Tuesday, 31 December 2013

Endometriosis: Definition of Endosisters

What is the definition of an Endosister? For those of us who have Endometriosis, this simple word can mean so much. For those who don't have Endo, it may make no sense at all. I tried to search for a definition but I couldn't find anything to describe it properly. So I thought who better to ask than endosisters themselves? Below are the most popular words and phrases I had sent to me via Twitter. The overall message I took from this was how united and supportive we are as a community. To all my Endosisters, this is how other women view you: brave, beautiful, determined and more than anything else a friend.

You don't have to see an Endosister to know they are there...




"Silent survivors." @StacyP_21


"A powerfully silent understanding, life saving, light in the dark, a bond tainted with sadness but sparkling with hope...part of something special as a result of something horrible." @RetroQuenie

"A global sisterhood of women with a visible illness for us, that is invisible to others." @shaewill_i_ams

"Worldwide strangers instantly transformed into family through one unfortunate similarity." @hansmith86

"No one but another endosister can truly understand the severity of the pain (try as they may) that endometriosis brings...endosisters have an inner strength that is incomparable." @shinexox

"A strong person is one who knows how to be quiet, shed a tear for a moment and then picks up their gloves and fights again...that's an endosister." @kgeorge88

"True sisterhood, a community, complete, genuine supporters. Educated raisers of awareness. Together, determined, strong." @ashmac63

"A tribe of women who no matter what they are going through, stop to see how other endosisters are doing...we get each other without even speaking. We understand the pain, the heartaches, the depression, pretty much everything. You will never be alone because there will always be another sister who has walked down the same path as you...We are a tribe of warriors who don't back down or give up. We are strong and courageous." @EndEndoForever

"Inspirational, strong, determined, understanding, loving, unique & beautiful." @browneyedsmiler

"Endosisters are amazing and supportive women that I never would have met if this terrible disease did not bring us together. I'm so glad to have met them. They make me feel like I am not alone and crazy!" @ladieswholap

"Kind, strong and spirited...'smiles while facing adversity'." @_EndoHappy

"Very accepting & caring & make you feel like you are not alone." @MissPish


Please add a comment if any other words/phrases come to mind when you think of what an Endosister means to you! I would love to hear them!

#MyEndoDiary

Monday, 16 December 2013

Endometriosis: My Mini Meltdown

I'd been feeling a bit rough all day. And tired. Extremely tired. I hadn't slept properly for the last couple of weeks. Not falling asleep until 6:30am was bound to take its toll at some point, I suppose. I had to give my mother a lift, only 5 mins down the road. Before I left, as I got to the front door, I had a bit of a funny turn. My legs felt like they were going to give way. I had such a bad pain in my left ovary and my head was pounding. I took my mother out, drove back up the road, parked up outside my house and literally cried my eyes out. I couldn't move, it felt like I couldn't breathe. I just sat there and cried and cried, sobbing. So fed up & so so frustrated of being stuck in this rut they call Endometriosis. 


#MyEndoDiary

Tuesday, 10 December 2013

Endometriosis: Prostap Months 2 & 3 Medical Menopause

So, I'm into my third month of my medical menopause & Prostap. (You can read how Month 1 went by clicking here.) 

How am I feeling?

Pain free? Not quite. 
Better? Well, yes a little bit.. I personally think I have both Endometriosis cysts and adhesions again. Some of the pain has been stopped by Prostap shutting down my ovaries, but not all of it. The remaining pain I'm assuming is adhesions. 

The side effects of Prostap have calmed down slightly. Don't get me wrong, they can still be quite annoying and some days they cause more bad than good! But, I haven't been at the point lately where I'd want to strip off and go sit in a freezer to stop the hot flushes!! By the way, I've never done that. But I have been very very close!! ;)

I'm not crying everyday because of the pain. I'm not stuck in bed. Dizziness and headaches have seemed to stay with me throughout these last two months though. I have also found myself becoming quite nauseous at times. The joint pain has flared up again in my knees. Some days it is ever so painful, walking up and down the stairs can be a nightmare! One step at a time trying not to bed my knee so much! On the plus side, breakthrough bleeding has not been as persistent as it was! Only this last week or so it has started up again, so cramps are coming back with them and shooting pains in my ovaries. I'm hoping this will pass.

