Tuesday 4 September 2012

Natal Hypnotherapy

After feeling like all of my power was being handed over in the birth of my son due to having a c-section, I was thinking about how I could regain some of this power. Although I couldn't do to much about my body, I thought there was nothing stopping me and my partner doing some relaxation CDs to be really chilled and happy for the birth.

As I have had so much surgery and the c-section will be in a theatre it was feeling like I am going for another procedure or more surgery rather than the birth of my baby. I started looking for relaxation CDs for birth and came across this web site http://www.natalhypnotherapy.co.uk /. On the website it has great testimonials from people that have used these CDs including lots of midwives that support the use of them.

I mentioned them just after my pregnancy yoga class and a lady waiting to go into the normal yoga class after me said she had used the CD's when she was pregnant and thoroughly recommended them. I also went onto the Netmums forum and put in Natal Hypnotherapy in the search bar and lots of people on there had used them and again recommended them. There was also an interview with Maggie Howell, the founder of Natal Hypnotherapy which was a really interesting read. 

I had heard from my cousin regarding her experience of Hypno birthing. She has had 4 children, the first two in hospital, the third was a water birth at home and her last was also at home using hypno birthing. She said she really wished she had known about this for the births of all of her children as the last was by far the best experience of the four.

What I was surprised about was a there was a CD for preparing for a c-section. I thought it was only tailored towards giving birth naturally. 

So I ordered two CD's, relaxation in pregnancy and preparing for a c-section. I have been listening to the relaxing in pregnancy while having a lay down in the afternoon. I completely zone out or fall asleep not sure which and only wake up or become aware when I hear 321 but either way I am feeling relaxed after doing it. Maggie says not to worry if you fall asleep as you will still take in some of the suggestions.

 I am about to start listening to preparing for a c-section, so I will report back on how I find it.

I have also started working with a Natal Hypnotherapy practitioner, Himalee Rupesinghe, she is also a doula. Weirdly my partner happened to spot her facebook page http://www.facebook.com/AllAboutBirth through a colleague liking the page so he contacted Himalee to see if the workshops being run nearby would be relevant to me. Check out her website for more information and for Natal Hypnotherapy courses http://www.allaboutbirth.co.uk/
As I am having a c-section a lot of what would be discussed would be about giving birth naturally so she suggested that it may be more beneficial if we work one to one for a few sessions. 

Its strange that we happened to see this page when we did and I believe it was meant to be as another time I wouldn't have thought much about it. Right from the first e-mail Himalee was really friendly and easy to talk to. During our first session together we spoke at length for ages and I could of continued talking to her.

As this is already a lengthy blog post I will continue about my experience in a couple of days time.

I would love to hear from you if you have any thoughts or experiences on this

Lily Lou x








Monday 30 July 2012

Sorry for the lack of contact - Update

Today I am 29 weeks pregnant and things are going well. My pelvic pain is down from a 100% to 10%!!!!!!! This as you can imagine is amazing. It has had a huge impact on my life and my brain, I am out of the awful cycle of periods that I was stuck in. Which means I have been able to plan and put things in the diary, we even went to Portugal for two weeks holiday. Whoop whoop!


My vulva pain is still there at the moment so for me pregnancy hasn't really changed this although the skin around my clitoris hasn't cracked for a while :-)


I have been absent for a while as I am treating the time while I am pregnant as my healing time so I have been keeping a low profile including not reading the support groups that I am normally very active on. I am giving my body time to allow my central nervous system to calm down.


At 14 weeks pregnant I started pregnancy yoga, which I love. I found it really tough to start with as I hadn't done any exercise for years and even though this is gentle, I had lost a huge amount of strength from being ill over a long period of time. Yoga really helps me with breathing and connecting to my body and baby. I cannot speak highly enough of the yoga teacher, Muriel, check out her website. http://www.mumuyoga.com/


I have continued to work with Lorraine, pelvic pain coach, I blogged about her back in March http://www.radiantlifedesign.com/. I have found working with her very enlightening, I am much more positive and happy in life now and see things differently. 
One of the most beneficial things that I have done with her is to question some of the beliefs I held. I will give you an example, I used to say to myself, nobody understands what its like to live like this. But Lorraine questioned this with me and I realised that the people who also live in this daily pain do understand what it is like to live like this. When I used to think people didn't understand, it used to make me feel isolated, lonely and very sorry for myself. When I then realised it wasn't true and people do understand, I felt differently, I felt understood and not so lonely and sorry for myself. This was a very enlightening moment for me and I have had many since then.


