Happy New Year!

I know I'm a couple of days early in saying Happy New Year but who’s counting.

I wanted to focus a post on all of you lovely and brave ladies. I hope you have been able to have some fun over the festive period and see friends and family.  It’s miserable to be poorly over Christmas and feeling like everybody else is having fun. If this has been the case for you then I hope you are feeling much better.

My past two years I have been really poorly over Christmas so I know what it feels like. This year we didn't manage to go to family for Christmas day as I wasn’t well enough. I did however manage to have a nice quiet day with my other half and to eat Christmas lunch which I was very grateful for.

I hope that this year you find some answers to your Endometriosis, Vulvodynia, Vestibuldynia, fertility problems or any other problems you are going through. Stay strong and keep in touch, I’d love to hear from you about your experiences and hopefully we can in turn help somebody else reading this.

Also not forgetting Partners, Consultants, Nurse Care Practitioner, Physiotherapists, Osteopaths, Pain psychologists, Alexander Technique teachers, friends, family and all the staff, trustees, fund raisers and volunteers at Endometriosis UK, both the Vulva Pain Society and the LVPSG  and the Happy Pelvis e-mail support group. If I have forgotten anybody please forgive me.
Thank you for all you have done this year in supporting and using your expertise in treating us ladies. For me, you know who you are.

Wishing you strength and a much happier and healthier 2012!

Lily-Lou x

Wheat and Dairy Free recipes for Winter

I thought I would share a couple of dairy and wheat free recipes with you. Both of these recipes are using spelt flour, which is obviously wheat free but is not gluten free. I buy Dove's organic wholegrain spelt flour. This first recipe below is from the back of the spelt packet.

Roman Style Bread

Ingredients

500g Wholegrain Spelt Flour

1/2 tsp Salt

1 tsp Quick Yeast

1 tbsp Honey

400ml Warm Water

1 tbsp Olive Oil 

Preheat oven to 200C/Fan180C/400F/Gas 6. In a large bowl, mix together the flour, salt and quick yeast. Dissolve the honey in the water and roughly mix it to the flour. When the dough is craggy, add the oil and mix well. Knead or work the dough for a few minutes, then divide between 2 x 500g bread tins or place on a large, well oiled baking tray for an artisan-style loaf. Cover and leave to rise for 25 minutes in a warm place. Bake in a pre-heated oven for 25 minutes if using a baking tray, or 40/45 minutes if using loaf tins.
I also add seeds, rosemary or olives sometimes to the mix, just add whatever you fancy. 

Festive Winter Crumble

Ingredients

275g spelt flour, pinch of salt

50g Oats

175g brown sugar

200g unsalted butter, cubbed at room temperature

2 tsp ground cinnamon
1 tsp nutmeg
Packet of frozen mixed berries

Preheat the oven to 180c/350F/Gas 4

Place the flour, oats, cinnamon, nutmeg and sugar in a large bowl and mix well. Taking a few cubes of butter at a time rub into the flour mixture. Keep rubbing until the mixture resembles breadcrumbs. Butter a 24cm/9in oven proof dish. Spoon the berries into the bottom, then sprinkle the crumble mixture on top. Bake in the oven for 40-45 minutes until the crumble is browned and the fruit mixture bubbling. Serve with thick cream or custard.

Fertility Nurse Talk

Both my partner and I found the presentation by Helen Graham, Fertility Nurse at the Royal Surrey Hospital very useful. She talked about hormone levels during your cycle and when ovulation happens, she said that its best to have sex three days before ovulation then every three days during your fertile time to try and catch the egg.

I obviously knew to have a varied diet full of different colours to get all of the nutrients possible. To keep saturated fats to a minimum i.e. cakes and bakery items and to keep within your BMI for your height and weight and to include exercise. The advice was also to keep alcohol to the recommended safe limit and stop smoking but I was surprised to find out that caffeine effects fertility! Not a problem for me, more for my other half and his new cafetiere! My down fall is having a sweet tooth but I intend to drop 7 pounds or so and stay off the sweet stuff, or at least try and make my own cake if I do eat it.

Helen also mentioned to watch out for too much vitamin A as this can cause birth defects. Taking folic acid is needed when trying to conceive and vitamin C and zinc was also important. She said it is useful to check if you are ovulating by using a test. I did this over two days in the middle of my cycle, the first day it came back negative, the following day it said I was ovulating.

