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

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

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

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 Prescription. 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

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

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

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