Tuesday, 25 September 2012

Consultation update.

As I previously mentioned, I had my hospital appointment yesterday afternoon - which I was extremely nervous about.

The prof. explained where they had found endometriosis during my last laparoscopy, on my ovaries, bladder, diaphragm and Douglas pouch. I said before that he had told me that my left fallopian tube was attached to my ovary but the tube is actually attached to the inside of my pelvis (which explains why it is hurting so much to walk and lift my left leg to drive). He also said that they found endometriosis on my pelvic brim which I didn't previously know about.

I'm still on a waiting list for surgery - this will be the same surgery as I had in 2007 (laser surgery and adesiology) but it will be a 2 1/2 hour surgery this time.

He will not be operating on my diaphragm because he said it's too close to my heart. So that's just going to be left in there to get worse and to continue giving me breathing problems. I asked him if he had checked around my diaphragm to see if it had gone any further up in my body but he said he didn't need to because he knew it wasn't any further than that because I wasn't coughing blood. But, as far as I was aware, you only cough blood if the endometriosis is in your lungs...? Can anyone clarify that? I mean, having endometriosis in your brain or your shoulder isn't going to make you cough, is it? And what if it is already above my diaphragm but isn't causing issues like coughing blood yet? I'm pretty certain it's not an instant reaction. He was pretty final on this answer though.

I feel a little fobbed off in all honesty. I mean, this is the same surgery I had in 2007 that didn't improve my symptoms in any way and now I'm having it again in 2012... Does that mean I'll be in this situation again in 2017?

As for the big question, regarding my chances of having children, he said to just not worry because worrying can make things work - it's a vicious circle. I know this but I can't just stop my feelings.

So, I might be one step closer, but I feel like I've made no progress at all and I don't see how this surgery will improve my situation when I've had the exact same surgery before and my endometriosis has just gotten worse.

The boy was certain this was a positive move with me getting surgery but I feel totally deflated and I'm absolutely terrified of going in for surgery again after what happened last time with the anaesthetic.

I know any improvement to my present situation is good - things can't get much worse than this (she says with a paper next to her explaining the problems that can arise from this operation), but I just feel like I'm going round in circles. Why can't I be given a treatment that works for me like other women seem to miraculously find instead of having to re-try things that previously haven't worked?

I don't even know what to think or say about this anymore. I seem to have exhausted all options and no medical professionals seem to care that I cannot have a life while in this situation - I just have to continue sitting around, taking painkillers and waiting. I just feel like screaming with it sometimes. It's so frustrating not being able to get anywhere and seeing other women finding treatments that work for them. Why won't anything work for me? Why!?

Anyway, that's my second rant of the day so there's not much else to ponder. In the meantime, I managed to get two photos of the pictures they took during my last laparoscopy... PLEASE LOOK AWAY NOW if you are at all squeamish in any way, shape or form... Or you're eating!


This is a little hard to explain but in the pictures above, if you can see the red spots and red inflamed areas, well, that's my endometriosis. You can also see lots of lesions, which has joined things together. The bottom pictures show my diaphragm.


This photo again shows red spots and inflamed areas of endometriosis. There are also black spots of endometriosis and 'chocolate' cysts. The bottom picture on the right shows where my fallopian tube is attached to the inside of my pelvis. I think, from looking at this, that it's also attached to my ovary and the whole lot is stuck to the inside of me and twisted. Either way, it doesn't look great.

It's interesting to see and to be able to show people but I'm sorry if this has put you off your dinner!

S.

Monday, 24 September 2012

Skin deep.


As you all know from my odd little rants here and there, I have pretty bad acne. It's always been bad, right from when I first came in to my teenage years. I always thought it would clear up as I got older and for a short while it did. It used to be all over my face, mainly my cheeks and forehead, but it looked so bad that people would come up to me at school and make this sympathetic face as they touched it and asked if it hurt!... Yes, that did really happen!

As I got older, I started on the pill and my skin cleared up dramatically. I always had the odd few spots but nothing I couldn't cope with. But then, as my endometriosis got worse, I had to start on hormone treatments and of course, my skin reacted straight away.

Over time it got gradually worse and a few years ago, when it was at it's worst and I was crying every day with the way it looked and the pain it was causing me (I think I mentioned before about how it would wake me up in the night with the pain from brushing on my pillowcase), I went to the doctors. The doctor had suffered with severe acne herself so she sympathised with how I was feeling. She advised me to stay clear of any products with Panthenol in them (which I still do to this day) and gave me some PanOxyl 10 Acnegel to use twice a day after I had washed my face.

