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Insights into Endometriosis

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

But, is education and awareness enough?

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

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

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

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

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

The important things that were talked about

  • Millions of women world-wide suffer this disease
  • Millions of suffers do have a wide range of symptoms that vary with each individual
  • Period Pain IS NOT Normal
  • There is no cure for endometriosis
  • Millions of women world-wide have been led to believe their symptoms are normal, when they aren’t
  • Women are being missed and dismissed daily and told to basically suck it up
  • Many women take more than 10 years to be diagnosed
  • GP’s and other healthcare people are missing the disease and also failing to refer on
  • Many women are misdiagnosed for other disease states such as IBS, gastro etc
  • When presenting for medical help, many women are told they just have a gastro virus, or it may be an ectopic pregnancy
  • Endometriosis affects the daily life of sufferers and their partners and family as well
  • Partners can be affected by watching their loved one go through this disease state
  • Intimacy and a happy healthy sex life can be hard for sufferers due to pain and associated symptoms
  • Many endometriosis sufferers have to take pain killers daily, just to get through their day
  • Endometriosis requires a laparoscopy to be diagnosed
  • Scans and blood tests cannot diagnose endometriosis
  • Women need a highly specialised surgeon when needing to have the disease diagnosed and cut out
  • Despite the best medical treatments available, women are still in pain daily
  • Many women will require multiple surgeries to deal with endometriosis
  • Despite multiple surgeries, women are still in pain and have all the associated symptoms of endometriosis.
  • Women will need hormones, pain medications, pain management and psychiatric help dealing to be able to deal with endometriosis
  • Often pain and associated symptoms are not managed well at all
  • Women who suffer endometriosis are holding down jobs and many people are unaware they are suffering this disease
  • Many women with endometriosis cannot hold down fulltime employment either
  • Women are not being told the facts about endometriosis
  • Many healthcare practitioner do not know the facts about endometriosis
  • Women of all shapes, sizes and colour have endometriosis
  • Endometriosis is just as common as many other well-known disease states, yet little is known about it.
  • Complementary medicines such as acupuncture and Chinese medicine may help women with endometriosis (although this was brushed over very quickly)
  • Genetics/hereditary links are now known to be a big part in the disease expression

Important things that were not talked about

  • Endometriosis pain and associated symptoms do not just happen around the menses
  • A significant portion of women with endometriosis are asymptomatic (meaning no symptoms) and are only diagnosed through needing to assess for other issues such as fertility investigations
  • Not all women with endometriosis will experience fertility issues
  • Pregnancy does not cure endometriosis
  • Hysterectomy does not cure endometriosis
  • Endometriosis is Estrogen driven and not caused by estrogen dominance
  • Progesterone in suppressive to the disease
  • Pain levels are not related to the extent of the disease
  • Teenagers are not too young to have endometriosis
  • Certain combined contraceptive Pills that contain estrogen, could be making the disease worse, or in fact helping mask and then drive the disease
  • The facts around endometriosis need to be standardised and more freely available
  • Despite the best medical treatment not working for some women, we need to educate about other alternatives, including complementary therapies
  • Women with endometriosis do need a multimodality (team) approach to manage their disease state and daily symptoms
  • There needs to be better funding to help women access all services they need for endometriosis and the associated symptoms
  • Too much surgery can be just as bad as not having surgery
  • The first surgery should always be a sufferer’s best surgery
  • Women with endometriosis need to see and advanced trained laparoscopic surgeon who specialises in endometriosis and is an excision specialist.
  • Not all gynaecologists are advanced trained and not all gynaecologist will be able to effectively manage endometriosis
  • Most of the good advanced trained surgeons do not do public work. Some do limited work, most don’t.
  • Women and healthcare practitioners need to be educated about the facts are endometriosis
  • GP’s and other healthcare providers who are the first point of call for women, should be better educated about endometriosis and the associated symptoms
  • Women with endometriosis can have adenomyosis, PCOS and other gynaecological diseases at the same time
  • Women who suffer bad symptoms of endometriosis have contemplated suicide, or had suicidal thoughts
  • Women with endometriosis will require help with depression, anxiety and other mood disorders
  • Many women with endometriosis are addicted to pain medications and opiates and are not monitored , or managed well
  • Many women cannot function without some of the pain medications and the alternatives that are not as addictive need to be discussed
  • Diet and lifestyle changes can help with reducing the symptoms of endometriosis and may help with reducing some of the inflammation driving the disease
  • Healthy gut bacteria and restoring the microbiome can help with some of the symptoms associated with endometriosis and the inflammatory processes around endometriosis
  • Exercise may assist with the symptoms of endometriosis

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

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

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

Take care

Regards

Dr Andrew Orr

– No Stone Left Unturned

– Endometriosis Expert

– Women’s and Men’s Health Advocate

Dr Andrew Orr Logo Retina 20 07 2016

Dr Andrew Orr Logo Retina 20 07 2016

 

 

 

 

 

 

 

 

 

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Is it Endometriosis, or Adenomyosis, or both?