However, I had a blood test done at the hospital on day 24 of my cycle to see if I had ovulated and the results said I didn’t ovulate! I was surprised and confused at this after taking the test. The doctor said that the ovulating kits on the high street aren’t very sensitive so may not always be correct. She went onto say that this may not be the case every month for ovulating, it could just be this or some months that I don’t. We now have an appointment at the hospital to talk through our options.

I did speak to Helen regarding taking painkillers and using very hot water bottles regularly. They would normally prefer you to not be taking any painkillers. Although in my case I need them so I am trying to take less of them during the month if I can, whilst trying to keep a balance in pain. I have decided to take a pregnancy test before I take my really heavy drugs each month. The advice for the water bottles was too keep them to a minimum and not too hot. She said plenty of warms baths were a good idea and very relaxing. Obviously if I have a period then I wouldn't be pregnant and can have hot water bottles and all my painkillers.


I was hoping to go with the flow and not get to hung up on trying for a baby but it seems it won't be quiet that simple. I am keeping in my mind that I have come far in this journey as now I can use all of the dilators and have some sex so that is some great progress!

Piri -flippin –formis

After I have my period my Piriformis muscle goes rock hard with a trigger point in it and causes a great deal of pain to run down my left leg and in my buttock muscles and hip. Occasionally this pain is in my right side. I have a foam roller 66Fit Elite Foam Roller- Blue, 15 cm X 90 cm which I use to roll over the muscle to try and break it down. My other half also skin rolls over the area three times a week which Maria showed him how to do. http://www.simplywomenshealth.co.uk/

One of the best things to break it down is to have it dry needled by Brent Osborn-Smith http://www.clickaback.com/ . He uses an acupuncture needle to find the spot of the trigger point. It does hurt when the needle is in the right spot on this trigger point, it gives a very deep pain which goes down my leg and in my groin. After a day or so this does give me some relief so is definitely worth it.

I also stretch out my Pirformis muscle using the pigeon pose along with other poses to stretch all of my pelvic muscles as per the yoga series in Isa Herera’s book  Ending Female Pain, a Woman's Manual: Ultimate Self-Help Guide for Women Suffering from Chronic Pelvic and Sexual Pain. These are specific exercises to stretch this area out without putting the pelvis under too much strain which can increase pain.

My problem is the trigger point keeps coming back. I feel it is somehow connected to my left side of my pelvis where I suffer the worst of my Endometriosis pain. I would really like to know exactly what happens on a biological level to my body during the month. I know my periods are a culprit and cause this continuous cycle to continue.

I am hoping that if I manage to get pregnant it will give my body a chance to calm down. Nine months with out periods plus time added for breast feeding. I have brought a box of Yes Baby to try out this month which includes sperm friendly organic lube, a tube for him and one for me with some ovulation sticks. I’ll report back to you on how I get on and how easy it is to use. http://www.yesyesyes.org/yesbaby.htm 

I also had some great e-mails from fabulous and brave ladies reading this blog suggesting googling  ‘Turkey baster pregnancy’. Not the greatest of titles but I found some useful information. So for this month I also have some 10ml syringes in case I’m too sore to have sex around ovulation time.

I’m off to hear a fertility nurse speak tonight so I’ll also pass on any information I learn from her.  

Keep in touch and let me know how you are getting on and any tips you think are working for you or useful to pass on to both me and the readers of the blog.


Thanks x

Early diagnosis campaign

Since recently sharing the shocking statistics on endometriosis with the government, the CEO of Endometriosis UK, Helen North, has launched an e-petition to campaign for better support to GPs and hospitals in diagnosing chronic conditions. I am sure you see lots of e-petitions and know how they work - 100,000 signatures results in the topic being debated in the House of Commons. We would be most grateful not only if you would be willing to sign the petition below, but if you could forward it to any of your contacts who might also be interested in this cause. This isn't just about endometriosis but about all those diseases that may be common but not well understood or well funded. 

 http://epetitions.direct.gov.uk/petitions/22012 

Thanks so much for your support

Lily lou

Smears

Smears, like me I'm sure its something you do not like having done. Maybe even fear or dread going. I think to be honest that most women do not like having it done but for different reasons to anybody suffering Vulva or Pelvic pain.