I used it as the doctor has directed and my spots did clear up a lot but my skin completely dried out from the gel and it looked awful from that alone. I used it until the tube ran out and then went back to the pharmacy for more. By chance, the assistant gave me the wrong gel and not realising until I got home, I didn't have a chance to change it. Instead of the Acnegel she had given me PanOxyl 10 Aquagel which is the same as the Acnegel but water based instead of alcohol based. This worked much better for my skin as it wasn't as harsh but kept the spots at bay while not drying out my skin completely.

As my acne was all because of my hormones, and not really a factor I had any control over, no treatments have ever really worked. I stopped using the Aquagel every day when I had my coil fitted as my skin, for the first time ever, became almost completely clear. But since I've had my coil removed, my skin has gone back to it's old ways and I'm about at my wits end with it again. I may go back to the doctors again but I don't want to take tablets for it so I'm not sure what else they can do for it.

I have tried almost every lotion and potion on the shelves - apart from anything expensive because I just cannot afford it. I'd give anything for a Clarisonic Mia but I can't see me ever spending over £100 on something for my skin... Or ever being able to! I think my skin just gets used to things and recently I've found myself going back to my old mixed up routines to try and get my skin looking a little better.


Some of my current favourite skin products...



PanOxyl 10 Acnegel and PanOxyl 10 Aquagel contain Benzoyl Peroxide 10% w/w which has an antibacterial and a peeling effect and makes your skin less greasy. I do still use the Aquagel if my skin is particularly bad and nothing else less evasive is budging the spots - but only occasionally. You can also buy this in a 5% version which is a little less harsh. I would only recommend the 10% version if you have real acne - not just the occasional spot. At £3.75 it's a bit of a bargain but one tip, keep it away from clothing as it will bleach the fabric, make sure you wash your hands thoroughly after use and do not rub your eyes (it will hurt!)! My doctor directed me to use this over my entire face but I tend to just use it in the places where I either have spots or know I usually get spots, applying when my face is thoroughly cleansed at night before going to bed... As you can see, the tube has been very well used! 



This is a remedy that I have only discovered over the last few years. Very cheap and very effective! Sudocrem is an antiseptic healing cream that is commonly used for nappy rash, but can also be used for cuts and grazes, sunburn, minor burns, eczema, bed sores and acne. It's very thick and hard to rub in so I would suggest rubbing a little in at a time rather than putting a whole dollop in your hands and rubbing away - you'd be there for a while doing that! I tend to use this in place of my normal moisturiser at bedtime (once my skin is cleansed of any make up), when my face is very sore and I need something soothing, moisturising and calming. My skin always looks so much better the following morning. I've also found that it's an excellent base to use under make up. It can also be applied just to the affected areas on top of another moisturiser.



I originally purchased Bio-Oil to apply to my scars on my tummy after my second operation but one night decided to try it on my face and it worked wonders. I can only use it once a week, else it tends to make me break out, but I try and stick to that once a week routine because my skin always looks better the next morning. Again, I use it in place of my normal moisturiser once my skin is thoroughly cleansed. As for using it on scars, it's fantastic. Even applied just once a day, it significantly improves the appearance of them. I bought the 60ml bottle several years ago and it has lasted really well as you only need to use one or two drops at a time.



I used Tea Tree Water to tone my skin and to get rid of any oily residue left over from the cleanser I used when taking my make up off in the evening - either spritzing directly on to the skin and then wiping off, or applying to a cotton wool pad and then wiping gently over the skin. I only used this for about 2 months and I loved it. It's got a lovely smell to it, and it makes your skin feel beautiful. I didn't really notice any improvement to my skin but it did feel very clean and fresh after using it. I was slightly concerned about the fact it still contained Parabens but, if you're not bothered about this then I would recommend it. I haven't repurchased it for the simple fact that my nearest Lush store is Leicester so I cannot get there myself at the moment.


I purchased a tub of Re-Gen Cream after Zoe did a post about it on her blog, Zoella. It basically does the same job as Bio-Oil but in a cream formulation. It's so soothing and I've almost come to the end of my first pot now. It doesn't tend to keep the spots away, but it helps with any redness and scarring from spots and blemishes and moisturises your skin thoroughly. It's also an excellent moisturiser if you've been out in the sun too long or have a sore face from the wind. The boy uses this all the time and it sinks in to his skin beautifully without leaving any greasy residue. I also love the smell of this product - it smells clean and fresh. I will definitely be re-purchasing this again when I have finished this pot.


