Tuesday 27 September 2011

Talk with Women’s Health Physiotherapist Maria Elliott at the Royal Surrey Hospital

I was really happy last night to be part of the talk that Maria Elliott  gave on pelvic physiotherapy. It was part of the hospital led support group for ladies with Endometriosis, run by Wendy Rae Mitchell, Carole Pearson, Julie and supported by Sharon. For more information on Maria see her website is http://www.simplywomenshealth.co.uk/

It was well attended mainly by ladies, although two partners came along which was good.
Maria started the evening by giving a presentation about her background, where she trained, what she does during treatment and the types of patients she treats. With me piping up every now and again from my perspective as an Endometriosis sufferer.

Maria then went on to show what she would do in a session, using me as her model. I have to say if you told me I would be laying down in front of a room full of people in my pants last year, I would have laughed at you! I wouldn’t normally do that and certainly not by choice but pelvic physiotherapy is something I strongly believe in to help the muscles and nerves of the pelvis. I really want to get the word out there.

When I talked about my experience I spoke a lot about Ending Female Pain, a Woman's Manual: Ultimate Self-Help Guide for Women Suffering from Chronic Pelvic and Sexual Pain, this link will take you to the correct book on Amazon if you want to purchase the book. It explains everything that Maria was saying with diagrams and pictures that make it easy to follow and use. It covers learning to drop and relax you pelvic floor, self massage, trigger point therapy, scar mobilisation,  yoga series and lots more. I keep my copy of the book next to my bed and use it all the time for various things. I cannot recommend it highly enough.

I spoke about my last surgey, I had a bowel resection with a small part of my vaginal wall taken out and my left side cleared up at Guildford hospital  in April 2010. It was my sixth operation for Endometriosis  and I have to say the most major I have under gone.  The team at Guildford really looked after me. (I’ll talk about the bowel resection and other surgeries in another post in the future).

 When I got Isa’s book I was still recovering from my surgery. I read the book cover to cover, there is also lots of information for vulva pain as well as pain in the pelvis. In  January 2011 I got my yoga mat and started by doing the first  two  yoga positions, I was so unfit and sore that my legs used to shake after just doing those two. Afterwards I would get into a hot bath with 7 drops of lavender oil Tisserand Lavender Ethically Harvested Essential Oil 20 ml. Then over time I added another position until I managed to be able to do the whole series.  

As time progressed I have added in more exercises from the book and I now use the foam roller (66Fit Elite Foam Roller - White, 15 cm X 90 cm), skin rolling, yoga, stretching my muscles with dilators, castor oil packs, drop my pelvic floor muscles and go for a 20 minute walk. I can only do all these on certain days due to my level of pain and lack of energy but I do these as much as I can. I have found introducing these exercises slowly to be the best way for me. 

I would like to Thank the company Yes for both the Oil and water based organic lubrication samples they sent to me to give out during the talk. They were well received. If you would like to find out more information see their website http://www.yesyesyes.org/


I hope the ladies I met last night will be reading this, you may have noticed that I post  under Lily-lou, a little blog nick name for me, thought I would mention that so not to confuse anyone. It was really great to meet you and I'd really love to hear how you are doing.


I won't be posting next week as I am off on holiday tomorrow, yay! But will be back with you all the week after. I hope you all feeling as well as possible x

Monday 19 September 2011

Diary Sep 2011

I have spent the last week and two days waiting to come on, already having period pain. My best friend has always called having a period ‘Mrs Louis’visiting so that’s kind of stuck with me, it seems nicer in a way to call it that. I think this is due to having to tell everybody about when I’d roughly be due on as this is what our life currently revolves around. My poor fella, he even has to have this discussion with his mates!

 As I am so debilitated during this time, same as you I’m sure and as Endo sufferers are, I am unable to do anything, just lay still. We can’t book anymore than a couple of weeks ahead as my cycle ranges from 30-39days.  I’m not embarrassed to talk about it but sometimes, it would be nice to keep it to myself. If I do fall pregnant than everyone will know quickly, due to the fact people will notice my period hasn’t come as it is so openly planned around and discussed.

We are hoping to go on holiday in the next couple of weeks but I needed to come on first to see when we can go. I hate feeling under pressure to come on, due to an up and coming date and then invariably missing out on so many things. I missed my newest nieces christening earlier on in the year and so many other special days that I won’t get back. It’s been going on years...

