Even though endometriosis is such a common disease, many women are still failing to get a diagnosis. The average delay between the onset of their symptoms and a positive diagnosis is approximately seven years. There are several different factors which cause this delay in a diagnosis, and most of them are due to stupidity and lack of awareness.
These factors include the following:
- Most women are told as teenagers that they will experience some pain with their periods, and that this is perfectly normal and a fact of life. Therefore when they do start to feel pain and the pain makes them ill, they still think it's normal. What's more, they don't want to bother their doctor, because after all, it's only period pain.
- Some GPs still don't take their women patients seriously, when they do come in to see them,complaining of painful or problematic periods. Again, because all women suffer from painful periods, GPs tend to ignore these symptoms. More often than not, they will put their patients on the Contraceptive Pill, in order to calm their periods down, or they will tell their patients that they have just "got to learn to live with it".
- There are no particular signs or symptoms that immediately point in the direction of endometriosis. If you went to see your GP with a virus, or had an infection such as the measles, it would be obvious straight away what the problem was. Because there are so many symptoms where endometriosis is involved, it can be much harder to pinpoint and say for certain what the problem is.
- Painful sex may be diagnosed as a psycho-sexual problem
- Doctors may not think to include endometriosis on their list of possible causes of a woman’s symptoms.
- Waiting lists for referrals to see a consultant gynaecologist can be extremely long. After your initial appointment, you then have to wait for an appointment to come through for a laparoscopy. In the UK, if you're not deemed an emergency case, then the waiting list for a laparoscopy can be anything from six months to a year.
Because the symptoms are so vague, doctors usually misdiagnose endometriosis, or confuse it with conditions such as:
- Irritable Bowel Syndrome (IBS)
- Pelvic Inflammatory Disease (PID)
- Ovarian Cysts
- Ovarian cancer
If your GP suspects that you might have a gynaecological problem as supposed to a gastro-intestinal problem, then you will get a referral to see a gynaecologist at your nearest hospital.
When you do get an appointment and know that you are going to see a gynaecologist, then it might be a good idea to write all of your questions down on a piece of paper.
I used to keep a diary and would chart my pain/cycle in order to take with me to my appointments. However, nowadays everyone has either a smart phone or a tablet. It’s definitely worth getting an App or two which can track your menstrual cycle, your pain and your symptoms. Some of the Apps can then be used to upload all of your symptoms etc. to your GP/consultant. Again - this can be a really useful tool and can help your gynaecologist get a better idea of your symptoms.
Before anything else, your gynaecologist will want to know as much as possible about your medical history. Therefore you will be asked a whole range of questions, and even though it might feel as though you are being interrogated, the more honest you are about your symptoms – however embarrassing they might be – the more your doctor can help.
I've tried to write down as many questions as I can remember from my own experience, so that you may get an idea of what sort of questions you'll be asked. Please remember, these are questions that I've been asked over the years by various different doctors. Therefore don't expect to be asked each and every one of them...but do expect to be asked a lot, especially if your gynaecologist is thorough.
•What are your current symptoms?
•How bad are your symptoms?
•How frequently do you suffer from them?
•Have they had an effect on your every day life?
•Is there anything that brings them on, or helps to relieve them?
•Where exactly do you feel the pain?
•Does it move, or does it stay in one place?
•What does the pain feel like?
•Do you get pain anywhere else, and if so where?
•What does that feel like?
•How bad does the pain get? (Mark it from 0-10, 0 being no pain, 10 being too much)
•How long does the pain last for?
•What makes your pain worse?
•What soothes the pain?
•How much does the pain interfere with your daily routine?
•Does the pain keep you awake at night?
•How old were you when your periods started?
•Have you always had painful periods?
•If not, when did they start to get bad?
•Are they heavy or light?
•Do they have clots in them?
•How many tampons/ sanitary towels do you get through in a day?
•Do you have regular periods, if not then what is your menstrual cycle like?
•How long do your periods last for?
•When was your last period?
•Do you have any bladder or bowel problems?
•Do you suffer from bladder infections?
•Do you suffer from yeast infections?
•Do you get pain when you empty your bladder or bowels?
•How frequently do you empty your bowels?
•Do you suffer from diarrhoea or constipation?
•Do you wake in the night needing to empty your bladder and if so, how often?
•Do you find sexual intercourse painful and if so, is the pain deep or superficial?
•Does the pain continue afterwards and if so, for how long?
•Are you able to work full time or part time?
•What is your appetite like?
•Is there any family history of gynaecological problems?
•Have you ever been pregnant?
•Have you ever tried to get pregnant?
•Have you had problems trying to conceive and how long have you been trying?