My daily routine...




I've been using Avene Cleanance K as my daytime moisturiser for over a year now and I absolutely love it. After trying lots of budget moisturisers, I decided to splash out a little and try something a little more expensive. It took me a while to find this cream and I tried quite a few others from the Avene range (and other 'premium' ranges) before getting to this one. I only use it once a day (as directed) and it sits beautifully on the skin, moisturising where it should and mattifying any oily patches. One tube lasts me quite a while as you don't need very much but I don't think I'll be straying from this for a good while yet. It's definitely worth that little bit extra.



I take my make up of each night with Johnson's Baby wipes because, basically, they are cheap! I really do not see the point of using expensive make up removal wipes that cost a fortune (well, almost £5.00!) and get dry halfway through the packet when you can pay so little and get fully moist wipes that do the job just as well for £1.00. These are really gentle on my skin also and remove all my make up really well. This has been a staple of mine for years now.



I've been using the Cetaphil Gentle Skin Cleanser for about 6 months now and after having slightly mixed reviews to it over the last few months, I do now quite like it. Enough to at least continue with it until it's gone. A lot of beauty bloggers were raving about this product when it was released over here in the UK, but to be honest, I've not noticed any difference in my skin since using it. The one thing I do like, is that it's a massive bottle and a little goes a long way! I put a little in my hands, rub together, massage in to my skin and then remove with a cotton pad. You can also use this as a face wash - but I haven't tried that yet. It's very gentle and soothing and leaves your skin feeling very soft and clean.



I've been using this Vichy NormaDerm for about 3 weeks now after reading a post on the lovely Hayley's blog, Wifelifebeautyxo. After deciding to have a change from the Lush Tea Tree Water, I started looking at Bioderma but it seemed a bit of a faff to buy in the UK. So, based on Hayley's review, I purchased this instead, which is (apparently) almost the same. I have to say, I love it. It leaves my skin feeling beautifully clean and fresh and I did notice an improvement in my skin after just the first night. After cleansing, I pop a little of this on to a cotton pad and gently wipe over my skin to remove any impurities that are still lingering. The only thing I have against it, and this is a little odd, is that the smell of it reminds me of something from when I was in hospital in May (I did say it was odd!). But apart from that, it's great!



I bought this Clearasil Ultra Overnight Lotion from Poundland just over a week ago for (surprisingly) £1.00 and I absolutely love it! I don't usually buy Clearasil products because I tried a lot of their products when I was younger and they didn't do anything for my skin. I only tried this because it was £1.00 and my skin improved in just one night! It leaves your skin feeling really moisturised but not at all greasy as it sinks in quickly and you can then feel a slight tingle to it - so I can tell it's doing something! I use this as a night time moisturiser (only) and I massage it in after my face is full cleansed and toned. The only thing is, I've just had a look on line for this product and there are only a few places that sell it so I think I might nip back to Poundland and stock up on these. I'm not sure why this is... The Clearasil website doesn't even show it as a product and Boots and Superdrug don't stock it either. Very odd.



Again, I bought this Clearasil Ultra Overnight Serum for £1.00 from Poundland and again I love it! I have been applying this after moisturising my face on the bad spots and where my scarring is at it's worst and I noticed a slight improvement after just the first night. You only need a tiny bit as it spreads really well and it feels very soothing on sore skin. It hasn't stopped me getting any spots but it feels lovely and has improved the appearance of my skin so I will definitely continue using it. Unfortunately, (again!), I can't find many stockists on line so I don't know whether these are end of the line products or if they have been recalled for some reason, but I think I'll stock up on this too if it's still available for £1.00.


So, there you have it... Have you tried any of these products? Do you have any favourite products that you could recommend for acne prone skin? Please feel free to leave some comments - I'm always on the lookout for new acne treatments!


S.

Sunday, 23 September 2012

Creepers and yorkie puds.


