and how unfair things are. Yep, I truly get it. But, I also know that the more one focuses on the negative, and constantly lives in the disease state, the harder it is to truly move forward and get better.

Our thoughts and being negative can exacerbate pain pathways and they can also disrupt the healing pathways as well. If you listen to people that have overcome and illness, or a disease, they will always tell you it was by getting the right help and being positive. Positive mental outlook is very underrated in healthcare and its healing effects.

This is why I sometimes mention about being careful in certain support groups, where the focus is constantly on the disease, the label, and the negative. It isn’t good for anyone when that is all you hear. You need support, but you need to surround yourself with positive people, see the right healthcare team and also remember that you are not your disease, and it does not own you.

10. Believing that there is no help out there

I know many people have had a hard time and some have really had a terrible journey getting to where they are now. It is one of the reasons I am so big on giving people the facts about this horrible disease and trying to help women get the proper help they need. It is also the reason I do what I do now.

Having lived with a chronic disease and having dealt with my share of really bad experiences, I know all too well what many of you have been through. I thoroughly get it and I understand on all levels.

While many people have been missed and dismissed and many have seen their fair share of terrible healthcare practitioners, I do need to point out that there are some very good ones also. Never let your last experience by carried over with you. Not all healthcare practitioners are bad. There are actually some amazing practitioners out there who are experts in endometriosis.

Like I have said before, in every profession there is good and bad and this is why it is important to do your homework. Don’t just go off a friend’s recommendation, or some recommendation from your mother. Do your homework and make sure the person you are seeing actually specialises in your disease. You also need to be realistic that you need a multimodality team approach, and that you may need to see a few practitioners within a network of specialists.

When you do find someone you think may fit the profile of a true endometriosis specialist, make sure when you see them that they take a full history, listen to all your concerns, give you appropriate care and advice and are empathetic in helping you move forward with appropriate care and health management.

The one thing I tell people is to not go in with a negative attitude based on previous bad experience either. This can then lead to further angst and anxiety and could get a good practitioner offside too. At the same time, while you need to not take your last experience with you, you do need to make sure the person you are seeing is right for you. It is all about balance and not judging each person you see as being the same.

But, if the person you do see has no idea, then don’t be scared to say “Thanks, but not thanks” and be on your merry way. There is no harm in getting multiple opinions and the honest truth is that is what you need to do. Never just take ones person’s advice and be done with it. Get a second, or third, or tenth opinion if you have too.

Last, but not least, if you are struggling and are at a point you believe there is nobody to help you, please remember there is always someone out there. Never give up hope about that. There are some amazing people out there who will know how to help you properly and get you the help and care you need. You just need to find them. There are endometriosis experts out there and when you find them, they will help you.

Final word

If you do need help and assistance with endometriosis, or need help getting diagnosed properly, please give my staff a call, or send an email, and find out how I may be able to assist you. I do consultations in person and online as well. There are some conditions with online consultations, but my staff will explain all this too you. You may also need to come and see me in person, so I can make sure you get all the appropriate investigations and testing done too. I also have a team of experts I work and refer to as well. I do see people from all over Australia, far and wide, and some from overseas as well.

Take care

Regards

Andrew Orr

-No Stone Left Unturned

-The Endometriosis Experts

 

doctor and patient

Finding Common Ground To Work With a Good Healthcare Practitioner

Finding a good healthcare practitioner can be hard. Many have already been jaded and been missed and dismissed by many. This then sets up the expectation that everyone you see, is going to be the same as the last.

The reality is that there are good practitioners out there and it is about finding some common ground, letting go of the past and moving forward with someone who really does want to help you.

Just be careful not to let the past experience with not so good healthcare practitioners be bought in with you when seeing a new healthcare practitioner. It can often then lead to more angst and boundaries and then leading to a good practitioner not being able to really help you.

I hope people can see the point I am trying to get at here. Not all healthcare practitioners are bad. Some are actually amazing and could really help you get your life back to normal again.

It is about working together for your greater health and to do that, there must be understanding on both parts. It is an individualised team approach.

Have a look at my video (below) on this issue.

Take care

Regards

Dr Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Advocate

-The Women’s Health Experts

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.

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Let’s Talk About Ovarian Cancer

Ovarian cancer often has no symptoms in the early stages. Later stages are associated with symptoms, but they can be non-specific, such as loss of appetite and weight loss.

Ovarian cancer often goes undetected until it has spread within the pelvis and stomach. At this late stage, ovarian cancer is more difficult to treat and can be fatal. This is why early intervention is something I am very big on and why we all need to not put things off when they present themselves.

Ovarian cancer is the 9th most common cancer diagnosed in Australian women.