•Have you ever had a miscarriage?
•What is your past medical history?
•Do you suffer from any other illnesses?
•Have you had any other operations, especially ones on your abdominal area and if so, what for?
•What is your family history?
•Are you currently on any medication and if so, what for?
•Do you have any drug allergies?
•Do you smoke or drink and if so, how much and how often?
•What is your general health like?
•Do you work and what do you do?
As I mentioned before, please don't be alarmed at the amount of questions here. I very much doubt that you will be asked each and every question, but you will be asked about your menstrual cycle, your pain and whether or not you've been pregnant before.
I know that a lot of the questions are personal and can be embarrassing if you're not used to visiting the gynaecologist. However, the more you help the doctors, the more likely it is that they'll be able to help you.
If you are lucky, you will be seen by someone who knows about endometriosis and who recognises the warning signs. More and more junior doctors are being trained to look for endometriosis, so don't be alarmed if you do see a young doctor.
Having said this, there are still doctors out there who can miss the symptoms, and who will end up sending you home. Hopefully though, if you suffer from what they regard as classic symptoms, then they should put two and two together.
At the end of the day, it doesn't matter what your symptoms are. What matters is that you are listened to and believed - so that they can find out what's wrong with you.
If all the signs point in the direction that something isn't quite right, then you will have to be examined, internally as well as externally. Before they decide whether or not you need further investigation, doctors need to know that they haven't missed anything else, such as appendicitis, an ovarian cyst or an ectopic pregnancy. All three problems can cause severe bouts of pelvic pain, and need to be ruled out, before anything else is decided upon. Ectopic pregnancies are especially dangerous if missed, so you will probably have an ultrasound scan, just to rule that particular problem out.
Being examined by a doctor can be a fairly traumatic experience at the best of times, especially if you have never had an internal examination before. When you are in a huge amount of pain, and are terrified of the doctor causing you more pain, then it can sometimes be a little too much.
Before your doctor does an internal examination, he will have a good feel of the outside of your pelvis first. He will ask you to point to where the pain is and will gradually feel his way around the stomach area, and then down to the pelvis. Doctors have to press quite hard, to see if they can feel any swellings or abnormalities, so they could end up making your pain worse. What happens then, is that you tense all of your muscles up, and make it impossible for the doctor to do anything for you. It is incredibly hard to try to relax whilst you're experiencing all of this pain, but it's easier all round if you do.
If you have never had an internal examination before, let your doctor know. Most doctors are incredibly gentle during an internal examination and will stop if you ask them to, especially if they're hurting you too much.
I know how hard it is to relax during an internal examination, but again, the more you can let your muscles go, the easier it is for the both of you. Your doctor is able to examine you a lot more effectively if you're muscles are relaxed. Once you have been examined, your doctor will then decide on the next course of action.
If your GP thinks that there is something really wrong and that you need to be seen straight away, you may find yourself being admitted into the hospital for an emergency laparoscopy. Normally though, you will probably have to have more tests done. These can include more scans (both abdominal and internal) and even and MRI scan. Endometriosis tends not to show up on MRI and is very rarely spotted during an ultrasound or Trans-Vaginal (internal) Scan. Most of the time the sonographer won’t know what to look for and will only spend a few minutes scanning you. If you have a chocolate cyst (endometrioma) then this will show up on the ultrasound as it’s a large mass and can be easily spotted.
Some specialist endometriosis centres are now using highly trained sonographers who can spot deep infiltrating endometriosis (D.I.E). They know what it looks like and what to look for during a TVS. Instead of spending a couple of minutes having a quick look around - the sonographer or doctor will take their time. When I had my TVS earlier last year (2016) it lasted about 15 minutes. What was amazing was that the doctor was able to spot a tiny dot of DIE on the left side where ALL my pain was situated.
Having said that, this is not to be used as a diagnostic tool.
The TVS is “not a histological diagnosis but can be incredibly helpful if read by a skilled team for presurgical planning and ruling out other things as well as in some cases highly suspecting Endo” (Thank you to Heather Guidone from the ERC & CEC).
The only way to positively diagnose endometriosis is by having a minimally invasive procedure called a laparoscopy.
Usually, women with endometriosis do get diagnosed in the end, because doctors eventually run out of ideas. However, if you are lucky, as I said before, and they suspect endometriosis, then you will be put on the waiting list for an operation.
The fact that it still takes up to 7 years to be diagnosed is outrageous in this day and age. Endometriosis may not be life threatening but it can certainly affect our lives and be a huge drain on society and on the NHS.
Don't be embarrassed to talk about endo
You need to see a psychologist