I have had my 20 weeks and another 28 weeks scan and everything is good with the baby. It never ceases to amaze me that after so much surgery, pain and trauma that my body could go on to get pregnant and then grow a healthy baby. He seems strong if his kicks are anything to go by. The second trimester, I had more energy and stopped feeling sick so that was really lovely. Many friends have commented on my general demeanour as seeming different and lighter which was great to hear.
The third trimester, I am more tired and uncomfortable and finding it hard to sleep, along with heartburn, leg and back ache. But compared to the pain I was used to before this, these symptoms don't really bother me to much. I am just feeling really happy and lucky to be carrying this baby and can't wait to meet him.


Obviously with only 10 weeks left to go, I am thinking more about the c-section and going back into hospital but I am working with all of my doctors to gain the best outcome and looking at other ways to help myself. I have been reading and have bought some cd's on Natal birthing so will update you on how I find them.


I hope that everybody is as well as possible and as always would love your feedback and to hear your experiences.


Lily Lou x


Tuesday 1 May 2012

Update on pregnancy news and pain

I am still suffering pain in my tummy and vulva. The pain in my tummy I think is from scar tissue after so much surgery. I am disappointed that my vulva is still sore, maybe even sorer than usual! I was hoping pregnancy hormones would help with that pain. Maybe things will change in the next few months.


I need to go back to icing my vulva twice a day to try and take the inflammation out of it and using the trainers. I stopped when I found out I was pregnant. I was worried about miscarrying and as I was suffering a lot of internal pain I didn't want to add to it by using the trainers.


When I start my period I normally get a really terrible pain from my left hip running down the front of my leg to my knee, on top of pain in and around pelvis, up bum and vagina. Since I have been pregnant I have had the pain from my left hip and leg which as you can imagine made me paranoid I would start bleeding but I haven't. What is this pain? Is it a nerve? I have had it a few times recently without a bleed.


I have had two other worrying times with pain. One evening I had really bad pain on my left hand side of my pelvis. When I had a scan at 7 weeks, there was a small cyst there. I was worried that maybe it was getting bigger, popping or something. The pain went away after 2 hours.


I was also really concerned when I had pain on my right hand side of my pelvis. It felt like a really painful pulling of something. It kept me awake all night. It didn't matter what position I was in I couldn't make it go away. The next day it was gone.


I'm going to see my Obs consultant to have a chat next week as I am so used to sitting through pain, I want to know now that I am pregnant what I shouldn't sit through and when I would need help. I'm not sure they will have the answers. It would be much easier if I could see through my belly and see what was going on. Then I wouldn't worry so much.


The other huge worry I have at the moment is the bleed after c-section. I didn't have any idea you bled after this time until somebody told me "its the mother of all periods!" Obviously this is really worrying me as I am normally taking hard core pain killers and in bed laying still with lots of heat at this time and its horrible. How would I look after a newborn as well? I wonder will this be as bad pain as a normal period for an Endometriosis sufferer? 


Did anybody's period or vulva pain get better after pregnancy?


Although I am suffering pain, I am enjoying being pregnant and not having periods. I am not stuck in bed or at home on a regular basis as I have been for many years. Only the odd day. I even went food shopping today as I had the car. You may not think too much of this but for me its been years since I have been able to do this! I have left the shopping for my other half to carry up the stairs but I am still really chuffed I was able to go.


The first three months of pregnancy were tough going from my normal symptoms then straight into nausea, extreme tiredness and dizzyness etc.. but now that has mostly gone. I feel better and have more energy in the day. I still crash out early at night but that's ok. I am thinking of some things I may want to do over the next couple of months while I can until I am heavy and waddling around like a duck. 


As always I would love to hear from you and your experiences


Lily lou x



Saturday 7 April 2012

I have some great news to share


I’m pregnant! I’m really happy about this news but still feel in shock. After going through so many problems with my pelvis, I didn't think that I stood too much chance of becoming pregnant. Especially as when I had tests in December they said I was not ovulating. Then I fell pregnant.

I feel a little nervous sharing this news too, as I know the journey is not the same for everyone so I wanted to let you know that I was thinking of you.

Just because I am pregnant, not all my pain has vanished. I am still getting pain in my pelvis and up my vagina. My bowel doesn’t behave normally at the best of times but since I have been pregnant I feel like it has gone on strike!  So now the nausea is relieving, I am trying to eat lots of fruit and drinking water and many fluids.  My scar from my bowel re-section is becoming sensitive again. The obstetrician I saw said this was probably due to my uterus starting to move upwards.

