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.
Millions of women world-wide suffer from chronic pelvic pain. One of the causes of chronic pelvic pain is a condition called Pelvic Congestion Syndrome and it is not often talked about. I thought it was important to share this information to bring more awareness to this syndrome.
Pelvic congestion syndrome does share many of the same symptoms of endometriosis and adenomyosis and it important to have proper differential diagnosis and rule other causes of pelvic pain out first. Sometimes the varicose veins that cause pelvic congestion syndrome can be present alongside endometriosis and adenomyosis, or other pelvic issues.
In the past, a diagnosis of chronic pelvic pain left many women frustrated with few treatment options and a lack of available resources. Their doctors were often left perplexed, despite the endless negative laboratory test and imaging data as well as inconclusive consultations obtained.
In the last 10 years, improved medical understanding and increased awareness have lessened the confusion surrounding this condition and its distinct association with pelvic congestion syndrome (PCS). There are now more minimally invasive surgical solutions which give affected patients more treatments choices as well.
So what is Pelvic Congestion Syndrome (PCS)?
Pelvic congestion syndrome (PCS) is a chronic condition that occurs in women when varicose veins form below the abdomen within the pelvic region. Pelvic congestion is just like the varicose veins that some women have in their legs, but it affects the veins of the pelvis. Blood backs up in the veins, making them become enlarged and engorged. Pelvic congestion can also cause chronic pelvic pain in some women.
What are the symptoms of Pelvic Congestion Syndrome?
The main symptom of pelvic congestion syndrome is pelvic pain that lasts at least 6 months. The pain may be a heavy or aching feeling. Or the pain may be sharp. Usually the pain is only on one side, usually the left side. At times you may feel it on both sides. The pain is often worse at the end of the day. If PCS occurs in pregnancy it often first starts during or after a pregnancy. It may worsen after a later pregnancy.
Symptoms of Pelvic Congestions Syndrome can include the following.
- Pain starts 7-10 days before your period
- Pelvic pain is worse when you sit or stand
- Lying down relieves pelvic pain
- Varicose veins around the vulva, buttocks, and legs
- Abnormal vaginal discharge
- Swelling of the vagina or vulva
- Tenderness of the abdomen
- Pain during sex
- Dysmenorrhea (painful menstruation)
- Abnormal bleeding during menstruation
- Increased urination
- Irritable bowel symptoms
- Hip pain
- Lower back pain
- Aches in your legs
The syndrome often causes a constant dull pain in the pelvic area that is said to worsen at different times of the cycle and in different situations. Experts believe it can be the source of pain in up to 30% of women who have chronic pelvic pain.
How is at Risk?
It’s more likely to develop in women who have previously given birth, but it can be found in women who have not had children. It is also hereditary so if someone in the family has it, you may be at a higher risk of having it.
What Are The Causes of PCS?
It is still not fully understood what the cause of pelvic congestion syndrome is. There may be multiple factors and causes.
Enlarged veins in the pelvis seem to play a major role. These large veins do play a major role in those that have chronic pelvic pain, but many women have enlarged veins and no symptoms.
Pregnancy may increase the risk for pelvic congestion syndrome. This is because veins enlarge during pregnancy to support the increased blood flow. This can permanently enlarge the veins and lead to symptoms.
Just like endometriosis and adenomyosis, hormones may also play a role in pelvic congestion syndrome. It is though that estrogen may play a big part of this by making veins wider (dilates). We do know that estrogen does drive disease inflammatory states. We also know that PCS is less common after menopause when estrogen levels tend to be lower.. Other hormones may also cause veins to grow wider and cause symptoms.
Excess weight and increased body fat may also cause increased inflammation and estrogenic response that leads to pelvic congestion syndrome.
Other factors such as dietary and lifestyle factors may exacerbate this condition as well.
How is it diagnosed?
PCS can be quite difficult to diagnose, and will need a multimodality approach to be able to firstly diagnose this properly and then apply appropriate treatment. PCS often requires a multidisciplinary approach because the differential diagnosis is quite long and varied. As mentioned before, some of the symptoms are the same as other inflammatory conditions such as endometriosis and adenomyosis. Multiple diagnostic procedures are needed to eliminate other possible causes for your symptoms. These procedures can include:
- Laparoscopy (keyhole surgery)
- CT scan
- MRI scan
Ultrasound is often preferred as the first step in diagnosing PCS, as it is possible to detect the varicosities as well as assess the blood flow. The only problem with ultrasound is that is that it may not always pick the varicosities up.
MRI may be needed, but even then, laparoscopy is the only procedure to definitely diagnose this condition. I often explain to women that if they have been in pain for a long time, the best option is a laparoscopy. This can also be used to exclude other pelvic pathology and also check to see if there is endometriosis etc too. Sometimes the varicosities may need to be tied off surgically as well and can be done via laparoscopy. Laparoscopy is the gold standard investigation of the pelvis and why it is the best option.