I've had a 'happy' day today!... Certainly a change in mood to how I felt earlier this week! Me and the boy went shopping today and I bought some beautiful 'creepers' (shoes!) that I had been lusting over for a while. I am absolutely in love with them, so much so that I changed straight in to them while I was still out! We also made a very exciting purchase between us!... We bought a new bed! It's one of the two big purchases we still had to make for our house (which we will have when I'm better and back to work!) and it's going to live in the boys room for now. We saw one on Friday that we wanted at Ikea but we popped in to a 'proper' bed shop today and saw this beaut and we knew it was meant to be instantly. We just have to get our mattress ordered from Ikea now and then we shall be slumbering peacefully in style! After shopping, the boys parents cooked us a lovely, completely dairy free dinner (including dairy free Yorkshire puddings - tip: soya milk works perfectly in them!). It was scrummy. I always feel like I'm putting them out now with my new diet but mama and papa W have been fantastic with buying me the odd bits here and there so I don't miss out on having a nice dinner too!

As I've already said, my mood has changed quite a lot from how it was earlier in the week. I went through a pretty tough time, emotionally, this week. In fact, it probably hit me harder than it has in a long time. I was a wreck. But I eventually climbed back out of my hole, with some much needed help from my loved ones, and I feel like I can cope again now... For a short time anyway. I've been highly suspicious of my period also because, although I have been in pain with it, it was no where near to the pain I'm usually in. I didn't even have to take my Nefopam. It was ridiculously heavy but it's almost finished now which is odd also since my periods usually last weeks on end... Could the dairy free diet actually be working for me!?

I have my consultation with the prof. tomorrow afternoon - finally!... I've only been waiting since May to get some answers but hey ho, he's been on holiday so I can't complain too much (she types bitterly). But, anyhow, by this time tomorrow I should know what 'the plan' is. I have so many questions to ask and I'm so very anxious about it but I'm just trying to keep positive and remember that tomorrow should give me the answers I've been waiting for... Wish me luck!

In the mean time, I have a bit of a different post winging it's way to you tomorrow morning. I hope you all enjoy it. I actually feel a little nervous about it because it's a bit of a beauty post which isn't something I'd usually do, but I did enjoy writing it so I might do a few more. Let me know what you think anyway.

S.

Wednesday, 19 September 2012

Putting on a brave face.

Image courtesy of http://gemma-correll.blogspot.co.uk/
I apologise if I've been a little quiet recently. I've been having a really hard time this week. My period has started and I've been very upset... And of course in a lot more pain again. I'm really struggling with the whole baby thing and to make matters worse, my Facebook feed seems to be full of them at the moment.

I had my second counselling session today and I've now been referred on for liaison psychiatry. My appointment may take a while to come through so for now I just have to wait again but my counsellor seems to think it will help more than just the basic counselling I would have had with her.

I haven't really done anything else this week and to be honest, I'm not in great mood so I'm going to hop in to bed and get an early night in a bid to sleep of this sadness.

If you've left a comment, tweet or emailed me recently, thank you. Please don't think I'm ignoring you. I just need to get past these few days and then I'll be back again. I hope you all understand.

S.

Back to basics: what are the complications of endometriosis?


Pain
Long term (chronic) pelvic pain is the most common complaint for women with endometriosis, and it can significantly impair the quality of life, including work and social activities.

Women commonly describe active endometriosis pain as burning, dull, heavy and miserable.

Infertility
The main complication of endometriosis is difficulty in getting pregnant (sub-fertility) or not being able to get pregnant at all (infertility).

Endometriosis does not equal infertility! Little research has been carried out when it comes to endometriosis and fertility, but, it is important to remember that having endometriosis does not automatically mean that you will never have children. Rather, it means that you may have more problems in getting pregnant.

Studies indicate that women with minimal-mild endometriosis take longer to conceive (become pregnant) and are less likely to conceive than women in general. It also appears that the more severe the woman's endometriosis, the more likely it is that she will have difficulty becoming pregnant. Thus, women with moderate-severe endometriosis tend to have more difficulty conceiving than women with minimal-mild endometriosis.

Many women with endometriosis have children without difficulty, and many others become pregnant eventually - though it may take time. Surgery can improve fertility by removing endometriosis tissue, but there is no guarantee that this will allow you to get pregnant. You may also require the help of assisted reproductive technologies.

The longer someone has endometriosis, the greater the chance that their fertility will be affected. However, it is estimated that up to 70% of women with mild-moderate endometriosis will still be able to get pregnant without treatment. Pregnancy is also known to reduce the symptoms of endometriosis, although the symptoms often return once the menstrual cycle returns to normal.

Infertility can be related to scar formation and anatomical distortions due to the endometriosis; however, endometriosis may also interfere in more subtle ways: cytokines and other chemical agents may be released that interfere with reproduction.

