Saturday 28 January 2012

Living with invisible illnesses


I left my house yesterday to be greeted by a neighbour “You’re looking well enough!”  I’m sure he meant no harm but it is so frustrating living with illnesses that are invisible.  There’s a huge difference between looking and feeling well. 

How does he know how I feel? That my vulva is sore, that my left side woke me early. Yes, I have pink cheeks, doesn’t mean that I’m not in pain and struggling!

Struggling just to wear normal clothes for example. When I’m at home I wear maternity bottoms. I have two drawers worth of pants, plain white pants which the elastic is quiet baggy and then the other drawer full of pants that have two cuts in the elastic so that they don’t put any pressure on my tummy. Depending on the level of pain in my tummy will depend on which ones I am wearing. For the last 3-4 years when out of the house I have been wearing high waisted leggings with no elastic in the top as my tummy pain doesn’t tolerate anything else. With them I wear loose fitting dresses, again for the same reason.

But I look well! Being sick has completely taken over my life. So how do you live with that? 

I’m sure that people don’t mean to make life more difficult by making you feel misunderstood but the bottom line is for me this makes living with these illnesses more difficult. I suppose the saying is true that unless you walk a mile in someone else’s shoes you don’t know what it’s like for them.  I’m so grateful to have my Endo and Vulva Pain friends via the blog, Endometriosis UK, LVPSG and Happy Pelvis e-mail group. You really do keep me sane. You know how it is living like this. You just get it.

How do you cope with it?

Last week as with every month, I was stuck in the house due to so much pain from Endometriosis. Do people need to know this, do they even care? Do we just accept that this is just the way it is?

If the shoe was on the other foot and I knew nothing of living like this, would I be telling my neighbour how well they look. Is it meant as a compliment?

Any thoughts or experiences to share, I’d love to hear.

Lily Lou x

Friday 27 January 2012

Update on Dilators


After my blood test results came back in December, I was informed that I wasn't ovulating that month.  The Consultant asked me to come in and see her to talk through our options which I did in early January. 
So option one, to do nothing, just wait and see what happens. Option two, to have some more bloods taken on day 2 of my cycle and then on day 21 and to also look at my partners sperm quality. Option three, to try Clomide first and then maybe think about IVF. 

I opted for option two as it will give us some facts about whether I am ovulating to work with. I'm not keen on taking drugs and would like to fall pregnant naturally. Maybe time to look at acupuncture or something along those lines again.

So this month I am booked in with the HCA in my Doctors practice for my day 21 blood test. Day 2 of my cycle is a little more complicated due to being housebound for the week of my cycle, so my doctors practice have kindly organised a district nurse to come in and take the bloods.

The Consultant told me we should be trying every other day from day 11 to day 17. She asked me if I knew when day 1 of my period was. It turns out I didn’t really know. I thought it was when you got some red blood but she said it was when it was flowing.
This meant this month I tried to use the dilators earlier then I normally would so that I could get ready for day 11. I am going to have to change and go back to a smaller size. As I used the biggest as per normal and I was really sore and made my skin bleed a tiny amount in the vestibule area.  

Day 11, my right piriformis really hurt and was causing pain down my right leg and my left side was sore so we didn’t try until day 12. We opted to used the syringe and I popped my legs up the wall for 10-15 minutes afterwards. Not sure if your supposed to stay there for longer. I will have to have a search on the recommended time for gravity to help. Its day 14 today so we’ll have to see how the day pans out! Ice at the ready!?

I'd love to hear from you, if you have anything you would like to share

Lily Lou x

Thursday 26 January 2012

User Friendly Blog


Welcome to my more organised and easier to use blog. As you will see I have been working hard to make some changes to make it more user friendly. There are now pages at the top of the bog, Home and About Me pages you will already be familiar with, I have just moved them. The two new pages I have added as useful resources for you are Useful books & Tools and Websites.

Also new is a search bar, to search the blog. Just make sure you are on the correct page you wish to search. There is now also the option to follow the blog via your e-mail, just pop in your e-mail address.