There may need to be input from other health professionals and modalities such as gynaecologists, anaesthesiologist, gastroenterologist, advanced trained laparoscopic surgeon, neurologist, haematologist, oncologist, psychiatrist, and urologist or urodynamic specialist may also be necessary. If someone sees a lot of this syndrome then they will be able to differentiate this without the need of involving too many other areas of medicine, but all other pathology and disease states do need to be carefully ruled out first.
When I help women with PCS, I have a very specialised team of healthcare professionals I work with that see this syndrome often and know what to look for very quickly and promptly. This is why it is very important to see the right people who know about these particular areas of women’s health conditions.
Treatments for Pelvic Congestion Syndrome
Treatment for pelvic congestion syndrome is usually aimed at reducing and alleviating symptoms. Unfortunately, like endometriosis, there is no definite cure for the condition, and it can be challenging to treat if you don’t get to see the right healthcare practitioner, or healthcare team.
There are medications available to help relieve symptoms of PCS and these can include:
- NSAIDs (nonsteroidal anti-inflammatory drugs)
- chronic pain medications (such as gabapentin plus amitriptyline)
The most successful treatment currently is a minimally invasive surgical procedure called pelvic vein/ovarian vein embolization (PVE/OVE). This procedure blocks off the faulty varicose veins so that they can no longer enlarge with blood, thereby relieving the pain. that are believed to be the source of pain.
Embolization (PVE/OVE) offers a safe, effective, minimally invasive treatment option that is less expensive to surgery and less invasive. It is an outpatient hospital procedure which requires only conscious sedation. Once the procedure is performed, you can return home a few hours later the same day. Medical literature shows that the procedure provides complete or partial relief in approximately 90% – 95% of the cases. As with any procedure, there are risks, and not all women may be appropriate for this treatment option.
A laparoscopy may still be needed to definitely diagnose the varicose veins first, before embolization can be performed. This is why diagnosis and treatment of PCS does require a step by step multimodality approach. This is something that needs to be clearly understood.
PCS isn’t a condition that is life threatening, but it does have the potential to significantly affect your quality of life. Symptoms such as chronic pain, pain during sexual intercourse, and dysmenorrhea can lead to a decrease in physical activity, loss of function, and depression. It can make daily life very hard and make it difficult to function in your personal and work life.
A diagnosis does not necessarily mean you will be affected to this extent and PCS varies greatly in terms of severity for each person. Not all women with PCS will have their daily life affected and some do not get pain at all.
The good thing is that there are treatments available to minimize the symptoms and help sufferers cope with this condition. It is important that you talk to your healthcare practitioner if you do have any of the symptoms of PCS.
It’s also important to talk to your healthcare practitioner about counseling, if needed, to help you cope with the significant chronic pain that can go along with having PCS. Chronic pain can impact on an emotional and psychological level and this can then lead to further exacerbation of pain. Many people just do not realise the impact the stress and emotions and mood disorders can have on pain conditions.
If you do have chronic pelvic pain and need assistance with diagnosis and management please give my friendly staff a call and ask how I may be able to assist you. I also work in with a good network of healthcare professions to help my patients get the best care possible. My motto is No Stone Left Unturned and I apply this to everyone that comes to see me for assistance with their health condition.
-No Stone Left Unturned
-Master of Women’s Health Medicine
-The Women’s Health Experts
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)
Other associated symptoms such are:
- Irregular bleeding
- Pain with bowel movement
- Irritable Bowel like symptoms
- Urinary Tract Infection (UTI) like symptoms
- Mental and emotional disturbances (depression, premenstrual dysphoric disorder)
- Pain with intercourse
- 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
- Exercise therapy(weight baring exercise, resistance training)
- Core strengthening(pilates, yoga)
- Pelvic floor management(Pilates, Kegels Exercises/Kegels balls, Vaginal stone eggs),
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.
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.
-No Stone Left Unturned
-Master of Women’s Health Medicine and Master of Reproductive Medicine
-The Endometriosis Experts (incorporating adenomyosis as well)
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.
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.
-No Stone Left Unturned
-The Endometriosis Experts
The Australian Institute of Health and Welfare has just released a report on Endometriosis – “Prevalence and hospitalisations”. I thought it was important to talk about this and share this information in a previous post.
When I did post this information on social media, with an explanation about endometriosis being more than just period pain, someone had commented and congratulated me for acknowledging that endometriosis has other associated symptoms as well.
One of the things I see with media reporting on anything to do with endometriosis, is that they always refer to endometriosis as just being about period pain. So I wanted to talk about the importance of recognising that endometriosis is more than just period pain.
Endometriosis has many other associated symptoms and is more than just period pain, which it is often portrays it as in the media. Endometriosis flares can happen at anytime and aren’t always related to a woman’s menstrual cycle.
Have a listen to my latest video post about this subject and some other useful information to know about 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.
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%.
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.
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.
