As I mentioned previously, there are no hard and fast rules with endometriosis. Because there are so many different symptoms that a woman may suffer from, it does mean that it is more difficult to say for definite whether or not a woman has the disease. Having said this, there are some "classic" signs which could point in the direction of endometriosis being the culprit and these are:-
- painful periods (dysmenorrhoea)
- painful sex (dyspareunia)
- pelvic pain (cyclical or continuous)
Other symptoms which are known to be typical of endometriosis are:-
- heavy periods
- abnormal bleeding
- pain with urination
- pain with bowel movements
- break-through bleeding
- painful ovulation
- swollen abdomen before or after a period
- loss of stale dark brown blood
- pre-menstrual syndrome
- loss of large dark clots during a period
- rectal pain with bowel movements
- nausea / vomiting
- back pain throughout the month
- back pain with a period
- joint pain
- feeling dizzy or faint
- inability to sleep due to pain
- waking in the night because of pain
- pain after intercourse
- pain radiating down the leg
- chronic fatigue
- chronic pain
- problems with the immune system
- problems with circulation - e.g. cold feet and hands
It is important to remember that you may experience some of these symptoms, or you may find that you have no symptoms at all. This is just a list of symptoms that women with endometriosis I've met over the years tend to complain of. This means that some women may suffer from one set of symptoms and another woman may suffer from another set. This is why it’s so hard to diagnose endometriosis, because of the wide range of symptoms. However, if you do have painful periods, or suffer from painful intercourse, then don’t let the doctors tell you that it’s a “fact of life”, because it’s not. Intensely painful periods which leave you doubled up in pain, and pain with intercourse are nothing to do with "being a woman".
Painful Periods (Dysmenorrhoea)
Painful periods are one of the most common symptoms associated with endometriosis pain. They are probably the most talked about symptom too, and that is why so many people get the wrong idea about the disease. They seem to think that the only real problem is a bout of bad period pain. This is why we get such bad press about the disease. If other women can cope with period pain, then why can't we? Unfortunately, bad period pain is just one symptom of many that women with endometriosis have to deal with. According to medical textbooks, there are two types of dysmenorrhoea: primary and secondary. Primary dysmenorrhoea is said to be the “cramping type” of period pain that teenagers typically suffer from. Usually this starts just after menstruation, and tends to lessen up as a woman gets older, or after a woman has had a baby. The pain usually begins as soon as the period starts, and only lasts for a couple of days. Sometimes it can be bad enough to cause women to faint, or to vomit, but once their period has stopped, the pain goes away. Secondary dysmenorrhoea is the “grinding” or “boring” period pain, which is usually caused by an underlying problem with the reproductive organs. It is generally associated with conditions such as fibroids, Pelvic Inflammatory Disease and endometriosis. The pain felt with endometriosis can be mild, moderate or severe. Words used by women to describe their painful periods are:-
- deep inside
This pain can be felt mid-line, around the uterus, or on one or both sides of the pelvis. Women with endometriosis sometimes complain of pain that radiates around their pelvis, and that they can feel pain in other places, such as:-
- the lower back
- the hips
- the vulva
- the pubic bone
- the rectum
- the buttocks
- the groin
- the thighs
As well as this, diarrhoea, constipation, nausea, vomiting and feelings of dizziness can accompany the pain. Some women suffer from pain throughout the month, and then find that their pain increases and intensifies, as their periods are due. The pain can begin one or two days before their period is due, and then becomes more severe, especially once their period starts. Some women say that their pain only lasts for a couple of days into their period, whereas others say that their pain lasts throughout, and tapers off a couple of days after their period has ended. Occasionally women find that their pain can worsen and peak at the end of their period, which seems to be fairly common in women with endometriosis. Most women who suffer from bad pain with their periods tend to find that they're unable to do anything, except stay in bed curled up with a hot water bottle and some decent pain relief. In fact, most women I know with endo, tend to completely withdraw into themselves whilst they're having their period, because to get out of bed and actually do something, is virtually impossible. A lot of women with endo only suffer from this type of pain whilst they are having their period. They find that once it's all over and done with for another month, they are able to get up and resume a normal life. Other women, however, aren't so lucky. Sometimes the pain can continue throughout the entire month, only letting up for a few days at a time. As with all of the other symptoms associated with endometriosis, it's not really clear why so many women suffer from so much pain during their period. There are various reasons and theories, and these include the following:
- The bleeding from the endometrial implants can cause irritation to the surrounding tissue and organs.
- Pressure resulting from the swelling of the implants and chocolate cysts can cause pain in the immediate area, much in the same way that a boil causes pain.
- Endometrial implants release inflammatory chemicals known as prostaglandins. This can cause a spasm of blood vessels and may trigger pain through a lack of oxygen to the surrounding tissue.
- The release of extra prostaglandins from the implants and cysts can also cause increased cramping contractions of the uterus, which means that women can suffer from very intense cramps.
- If the endometrial lesions invade tissue or organs, such as the bladder or bowel, then they will cause pain. If they leak blood this can cause yet more irritation and thus even more pain.