The biggest thing I'm suffering with at the moment is insomnia! I'm awake most of the night. How I am getting through the days on such a small amount of sleep I don't know!


December 17th, I have my review with my gynaecologist. Will they extend the Prostap injections? Do I want them to? This is what I have to figure out....


....Which is the lesser of two evils??


Endometriosis pain and symptoms constantly or a bit of endo & adhesion pain whilst still being in a medical menopause and having all the side effects of that?


Decisions, decisions!!

#MyEndoDiary

Saturday, 23 November 2013

Endometriosis: Don't Judge Us

Judgements happen within a blink of an eye. Within a moments passing, a thought, an opinion, is conjured up. Unfortunately for Endosisters, they happen more often than not. The most popular judgement we hear... "but you don't look sick". Don't be someone who makes that judgement. Behind every smile is a girl who has at one point been broken inside by Endometriosis. It breaks us physically and emotionally. The lengths we have to go to in order to survive some days is unreal. Just to put on a smile and carry on can be one of the hardest tasks. You may not see our scars. You may not see our pain. But trust me when I say you would never want to. Living with this chronic illness can at times be crippling. So, I may not look sick on the outside, as I pass you with a smile. But if you could see what my insides were doing to my own body, you'd soon change your mind.

#MyEndoDiary

Tuesday, 19 November 2013

I have Endometriosis. Endometriosis has me.

I sat in my room in complete darkness. Tears rolling down my face. I closed my eyes whilst wishing for things to get better. To feel better. Praying to be ok. To feel ok. I opened my eyes. Nothing had changed...

I still have Endometriosis. And at the moment, Endometriosis has me. 




                                                             #MyEndoDiary

Friday, 25 October 2013

Endometriosis: Prostap Month 1 Medical Menopause

Endometriosis is so challenging! 26 & this will be my 2nd time of going through the Menopause with Prostap! Great! I thought it would be useful to document my time and experiences on it. My first course was two years ago when I stayed on it for 6 months. This time it's been suggested to start on a 3 month course and then it will be reviewed. The overall aim to find out if it is Endo or adhesion's that are causing all my pains.


**Please remember these are my own experiences. It may be totally different for someone else. As with Endo, I'm sure you know by now, what works for one person may not for another**

Prostap is a hormone medicine that prevents certain hormones from producing. Therefore, it puts women into a medical menopause as it will temporarily shut down your ovaries. Its active ingredient is Leuprorelin Acetate. Similar drugs to Prostap that work in the exactly same way are Zoladex and Lupron. Side effects may vary.

My Prostap Diary: Month 1

Day 1: Prostap is given as an injection which is put into your fat and not your muscle. This helps it to spread and not cause any spasms in the muscles. I had the option of having it in my stomach or my bottom. Chose the bottom. I immediately felt a sharp pain where it's inserted and that same sharp pain for some time after. Felt a bit woozy on my way home. Had pains around incision site all day. Aching, throbbing pains shooting down my legs. Few stabs around my ovaries but nothing major. Headache but not persistent and a slight breast pain. Slept most of the day, felt very fatigued.

Day 2:  Didn't sleep much last night so been extremely tired all day. I had lots of naps throughout the day! I've had pains in both my ovaries, felt different to my usual Endo pains so it must be the Prostap, doing its job and shutting them down. Also had a really strange burning sensation in my back. Cool to touch but felt like it was on fire. Never experienced it before so unsure if it's related to the injection or not? The worst symptom I've had today was headaches. Felt as if I was hungover, really fuzzy with sharp pains shooting across the right hand side of my head every now and again. The nurse did warn me of these due to changes in my hormone levels.

Day 3: Headache again all day. Pounding. The cramps I was having started to increase. By the evening breakthrough bleeding started which explains the cramping. I've been so tired all day.