Endometriosis and Adenomyosis can often present with the same symptoms and many now believe they may be one in the same disease, just in different locations. Despite both of them sharing similar symptoms, there are pointers for properly trained professional to which disease may be presenting. Both diseases are often missed and dismissed as well. To learn more about Endometriosis, or Adenomyosis please click on the hyperlinks.

I have recently put up posts about hysterectomy not being a cure for endometriosis. It often causes lots of people to question this statement, because some uneducated healthcare practitioner has told them differently. Some may have had some relief from having a hysterectomy and now believe their endometriosis has gone.

Before I go any further, I do need people to know the facts. Hysterectomy DOES NOT cure endometriosis, but is can help Adenomyosis. There is no cure for endometriosis. I have explained the reasons why in my resent post Hysterectomy DOES NOT cure endometriosis. Please click on the hyperlink to find out the facts.

Many women who have Endometriosis, or Adenomyosis are often missed and dismissed for up to 10 years or more, before a diagnosis is made. This is due to the fact that many healthcare practitioners do not know the symptoms of these disease states, or dismissed them as being normal. That is a fact. This is why it is important to see someone who specialises in Endometriosis, or Adenomyosis.

With both Endometriosis and Adenomyosis, they share many common symptoms such as:

  • Painful periods
  • Pain with intercourse
  • Ovulation Pain
  • Dark and clotted menstrual blood
  • Digestive upset
  • Pain on bowel movement
  • Bowel or bladder issues
  • IBS like symptoms
  • Pelvic pain and rectal pressure
  • Infertility

What is the difference between Endometriosis and Adenomyosis?

The one thing that usually sets them apart is that Adenomyosis usually has more heavy menstrual bleeding, abnormal uterine bleeding and more flooding symptoms. Endometriosis can have this too, but usually adenomyosis presents with more blood loss symptoms and abnormal bleeding.

Endometriosis ‘cannot’ be definitively diagnosed via ultrasound, or MRI, but adenomyosis can be diagnosed via both of those methods. Endometriosis can only be definitively diagnosed via surgical intervention (laparoscopy). This is the biggest difference with the two disease states. The other thing is that both disease states can be present at the same time and quite often do.

The biggest issue for many women is that when one disease state it found, the other one is quite often overlooked, or misdiagnosed. Many women, and healthcare professionals, are unaware that both the disease states can be present at the same time and this is a real issue.

Hysterectomy will help Adenomyosis, but it ‘will not’ cure Endometriosis.

As I have mentioned earlier, hysterectomy does not cure endometriosis, but it can help adenomyosis. Many women have been led to believe that hysterectomy will cure their endometriosis and associated symptoms, but this is not true. Some women who have had a hysterectomy and then think they are getting relief from symptoms of endometriosis, but are actually getting relief from adenomyosis not being there anymore. It is just that they did not know it was there, they have never been diagnosed, and then believe their endometriosis is cured. Once the uterus is removed, the adenomyosis is removed too. Then all the adenomyosis abnormal bleeding, period pain and period related symptoms are usually gone as well.

The only trouble is, if a woman has been diagnosed with endometriosis, the endometriosis will still be there. That is a fact. Endometriosis does not miraculously go away after a hysterectomy. Endometriosis is not in the uterus. Some symptoms (usually the menstrual related symptoms) can settle for some people, but for many it does not. Regardless the endometriosis will still be there and can continue to grow and cause havoc elsewhere in the body too.

Proper investigation is important

When women come to see me for help with Endometriosis, or Adenomyosis, I always make sure they are investigated for both disease states. If a women has abnormal uterine bleeding, or heavy menstrual bleeding and they have only been diagnosed with endometriosis, I will always make sure that they are investigated to see if they have Adenomyosis as well. I will also screen for genetic issues such as Von Willebrand’s Disease and other pelvic pathology that may cause bleeding as well. It is also very important that women with both Endometriosis, or Adenomyosis, or both are are also screened for iron deficiency too.

Hope this explains a little bit more about Endometriosis and Adenomyosis and a bit more about which disease state hysterectomy will, or won’t help.

Regards

Dr Andrew Orr

-No Stone Left Unturned

-Women’s Health Expert

Dr Andrew Orr Logo Retina 20 07 2016

Endometriosis Awareness Hysterectomy does not cure endometriosis

Hysterectomy Does Not Cure Endometriosis

One of the things I get asked to comment on often by women, colleagues, media etc, is “Will Hysterectomy Cure Endometriosis?”