Painful sex (Dyspareunia)
Many women with endometriosis experience pain whilst they are having sex. It is probably the second most common complaint after painful periods, and can be an extremely upsetting problem too. Not only can painful sex damage a woman's self esteem, it can also have devastating effects on her relationship with her partner or husband When a woman suffers from painful sex, it can be extremely embarrassing and awkward to talk about it with her doctor or gynaecologist. Talking about our love lives to our doctors isn't exactly an easy thing to do. However, it isn't normal to feel pain during sexual intercourse, and the longer the problem is ignored, or avoided, the more likely it is that the problem will be left untreated. If endometriosis is the cause of the pain with sex, then it can be sorted out. Many women have had surgery for their endometriosis and have found that afterwards they have felt much better. Where there was once pain with making love, they have found that they've actually been able to enjoy themselves once again, and relax without the fear of pain. Some women find that they have pain during intercourse, whereas others find that they suffer from intense bouts of pain afterwards. Sometimes this pain can last for days, as supposed to hours and can bring misery and upset to a relationship. Some women find that they suffer from so much pain with intercourse, they decide that it's easier not to try making love at all. As with other pain that women feel, there are different types of pain experienced with sexual intercourse such as:
- a deep, aching pain
- a sharp, stabbing pain
- a deep, burning pain
- an intense, jabbing pain
Some women say that it feels as though they can feel something being knocked against and that they feel bruised and sore afterwards. Other women have complained of pain after an orgasm, to the point where they suffer from intense cramp like pains. When I mentioned this type of pain to my gynaecologist, he thought that it might be a circulation problem. As I mentioned before, some women do complain of bad circulation when they suffer from endometriosis, so no doubt this is yet another side effect of the disease. Sometimes the pain may only be felt at certain times of the month, or in certain positions. Some women are able to let their partners know what hurts and what doesn't hurt. It's a question of finding the right way and the right time of the month, and usually they're able to make love without too much pain. However, sadly this isn't the case with other women. They're not so lucky and find that it doesn't matter what time of the month it is, or what position they try. No matter what, it still hurts and it becomes easier to avoid sex altogether. Dyspareunia is usually associated with endometriosis found in the Pouch of Douglas (the pouch which is found behind the uterus and extends between the vagina and rectum), on the utero-sacral ligaments or the recto-vaginal septum. It may also be associated with cysts or implants on the ovaries, the vagina or the cervix. If the endometriosis is located in these places, then the pain experienced may be due to stretching or jarring of the endometriosis. If cysts are located on the ovary the pain may be due to compression of those cysts, particularly if the ovary is held rigid by adhesions. Some women complain of pain after sex that can last up to days. This pain is usually a deep aching pain, and is probably due to organs being pulled and knocked about that aren’t supposed to be, because of endometriosis and adhesions. If the pelvis is “frozen” by adhesions, or if a woman has a retroverted uterus (a uterus which is tipped backwards), this too can cause painful sex.
Pelvic pain which is associated with endometriosis may not always be felt during a woman's period. It can in fact, occur at any time throughout the month. Many women complain of feeling different types of pain at different times of the month, and because their pain isn't cyclical, or "in tune" with their menstrual cycle, doctors will sometimes dismiss it altogether. Women who feel this type of pain describe it as:-
- a dragging sensation
- a pulling sensation
- a constant dull ache
- a throbbing sensation
- a deep heavy sensation
These different sensations and types of pain can come and go throughout the day. Some women find that they never seem to have a moment to themselves, because the pain is always there, lurking away in the background. Other women find that they provoke their pain by doing certain activities, such as walking too much, lifting heavy objects, or just sitting in an awkward position. The pain may be felt throughout the entire pelvis, neither in one particular place or another. Sometimes it might be felt in on particular place on one day and then another place another day. Sometimes it can be felt at certain locations at different times of the month, regular like clockwork. There are some recognised causes of pelvic pain in women with endometriosis, and these include:-
- Stretching of adhesions and scar tissue. If the pelvic organs are matted together by dense adhesions or scar tissue (fibrosis), then this will interfere with their usual movements, constricting them and distorting them. When a woman moves in certain ways, or lifts heavy things, these adhesions can pull, and it can feel as though her insides are literally being ripped apart.
- Coincidental Pelvic Inflammatory Disease
- Symptoms of Irritable Bowel Syndrome due to endometriosis on or in the intestine
- Tension on the endometrial implants
Although I mentioned an incredibly long list of symptoms at the beginning of this page, I felt it important to only write about the main three symptoms. I could carry on, but it is just too much to write and also to read. One other symptom that I would like to mention, is ovulation pain. Many women suffer from intense pain during ovulation, when they have endo and describe the pain as being knife-like. I can vouch for that particular pain. It does feel as though I'm being stabbed in my ovary at certain times of the month. Other times it just seems to throb. As I mentioned before, if anyone should suffer from any of this pain, then it's not normal. Painful periods, painful sex, or constant daily, grinding pain isn't something that women have to endure, just because we're women. This isn't pain that we should learn to live with, and it has nothing to do with "normal" period pains. I have been told on several occasions that the pain from giving birth has been easy compared to the daily pain of living with endo. One woman even told me that her pain from a hysterectomy had been nothing compared to her pain from endo. So if that doesn't make you sit up and think, then I don't know what will. Whatever pain you feel, or whatever symptom you have, don’t let the doctors tell you that there is nothing wrong. If you find that you’re unable to conceive, that your periods are particularly heavy, or that you’re unable to live a “normal” day-to-day life because of exhaustion and pain, then please go and see a doctor. You don’t have to suffer in silence. You really don’t.
Tell doctors what's what
No energy or motivation
You need to see a psychologist