Day 4: Breakthrough bleeding has got heavier and cramps are still present. Also had stabbing pains near my ovaries and around my bellybutton.

Day 5: Breakthrough bleeding still happening. Cramps increased today. Woke up at 9:30am after a very restless night. Done some dishes, tidied up etc but my back pain became unbearable, even just standing. 12:30pm I went to rest in bed. The cramps came on so strong I wasn't able to move. Stayed in bed until 7:30pm. Hot flushes really bad today, even had to change my clothes because they were wet from sweating.

Day 6: Bleeding is more like a full on period today. Extremely heavy, bright red and with massive clots. If I'm being honest, it scared me a bit. Cramps and vaginal pain along with bleeding increased. Hot flushes all day. Night sweats! So much, even my hair was soaking!

Day 7: Period type pains, aching in my stomach. Still on quite heavy although cramps are not as continuous as yesterday!

Day 8: Still on today. It's October 1st and I'm sweating with hot flushes!

Day 9: Aching all over today and so so tired. Although, pains not as high as the last few days.

Day 10: My stomach has swollen massively today. Even clothes which are 2 and 3 sizes bigger than what I am will not fit me! Felt so down. Had a little cry. A day of feeling so fed up and depressed.

Day 11 - 17: Few aches. Insomnia has kicked up a level. Hot flushes are in full swing still. However, only small pains between these days. Still quite tired. Was a bit hormonal on day 15, quite angry and frustrated for no reason but it died down quickly. Still having breakthrough bleeding but not as heavy as the first week. Good news, I managed a night out! First one in ages that I lasted all night, even danced (!!) and didn't have to go home early. Was very surprised.

Day 18: Back to really heavy bleeding today. My back and stomach have been hurting all day. Pains increased towards the end of the day. Small cramps started at bedtime.

Day 19: I've been bleeding so heavy all day and felt sick. Joint pain in my knees. It was my Mother's 50th birthday party tonight. The biggest symptom I had was hot flushes! My face was literally soaking! Struggled with pain in my knees towards the end of the night. But, again, I made it through the whole night.

Day 20 - 21: Such bad pains in my knees. I've found it so hard walking, especially up and down the stairs. I've had to take it one step at a time. Sitting down and standing back up is also agony. Small cramping in my stomach today.

Day 22: Didn't feel too bad in the morning/afternoon. No major symptoms or side effects. However, this evening when I was coming to bed I had a bit of a funny turn. I felt really sick, dizzy and then had massive stabs starting in my ovaries and shooting up my stomach.

Day 23: I had a bad back this afternoon. Had another funny turn feeling dizzy and sick. Took a nap.

Day 24: Been really tired today but overall no major pains.

Day 25 - 28: Between these days, I've had no energy at all and taken loads of naps! After being out of bed for a few hours, I've ended up falling asleep again. Had another episode of feeling sick, dizzy and faint. Have noticed hair loss. Loads of my hair is coming out in big bulks of strands when I'm brushing it.

This month has been extremely up and down. I'm hoping when I have my second injection, it won't be as bad as the drug is already in my system. You can notice from the diary that I had a few good days in the middle. Not pain free. But better than I have been. Although, due to all the other side effects I'm not sure yet if it's been effective or a massive benefit. Keep your fingers crossed for month 2!

(Read Month 2 by clicking here.)

A good website listing many of Prostap's side effects is available here if you are worried about any of them or want more information.
#MyEndoDiary

Wednesday, 23 October 2013

'The Emotional Causes of Endometriosis' - MY VIEW

Earlier this week I read a post called 'The Emotional Causes of Endometriosis'. To say I was a bit shocked at the content would be an understatement. The author of this blog, Elle Griffin, says she is a Natural Fertility Expert and Feminine Vitality Coach... In the introduction of this post, she states "you are not the cause of your hormone imbalance and thus have no reason to blame your body for your endometriosis." However, what comes next is the complete opposite. 