Ovarian cancer is the 6th most common cause of cancer death in Australian women.

The present life expectancy of Australian women is 84 years. One in 77 women will be diagnosed with ovarian cancer before the age of 85.The risk of ovarian cancer increases with age. About 83% of all new cases of ovarian cancer diagnosed in 2005 were in women 50 years or older. The median age of first diagnosis is 64 years.

The five year survival rate for ovarian cancer is 45%.

Symptoms
Most women with ovarian cancer experience at least one symptom of the disease in the year prior to their diagnosis. The following can all be signs of ovarian cancer:

  • Abdominal bloating
  • Abdominal or back pain
  • Appetite loss or feeling full quickly
  • Changes in bowel habit
  • Urinary frequency or incontinence
  • Pain during intercourse
  • Menstrual irregularities
  • Unexplained weight loss or gain
  • Indigestion or heartburn

Why is bloating a sign of ovarian cancer?

Ascites (a build-up of fluid in the abdomen and a sign of advanced ovarian cancer) is probably the major cause of bloating in women with ovarian cancer. Therefore, waiting for bloating as a key ‘sign’ is too late and we want to encourage all women to ‘know your normal’ and if this changes, to seek medical help. This is why any changes in the body need to be looked into. Many may think that they are reacting to foods, or they have a gut issue etc, but it may actually be the signs of ovarian cancer. This is why proper investigations and proper differential diagnosis by a trained professional is so important.

Family history
While having a family history of ovarian cancer increases a woman’s risk of developing ovarian cancer, 90-95 per cent of all ovarian cancers occur in women who do not have a family history.

Key factors associated with increased risk include:

  • Multiple relatives on the same side of the family affected by breast cancer (male or female) or ovarian cancer
  • Younger age at cancer diagnosis in relatives
  • Relatives affected by both breast and ovarian cancer
  • Relatives affected with bilateral breast cancer
  • An increase in age
  • Inheriting a faulty gene (called a gene mutation) that increases the risk of ovarian cancer
  • Being Caucasian (white) and living in a Western country with a high standard of living having few or no full-term pregnancies
  • Starting your menstrual cycle early (before the age of 12) and beginning menopause after the age of 50
  • Taking hormone therapy (HT) after menopause. Some studies suggest this may increase your risk of developing ovarian cancer, but others don’t make this connection
  • Never having taken the contraceptive pill – the pill has been found to reduce the risk of cancer of the ovaries and uterus
  • Only five to 10 per cent of all ovarian cancers are associated with a family history. The risk of developing ovarian cancer increases with the number of affected first degree relatives (parents, siblings, children)
  • Ashkenazi Jewish ancestry.

Diagnosis for Ovarian Cancer

There is currently no evidence to support the use of any test, including pelvic examination, CA125 or other biomarkers, ultrasound (including transvaginal ultrasound), or a combination of tests, to screen for ovarian cancer. The only way to properly screen for it is through histology done at the time of laparoscopy.

While CA126 can be a diagnostic, it really has limited value and I have to let people know that it isn’t the best diagnostic at all. 50% of ovarian cancers will actually have a normal CA125 reading.

The cancer council’s guidelines are quite clear about this after numerous research studies show that CA125 has limited diagnostic value for Ovarian cancer. If markers and symptoms are suggestive of Ovarian Cancer, the only true diagnostic is Laparoscopy with histology to really get an accurate diagnosis.

Treatment for Ovarian Cancer

At such an advanced stage, the cancer is more difficult to cure. As ovarian cancer advances, cells from the original tumor can spread (metastasize) throughout the pelvic and abdominal regions and travel to other parts of the body. Cancer cells are carried through the body through lymph vessels and the bloodstream.

If a woman is suspected of having ovarian cancer, she should be referred to a gynaecological oncologist. Research shows survival for women with ovarian cancer is improved when their surgical care is directed by a gynaecological oncologist.

Treatment for ovarian cancer usually involves surgery and chemotherapy. It may also include radiotherapy.

Usually your healthcare practitioner, or GP, will generally arrange for initial tests and looks after your general health as well as coordinating with your specialists. Depending on your treatment you will be seen by several specialists, such as: medical oncologist, radiation oncologist, radiologist, gynaecological pathologist, cancer nurses and other health professionals such as a dietitian, physiotherapist, social worker and a counsellor.

With any condition that affects the body, we often get early warning signs and this is why early intervention and making sure you are investigated and management properly is so important.

Regards

Andrew Orr

-Women’s and Men’s Health crusader

-No Stone Left Unturned

-The Women’s Health Experts

01 Dr Andrew Orr