Effects on other parts of the pelvic region
Ovarian cysts (fluid-filled cysts in the ovaries) can form when the endometriosis tissue is in or near the ovaries. In some cases, ovarian cysts (endometriomas) can become very large and painful. They can bleed or rupture, causing severe pain.

Adhesion's are bands of fibrous scar tissue, which forms inside the body. They can be found anywhere in the body between almost all organs and tissue. For women with endometriosis, they can bind an ovary to the side of the pelvic wall, or they may extend between the bladder and the uterus etc.

Whilst adhesion's are more often than not spoken of as a post-operative complication, this does not necessarily hold entirely true for women with endometriosis, even though they, of course, are a group of people who often have had numerous surgeries and thereby, by that factor alone, increase their risk of developing further adhesion's.

Endometriosis, however, can cause local inflammation, which is a key factor in adhesion formation. Adhesion's may therefore form as a result of endometrial implants bleeding on to the area around them, causing inflammation, which again leads to the formation of scar tissue as part of the healing process.

Adhesion's vary in appearances from thin and transparent to thick, dense and opaque. In some cases, adhesion's have been found to such an extent throughout the pelvis to create what is known as a 'frozen' or 'fixed' pelvis.

Just like endometriosis itself, adhesion's can cause pain and subsequently affect a woman's quality of life to the extent that her day-to-day activities are impaired. Women with endometriosis describe the pain associated with adhesion's as stabbing, sharp, pulling, intense and nauseating.

Yet, whilst the problem of adhesion's in endometriosis is widely recognised, there is at the moment no way of preventing them, when caused by the disease alone, nor a fool proof prophylactic which can be applied during surgery, though many companies are at present working on finding a product which prevents adhesion's.

Other complications can include
  • bowel obstruction: implants can sometimes form in the intestine and cause painful bowel movements, constipation or diarrhoea
  • ureteral obstruction: implants can occur in the bladder (although less commonly) and cause pain and even bleeding during urination
  • peritonitis from bowel perforation can occur
  • an increased risk of certain types of cancer, particularly ovarian cancer
  • an increased risk of miscarriage or giving birth prematurely: there is no evidence that endometriosis causes women to have repeated miscarriages, also, there is no evidence that treating endometriosis results in women having fewer miscarriages.

Monday, 17 September 2012

Tigers! Tigers!

I hate this photo of me but the boy is pulling a face on all the others!
Cover Drive performing at half time.
On Saturday I went to Wembley in London to watch Leicester Tigers play against London Saracens for the Aviva Premiership rugby with the boy, my dad, brother and nephew. I hadn't been to Wembley Stadium before and being quite new to rugby still (this was only my 4th game that I've actually been to) so it was quite exciting!

There was also pre-match entertainment from Kieran Alleyne, The Rock Choir (of which I have just discovered is also based near me so I am very keen to join!) and Cover Drive.

Unfortunately, there was no win for us Tigers as they drew with Saracens 9-9 but it was still a great day out.

S.

Friday, 14 September 2012

Voices of endo.

Image courtesy of http://voicesofendo.wordpress.com/
The beautiful Sherika of Voices of Endo, has featured my story on her website. You can read it here

I've previously linked the website in the endometriosis library, but in case you haven't had a look yet, please check it out. There are a lot of useful stories on the site showcasing different women's experiences with the disease.

Thanks again Sherika!

S.

Thursday, 13 September 2012

One over done bean.


I haven't done much this week. I've not been feeling great the last few days. I've been absolutely exhausted again and getting a lot of tummy pains. My emotions have also been like a roller coaster and I've been finding it hard to keep my positivity. I think I just over-did it last weekend and it's really caught up on me.

Lou came over to see me on Monday so we had a good ol' gossip session over a selection of green teas and it was lovely. She brought me a beautiful harem jumpsuit too which I have been making full use of today - it's so comfortable!

I rested on Tuesday and Wednesday, apart from doing some cooking and working on my blog (which I seem to have gotten in to a lot!... I'm never off here at the moment!). I decided to watch One Day (again) and sure enough ended up in tears as per normal! I must be the most emotional person in the world when it comes to films. I am the only person I've ever known to cry at Terminator 2: Judgement Day... It's just so sad when he self terminates!

Today, I've spent the day at Mama's house playing with next doors dog Jasper aka. Jazzy B. He is a Cocker Spaniel/Jack Russell cross and absolutely full of energy! If you follow me on Instagram (@emlwy), you will have seen a photo of him that I posted not long ago. He is a complete and utter nutter but it's been lovely having him playing around and making us both laugh!