The 'theory' that is put forward, is that having Endometriosis is our bodies way of sending us a message, warning us of our self inflicted turmoil, which in turn, is causing all our pain. That if we allow our minds to be in conflict with our heart, we are ultimately bringing on this awful and sometimes cruel disease ourselves. If we just listen to our bodies messages, then we will heal ourselves and cure our endo. Wow! Just wow! Forget the tablets, forget the endless doctors appointments, multiple operations and hormone treatment. Our mindset alone is what will rid us of this chronic pain. If only it was that simple!


I'm 26 years old. Living at home with my mother and have no children. So, according to this 'theory' I'd be put in 'The Dependent' category. Meaning I'm clinging to my childhood, struggling to "grow up" and possess childlike qualities. I "eschew the duties of adulthood including moving out, getting married, or having a baby." Being within this category states I am so dependent on others (instead of myself) for love and attention, that my womb is doing the same thing and looking "outside itself for the same feelings of nourishment." This is the reason why endo tissue is found outside of my womb... REALLY?! Women with jobs/careers, you're not safe either. Within 'The Business Woman' category, women suffer with the need to work but the want to be a housewife or succeed in other areas apart from your career. So your womb is doing the same. Trying to seek happiness outside of itself. You would think that's enough garbage, right? Wrong! The 'Reluctant Mother' category is up next, women who "struggle to accept whether or not they want kids" are accepting motherhood when they don't want it. Doesn't the author realise that Endometriosis is one of the biggest causes of infertility and some women will not even have this choice?! Guess not..if the woman just accepts her true feelings of not wanting children, her emotional mindset would be balanced and therefore endo will be healed. Hooray! Yeah right...


I find it truly offensive to myself and all other Endosisters to suggest that our own emotions have caused this. That because we have taken our "sacred uterus for granted" we brought on endometriosis. It is a real, physical, debilitating disease! It is not psychological! It is not all in our heads! For someone to come along, without having done any research or provided any accurate facts, is just irresponsible, misleading and so ill-informed! I am all for believing that having a positive attitude will help us to cope/deal with endometriosis more effectively. Holistic approaches towards our health and well being I believe can have many positive impacts. But the suggestion that negative mindsets are a cause of endometriosis and positive mindsets will heal it, is just absurd to me and belittles what every Endosister goes through on a daily basis! 


One response to the post states  "I don't see how it is misleading unless the reader wants to be misled." I certainly don't want to be misled yet I still find it awfully misleading! Some people may be more susceptible than others. What about some women or young girls who have just been newly diagnosed with endo, or those who have been suffering for years and are desperate to find some answers? I for one have been at both those points, spending hours online researching, trying to find out why this has happened, what brought it on and how I can manage it! I worry articles like this may be taken seriously which could lead to further problems for Endosisters, further delays in treatment or progression of the disease.


I've read the authors own words on her 'Health Journey Page' where it states what she has been through and how she reached this point. It has no mention whatsoever of Endometriosis. She says she cured herself of hormone imbalances and bad periods. Massive gap between that and Endometriosis, don't you think?

Everyone is fully entitled to their own opinions. But when it comes to health conditions, especially those that can be as serious as Endometriosis, please do your research! It may not be life threatening, but for many it is life changing. Don't belittle it or us!

#MyEndoDiary

Friday, 27 September 2013

A Day In The Life Of An Endo Girl 09/09/13

This is my second installment in my project 'A Day In The Life Of An Endo Girl'. Read my first entry here. Again, I just want to bring more awareness to Endometriosis and try to relay what we actually go through on a daily basis! I want people to understand how difficult it can be!




09/09/13

12:30am I've just realised I went through the whole of yesterday without taking any Tramadol's! I wasn't pain free, but I managed a painkiller free day! Wow, a first for everything.

