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.