I put off having a smear for some time after my last surgery as I was worried about the pain it would give me. I am glad to report that after reading the Vulva Pain Society’s ‘Smears without tears guide’ I plucked up the courage to call and book into have one done. Check out this link and have a read. http://vulvalpainsociety.org/index.php?page=smears-without-tears. 

When I booked the appointment, I asked the receptionist if she could make a note that I had requested a smaller speculum because of Vulva pain and Endometriois. That way there would definitely be one when I arrived for the smear and the nurse would be aware why I had requested this. It was a much better experience than I was expecting. The nurse was kind and took it slowly, the speculum she used was made out of plastic and much smaller than the normal one. Not the metal contraption I remember.

So a big thanks to the Vulva Pain Society and the lovely girls that put the leaflet together! It’s well worth a read for both Vulva pain and Endometriosis patients, especially if like me, you have pouch of Douglas involvement.

I was glad I went for a smear when I did. I had an abnormal bleed one of the following months and one of the first questions the Consultant asked me, “Are you up to date with your smear?”. At least I then didn't have to go and have one done and wait and fret about the results. It was good to sigh with relief.

Update on the Dilators

I normally try and start using the dilators again after about 7-10 days after my period has finished. I let the internal pain from the period calm down. Then as I haven’t been able to use them during or just before the period. I stick with the largest size but I go back to using it for 5 minutes, then 10 minutes the next day and so on until I get up to an hour.  These muscles have to be stretched every day, then I ice.

I’m in new territory now as we are having some sex, this month it was really sore around the vestibule area. I tried my beloved icepack, then felt the need to apply Lidocaine onto the area. Boy that was a mistake!

I had previously been using Lidocaine under a regime of applying it to a cotton wool ball and placing it in the vulval lips to desensitise the area for 8 weeks. This was working really well until I went into hospital for a procedure. Two days later, my intestines and stomach flared up in pain. Following that my vulva looked like the skin had come off and blistered where the cotton wool had been. So I stopped using it. I was told that you can become sensitive to the ingredients that they put with Lidocaine rather than the actual Lidocaine itself. In the States they have compounding pharmacies so you are able to get Lidocaine made up into other bases that you might not react to. But in England it’s the tube or nothing!

Anyway, I thought I would try the Lidocaine again as it had been some time, well I didn’t react well to it. It made my vulva even sorer, redder, and swollen. Not good.  Seven days later and it’s still hot and sore but it’s much better that it was. I kept using ice for 7 minutes a few times a day.

As you know we are trying to get pregnant which is a difficult task when sex is painful.  I tried googling getting pregnant with-out having sex, nothing came up along these lines. Any ideas, I’d love to hear them. I’ll keep trying with sex though, it’s amazing that we could do it. I keep it short for my part so not to make me too sore.

I’m seeing the pain team at UCL next month so hope that they will be able to shed some light and help with some of the pain that I’m experiencing. Fingers crossed.

Diary October 2011

When I started this blog I never wanted it to be 'poor me......' but I wanted it to be upbeat and informative and to be honest and open.  But in being honest I have to say and I’m sure anybody living with Endometriosis, Vulvadynia or Vestibulitus would understand about having bad times and I have to open up and admit that this week was a bad one, as this time of the month always is for me.

Mrs Louis visited Sunday (anybody following this blog will know this is what I call my period) after having period pain for 9 days, I finally came on. I always end up in bed when I am bleeding for a week due to pain, relying on my partner for food and only getting up to go to the toilet. Unfortunately I don’t have any family nearby so we have to just manage. My partner makes me breakfast and lunch before he goes to work, then returns to make dinner and dish out the TLC.

For the first few hours I have unbearable pain that I find hard to deal with. During this time I find that my partner rubbing my hand seems to distract my brain a bit from the pain. It doesn't take it away but I think it confuses my nerves that send signals to the brain. Maybe worth trying. This level of pain  normally calms a little after a few hours when some of the drugs I take kick in, although it is really intense and at its worst for the first three days. The pain medication I take made me feel really sick this time and I couldn't get much food or fluids down which adds to the symphony of symptoms having to be endured.