1:55am Can't get to sleep. I have stabbing pains underneath. Curled up with a hot water bottle.
3:30am Dropped off to sleep but just woke up again. I can't get comfortable at all! Pains niggling away. Went to the toilet, a regular nightly thing.
8:25am Been tossing and turning all night. Hardly any sleep.
9:30am Fell back to sleep. Woken up now with pains in my right ovary. Pains are shooting to the top of my leg.
11:00am At the doctors, my appointment is at ten past. The waiting room is packed, I'm having massive cramps. Trying to look 'normal' while leaning over holding my stomach. Doctor is running 40 minutes late...brilliant.
12:20pm Out food shopping. My mother is worried about me as she's said my colour in my face is awful. I'm feeling so tired and a bit weak.
1:00pm Just taken a Tramadol. Pains are stabbing down my right side.
2:30pm Just got home from shopping. Feeling exhausted. Made up a hot water bottle and curled up on the sofa. Struggling to keep my eyes open.
6:00pm Can't stop yawning. The age old dilemma.. Do I have a sleep now or wait until tonight? If I sleep now i'll more than likely be up all night. Or do I try and get any amount of sleep when I can as i'm awake through the night anyway.
6:30pm Massive endo pains have started in my pelvis and shot straight up through my stomach. My whole stomach felt like it was cramping up. 2nd Tramadol of the day taken.
8:30pm Throbbing pains on the right side of my hip. Back pain is starting.
10:30pm Two more Tramadol's taken. Pain is increasing quickly. So uncomfortable.
11:30pm I've just come up to bed. Aches all down my legs. Hoping i'll get some sleep soon. Not getting my hopes up.
**Next day: As you may have guessed, sleep was not on the agenda!**


From one day to the next, we cannot predict how our Endometriosis will behave. Unpredictable. Painful. Exhausting.
#MyEndoDiary

My Endometriosis Update 27/09/13

This post is just to bring you all up to speed with what's going on with me at the moment, treatment wise...

 I finally got my gynaecology appointment after six months of waiting. I am under a new consultant at the hospital which I am happy with. At my appointment I saw a Junior Doctor called Claire. I was a bit wary as it wasn't the actual consultant. She asked me what had been going on and let me explain everything to her. She actually listened to everything I said and was so understanding and patient when I became a bit emotional. She stated that my overall problem was obviously pain and if they could help to sort that out it could help all areas of my life (e.g working, depression, social life). Which I agree with totally. She talked through some treatment options. The coil, noristhertone tablets, different pills etc etc. Until I told her I had actually tried all of those options already. To say she was flummoxed as what to do next was an understatement. But instead of fobbing me off there and then she admitted she was unsure and wanted to talk to the consultant Mr Chawathe who has more experience. If only other doctors would do that instead of making up some other rubbish to get us out. The conclusion he came to was that he does not know if it's endometriosis or adhesion's that are causing my pain. If they do an operation straight away and it's just adhesion's then that will only cause more scar tissue, more pain, same problem. 


To work out which it is, I have to go on Hormone Injections again (GnRH),called Prostap. Similar ones other endosisters may have had are Zoladex or Lupron. These will shut down my ovaries and put me into a medical menopause. I went through this procedure two years ago. Unfortunately, it didn't go too well for me last time, made me feel quite unwell and the side effects were awful. I had other complications last time from the coil aswell so I decided to give it a go again. If I don't try, I won't know. And i'll try anything to get me out of this pain i'm suffering on a daily basis. I will have the injections for 3 months to start, then it will be reviewed. If it has stopped my endo pain it may be extended for another 3 months. Or surgery may be the next step... again! 

Does anyone else feel like they are going round and round in circles?! A vicious circle to say the least! Wish me luck. I think i'm going to need it!!




#MyEndoDiary

Tuesday, 24 September 2013

Endometriosis: My Depression Diagnosis

As ridiculous as this sounds, I've been too embarrassed to just come out and say that I've been depressed.. I'm still depressed.. I have depression.

Ok, so here it goes. 12th August my Dr prescribed me antidepressants. I have been on them 6 weeks now. Before I went to the doctors about how I was feeling, things had become pretty bad. I was crying every single day, in pain every single day, fed up of taking medication every single day. It got to a stage where I couldn't see the point in my life anymore. I honestly couldn't see the reason for being here. I was never at a point where I would have acted on my thoughts, but the thoughts enough terrified me. I know it sounds awful and other people are in much worse situations than me, but endometriosis and years of chronic pain have worn me down. I saw a television presenter on morning TV talking about depression & what he had gone through. It felt like he was screaming through the TV directly to me! I couldn't get it out of my head.