-Women’s and Men’s Health crusader
-No Stone Left Unturned
-The Women’s Health Experts
All to often I hear some women “Man-Bash” male healthcare practitioners who specialise in Women’s Health issues. Often when male healthcare professionals are trying to bring awareness to female health issues it is now seen as the buzz word “Mansplaining”
What these individuals need to know is that there are many men at the forefront of women’s health issues and they are here to help women, not hinder them. These men do what they do because they care and they are passionate about what they do. Some do so because of partners, or family with gynaecological issues and they want to help any way they can.
These Male Specialists have had years of training and clinical experience and research behind them and actually know more about the female body than many females know about themselves. Being a female, or having a gynaecological disease does not make one an expert. The same goes for males with male health issues too.
Many of these male Women’s Health specialists are also some of our best advanced trained laparoscopic surgeons as well. Many of these health experts also specialise in women’s diseases such as endometriosis.
We also have women specialists who are at the top of their field in male health issues. This should not be a gender thing and unfortunately some misinformed people tend to make it so. Too many people try to make it about self, rather than the bigger issue, or collective.
Many men give up their own time and are not paid for the work they do with women’s health issues. Some of them are working at government level, media level and all sorts of areas to bring awareness to diseases that affect women.
Let’s not forget the men whose partners are affected by disease states. These men offer great support to women who suffer around the world and while they do not suffer the disease, they go through it all with their partners on differing levels.
In this video, I tackle two issue that really need to be talked about
- Period pain is not normal and no matter what anyone says, this is a fact
- We need to end the Man-Bashing of males who specialise in women’s health issues because many men are at the forefront and are trying to help women get the recognition they deserve.
Let’s end the silence for women who suffer disease states like endometriosis. Let’s end the myths around women’s health issues.
Period pain is not normal and women need to know about it.
Just like we need to end the silence about women’s health issues, we also need to end the Man-Bashing of male healthcare practitioners and educators out there at the forefront of women’s health.
Being a male does not mean we do not understand women’s disease states and it does not mean we do not understand pain. By taking away from these men’s messages and their dedication to women’s health, it is also causing damage to the bigger picture and is actually sabotaging women as well.
Have a listen to my latest video blog and explanation of this important subjects that we all need to talk about.
I myself am a male healthcare professional who helps with treatment, management and education of women’s health issues. I genuinely care about issues such as period pain, endometriosis, PCOS and fertility. I have family with gynaecological issues and I have cared for thousands of women with gynaecological and fertility issues. It is a very special interest of mine and I want to see women get the care and help they need. Being male should not even be bought into this.
Lastly, if you are in pain and needs help, please give my clinic a call and make a time to book in a consultation.
Dr Andrew Orr
-Women’s and Men’s Healthcare advocate
-No Stone Left Unturned
-The Endometriosis Experts
The only way to definitively diagnose endometriosis and the causes of period pain is via surgical intervention. Scans, blood tests etc do not diagnose endometriosis. You cannot have a scan to diagnose endometriosis and you cannot have a blood test to diagnose endometriosis either.
The definitive diagnosis of endometriosis needs to be done via a laparoscopy
The definitive diagnose ‘is’ and ‘always will be’ via a laparoscopy/laparotomy, along with histology (biopsy) and tissue samples taken to examine. Most times a hysteroscopy is done at the same time and if there is an evaluation for fertility, dye studies for tubal patency will be done at the same time.
Women with endometriosis need to see an Advanced Trained Laparoscopic Surgeon
A laparoscopy is the goal standard investigation of examining the pelvis and for investigating gynaecological disorders such as endometriosis. The laparoscopy also needs to be done by what we call an Advanced Trained Laparoscopic Surgeon, who has extra years of surgical training, and who specialises in this disease and specialises in the excision of endometriosis.
It can’t just be done by a regular obstetrician/gynaecologist and this is where many go wrong. Many women just haven’t seen the right surgeon first up who has he proper skills to deal with endometriosis effectively. The first surgery should always be your best surgery and early intervention and management of this disease is crucial. The longer it is there, the worse it can become.
Ultrasounds and Bloods Tests etc Cannot Diagnose Endometriosis
All too often I get women telling me that they do not have endometriosis because their doctor has ruled it out via an ultrasound, or blood test. This is so distressing to hear and this is why so many women are missed and dismissed with this horrible disease that affects 1 in 10 women world wide.
Endometriosis Management Requires a Multi-modality Approach
But, please know that surgery does not cure endometriosis. It is just the first stage in the management of the disease and the active lesions that have been expressed and are present now. Endometriosis can, and will return for many suffers and this is why endometriosis needs ongoing care and a multimodality approach to treat it effectively. It needs a team to manage it properly. While surgery is an important part of evaluation, management and diagnosis of endometriosis, it is to help with symptomatic pain and then other treatments are needed to suppress the disease from further developing and also managing ongoing symptoms.
If you need help with period pain, or assistance with endometriosis, please give my clinic staff a call and find out more about how I may be able to assist you.
-No Stone Left Unturned
-Women’s and Men’s Health Advocate
-The Endometriosis Experts