Public Forum Thurs 17th Feb Sydney

Dear Readers,

A very exciting public forum on pelvic pain will be held in Sydney on Thursday 17th February 2011. It is the evening before a seminar for medical specialists. If you are able to attend, it would be lovely to meet you. This is the program and I believe that attendance is free of charge. come early though, as there has been lots of interest.

Happy Christmas and best wishes for a healthy 2011

Susan

The Women’s Health and Research Institute of Australia,

In conjunction with the School of Women’s and Children’s Health of the University of New South Wales, presents:

“A Public Forum on Chronic Pelvic and Perineal Pain”

Royal Hospital for Women (Sydney) Auditorium

17^th of February 2011

17:00 - 18:00 The Auditorium opens and is available for seating on a first come first serve basis

18 - 19:00: Short Presentations by Panel Members

Milton Cohen current understanding of chronic pelvic pain

(rheumatologist)

Susan Evans Endometriosis, the 'whole picture'

(Gynaecologist)

Deborah Bush The role of the community in management of Chronic pain

(CEO Endometriosis NZ)

Sherin Jarvis Physiotherapy for chronic perineal pain

(Physiotherapist)

19 - 20:00: Q&A session

Panel members: Milton Cohen, Susan Evans, Deborah Bush, Sherin Jarvis, Eric Bautrant

Moderator: Thierry Vancaillie

Botox to treat my pelvic pain????

We have all heard of BOTOX to relax the muscles in the face and hide wrinkles, but botox has many other uses too. Children with cerebral palsy have botox injections in the muscles of their arms and legs to stop crampy muscle spasms.

Similar crampy, tight, shortened and painful pelvic muscles are very common in women who have:

* Pain with sex, tampons or cervical smear tests

* A painful ache in the pelvis for a day or so after intercourse

* A pain on the side which can come on suddenly at any time, just like a cramp

* Being unable to pass urine sometimes, even though you really want to

* A sharp pain up the bowel, or,

* Difficulty sitting for a long time, or pain on moving

* Feeling much better after a hot bath or wheatbag

If this is you, then you can check yourself by putting a finger inside the vagina and pushing on the muscles around the opening of the vagina and at the sides of the pelvis about half way up the vagina. If you feel your pain when you push on the muscles, then spasm in these muscles are probably the cause of that pain.

The best treatment is physio with a special pelvic physiotherapist who knows how to treat women with tight painful pelvic muscles. Treatment usually starts with learning relaxation techniques and then training the muscles to work normally. If your problem is severe and you need some extra help, then BOTOX might help. This relaxes the muscles for 3-4 months, which allows you to feel better quicker and work on the physiotherapy needed to stop the muscles becoming tight again. It does need to be injected under an anaesthetic and the pain doesn't improve for around 2 weeks after injection.

Pain from pelvic muscles is a commonly missed diagnosis. It doesn't show on scans or a laparoscopy, but is very very painful.

My doctor says I should see a pain specialist. Why?

It is hard for any doctor to know about all the different pain treatments, so nowadays there are doctors who specialise in pain. They are called pain medicine specialists. Many started their career as anaesthetists (the people who put you to sleep for an operation), but now spend most of their time caring for people with long term pain. Others come from different areas of medicine.

Lots of women with endo have chronic pain, but so do other people in the community. There are those with back pain, migraines, trigeminal neuralgia (pain in the face), pain after a bad leg injury or pain from diabetes. Pain specialists believe that chronic pain is a medical condition itself, rather than a symptom of something else. There may have been something (like endo) that started the problem, but overtime, there has also been a change in the way the nerves send pain signals which has made everything worse and kept the pain going. They use special medications, lifestyle changes, physio and psychological support - and they work with your gynaecologist to help you have as little pain as possible.

If you have pain on most days, or have sharp, stabbing or burning pain, and are lucky enough to live near a pain specialist, they are a great idea.

Improving your man's fertility

It takes two to make a baby and there are lots of things your man can do to help.

A semen test can measure how many sperm he has, how well they move, and how many of them are normal. However it doesn't show if there is any damage to the sperm. This is called DNA fragmentation. Higher levels of DNA fragmentation result in a higher chance of miscarriage, infertility and ill-health in the child.

Your man can improve improve his sperm quality and cut down DNA fragmentation by:

1. Stopping smoking

2. Improving his diet and avoiding overweight. Less fat and more fibre

3. Cutting down on alcohol, and caffeine.

4. Avoiding recreational drugs

5. Taking a vitamin supplement with B Vitamins, Iodine, Folate and Zinc.

6. Avoiding tight fitting underwear

7. Avoiding hot tubs, saunas and electric blankets

8. Checking with your doctor whether his medications affect fertility

9. Avoid environmental chemicals such as lead, pesticides and organic solvents or wear protective clothing

10. Have a blood test for Vitamin D and take a supplement if this is low

Women also benefit from a multi-vitamin and having their Vitamin D checked with a blood test.

Susan

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