On the Sunday night, the 11th August, I could feel things building up. Around 11pm I started having shooting pains in my stomach and couldn't bear another night of pain. I knew it would just keep escalating. My heart started racing, I was crying and shaking uncontrollably. It was so hard to breathe. My head felt like it was going to blow. Even just moving my head hurt. I managed to call my mother who came straight downstairs. That was my first ever panic attack. It frightened the life out of me. I knew right then I had to do something and agreed to go see my doctor the next day.

I was prescribed Fluoxetine. I'm not crying everyday now which is a big improvement. But I don't yet feel myself. I don't feel like me. Some days I feel like there's too many hours in the day. I just want it to hurry up and be over so I can go to bed. At times I feel that it shouldn't have come to this - being 26 years old and on antidepressants. Its not normal, I should be able to cope. But then I remember, having daily chronic pain isn't normal either.

I've posted this today because I want to show others that there should be no stigma or embarrassment about having depression. I wont lie, it's taken me quite a few attempts to write this. But I have. And now it's out there. Don't feel weak if you're feeling the same. Sometimes we just need a little bit of help to get back on track. Ask for help. Thanks for reading...x


#MyEndoDiary

Thursday, 19 September 2013

ENDOMETRIOSIS: When will it END?

Endometriosis. Endo. Adhesions. Laparoscopy. Endosisters. Words that I had never even heard of before my own diagnosis. Now they are in my everyday vocabulary. Why does the awareness of this chronic illness have to be nearly as invisible as endo itself? I hate what we have to go through on a daily basis. Isn't it enough to cope with pains that no one else can see without having to fight doctors to believe us that they are there? Surely, we shouldn't have to convince people the pain is not all in our heads! From being doubled over in pain to missing work, school, family time and  special events. To then being put through the mill with all the medications that are thrown at us. Hormones upon hormones. Painkillers and more painkillers. Poking and prodding. Surgery after surgery. Add to that endless amounts of hospital appointments and sleepless nights in between.

Is it realistic to think in this day and age that we should be expecting more? 

More awareness? Especially with those in the medical field. 
More reliable diagnosis? Not just leaving our only option of a reliable diagnosis via surgery.
More research? One's that are actually acted on! Research that will improve our daily living, not just to be published and float off into cyberspace.
More treatments? Treatments that will provide a longer lasting effect. Less side effects. Don't we have to put up with enough already?!

I sincerely hope one day soon that these expectations of mine will become a reality. Where people won't respond with "Endo what?" when we tell them what we have, but instead will have some knowledge on it.

Keep blogging, keep tweeting, keep spreading information on all social network sites. Keep researching, keep fundraising. We need to start shouting about Endometriosis from the rooftops. 

Click here to view my Endometriosis FAQ that I compiled myself, to help with awareness.. I've added my own personal experience to help!
#MyEndoDiary

Saturday, 14 September 2013

My Endometriosis FAQ

What is Endometriosis?

Endometriosis is gynaecological problem, where small pieces like the lining of the womb (uterus) are found elsewhere. Each month the lining of the womb builds up and shreds during menstruation. Instead of leaving the body, women with Endometriosis find that these chocolate like cysts migrate to other parts of the body. When stuck to other parts, these implants continue to break down and bleed. This causes inflammation, internal bleeding, pain from scar tissue and adhesions forming and overall, widespread chronic pain.

Where in the body is Endometriosis found?

Endometriosis can be found anywhere in your pelvis, ovaries, bladder, bowel, vagina, cervix, fallopian tubes, any tissues surrounding the uterus or the area between the womb and rectum (known as the Pouch of Douglas). In rare circumstances endometriosis can be found in places such as the lungs, brain and skin. But these are rare!