After my week, it then takes me a few days to get up and about. So for about two and a half weeks of the month at least I'm unable to do much. Then I spend the next week pushing myself to get back to my walking/physio routine before the next month comes around.

During my time stuck in bed my little Compac notebook is a god send and I watch i-player or itv player. I got mine free when I got a new phone via Mobiles.co.uk, it has changed being stuck in bed. During a few days of taking certain medication I find it difficult to focus and read, my partner found me an audio book, Life and Laughing: My Story by Michael McIntyre, click on the link and opt for the
audio version. I love him anyway and think he is really funny and by just listening to him tell his story he kept me amused. That is saying something at this time!!

Being sick this time has meant that I missed the Endometriosis UK Awareness Day, it was being held in London, I’m gutted. I found it a great day the last time I went, I was so looking forward to it. I hope some of you managed to attend, I’d love to hear what you thought of it.

Anybody interested in raising some funds for Endometriosis UK, they currently have Christmas raffle tickets available in books of 10, priced at £1per ticket. Good time to see if your family and friends fancy winning some cash ready for Christmas as 1^st prize is £1,000, 2^nd prize is £500 and 3^rd prize is £250. Look on their website http://www.endometriosis-uk.org/ and order some books if you fancy, it will be going to raise awareness and support women with Endometriosis. Good Luck!!

Anyway I’m now over the worst of Mrs Louis visiting and have to concentrate on some nicer things happening this month. We are celebrating our 15^th year of being together at the end of this month, I want to show my gratitude for all of the support I get from my partner so hopefully it will be fun and illness may bugger off for a bit. One can live in hope eh?!!

Useful physio tips when away and update on dilators

Ahoy me hearties!! I’ve been away with my other half on a cruise from Southampton to the canaries. We sailed on a Royal Caribbean Ship called the Independence of the seas. It’s the second biggest ship in the world.

During my first couple of days on board I needed to roll my gluteus and piriformus muscles as I was plagued with left leg pain and this is normally due to them.  I went to the gym to see if they had any foam rollers, they didn’t. One of the gym staff gave me a great idea to make a foam roller when travelling. She said get a thick magazine, roll it up, tape it to keep its shape and then wrap a towel around it. Ta da, one foam roller!! I didn’t have a thick magazine so in the end I got an apple, put it on a towel as I wasn’t sure if it was going to split, but it didn’t and I managed to roll out those muscles on it.

Following on from my dilator post and using my partners willy as my 5^th dilator, I first tried when we were at home. I have to say I didn’t think of the human element too much, obviously a dilator is made of plastic and stays in shape but my partners willy unless stimulated doesn’t!  

When we were away we tried again and I had to do a bit of moving around to overcome this problem. Third time I would say was sex! Never thought we would get there.

Afterwards my skin on my vulva was hot and sore due to Vestibuldynia and Vulvadynia. I bought an eye mask along with me to keep in the fridge as there was no freezer so I couldn’t bring my beloved ice pack. The eye mask wasn’t cold enough so I ended up using a tip I learnt – I used a can of red bull wrapped in some tissue. I popped it on my vulva, it was colder than the eye mask and a good shape to use as it is long and thin.

I wanted to pass these ideas on as you have to improvise when you are away and I would never have thought of these tips, I hope you find them useful.

Going on a cruise was lovely, I normally carry a cushion around with me everywhere I go as I find sitting very uncomfortable. On the ship they had so many comfy seats that I didn’t have to carry it around with me. That was amazing! It was like a floating hotel, my room was never far away if I needed it. Also the beds are comfy as its an american company, the beds in the states always seem to be big and comfy in my experience.

I know everyone comes back from holiday and normally gets the holiday blues, my tummy started feeling periody a day before we got home, for me this is a sure sign my period is coming in the next 7-10 days. That really made me feel down in the dumps so I have been trying to take it day by day. I wish I was as regular as clockwork to the day or even the hour and if us Endometriosis sufferers had to have it, it would be made easier to bare if we only had pain during a period and not before or afterwards. 

Although I've been having a tough week, I know it did me good to get away, in fact only after being away for a few days I realised how good it was and felt more relaxed. Its good to get away from the four walls you get stuck in, very therapeutic!

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

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! 

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.