Mama has just put dinner on the table so I need to rush off now!

S.

Follow, follow, follow me.

Image courtesy of http://weheartit.com/entry/21046204
Just a quick post to say a big thank you to those who are following me and to everyone who is reading my blog. It means the world to me to know that my words are helping someone who is going through a terrible time with this disease... And at the same time, helping to raise awareness.

If you haven't done so already, please click on the little blue 'Follow' button under the Subscribe to EMLWY section on the left of this page. Or, if you are on Bloglovin, you can follow me here, or by clicking on the black button, again on the left of the page.

Your support means so much to me, without it, I wouldn't be writing still.

S.

30 things about living with endometriosis you may not know.

Image courtesy of https://www.behance.net/gallery/13341953/Ajandk-Terminal-AT-Xmas-2013

I saw this post on another endometriosis blog, The Melissa Monologues (also linked in the 'endometriosis library'). Since none of us are the same and we have all had very different experiences, I thought I'd give it a whirl and complete it too. 

1. The illness I live with is:
Endometriosis. You can read more about the disease in the 'Endo-What!?' tab at the top of the page... And on the rest of my blog!

2. I was diagnosed with it in the year:
I started having real problems with it in 2004 and after my doctor ran some tests, he sent me for a laparoscopy and my endometriosis was discovered in 2005.

3. But had symptoms since:
1995 - when my periods first started. They were always very heavy and painful but I thought this was normal.

 
4. The biggest adjustment I've had to make is:
Learning to cope with my new life - OR lack of life! Since February, my life has altered completely. I no longer work, I don't get out to see friends, I don't drive. I don't really do much at all.


5. Most people assume:
That endometriosis is just period pains. Even when I've fully explained it to people they just do not understand it. But, to be fair, unless you see me at my worst times, I don't think you could ever fully grasp what this disease can actually do to a person. Calling in sick to work was always the worst thing, people would just think you are making it up and that all women have periods so it can't be as bad as I'm making it out to be.


6. The hardest part about mornings are:
Trying to make that first move and get out of bed. And then it's trying to go to the toilet. Mornings are one of the most painful times of the day because I've been still all night and my bladder is full (which means it presses on everything) and also all my medication has worn off. I always wake up exhausted too - no matter how much sleep I have gotten. It takes me a good half an hour to get out of bed each day!

7. My favourite medical TV show is:

I don't really watch medical TV shows. I used to enjoy 'One Born Every Minute' which is a UK reality type show based on a maternity ward, showing couples getting ready to give birth. It upsets me too much to watch it now though.

8. A gadget I couldn't live without is:
My iPhone. It means I can get online anywhere and keep in contact with the outside world.

9. The hardest part about nights are:
Trying to get to sleep. I'm generally OK if the boy is here, but some nights I cannot sleep at all no matter how exhausted I am. But when you can't sleep, it just makes the next day so much more difficult.

10. Each day I take 19 pills and vitamins:
19 is a regular day for me. It includes 2 150mg Tramquel (Tramadol), 3 250mg Naproxen, 8 500mg Paracetamol, 2 600mg Calcium & Vitamin D3, 2 500mg Evening Primrose Oil, 1 A-Z Multi-Vitamin with Minerals and 1 5000mg Cranberry tablet. On the days where the pain is too much for me, I also take 6 30mg Nefopam tablets a day... I basically rattle when I walk!


11. Regarding alternative treatment I:
Would love to try it. I've heard good things about acupuncture but I really couldn't think of anything worse than having a load of needles stuck in to my tummy right now! But definitely in the future. I guess nutrition is an alternative treatment and I've recently cut out dairy from my diet. I will also be cutting out wheat and gluten over the next 3 months and then slowly adding it back in to see if any of those effect my endometriosis.

12. If I had to choose between an invisible or visible illness I would choose:
This is a really hard question to answer. It's difficult to make people understand the disease because you cannot see it, but then at least some days I think I look OK. If I had to put up with this disease and look terrible at the same time I definitely wouldn't cope. Sometimes putting on some make up and a pretty dress and doing my hair nice is all I have!


13. Regarding working and career:
Work was always difficult from before I was diagnosed. I would take regular time off each month and this gradually got worse. I started my last job (as a Personal Assistant) in 2009 and didn't take any time off for my endometriosis because I had my coil in for the most part. But in February this year, my endometriosis flared up (mainly due to the stress I was under at the time) and I haven't been able to work since. I was made redundant in May so now I claim ESA benefits to pay the bills. I am desperate to get back to work but having this disease does really restrict your options.