How do you deal with this? I try and focus on the better days and laugh when I find something funny as I’ll be crying when it’s not!

I have found a couple of things to make life easier when ‘Mrs Louis is Visiting’. I had to stop using tampons aged 18 due to the amount of pain I was experiencing internally so moved onto pads. I used Always products until I found the Natracare certified organic range. 
I now use Natracare Natural Ultra Pads Regular with Wings x14 which are made from totally chlorine free, natural and sustainable materials. I’m sure this is better for your vulva skin and helps my Vestibudynia and Vulvadynia not flare up at this time. Also during ‘Mrs Louis’s visit, depending on side effects of the meds I'm taking, when going to the toilet I rinse my vulva with water and pat dry with tissue.


When I was recovering from my bowel re-section I found the Dreamland Thermo Therapy Heat Pad, it really helped the pain to lay on, instead of the water bottle I used to have under me. Its better as it is completely flat and you don’t have the top of the water bottle digging in you. It shuts off on its own after 90 mins, just click the switch and it turns back on. It also comes with a removable cover you can wash. You don't have to get up or get somebody else to get up to boil the kettle!
I have read alternative practitioners believe electric heat pads can interfere with your body’s healing system so I only use an electric heat pad during my period now as well as a couple of hot water bottles for my tummy and left leg. Other times during the month I just make do with water bottles. I would use it after surgery again though.

 I’m unable to do anything during a period, the first 3 days are the worst, when I changed my phone contract I managed to get a free laptop notebook. We also now have wi-fi so this has changed some of my time being stuck in bed after my worst 3 days, at least I can now be connected to the world! 

Thursday 8 September 2011

Dairy & Wheat free

One thing that has helped me to reduce some of the bloating and pelvic pain throughout the month, was to give up wheat. I’ve also given up cows dairy but I do eat a little sheep’s dairy. I was seeing Trevor Wing at the time, a specialist in Natural care for female conditions http://www.naturalgynae.com/nav7.html, and he organised a food intolerance test and it came back that I should avoid both the above.

It’s been about 5 years since then, I did struggle for a while. I remember the first time I went into the supermarket with my partner to get the shopping. We were in there for about 3 hours, I couldn’t believe all of the products I was eating that had wheat in them. You know that bread, cakes etc have it in but it was in crisps, gravy, soups, just so much stuff!

Strangely if I ever eat wheat by mistake now, my tummy gets a rash and becomes itchy – weird. I have since giving up other things too. I had two visits to see Dian Shepperson Mills, she also has Endometriosis http://www.endometriosis.co.uk/quest.html. After reading her book ‘Endometriosis, a key to healing and fertility through nutrition’ (see past blog on useful books), I gave up caffeine to help my central nervous system and some sugar. I say some as I still have sugar, I have a real sweet tooth so this has been my biggest hurdle to lessen/give up. Normally when I feel in pain the one thing I want is sugar! I do realize though that along with dairy it’s what they call inflammation causing food. Typical that it wouldn’t be lettuce!

Any way I thought I would share two muffins recipes with you that I make for special occasions that are wheat and dairy-free. All of my wheat and dairy loving friends love them. Even my friends little 2 year old!

Carrot Muffins Recipe:

50g pecans or walnuts coarsely chopped
270g grated raw carrot
1 large apple, peeled and grated
260g spelt flour
1 tablespoon of honey or 250g granulated brown sugar
3/4 teaspoon baking soda
1 1/2 teaspoons baking powder
1/2 teaspoon salt
1 1/2 teaspoons ground cinnamon
3 large eggs
180 ml oil
1 teaspoon vanilla extract

Directions
Preheat oven to 350 degrees F (180 degrees C). Put cases in 18 muffin cups. Peel and finely grate (I use the mixer for this) the carrots and apple. Set aside. Whisk together the eggs, oil, and vanilla extract, add the flour, sugar, baking soda, baking powder, salt, and ground cinnamon. Stir in the nuts along with the grated carrot and apple. Evenly divide the batter between the prepared muffin cups and bake for 20 - 25 minutes or until a toothpick inserted in the centre comes out clean.  