 I am happy to not be having periods at the moment!! Long may that last.. Maybe I should think about breast feeding until they are 12 to keep them at bay! Only joking.

We are going to be able to plan a little holiday this year due to no periods. We haven’t been able to do this for years. So that’s really exciting!

I am now 12 weeks pregnant, we didn’t want to tell anybody until after the scan. I have been very nervous, I’m used to pain but every time I was in lots of pain I would panic that maybe something bad was happening. I also found going from my normal Endo symptoms straight to the first three months of pregnancy symptoms really tough. I found the nausea really over whelming and incapacitating. I have been incapacitated on and off for years so don’t have too much patience with it. I felt like I couldn’t complain about any of this though as I was in a lucky position to be pregnant in the first place.

I was also really nervous about the two scans I had. I had my first one at Royal Surrey in the early pregnancy unit, at seven weeks. The lovely Jules looked after us on that day. The early scan was to check it wasn't an ectopic pregnancy, I had to have a trans vaginal scan as it was so early. The few days following were really painful, I suppose that must be due to scar tissue, the pain worried me hugely. I also had a small cyst on my left ovary.

The second scan I had was on Thursday, it was the 12 week scan. It went well. The lovely Wendy was there this time to great us. We got pictures of the scan to take home and I am still staring at them regularly, I still can’t believe there is actually a baby in there!

I have been concerned about my level of fitness and coping with the pregnancy. Maria (Pelvic pain physio) gave me some exercises to do to try and improve my strength. Since my last surgery and also not returning to work, I have lost a lot of everyday fitness.  I have been unable to do them so far but I’m hoping to be able to start next week. I have put my name down for antenatal yoga so hopefully this will help too.

My vulva is still sore and I have had some pain coming from the muscles at the left side of my vulva going through to my buttock muscles. A little better news though, Maria said the right side muscles have started to bulk up a little more which is great news.

I am really hoping that my central nervous system will get a chance to calm down without having periods. Fingers crossed.

I’ll keep you updated. As always I’d love to hear from you

Lily Lou x

Monday 26 March 2012

The Mind Body Connection

Something I am finding really useful at the moment is working with a life, health and wellness coach. Her name is Lorraine Faehndrich, she is based in New York and I do my coaching once a week over Skype with her. Her website is www.radiantlifedesign.com

To understand more about this work I was asked to read a book written by mindbody pioneer, Dr John E Sarno The Mind/Body Prescriptionhttp://www.assoc-amazon.co.uk/e/ir?t=1xhappypelviw-21&l=as2&o=2&a=0446675156. Dr Sarno has conducted research and clinical practice relating to musculoskeletal pain. 


Although Dr Sarno in this book is talking about the back for the most part, this is also relevant to other parts of the body. I think when we hear the words psychosomatic we assume it is in your head but Dr Sarno points out that your head maybe causing you physical symptoms. I think you have to have an open mind but if like me you have been suffering for a long time with nothing helping the pain, then like me you may think what have I got to lose? 


I figured what's the worst that could happen if I worked on some stuck emotions from the past, perhaps I would have a clearer and happier head and the best case scenario would be it could help the pain.


Through out our sessions, it was pointed out to me that I had become disconnected from my body at some stage and my head had taken over. This is so true I am so headstrong, its even been at the detriment of my body. I am learning to listen to my body now.


When my head is spinning with worries or I'm being hard on myself, I have learn't some tools to take time out to breathe properly and just be with my body. This really helps me calm down my brain. 


I understandably have been at war with my body as it has caused me so much pain and stopped my enjoying so much that life has to offer over many years and I have had to fight to keep going. I thought accepting what was happening was giving in to it but I now see that it is actually a huge weight lifted off my shoulders. Lorraine has helped me to accept what's happening now and embrace where I am. Your body cannot heal until you stop being at war with it. I am kinder to myself now. We are strange as we would not treat anybody else like we sometimes do our selves.


All very interesting. I would love to hear your views as always. I'll keep you posted


Lily Lou x

Sunday 11 March 2012

The decision to try for a pregnancy when in so much pain


Back in December I had a negative comment about trying to conceive whilst being in pain and I thought it would be good to post my thoughts and feelings on this subject. As it certainly hasn't been an easy decision to make. Having Endometriosis and having lost my job, does this give me any less right to try for a family? I don’t think so, it’s just been really unfortunate circumstances.

I thought long and hard for a period of time before trying to conceive. As I am in such a cycle of pain and my endometriosis has got to a point where my work stopped my contract. I did wonder if this decision was the right thing to do. But is making no decision doing anything? It certainly won’t change my current situation and a hysterectomy is not an answer to this in a definitive way. You could go all through that and still suffer.