14. People would be surprised to know:
How much endometriosis affects your entire life. It affects your body, your work, your relationships, your friendships, your mobility, your independence, your self confidence... Everything. Right down to your money situation. I don't get any time off from endometriosis. It is my entire life. From when I wake up, to going to the toilet, to getting ready, doing daily chores, getting around, to trying to sleep at night. It's always there, and that's very hard to deal with.

15. The hardest thing I've had to accept about my new reality has been:
That I may not be able to have children. I knew this from before I was diagnosed. And it's there, everyday, no longer in the back of my mind. It's there at the front, and every month, every period, every time you see a baby, it's a reminder. I still haven't accepted this. It's what I believe to be true, I don't think I can have children, but it's not something I've come to terms with. I don't think I will ever be able to come to terms with it.

16. Something I never thought I could do with my illness that I did was:
Find such an excellent support system online. I would have loved to have gone to a support group but there are none near to where I live. I joined Twitter a few months ago, purely for the blog and found so many wonderful women on there who all understood what I was trying to cope with. I know now, that they are always there should I need any advice, or a cyber shoulder to cry on. I would urge anyone going through this to get online and find someone to talk to.


17. The commercials about my illness:
What commercials!? There is barely any information out there for women in my situation. There are special charities set up, and Facebook groups etc, but we're lucky if we get a small article in a magazine or newspaper. The one time I did see it talked about on TV was on Channel 4's Embarrassing Bodies (a UK show), where a girl went in for surgery and was miraculously cured of the disease never to have any problems again. There were a lot of angry women in the UK that night and I believe Channel 4 received a lot of angry emails regarding their portrayal of the disease. If we had commercials on TV and information in magazines, if more people knew what this disease was, we wouldn't have as many problems with people misunderstanding the disease.

18. Something I really miss doing since I was diagnosed:
Well, I was diagnosed in 2005 and it's never really stopped me doing anything until this year. Obviously, it always depended on whether I was in pain from a period or not but apart from that, life was pretty normal. Now, since my flare up, I don't really have any sort of life. I desperately miss being able to work and earn money, being able to drive and get about easily, and I miss being able to go out and drink and dance till all hours. I miss my life. Oh, and normal, pain free sex. I miss that. I really, really miss that!

19. It was really hard to have to give up:
Everything. I'm 28 and I have given up my life this year. When I should be in my prime, working hard and going out with friends, I don't have that anymore.


20. A new hobby I have taken up since my diagnosis is:
I started my blog last year but didn't really start writing on here until July this year. It's really helped to keep me busy and keep my brain active and I've had great feedback from people who have taken the time to read it.

21. If I could have one day of feeling normal I would:
Have a full day of living! I would go out shopping and then out in the evening for a meal and cocktails and dancing with all my friends. That's my plan for when I'm better. But the more I sit here, the less I see me getting past this. 


22. My illness has taught me:
A lot about my body. How it works, how things can effect it. It's taught me not to trust everyone, not all of your friends will be there for you at your worst times. It's taught me to cherish those who do stick by me. To work hard at keeping relationships in a good working order - it's not just me that has to go through the difficulty of the disease. To make the most of those moments when you can do things and to see the importance in the smaller things, the things you took for granted when you could do them whenever you wanted. It's only when you haven't got these things, can't do them etc that you realise how much they actually meant.

23. Want to know a secret? One thing that gets under my skin is:
People who don't even care enough to ask how I am. I make my life rather public with this blog, but it's common courtesy to enquire. And I so miss people talking to me, instead of ignoring me like they do now. It's very difficult to cope with.


24. But I love it when people say:
People don't necessarily have to say anything, but to just check in and see how I am, to just somehow let me know they sympathise in some way with what is happening, it means a lot. People taking a few minutes out of their day to talk to me means more than you could ever know, whether it be friends, family or strangers in a park.

25. My favourite motto, scripture, quote that gets me through the tough times is:
Something I had tattooed on me not long ago. It is an E E Cummings quote: "To destroy is always the first step in any creation". It reminds me to keep going. That something good can come of bad things... I'm just waiting for the good to come along still.


26. When someone is diagnosed I'd like to tell them:
To not be scared by the information you do find out about endometriosis. The disease isn't the same for everyone and sometimes it can be scary hearing things that others are going through. Also, you're not alone. You may feel it, but there are millions of women in this world who know exactly how you feel. Get online, talk to people you work with and your friends, find out if there is a support group near to where you live. Unless you have a support network around you, it's very difficult to cope sometimes.