Banana & Chocolate Chip Muffins Recipe:
1 large egg
40ml cooking oil
40ml rice/almond/soya milk
3 mashed ripe bananas
250g spelt flour
125g granulated sugar
1 tbsp baking powder
½ tsp salt
100mg dark chocolate chips  

Directions:                                                                                                                                              Preheat the oven to 200 degrees c (gas mark 6, 400 degrees F). Put the egg, oil, milk and mashed banana into a bowl or mixer and beat together. Then add the flour, sugar, salt, baking powder and chocolate chips and mix.Fill your muffin tray with muffin cases and fill to ¾, should roughly make 12 muffins. They need to bake for 20-25 minutes. or until a toothpick inserted in the center comes out clean, apart from any chocolate.

I'd love to hear if you have any wheat or dairy free recipes you love. I will continue to post more.


Saturday 3 September 2011

Support

For me it’s been really important to be in touch with other ladies also suffering from Vulva and Pelvic pain. Who knows better than somebody that is also suffering too? It’s not just for the support from these great ladies but I have picked up a lot of knowledge specifically following the Happy Pelvis yahoo support group and the LVPSG (London Vulva Pain Support Group)

The Happy Pelvis yahoo support group is an American e-mail support group set up by a lady suffering from vulva pain, she has now recovered but the group still runs. It’s very interesting getting an American perspective, it’s how I learnt about physiotherapy to rehabilitate the muscles and nerves in your pelvis thus helping vulva and pelvic pain.(see previous post on useful books re :Isa Herrera’s book). I loved the title happy pelvis so much you'll see that was the inspiration for the name of my blog!                                                               
The London Vulva Pain Support Group meet regularly in London for support group meetings and they also have an on-line support group which is really informative as well as supportive. The LVPSG have a smears without tears guide, they talk to the training midwifes in Hertfordshire about Vulva pain and raise awareness of Vulva pain along with lots of other great things. This was the first group I found where there were women also suffering from Vulva pain. Check out their website https://sites.google.com/site/londonvpsg/home

I am a member of Endometriosis Uk, it is a Charity which costs £20 a year to be a member, which I urge you to join. They send you a quarterly magazine, they run regular support group meetings around the country and have an on-line support group, check out their website http://www.endometriosis-uk.org/ . They are based in London. We need to raise awareness of endometriosis, it affects 1 in 10 women and lots more people if you include all of the supportive partners and family that you being sick also affects. I have found the on-line group to be supportive and really useful talking to other ladies especially after/before surgery's.

The Vulva Pain Society is a charity which was set up in 1996 by a doctor and a nursing sister to support women with Vulva Pain. Check out the website http://vulvalpainsociety.org/
Another endometriosis charity is the She Trust http://www.shetrust.org.uk/index.php based in Wolverhampton, I believe they hold support groups in that area.
The Pelvic Pain Support Network is another great site to look at http://www.pelvicpain.org.uk/

I wouldn't be able to write a post on support without mentioning three amazing supportive professionals. 
Wendy Rae Mitchell is a nurse care practitioner at The Royal Surrey Hospital, she helps me through tough times especially in the last year following my bowel re-section for Endometriosis. When I came out of hospital she called me daily to see how I was, which was fantastic to have that medical experience at the end of a phone, it made me feel so much better. Wendy is the emotional support you need when suffering with Endometriosis and is always there for a chat if I need her. She also runs a hospital led support group at Guildford Hospital and raises funds for Endometriosis in her down time. 

Brent Osborn-Smith is an Osteopath and Acupuncturist based in London's Sloane Square, he did some of his training in the States and France. He treats me by using Osteopathy, Acupuncture and dry needling to help rid me of trigger points, dry needling is particularly helpful for trigger points. Brent has been really supportive and over time helped me to focus on the positives. http://www.clickaback.com/


Maria Elliott is a Womens Health and Pelvic Pain Physiotherapist, she trained in Dublin and has practised in Chicago and France and is now working in the UK. I have only been seeing Maria for a short time but she is very knowledgeable, easy to talk to and very upbeat. She has helped many women in pain, I found her through a personal recommendation. She is doing both skin rolling to free up my connective tissue and working to elongate my pelvic floor muscles.
http://www.simplywomenshealth.co.uk/


By joining some/all of the charities we, the ladies suffering in pain get a voice. We can help raise awareness of these conditions so that other ladies don't have to follow our journey and may get diagnosed quicker and easier and get the correct treatment before too much damage is done in the pelvis and makes healing a difficult thing to achieve.