I hope this makes it easier to get to any information you may find useful. As always I’d be happy for your feedback.

Lily Lou x

Tuesday 24 January 2012

Happy Birthday Wendy! Nurse Care Practitioner at the Royal Surrey Hospital

I wrote this poem for Wendy Rae Mitchell as a thank you for all of her hard work. She supports ladies at Guildford Hospital, raises awareness both in the medical profession and to the general public. When she is not doing that, you will also find her up a mountain raising money for Endometriosis. It is a special Birthday this year (I can’t tell you which one, as she is a lady!)  I wish her a very happy one filled with lots of fun! x
    
A poem for a special lady
Wendy in her pants of pink
Another mountain to climb
With a smile, a laugh and a wink

We appreciate you so much
You give freely of your time and heart
All in the aid of your Endo girls
With your kindness and knowledge to impart

So proud of you, with the doctors you stood
Explaining the emotional care
The huge importance and impact
Nurse care specialists could have, everywhere

`           Without you as part of the team
 It would be like having fish without chips
Not everybody is lucky enough to have
 A Wendy during their hospital trips

When things are going up the wall
You’re always at the end of a phone
To help us with feelings and thoughts
And let us have a good old moan

You come along to appointments
And offer a willing ear
Which is always a comfort
And greatly helps to alleviate the fear

Personally for me 
I was an inpatient for a week
Had a visit from a friendly face
Which made me feel less bleak

Wendy Wendy, there is only one
You’re made of special goo
You make a difference to our lives
And help us not feel blue

I know without a shadow of doubt
That if endo was a walking thing
You would be popping on your gloves
And jumping straight in the boxing ring

If only it was an open fight 
Against you, it wouldn’t stand a chance
It wouldn’t be around any more
To give us a backwards glance

So the last thing that is left to say
Is thank you and wish you Birthday cheer
And find out who’s round it should be
To get in all the beers!  

Love Lily Lou x                     

Tuesday 17 January 2012

My Story...Part two.

Continued from part one (blog below)..........


I stopped Zolodex in Dec 06. In Nov 07 I made the decision to have excision surgery to take away a nodule in my pouch of Douglas, split my womb from my bowel, clear up my left ovary and take adhesions away. A month after that surgery I came across the books ‘A headache in the pelvis’  written by David Wise and the trigger point manual by Clair Davies . I did a lot of research on trigger point therapy and found out how this was helping a lot of people in the states overcome their pelvic/vulva pain.  

There is a lot of information out there on Endometriosis and Pelvic Floor Dysfunction and the role that endometriosis plays in this. I did some research to find somebody based in London trained in Trigger point therapy and this brought me to Brent Osborn-Smith (Osteopath & Acupuncturist) www.clickaback.com
I went to see Brent in March 08 and he treated me for external and internal trigger points. He found that my coccyx was out of place and I had many trigger points both externally and internally. The treatment is painful but I found it settled down a few days later, I was doing well then I would get my period and it would be agony, then after my period stopped I would feel like all of my nerves had been switched on and would hurt. I would then go and have a session with Brent and again it would be painful but settle down again a few days later and then the cycle would begin again.

I started taking Yasmin in September 08 to stop my periods so I could continue with having trigger point therapy without periods but the Yasmin had the opposite effect and made me bleed nearly continuously for 5 months which made life incredibly difficult and I was unable to go and have any treatment.
Just over one year later,in January 09 I had more surgery to remove another nodule from my pouch of douglas, same place as last time, clean up my left ovary again and my right ovary and remove some endo deposits from my rectum, I had a mirena coil fitted at this time.I bled nearly continuously again. I was in pain all of the time. It was just the degree of pain that went up and down. It made my life unbearable!

In May 09 I went to see Mr Kent – Endometriosis specialist at The Royal Surrey, he took out the mirena coil. He sent me for a trans-vaginal scan, an MRI and referred me to Dr Dow – Pain Consultant. Dr Dow suggested taking Lyrica (Pregablin) which I was very against due to my earlier experience of amitripyline. I started taking the Lyrica in Sep 09 and pushed it up to 300mg a day. This didn’t do much for the pain but did help me sleep which made my days easier.