Every time I hear the question asked, or hear of women being told that hysterectomy will cure their endometriosis, I almost cringe and have to stop myself from swearing. The fact is this, and I want everyone to know this. Hysterectomy “DOES NOT” cure endometriosis. It never has and it never will and I am going to explain why.

Endometriosis is typically not found in the uterus as it is endometrial like tissue that grows outside the uterus. Endometriosis is really normal tissue, growing in abnormal areas. It can grow on the bowels, bladder, pelvic wall, utero-sacral ligaments (USL’s) and it can spread to nearly every part of the body. It is also one of the most misdiagnosed disease states in women and can take up to 10 years to diagnose on average. Some women are never diagnosed and many take up to 20 years, or more, to be diagnosed. This means that a hell of a lot of healthcare people miss it along the way. That is a fact. It also means a hell of a lot of healthcare people do not know much about the disease as well. Another  fact as well. Let’s not get started on the surgical side of this either. I have explained this in other posts (Click Here)

The other fact is there is a lot of BS (Bullshit) put out there about endometriosis by uneducated healthcare practitioners, media and general public alike. Again this is a fact.

One of the biggest pieces of misinformation is women being told that hysterectomy will cure endometriosis and is the solution to all the symptoms they are getting. Not only is this not true, but it is downright reckless, misleading and bordering on negligence. It is also causing women to have a healthy uterus removed and many to undergo a procedure that is not even going to cure their disease. There is no cure for endometriosis at this present time.

Why Won’t Hysterectomy Cure Endometriosis

Firstly, there is no cure for endometriosis. That is a fact.

Secondly, endometriosis is outside the uterus. As I have said before it can grow on the pelvic wall, the bowels, the bladder, the ovaries, the fallopian tubes, the USL’s and it can spread to the diaphragm, the lungs, the pericardium, the heart and nearly every part of the body. That is the truth.

Now, if the disease is not in the uterus, how is taking the uterus out going to be a cure for the disease?

Well, it isn’t a cure and this is what we need for people to know. Sure, menstrual related symptoms like period pain, heavy bleeding, clotting etc may be stopped due to a hysterectomy and not getting a period anymore. But, that is it really. Endometriosis will still be there and so will many of the non-menstrual related symptoms. Worse still many then think, or have been told, that the endometriosis is gone and that the symptoms they are experiencing post hysterectomy are not from endometriosis. The fact is, the endometriosis is still there and those symptoms are still from endometriosis. Many women are then led to believe the symptoms are in their head, or then told to go and see pain specialist and suck it up basically. That is what happens.

The other thing is, many women who have pain with their menses and heavy bleeding may have another condition called Adenomyosis and may not even know they have it. Hysterectomy will help adenomyosis, because this is confined the uterus. So when women say they got relief from having a hysterectomy, they may have just had adenomyosis and not even known they had it. They may also just be having symptomatic relief from menstrual related symptoms from not having their period. Adenomyosis and endometriosis often go hand in hand too and many do not know they have both disease states. Many now believe they are one in the same disease, but just in different locations. But, regardless, endometriosis will still be there regardless of whether a woman has a hysterectomy, or not.

No matter what anyone tells you, hysterectomy will not cure endometriosis. If endometriosis has been diagnosed, then it will still be there regardless of the uterus being taken. This is what we need all to know. Many women are told hysterectomy will be the cure to their endometriosis only to find the symptoms come back again after the procedure is done. The women I feel sorry for are the ones led to believe that hysterectomy will be the great savior for all their symptoms, only to find out it isn’t.

Let’s not forget that endometriosis symptoms don’t always relate to the menses either. Women with endometriosis can be in constant pain at anytime in their cycle and pain can also be cyclic, regardless whether the period is due or not. “Endo Belly” can strike at anytime. Women can go from having a flat stomach one minute, to looking like they are pregnant the next minute, and then back again. Then we have all the other physical and emotional symptoms as well.  Hysterectomy is not going to fix any of that. Again hysterectomy will only help with the menstrual related physical and functional symptoms and endometriosis will still be there.

There is only one way to deal with endometriosis and that is via a multi-modality approach and manage the disease properly. I have written many articles about this and spoken about it at many seminars and events. If you want to find out more about how to manage endometriosis please click here 

I need every woman with this horrible disease to know that Hysterectomy WILL NOT cure endometriosis. No matter what anyone says to you, it won’t cure the disease. That is a fact and we need to start getting this information out there and stop those spreading the misinformation to be educated properly. If anyone tells you that hysterectomy will cure endometriosis, tell them they are misinformed. The endometriosis will be there still. If you, or someone else, needs to know the facts about Endometriosis, you can always direct them to my Endometriosis Facts Page or visit Endometriosis Australia’s page as well.

Let’s end the silence and also put an end to the misinformation as well. Lastly, always remember that Period Pain IS NOT normal either.

Regards

Dr Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Expert

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