Some things you should know if you have or suspect you have endometriosis:

1.      Period pain that is not relieved by over the counter pain relievers is not normal, if you are concerned there may be something wrong, see a doctor.

2.      If you suspect you have endometriosis but are being told nothing is wrong, keep trying, find another doctor. Do not put up with the pain.

3.   Having a child does not cure endometriosis. If you want to have children have them, but do not have them to cure your condition. If your doctor is suggesting this, see another doctor.

4.      Having a hysterectomy is not a cure either, it can be successful in managing the condition, however there are cases of women who have had it return after a hysterectomy, and while rare men can also get endometriosis. Please make an informed decision before consenting to having a hysterectomy, learn all the facts first, be sure it’s what you want. It is your decision, not the doctor’s.

5.      Not all women with endometriosis are infertile; it is NOT the leading cause of infertility. While there is a much higher risk of infertility the diagnosis does not automatically mean you are infertile.

6.      The level of pain is not a reflection of the severity of the disease. Some women have a lot of pain but the disease is minor, others have very little or no pain and have a severe case.

7.      There are endometriosis specialists around, they are much better able to recognise and treat the condition than a regular gynaecologist. Do your homework and find the best doctor you can, if you have to travel to see an endometriosis specialist consider doing this. (An endometriosis specialist is a gynaecologist that specialises in endometriosis)

8.      If getting surgery, look for a surgeon who removes the endometriosis completely, some doctors treat it like a cancer and cut it out, others burn off the top with a laser. There is a much better chance of it not returning if it is cut out completely.

9.      There are various hormonal treatments available to manage the condition, they are also not a cure but can provide relief and can control the progression of the disease. There are side effects with many of the treatments, ask your doctor about what to expect when starting a new treatment.

10.  Your pain is real! Make sure you have adequate pain relief available; you may require strong prescriptions and doctors may be reluctant to prescribe them. Don’t accept it if you are not getting strong enough relief, you can change doctors or be persistent with your current one.

11.  Endometriosis can spread to other parts of your body creating a variety of symptoms. Bowel issues are common; some women may find relief from extra fibre or fibre supplements, probiotics, and changes in dietary patterns to reduce inflammation and gas. (You may need to see a dietician in severe cases to learn to manage the symptoms)

12.  Get enough support, it’s very isolating to have any chronic illness and talking to others with the same condition can help deal with a variety of issues, including emotional.

13.  It is difficult for friends and family to understand what you’re going through, provide them with educational material if they are interested in learning; encourage them to learn.

14.  It is a strain on partners as well. They have to watch you suffering and not know what to do. Endometriosis can impact on intimacy; in some cases it can tear relationships apart. Try to involve your partner where possible, encourage them to understand what’s happening to you. You may need to find a variety of ways to maintain intimacy, if your doctor is not helpful consider seeing a sex therapist.

15.  Diet and exercise can help manage some symptoms; some women find relief cutting out certain foods such as wheat, dairy, red meat, eggs, sugar. You may need to have some trial and error to find what diet works best for you. (If cutting out food groups be sure you continue to meet your nutritional needs)

16.  Maintaining exercise routines can be difficult when exercise aggravates the pain, as best as possible maintain your fitness; if exercises aggravate symptoms try different types until you find a regime that works for you. Some exercises may even help the symptoms (e.g. yoga).

17.  Some women find herbs beneficial e.g. vitex, raspberry leaf, cramp bark, black cohosh, valerian.

18.  Common supplements that may help symptoms include evening primrose oil, fish oil, B complex, magnesium, vitamin C and E (vitamin supplements can only be of assistance when there are deficiencies)

19.  There are a variety of other complementary therapies that can be tried, including acupuncture and therapeutic massage.

Be sure to tell your doctor what other therapies you are trying, it is important your doctor knows what herbs and supplements you are taking.