Many women face the possibility of having a reproductive disease and/or problems at some point in their lifetime. For some they’ve had issues their whole lives, for others problems develop suddenly with little or no warning. Some of the reproductive diseases that women can face are well known while others are not very well known and often get missed or misdiagnosed until it is either too late for treatment or the woman is physically and mentally/emotionally crippled by the pain.
This blog post series is inspired by my own recent experience of facing a potential diagnosis of either Endometriosis, which is what I was unofficially diagnosed with after an inconclusive and relatively short laparoscopic surgery (and just over 2 years later in April 2018 I was officially diagnosed with endometriosis after a 2nd and much longer laparoscopic surgery) and of which I already had a rudimentary knowledge of endometriosis as my mother has it as well, or Ovarian Cancer, which I knew pretty much nothing about let alone what the most common symptoms were until I faced the possibility of having it and began researching everything I could about ovarian cancer, so we are going to have a look at some of the most common reproductive diseases and problems that we as women can potentially face including endometriosis and ovarian cancer. I must stress right now that not everyone will develop one of these diseases/problems and this is not intended as a diagnostic or medical tool, this post is meant to provide awareness as it is always a good idea to know the signs and symptoms that can point to there being a problem so that you can find the best care provider possible for your particular circumstances.
The diseases we will be looking at in this blog post series are as follows:
- Ovarian Cancer
- Cervical Cancer
- Uterine Cancer
- Pelvic Inflammatory Disease (PID)
There isn't as much research on endometriosis as you’d expect there to be, and most of what research is available is mostly older research from prior to 2000, some of which has since been proven wrong, although there are some specialist gynaecologists who are actively looking into endometriosis and trying to find a cure for it – there is currently no known cure for endometriosis and even a full hysterectomy and artifical menopause will not get rid of it or prevent it from growing.
Endometriosis wasn’t really recognised as a reproductive issue or a real “thing” until the mid-late 1970’s and early 1980’s, prior to those years girls and women were “fobbed off” and told to just “deal with it” or told that they were “looking for attention”. My own mother wasn’t diagnosed until she was referred to one of the doctors involved in the first IVF treatments in Melbourne, VIC, for reproductive issues, this was quite a few years before I was born but it is a good example of how little was known and accepted about these kind of issues back then. Even now in 2016 it can still be hard to find a care provider (doctor or GP) who takes us seriously and considers the possibility of endometriosis being the cause of some of our reproductive problems.
“It took over 17 years for me to finally get an unofficial diagnosis of endometriosis and 19 years for an official one, at 14 back in 2001 I was ‘fobbed off’ by our family doctor and told to take evening primrose oil (EPO) capsules to ‘manage’ the supposed PMS symptoms I was having – very heavy periods, bad lower abdominal cramping that would leave me bedbound the first day or two and migraines combined with severe hormonal mood swings. Needless to say they didn’t do anything to help at all and I stopped taking them within 2 months.” – J, 30
J’s story of how long it took to get a diagnosis is very, very common. Many women live with their reproductive problems for years, even a few decades in some cases, before they finally find a care provider who takes their concerns and symptoms seriously and begins investigations into the cause/s and refers them to a gynaecologist from whom they are able to get a diagnosis after a laparoscopic surgery.
So What Is Endometriosis?
Endometriosis is the abnormal locations of endometrial-like cells – cells that are similar to but genetically different to those that make up the lining of the uterus and "shed" during your period each time it arrives - they tend to follow a similar cycle to your usual monthly cycle but can also have their own cycle that is "out of whack" with your menstrual cycle as well following their own individual cycles of activity and passivity.
When the endometriosis is "growing" it shows up as red spots or "lesions", when it is "shedding" there is fluid and/or blood present, and also possibly blood filled cysts called endometrioma’s, and it can spread further during this process, when it is "quiescent" it may not always be visible to the naked eye but that doesn't always mean that it isn't there.
A sign of pre-existing endometriosis in the absence of active cell sites is scar tissue or "adhesions" in certain places or where you normally wouldn't expect to see them, especially if they can't be explained by a prior surgery or infection. The pouch of douglas for example is one of the places where adhesions caused by endometriosis can be found (the pouch of douglas is located between the rectum and the posterior (back) wall of the uterus and is a kind of cul-de-sac, or dead end, within the body). Endometriosis can also grow over the uterus, inside the muscles of the uterus (called Adenomyosis), inside the ovaries, on the outside of the ovaries, on the bowels, rectum and bladder, and in rare cases can travel up to the upper abdominal cavity and the chest, gums (causing gum bleeding), sinuses (causing sudden unexplained nose bleeds) and it has even been reported to have been found in the brain (causing severe migraines when the endometriosis is active).
Endometriosis can either be active or inactive (quiescent) or a combination of both within the same body. It may appear actively in one place only during an exploratory laparoscopy and a few months later during another laparoscopy to remove it the previously active lesion sites may be inactive with active lesions may be present somewhere else.
Signs and Symptoms of Endometriosis
The signs and symptoms of endometriosis are different for every woman, many can have some similar symptoms and a host of other symptoms that are completely different to what another woman with endometriosis experiences.