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.

Dilators

I have had dilators for years and never really knew how to use them i.e I would just use them as and when without much continuity. I used them for a time a few years ago to help me get over my vaginismus.  It did help.

However, in the last few months I have been using Amielle dilators everyday to stretch the muscles in the entrance of my vagina, when possible anyway.  As I have stage 4 endometriosis I am unable to do anything due to extreme pain except lay down during my period  and i’m normally still in pain after I have finished bleeding so I leave it a few days before using them again.

Amielle Care Set - Vaginal Dilators come in a pack with four different sizes. The ones I have are made from a cream coloured plastic and are conical in shape. They come with a handle (personally I don’t use the handle but each to their own) there’s also a brush to clean them with and a little bag to keep them in. I like these dilators they are smooth which makes them easy to insert and they always feel a little cool and that’s always good when your vulva feels like its auditioning for Londons burning! 

I started by using the smallest size dilator and popping a little YES lubricant on the end. The company YES, http://www.yesyesyes.org/ do a water based  lubricant and oil based lubricant which are certified organic. They do two different sizes, the smallest  sized bottles fit nicely in the bag with the dilators for easy use. I would then insert the dilator into my vagina for 5 minutes a day then take it out to wash ,  followed by putting an ice pack on my vulva for 7 minutes. I set a clock for this as my physio told me that the ice pack increases blood flow and healing to the area up to this time but after this time it starts to decrease blood flow. I have been using  Nexcare Coldhot Cold/Hot Comfort Pack Large which can be put in the freezer for use as an ice pack or popped in the microwave for a hot pack.  I always wrap the ice in something to prevent ice burn. I love the ice! It’s really helped take away any of the burning afterwards. For me it's better than using lidocaine.

Then each day I would do the same routine again with this size dilator but add 5 minutes more until I had reached up to an hour, at this point I moved it around and in and out. Once I had done this then I would move on to the next size and start the routine again. This is really working for me and now I am on the largest size, if you would have told me that at the start I wouldn’t have believed you.

So now my next size dilator is my partners willy! I’ve asked him if he minds me borrowing him, as if he is a dilator i.e. do the same as the above with him instead of the dilators. We can see the comedy value here, I think it makes the situation a bit easier to deal with. So this is my plan. Wish me luck, I’ll keep you all updated.

* A handy hint from a sex therapist, if you use the oil based YES lube on you both then you can also put the water based one on top for extra slide. 


I personally like the water based one as it seems cooler than the oil but this is a personal preference.So I have been putting that one on and the oil based one on my partner.   

August 2011 Diary

Today, I am sat in my night shirt, baggy maternity bottoms (I’m not pregnant!) in a Lily-Lou shaped spot in the corner of the sofa, it’s become shaped like that as I have spent so much time there. I’m having another bleed, the second this month, which is unusual.

I can always guarantee they come at the most inconvenient of times. I had my six year old niece staying with me for the first time, luckily the peak of my symptoms were when she was asleep on Saturday night. This would normally last longer but perhaps as this is a second bleed this is what’s made it different.  I am wanting to try for a baby, how do you cope with having children around and being in so much pain, I’m hoping getting pregnant will help my pain.

 I sent my niece out with my other half on Sunday with a fun mission so I could stay laying down. I plastered a smile on my face for her as I didn’t want to worry her which was ok as Sunday was her last day with us before my other half dropped her off. How do you deal with this when you have children around all of the time?

I suppose you cross that bridge if you are lucky enough to. I also have Vulvodynia and Vestibudynia so having sex poses a problem, one I have been working on for some time. (I’ll talk more about that in another post)

Anyway as I said it’s the second bleed of the month, the first came at day 15 of my cycle, the day before I‘d had pelvic physiotherapy and on my return home I picked up a CD my cousin had sent me months ago. It was a new perspectives CD on Women’s health, called ‘Activate your healing energy’ based on Neuro-linguistic Programming by Olive Hickmott, she has a website entitled www.empoweringhealth.co.uk. It is a very positive CD and I recommend it to everybody. It has made me think of my cycle in a different way. I always had negative thoughts and feelings about my pelvis as it has caused me so much pain and upset. The CD talks about the various stages of being a women and accepting being a women and what it is all there for. It really made me think of that area in a different more positive way. I really think it’s worth a listen to as it is just the cost of a CD, and no expensive treatment as you do the meditations yourself.