There’s a whole book written about Fear the fear and do it anyway. Just because I’m scared should this stop me from trying? If I don’t try then I feel I would look back and regret it and I personally would prefer to try and know it just didn’t work out than not too try at all. But it still leaves me then wondering and worrying about if I then did fall pregnant and go back to being in that much pain how will I cope with that much pain and a baby. There is no guarantee and in all honesty, no one knows. You just have to base your decision on the facts you know at that time and what you want out of life. It is scary for me as I have no family nearby to help out. But I do have an amazing partner, although he is holding down a full time job so wouldn’t always be around.

Other people have managed it. In my case being pregnant may be the one thing to stop my periods for a while as I can no longer take hormones as they do the opposite for me and make me bleed. Maybe being pregnant will give my nerves a chance to calm down which in the long run will help the pain. I would like to speak to some ladies that have had a bowel re-section and then gone onto have children and see how they are doing. It would be great to hear some positive feedback and also if they still have some pain, how they cope with that and children.

Any thoughts, as always I'd love to hear

Lily Lou x

Monday 5 March 2012

Endometriosis Awareness Week

This week is National Endometriosis Awareness Week! 


It starts today, Monday 5th March until Sunday 11th March 2012. We really need to raise awareness of this debilitating condition. This year Endometriosis UK are focussing on teenagers, this is due to the sheer volumes of us that started experiencing symptoms in our teens and were left undiagnosed and so untreated until much later in life. 


Endometriosis  Uk are using this week to launch their 'Is this Normal? campaign aimed at teenagers and young women, often left feeling alone, isolated and in extreme pain. They have a new blog which talks about periods. Please pass this onto anybody you feel this might help. http://aboutmyperiods.wordpress.com/

One of the easiest ways to for us as women to raise awareness is to talk to those around you. Does everybody in your group of family and friends know what Endometriosis is? Would you feel happy asking them. I really want the next generation not to go through what I have gone through so we need to try and educate them to what is normal and what is not.


The Endometriosis UK website http://www.endometriosis-uk.org/


As always I'd love to hear from you


Take Care and lets spread the word


Lily lou x

Monday 13 February 2012

Bowel resection surgery


After replying to somebody on a forum board with questions regarding my experience of a bowel resection, I thought it might be useful to write a post on this subject.
I had my bowel resection in April 2010. It was the third operation where it was query bowel re-section, until you are on the table, often that call can only be made there.  

My surgeon (Mr Kent from The Royal Surrey Hospital) always says if it was him having the surgery he would want somebody doing these types of operations that does them regularly. Ask how many people they perform this operation on and ask how many they have had to give a temporary or a permanent stoma too afterwards. The more skilled the surgeons the less likely that you will end up with a stoma.

I went to shop for yoga pants before the surgery but none were that loose fitting. I have had a problem with pressure on my tummy for some years. I did find one pair from Sweaty Betty but didn’t end up buying them as they were around £50. Instead I went to JoJo Mama Bebe  and bought some maternity pyjama bottoms. Really loose fitting and really comfortable for £25.

I made sure I did my legs with my epilator so they would stay hair free for a few weeks afterwards. Make sure you take off nail vanish too, they normally tell you this in the paperwork.

List of items I took in
Nightshirts
Toothbrush and toothpaste
Face wash and flannel
Moisturiser
Ipod
Phone and charger
Magazine
Vaseline if bowel prepping.
Dry spray shampoo (I only use Batiste, the others in my opinion are not so good)
Hair band to hide hair, hair bands to put hair up or plait etc..
Brush  or comb.
Pants, socks
Sanitary towels

Before Surgery when still at home -  Using Vaseline was the best tip I ever got when bowel prepping. As some of you will know it makes you poo loads and it gets a bit sore after a while around the anus. Popping on a bit of Vaseline stopped this soreness from happening, which was really good.  I made soups and froze them in one size portions to eat afterwards. My favourite being pea and mint and Carrot and coriander. They are so easy to make and the mint is good for the tummy/bowel after you come out of hospital. Also if possible try and increase your fitness before, I wasn’t able to do this really and had lost lots of fitness over the last few years.

In hospital – The nurses gave me heated gel pack at night to put on my back as I was sore there and they really helped. Mint cordial and mint tea bags are a great thing to have, will help wind and ease the discomfort of the air used in surgery. Afterwards I didn’t eat too much as I didn’t fancy it so I ate mash potato, custard style pots (dairy-free Alpro Soya Vanilla Dessert) Jelly, and nourishment drinks. Make sure you drink plenty of water to keep your stools soft.