Listed below are the most commonly reported symptoms of endometriosis:
- Pain, this can be pain immediately before and/or during your period, pain during and/or after sex, abdominal, back and/or pelvic pain, pain when going to the toilet or passing wind and/or ovulation pain including pain in your thigh or leg (this can however sometimes be a normal occurrence for some women without endometriosis), this pain does not always correlate with your normal menstrual cycle and it is very possible to have pain between periods insteado f just during your period
- Bleeding, heavy bleeding with or without clots, irregular bleeding with or without a regular cycle, bleeding longer than normal and/or bleeding before your period is due.
- Vagina, the vaginal muscles can tighten or spasm on insertion of objects, eg a tampon, speculum or penis, which can cause discomfort and/or pain.
- Bowel and/or bladder problems, bleeding from the bladder and/or bowel, change in pattern of bowel habits eg constipation and/or diarrhoea and/or the need to urinate more frequently or some other change from your normal habits.
- Bloating, mainly an increase in your abdominal area, this can be during your period and/or starting from any other time in your cycle.
- Mood changes, anxiety and depression can be a concern because of the ongoing pain which can make you short tempered, angry, frustrated, sad and/or upset to varying degrees.
- Reduced quality of life, having to take days off work/school/personal interests because you are unable to function normally not being able to leave the house because of the pain, being isolated and not being able to spend time with friends and/or family because it is too difficult and painful to go anywhere or do anything, all of these and many more can vastly impact your quality of life.
Some people with endometriosis have NO SYMPTOMS at all, and your pain and symptoms (or lack thereof) has no correlation with how extensive this disease may be in your body.
Diagnosis And Treatment Of Endometriosis
Endometriosis can only be diagnosed via laparoscopic surgery, although some deeply infiltrating suspected endometriosis lesions can be “discovered” through a specialist ultrasound to check the movability of the internal organs (DIE ultrasound, this method isn’t exactly accurate however and may not see anything) or through palpation of both the abdominal and vaginal areas to check for “nodules” in the tissue that may indicate that endometriosis (also not accurate) is present. Regardless of what is done to investigate the possibility of endometriosis it is best to see a gynaecologist who specialises in endometriosis (an endometriosis excision specialist, Endometriosis Australia may be able to assist with helping you find one in your area) as not every gynaecologist is able to recognise all of the signs of endometriosis and a specialist knows exactly what to look for.
It can be very hard to treat, there is no cure and it has a nasty tendency of growing back and spreading elsewhere, endometriosis currently at the best can only be “managed”. The most common management methods are:
- Excision (this is cutting out the affected tissue, includes standard cutting with a scalpel and also cutting with a laser), this method is considered to be the “Gold Standard” of treatment as it completely removes the endometriosis lesions, excision has a 70-80% non-reoccurrence rate within 5 years in the areas excised (meaning in 70-80% of excision the endometriosis does not grow back in the areas excised within 5 years post surgery)
- Ablation – burning away the affected tissue with a laser, this method isn't considered to be very good as it only removes the surface endometriosis cells and leaves cells behind that can continue to grow and infiltrate deeper into the surrounding tissue, ablation can also cause more damage internally because it burns all of the tissue that it touches even if it is healthy with no endometriosis cells, ablation has a 30-40% non-reoccurrence rate within 2 years post surgery (meaning that it returns in the areas that were ablated in 60-70% of people within 2 years of having ablation)
- Hormonal therapy (progesterone pills, contraceptive pill, intra uterine device etc), these options can help reduce the symptoms for some but don't work for everyone, they do nothing for the underlying endometriosis however so are not a "treatment" but are a management option
- Artificial menopause, this is not a "treatment" as it does nothing for the underlying disease, however it can help to reduce or stop the symptoms for some, there are ongoing risks involved with this management option that can continue for years after finishing it so it is a very good idea to have a long discussion with your care provider about these to determine if these risks are outweighed by the possible benefits that it could provide
- Full hysterectomy, while this often considered by many care providers to be a "cure" it does nothing for the endometriosis itself and endometriosis can still grow after a full hysterectomy as it is separate from both the reproductive and endocrine systems and isn't reliant on them for its existence. Hysterectomy can stop excessive bleeding leading to anaemia and some of the other symptoms that can be caused from normal uterine contractions pulling on scar tissue or fused organs throughout your menstrual cycle so it can be a symptom management option for those who are having these issues.
When do I seek help?
Seek help whenever the pain is stopping you from doing daily activities, whenever the pain makes it impossible for you to leave the house and/or bed, when over the counter medications don’t relieve the pain when the symptoms are getting progressively worse and make you upset or down/depressed and when you are unable to cope mentally with the pain any longer.
Make sure that you see an endometriosis excision specialist (Endometriosis Australia may be able to help you find one in your area) if you suspect that you may have endometriosis. You want your first surgery to be your best surgery and your best surgery will be one that is done by an endometriosis excision specialist.
http://www.healthline.com/health/endometriosis - information about endometriosis.
http://www.ecca.com.au/treatment - on treatment of endometriosis, locations where it can be found and explaining how endometriosis operates.
http://www.webmd.com/women/endometriosis/endometriosis-what-happens - what happens with endometriosis
https://jeanhailes.org.au/health-a-z/endometriosis/management-treatment - management and treatment of endometriosis.