In April 10 Mr Kent and Prof Rockal (Bowel surgeon) performed a joint bowel re-section, Mr Kent also had to take a small section of the wall of my vagina, my left ovary was involved and my left side needed a clean up. It is now 19 months since the surgery and there is no difference in pain during periods. This type of surgery does help a lot of people but sadly it hasn't helped me. I am still happy that I opted for this surgery as at least the Endo that was there has been cut out so less likely to grow back.

I have lost a lot of everyday fitness after the last few years of just getting through life in pain and then laying on the sofa or in bed and specifically after my last surgery. Every time I start getting on my feet I have a period and it knocks me off my feet for a week or so then I spend the next couple of weeks trying to get back on my feet before the cycle starts again.

In Oct 10 I tried Trimovate for  fissues and  I started using lidocaine on a cotton wool ball continuously for 3 months in the vestibule area on the advice of Wendy Reid. This seemed to be numbing the area nicely until I had flair up of pain after a sigmoidoscopy and now I have become sensitive to the lidocaine.

I have seen Maria Elliott (pelvic pain physiotherapist) since June 2011 http://www.simplywomenshealth.co.uk/ . She has been treating me for connective tissue problems and lengthening the tight short muscles around the pelvis. She has taught my partner to skin roll so I can have this done 3 times a week when possible at home. I now have the confidence to touch my tummy which I didn't have before seeing Maria due to the pain.

Since Jan 11 I have been doing the yoga series in Isa Herera’s book to stretch out my pelvic muscles and being aware and thinking about dropping my pelvic floor muscles using my in breathe.

I have most recently been to see Natasha Curran, Pain specialist at UCLH (I'll blog about this in more detail) http://www.uclh.org/Pages/home.aspxThere is no magic cure for me to end the pain but I have been referred to their physiotherapy department that work with you to regain some level of ability and to improve your quality of life. 

I feel with the team I now have working with me Guildford Hospital, UCLH, Alison, (pain psychologist at Kingston Hospital http://www.kingstonhospital.nhs.uk/Maria and Brent that something will change and life will improve. Maybe getting pregnant will help things?! or at least stop my periods for a while.

I'm hoping that you are still awake at the end of this huge blog. I would love to hear your stories

Lily-lou x

My Story... Part one.

I haven't written my story so far. I'll try to keep it short but it has been going on for years. To make it easier to read and to stop you falling asleep, I'll do it in two parts.
I started my periods at about age 13, they have always been very painful. I was put on the pill by my GP and given strong painkillers and told I would grow out of it. The pill helped with my periods but I still had some very bad ones. I had a cyst on my left ovary at age 17 which was operated on by a general Gynae. (I found this a very painful experience). 

When I was 18, my periods were so painful that I had to stop using tampons and started using sanitary towels. At the end of each period I would have a sore vulva. I went to the doctors and they said nothing was wrong. This pattern carried on but then the pain was there when I tried to have sex (Pain was at the bottom of the opening of my vagina) this then caused Vaginismus, where the muscle would spasm. This was very distressing as I was so young and felt unable to talk to anybody. I continued to go to various doctors, different GUM Clinics. I was tested for everything but it all came back negative and I still was being told nothing was wrong – in fact it was said it was all in my head!! I left many buildings in tears due to misdiagnoses.

Aged 23, I made various visits to my GP and he finally sent me to the Gynaecology Department  – they also said there was nothing wrong and told me to contact Relate Psycho-sexual councillors. Nobody asked me about my periods at this time and I had no idea that the amount of pain I was suffering with them wasn’t normal.

I was finally diagnosed with vestibulitus when I was 26. I was given anti-histamine and lidocaine to help with the pain and trainers to overcome the vaginismus and then went into psycho-sexual counselling (Sensate focus). After trying anti-histamine with no success, I was given amitripyline, (aged 30) I was on them for three months. I had terrible side effects, heart palpitations, sweating, panic attacks etc. I felt like I was on another planet! In hindsight I should of come off them before three months but I was hoping so much that they would work.