27. Something that has surprised me about living with illness is:
Everything! From the lack of knowledge people have, to the lack of understanding people will give you. The disease itself is a surprise. No publication, doctor or book can ever explain the amount of pain you can go through with this disease. I wish sometimes, people could just feel it for a second, just to know how it feels every moment of my life - but then, I wouldn't wish this on my worst enemy.

28. The nicest thing someone did for me when I wasn't feeling well was:
Luckily, I have some wonderful people around me that look after me and help me when I am at my worst. I wouldn't be able to cope without my parents, the boy or my friends. They have all done plenty of lovely things for me and I cannot thank them enough. But, apart from that, it's just been people asking how I am. Sometimes, you just need someone to show an ounce of compassion.


29. I'm involved in Endometriosis awareness month because:
Endometriosis needs awareness! Not enough people know what this disease is or how it can affect someones life. Women need to know what to look out for and to know that being in ridiculous pain from a period isn't normal. My own personal goal is to just get as many people reading the word endometriosis as possible. Even if they don't read any further, they will have read that word and seen that this thing exists.


30. The fact that you read this makes me feel:

So incredibly happy that there are people who care about what is happening to me and millions of other women across the world. I really do appreciate it.

S.

Wednesday, 12 September 2012

Back to basics: what are the symptoms of endometriosis?


Symptoms of endometriosis can vary and you may not show any symptoms at all. The most common symptom is chronic pelvic pain which feels similar to menstrual cramps. The pain often correlates to the menstrual cycle, however a woman with endometriosis may also experience pain at other times during her monthly cycle.

Endometriosis is described as a chronic illness as it lasts a long time, sometimes for the rest of the affected persons life. When describing an illness, the term chronic refers to how long a person has it, not to how serious a condition is.

Some women experience symptoms while others may not. The symptoms of endometriosis can vary in intensity. For many women, but not every woman, the pain of endometriosis can unfortunately be so severe and debilitating that it impacts on her life so that she may not be able to carry out normal day to day activities.

The most common symptoms of endometriosis are
  • pain in the lower abdomen, pelvis or lower back
  • changes to your periods such as spotting before your period is due
  • pain before, during or after your period
  • painful, heavy or irregular periods
  • painful menstrual cramps
  • pain during or after sex
  • abdominal bloating
  • painful or problematic bowel movements including diarrhoea or constipation
  • pain on passing urine
  • extreme fatigue
  • nausea
Image courtesy of http://www.endometriosis-uk.org/information/symptoms.html
Most women with endometriosis may also experience pain in the area between their hips and the tops of their legs.

Another symptom of endometriosis can be infertility. It is estimated that 30-40% of women with endometriosis are sub-fertile (the condition of being less than normally fertile though still capable of effecting fertilisation). Infertility is not always caused by endometriosis - it can be due to many other factors.

The amount of endometriosis does not always correspond to the amount of pain and discomfort. A small amount of endometriosis can be more painful than severe endometriosis. It depends, largely, on where the endometriosis is actually growing inside the body.

All of the symptoms above may have other causes. It is important to seek medical advice to clarify the cause of any symptoms you may experience. If your symptoms change after diagnosis, it is important to discuss these changes with a medical practitioner. It is easy to attribute all your problems to endometriosis, but it may not always be the cause of your symptoms. The symptoms of endometriosis can also indicate many other conditions and because endometriosis manifests itself in a variety of ways, diagnosis can be difficult.

Sunday, 9 September 2012

Sparkles, slurps and bad twinges.


As I mentioned on Friday's post, me and the boy went out for a meal today in Nottingham. We went for a quick wander beforehand and bought a few little bits and bobs and then sat down for a lovely 3 course meal - bought for us by my papa. It was delicious! Unfortunately, even though I tried my hardest, I wasn't able to go completely dairy-free as it was a set menu. I had a little butter on my steak and after removing the ice cream from my dessert I suddenly realised that it was still full of chocolate! Oh well. Two slip ups isn't too bad I guess.

I spent yesterday getting some cleaning and washing done and then cooked a delicious meal.

It's been lovely getting out and about this weekend and getting lots done but I'm definitely suffering for it this evening. I've been having terrible pains all evening so I've not moved too much in the last few hours... I'm hoping I'll feel a bit better by tomorrow.

I hope you've all had a good weekend anyway.

S.
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