The following evening I had a big bleed, I felt I was having a clear out of my system. Maybe something to do with the CD or maybe just a big coincidence?? As I’ve said this has never happened to me before. I’ve only ever bled (spotting) during taking hormones or when I was on the Mirena coil. This however wasn’t spotting and I’m not taking any hormones.

I went to the hospital to get checked out but they were unable to say much except for me to think about having another laparoscopy and send me for one of the glorious trans-vaginal scans! The scanning doctor also couldn’t say much except that he thought I would bleed again and my left side seemed to be stuck together. I don’t want more surgery at the moment, I’ll just have to wait and see what happens next.

Useful Books

One of the best and most empowering things I have done is to read to understand my pain so thought I'd pass on the following books that I have found really helpful. Please let me know if you have any others you recommend or if you have read any of these with your opinions. I have started the list with Endometriosis, next section covers Vulva Pain then onto Pelvic/Vulva Physiotherapy. If you click on the picture of the books I have linked them to Amazon to make it easier for you if you wish to purchase any of them. Happy reading!!

Specifically for Endometriosis 

The best book on Endo I have read which I highly recommend you to read is 'Endometriosis, A key to healing and fertility through nutrition' by Dian Shepperson Mills & Michael Vernon. Dian has Endometriosis and is a nutritionist, she has manged to get her symptoms under control by changing her diet and taking supplements. Other people comment throughout the book on how the endo diet has helped them with their symptoms. The book is also written by Michael Vernon, he is a reproductive physiologist. The book talks in great detail about the body, how it works and what happens when you have Endometriosis.

This is the first book I read just after I was diagnosed with Endometriosis called 'Endometriosis, Natural & Medical Solutions by Kaz Cooke & Ruth Trickey' its an easy to read small book written with a sense of humor. Kaz Cooke has a history of Endometriosis and Ruth Trickey is a herbalist with a nursing and midwifery background. It made me feel better after my surgery as I took longer for the pain to calm down and heal than was suggested on the leaflet given to me at the hospital, they suggested this was normal. 


The second book I read was 'What to do when the doctor says it's Endometriosis by Thomas Lyons & Cheryl Kimball' this is written by a doctor Thomas Lyons based in the states but teaches worldwide his surgical techniques for endometriosis. 






Vulva Pain
'The camera my mother gave me by Susanna Kaysen'. Susanna is an author of novels but in this book she tells the intimate and sometimes humorous story of her struggle to find out why she is suffering vulva pain. I found it easy to read and could understand where she was coming from through some of her story. Good to hear straight from another sufferer. 






'A Headache in the pelvis by David Wise & Rodney Anderson'. David Wise suffered for 22 years with pelvic pain and dysfunction and is and has been symptom-free for years. It is a good read and explains about tense muscles in your pelvic floor but I personally have found Isa Herrera's (physiotherapist) book below easier to read and follow and in more depth than this book. 




'The Vulvodynia survival guide by Howard Glazer & Gae Rodke' is a good read and covers various aspects of living with Vulodynia.










Physiotherapy for Vulva & Pelvic Pain
Often in women with pelvic and/or vulva pain the pelvic floor muscles shorten due to being tight and connective tissue problems can occur which then create more pain. Physiotherapy can help you lengthen these muscles which then allows fresh blood and oxygen to enter the area and heal muscles and tissue.


Another book that I highly highly recommend is 'Ending female pain, A womens manual' by Isa Herrera. Isa is a physiotherapist based in New York where she runs Renew Physical Therapy. It is such an informative book, with diagrams of your pelvic musculature so you can see the layers of muscles and nerves. It is made up of various exercises you can do at home to reduce your pain and work towards getting rid of it altogether. There are pictures all the way through the book showing you what position to be in for the yoga/Pilates etc... I keep it by my bedside table and refer to it everyday.


The second physiotherapy book is 'Heal pelvic pain by Amy Stein'. Amy is also based in New York and runs Beyond Basics Physical Therapy. Again this is a really informative book, it doesn't have as many pictures as Isa's book but it does have an added section of Eat right for a healthy pelvic floor. Well worth a read.