I was desperate to do anything that might help my health and decided that after being on the pill for so long I would come off it. My periods were getting worse each month even on the pill. I had always been terrified of coming off the pill. I didn’t have a period for a couple of months. Then they came with gusto, the pain was agony.

My Gynae then tried to put me back on the pill, I tried three different pills on a continuous basis but none of them suited me and I just bled for three months. During this time I was sent to the women’s physio department for bio-feedback to see if this could help with my vestibulitus. The bleeding meant that she was unable to do bio-feedback. The vestibulitus got worse and moved up to the clitoris and the rest of the vagina.

I had a laparoscopy in October 04 in day surgery and was told when I woke up that I would need more surgery with a bowel prep as I had severe/stage 4 Endometriosis with bowel involvement. There was also a cyst present. 
As an inpatient I had another laparoscopy with bowel prep in March 05, my Gynae cleared up with laser as much as possible and moved my left ovary off the bowel, the cyst had gone. When I woke up I was surprised to be told I would be treated with medication, I thought having surgery would cure me. Little did I know! 
I took livial everyday orally and had a Zoladex/Goserin implant  every 12 weeks (puts you into a chemical menopause). I grew facial hair because of the livial! Another joy! So I tried Marvalon and then Kilofem but I still bled and had pain.

My Gynae didn't operate on the Pouch of Douglas as it is a highly complex and high risk area. He frightened me by telling me the risks associated with more complex bowel surgery. So I put the idea of further surgery to one side and then tried acupuncture and Chinese herbs for 18 months with Trevor Wing http://www.naturalgynae.com/nav7.html. This helped my overall health but didn't touch the pain I was still suffering. Trevor did a food intolerance test due to some of my symptoms and it reported I was sensitive to wheat and cows dairy. I am still wheat free now and it definitely helps with bloating and extra pain. The dairy I don’t notice much difference but have stuck to eating sheep, goats or soya due to the hormones used in cows dairy. I don’t eat red meat but that is a lifestyle choice from my younger years.

Part two to follow.... Lily Lou x

Monday 9 January 2012

The Royal Surrey Hospital

I wanted to blog about The Royal Surrey Hospital in Guildford  and my experience of the team there. I have been seeing Mr Kent and team since May 09. I wanted to blog about them as I wish I had been referred to them years ago and if you are looking for a new hospital or one that is more Endometriosis Specialised, this might be the one for you. This link will take you to their website. http://www.royalsurrey.nhs.uk/

I only learnt that they were there when I attended the Endometriosis UK awareness day in London and I went to the talk on painful sex given by Wendy Rae-Mitchell. Wendy is a Nurse Care practitioner at the Royal Surrey Hospital, I had never heard of this position before, in all of my previous hospitals (three) I was just looked after by a Consultant. It took me a while to realise that not all Consultants were what I call super specialists, some are Gynaecologists with a specialist interest in Endometriosis which is not the same as the super specialists. 

The Royal Surrey Hospital was the first hospital to refer me for an MRI, then onto their pain team and Wendy.  My last surgery was a joint surgery with both Mr Kent and Professor Rockall (Bowel Consultant) as I had a bowel re-section. Personally, when having surgery I want somebody who performs lots of these operations and really knows their stuff to minimise the risks of surgery. 

I was really well looked after before the surgery and afterwards. Wendy rang me the day after I got home and gave me support via the telephone for some time so the care didn't end at discharge. I was so grateful for these calls, it gave me confidence speaking to somebody medically trained and emotionally aware of the impact of Endometriosis and surgery. If I had anything that I was worried about I could talk it through with her or if she thought I should see my GP, she would organise that to happen. It was a much more positive experience than I have had before and made a real difference to the way I felt.

There is also a great support group at the Royal Surrey, there is normally one support group a month instead of every other month as one is a hospital led group and the next is an Endometriosis Uk group

Lily Lou x