Watch our presentation online!

This week is Endometriosis Awareness Week and to celebrate, we have made a videostreaming presentation with Womens Health Queensland Wide that you can watch free online.

There are 3 presentations that talk about all the different types of pain you might have.

We hope you enjoy them and would love to hear your thoughts.

The presentation is at www.womhealth.org.au and click on 'videostreaming' under Quick Links.

With best wishes for a Happy Endometriosis Awareness Week,

Susan Evans

Headaches at period time

Sheila is a 30 year old woman who came to see me with bad headaches at the beginning of her period. They had always been a problem and made her periods even more difficult to cope with.

Lots of women with endometriosis have headaches at period time. Sometimes it is obvious that these are a type of migraine headache, but other times they just seem to be bad headaches. There are two types of period headaches:
1. One type due to a rise in prostaglandin chemicals at period time
2. Another type due to a fall in estrogen hormone at period time

Before deciding on how best to help her headaches, I asked if medications like ibuprofen or naprosyn helped the headache. They did. This means that her headaches were due to a rise in prostaglandins, rather than a fall in estrogen. The best treatments for this type of headaches are either:
1. Regular ibuprofen/naprosyn started 1-2 days before the headache and continued for a few days, or,
2. A mirena IUCD in the uterus.

Sheila had a mirena iucd inserted in the uterus, because she also had painful periods and hoped that this treatment might help more than one problem. I inserted the Mirena under anaesthetic, because it can be painful to have one inserted in women who have not had children, and especially in women with a painful pelvis. Sheila had some irregular bleeding and some crampy pains for the first few months, but 3 months later, she had no headaches at period time and only very light pain free bleeding at period time.

There are different treatments for women who don't find that ibuprofen or naprosyn help their period headaches, and for women who get headaches at other times too.

To Lindsay with Interstitial cystitis

Dear Lindsay,

Thanks for joining my blog. I was very sorry to read about your bladder problems which make the whole endometriosis thing even more difficult.

Regarding diet and medications, I have a few suggestions:

1. Although there is quite a long list of foods and drinks that can upset the bladder of a woman with IC, often only a few of them affect each woman. So, if you can find the particular things that bother you, then you can still have the other things that don't. Often it is easier if you cut out all the things on the list completely to start with, and see if your bladder improves. It should improve within a few days if diet is an important trigger for you. If your bladder doesn't improve, and you have cut out the triggers completely (not just cut them down) then diet may not be an important factor for you. If it does make a difference, then you can add things back into your diet one at a time and see which foods affect you. If not, then that food is OK for you.

2. What you will find with IC is that you will have good times and bad times. During the bad times, you need more medication and during the good times, you might be able to take less, or sometimes stop it for a period of time. It depends how bad your IC is.

3. I usually recommend amitriptyline in low dose first, because it often helps, but also because it also helps other problems that a lot of women with endo have i.e. headaches and sharp/stabbing/burning pains. It also helps sleep. If you start on just 5mg, and take it with dinner or early in the evening, then most people can take it. 5mg is just a starting dose, but once you are OK with it, you can increase it to somewhere between 5mg and 25mg daily. You can work out yourself which dose helps your bladder most, but doesn't make you too sleepy.

4. If amitriptyline doesn't suit you, then I usually recommend either solifenacin 5-10mg daily which is more expensive but usually really well tolerated, or oxybutinin a 5mg tablet 1-3 times daily which is less expensive but can cause constipation and a dry mouth. Often the best thing is to take a bit of amitriptyline (5-10mg) with some solifenacin. I know you don't like taking medications, but your symptoms are hard to treat without it.

5. Remember not to try and cut down on your fluids, as the more concentrated urine is, the more it irritates your bladder. Generally about 1.5-2 litres of mostly water daily is about right. More if you live in a hot climate.

6. A lot of women with endo and IC, also have pain with intercourse, and often have pain from tight pelvic floor muscles that go into spasm, so be aware that some of your pain may actually be from your pelvic floor muscles. You can check by putting a finger just inside the vagina and pushing backwards and sideways. If it is sore, then your muscles are probably painful. If you find tampons painful, this is often also a sign of painful muscles. Its another of the pains you don't see at a laparoscopy.

Hope this helps. If you need a list of diet triggers, it is in our book in the chapter on IC treatment. There is also info on medications and some of the treatment options if these dont help, as well as a plan for how to manage a flare up in symptoms.

Best wishes,

Susan

35 years old with lots of different pains

Molly is a 35 year old patient of mine. When she was 28, she had bad period pain and was trying to become pregnant. She had a big operation with excision (cutting out) of endometriosis and then had 2 children.

Molly came to see me again recently with lots of different problems, sure that she had her endo back again. Sex was painful, period were painful, she was going to the toilet all the time, there were frequent headaches and her bowel was very irritable. At her laparoscopy, I found only 2 small areas of endo. Otherwise all had healed very well from her previous surgery. She felt confused that she had so much pain, but very little new endometriosis. I explained that there is a much 'bigger picture' to endometriosis than just the black lesions in the pelvis.

Women who have EVER had endo, have a higher chance of getting several other painful conditions. Molly had a painful uterus (the period pain), interstitial cystitis (the bladder troubles and painful intercourse), chronic migraine (the headaches), food intolerances and a sensitised bowel. She doesn't need any more surgery and she doesn't need any hormonal treatment/Lupron.

We are treating her problems with dietary changes (her bladder and irritable bowel), amitriptyline (for her headaches and bladder) and a mirena iucd (her period pain).

Is my period pain normal?

Women only know what their own period feels like. They can't compare it with their friend's period pain. Sometimes they wonder if their periods are really normal and they are just weak in some way. It's a dreadful feeling to wonder if 'its all in your head'.

Normal period pain should only last 1-2 days, and it should go away almost completely on the oral contraceptive pill and period pain medications like ibuprofen or naprosyn taken early before the pain is bad.
If your period pain lasts longer than this, or if these medications dont help you, then it is not normal period pain.
An ultrasound scan is usually normal in most women with endometriosis.

Too young for endometriosis?

It's really sad that some teenagers are told that they are 'too young to have endometriosis'. They don't get the help they need and suffer a lot of period pain.

Doctors used to think that endometriosis was an uncommon problem of women in their 30s and 40s. We now know that's not true. Endometriosis in teenagers is common, but it can be difficult to see at a laparoscopy and almost never shows on an ultrasound.

Some period pain with periods on the first day of a period can be normal, but if you have any of the following problems, you could have endometriosis:

* Period pain that lasts more than 1-2 days each month
* Period pain that doesn't get better on the contraceptive pill
* Period pain that doesn't get much better on period pain medications like diclofenac, ibuprofen, mefenamic acid or naproxen.

If you have bad periods, the teen website at endometriosis new zealand has teenagers just like you. Check out www.me.school.nz

Best wishes,

Dr Susan Evans

Bladder Troubles

Many women with endometriosis also have bladder troubles. These can start even after all the endometriosis has been removed. The sort of troubles they have include:

1. Frequency (going to the toilet a lot)

2. Urgency (needing to rush to the toilet)

3. Nocturia (getting up at night to go to the toilet)

It's also common to have pain with intercourse because the bladder is painful and pressing on it during intercourse causes pain.

Some women have times when their bladder is especially bad and they think they have a urine infection. If the urine is collected, often there is no infection found. Just a bit of blood in the urine.

This problem if often due to a condition called Interstitial Cystitis. If you have this problem, there is lots that can be done. We would love to hear your story.