Afterwards – After laying on a uncomfortable hot water my partner suggested we buy Dreamland Thermo Therapy Heat Pad, it was much better as it is completely flat. I found that putting my feet up on a raised surface about two yellow pages high helped when going to the toilet, it makes it easier to poo.  Again make sure you drink plenty to keep stools soft and easier to pass. The other thing I was told was to go for walks as this stimulates the bowel to work, sometimes when you’ve had bowel surgery the bowel tends to get into a bit of a strop afterwards and can be a bit sluggish.

Be kind to yourself. Don’t beat yourself up. You’ve been through a lot. I cried afterwards at silly things, I think it was the anaesthetic.  I used forums like the Endometriosis Uk to speak to others that have had this type of surgery for support. I found that incredibly useful as there wasn’t much information out there when I googled it.

I had lots of wind, like never before! Walking seemed to help move it. Even if you are slow walking this should still help. I had lots of strange bowel movements afterwards but this normally settles down after a while.

I had a bowel resection via  laparoscopy so had 3 small holes and one cut below my bikini line about 3 inches long which they took the bowel out of. And they used tools via my vagina as I also had a small part of the back of my vaginal wall removed due to the Endometriosis. 

My scar faded really quickly afterwards when I started using castor oils packs. I didn’t start that for a few months after the surgery though. I was using them for help with adhesions, check out this link. http://www.edgarcayce.org/are/holistic_health/data/thcast1.html. I used a Organic Ivory Flannel  and 250ml Organic Castor Oil - 100% Pure Cold Pressed to make sure it was only good stuff on my tummy. When I looked at my biggest scar one day it had faded to a thin white line!

I hope that some of these tips help. They certainly helped me. If anybody has any others they would like to share, please do.

Lily Lou x

Thursday 2 February 2012

Pain Team at University College London Hospital


I was referred in January 2011 to the Pelvic Pain clinic at University College London Hospital and I finally got my appointment in December 2011 to see Natasha Curran. It was a long wait but so worth it!
Natasha started the consultation asking what my expectations were. Obviously I would like a magical cure but know that is not realistic so I opted for less pain. I found her to be really empathic and really willing to listen to me. At one point she looked me directly in the eye and said “sorry that I couldn't work at the moment”. I was quiet choked by this. It is a big thing for me and the first time a doctor has said that and understood the impact of this.

At the moment due to trying to conceive, they are limited to what our options are. I have been offered a Pundenural Nerve block to try and help with some of the pain I experience from the Vulva, up the bum and clitoris, although she doesn’t think this is the answer. Although I have a needle phobia I am going to go for it. I would normally prefer to be sedated for the procedure but Natasha doesn’t sedate her patients as she likes to be given feedback by the patient during the procedure. She stimulates the nerve first with a small electric current. She has instilled faith in me so I am going to go for it. I am currently on her cancellation list as I can’t plan due to my irregular cycle.

The other thing that she thought would be useful to me would be to attend the pain management programme called LINK. During my initial assessment with Rebecca McLoughlin (Pain physiotherapist) we realised I would not be able to attend a weekly programme due to my cycle so I will be working one to one with Rebecca. I had my first appointment with her on Monday. Rebecca doesn't work in a hand on capacity, she will help me look at various things in life that I have problems with due to pain.

The first thing we are looking at, is sitting. I have problems with sitting due to Vulvodynia and Vestibulodynia anyway and after my last operation this has been impacted more by pain from up my bum and the Piriformis. It just feels like I’m sat on bone and nerves. (Maria has told me that you lose muscle bulk in these areas when in pain that’s why I feel like I am sitting on my bones and nerves. If the pain goes, then these muscles should bulk back out again). I carry a cushion in a bag to sit on, to help with this.

I do tend to just sit through pain. It seems I’m sitting for too long on my sofa in one position without getting up so I have now set a timer for every 15 minutes to make sure when possible I get up. There is nothing we can do during a period, we just have to work around that.

I need to work out how long I can sit on other less comfortable chairs and keep a record of this. Then make sure I get up and don’t just sit through the pain and suffer more later. Hopefully we are hoping to build my tolerance up to sitting . I am really excited by this work, I know it’s only been a few days but already my Pirifomis hasn’t kicked off this week so far which is amazing! Long may this last. (Fingers crossed).

Anyway, the pain team up at UCLH in my opinion are well worth a visit. They really understand pain better than anybody I have seen so far. I’ll keep you updated. Has anybody else seen them? 

Lily Lou x

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