Personal experience: During my two laparoscopies, endometriosis has been found on my pelvis, my ovaries, my bowel, bladder and cervix.

How is it pronounced?

Trying to explain this chronic illness to people is hard enough without trying to explain how to pronounce the word itself! So to break it down, it is pronounced 'EN-DOH-MEE-TRI-OH-SIS'.

Who does it affect?

Endometriosis affects millions of women worldwide. It has been stated that 1 in 10 women suffer with endometriosis. The majority of women are diagnosed between the ages of 25 - 40, although symptoms can start much earlier than this. 

Personal experience: I was diagnosed when I was 23 years old. However, I have suffered from symptoms since around 16. Not knowing it was Endometriosis.

What are adhesions?

Endometriosis can cause scar tissue and adhesions. This tissue has been described as internal scars that can sometimes bind organs together. The more operations you have, the more scar tissue will develop inside. Check out www.adhesions.org


Personal experience: Adhesions had fused my stomach to my bowel and twisted it into a loop. This had to be undone during my second laparoscopy. During this operation my surgeon confirmed there were more adhesions found than cysts and the pain they can cause can be just as debilitating.

What are the symptoms?

Symptoms may differ from woman to woman, however below is a list I've complied of common symptoms. Bear in mind the level of pains from endo does not always correspond with the amount or size of the endometriosis implants a woman may have. Some women may have a small amount of cysts with excruciating pain. Others may have it and experience minimal or no pain. Some women experience pain with their cycles. Others can suffer all month long.
  • Chronic or intermittent pelvic pain (Stabbing pains, shooting pains, cramps, twisting or pulling sensations, dull aches, sharp pains etc)
  • Lower back pain (this pain can sometimes radiate down your legs)
  • Infertility
  • Pain during or after intercourse (Dyspareunia)
  • Painful periods (Dysmenorrhea)
  • Nausea and/or vomititing
  • Stomach cramps
  • Swollen stomach
  • Diarrhea and/or constipation 
  • Painful urination
  • Painful bowel movements
  • Changes in urinary frequency - retention or urgency
  • Spotting or bleeding between periods
  • Fatigue
  • Headaches
Personal experience: My symptoms started with painful periods at 16. I didn't realise something was wrong until 22. My stomach had swollen  and I started having stabbing pains in my lower stomach. Pains would come out of the blue, taking my breath away, making me freeze in one spot and hold my stomach. I've experienced every symptom listed apart from Infertility as have not yet tried to have children.

How is it diagnosed?

The only way to diagnose Endometriosis is by surgery. Normally by a Laparoscopy (keyhole surgery) or a Laparotomy which is more invasive. Biopsies make be taken. Sometimes a surgeon will perform a diagnosis laparoscopy first to see if endometriosis is present then another laparoscopy to remove it. Others do it all at the same time. Ultrasound scans, MRI's or CT scans be may undertaken but cannot be relied upon to diagnose endometriosis.

Personal Experience: The diagnosis and removal of endometriosis cysts and adhesions were performed all at the same time during the laparoscopies I've had. Blood tests, internal exams and ultrasounds showed nothing abnormal.

What treatments are available? How is it managed?

There is no cure for Endometriosis as of yet. However, there are various ways to try and manage it..

There are pain medications available to help keep symptoms at bay. If you are getting mild symptoms doctors may suggest taking over the counter painkillers, e.g paracetamol, ibuprofen or naproxen. If these painkillers do not help, stronger medications may be prescribed. 

Hormone based medicines are also prescribed to help manage endometriosis. These can include the birth control pill to reduce menstrual flow and regulate your cycle. GnRH agonists and antagonists may also be used. This medication reduces the amount of estrogen in your body stops your periods. It puts you into a temporary menopause like state and there are a number of menopausal side effects that come with it. These include hot flushes, night sweats, insomnia, vaginal dryness, bone loss and mood swings. It is recommended to take an add back HRT during this time to help manage such side effects.

Surgery is currently the most effective treatment, carried out through laparoscopy or laparotomy. If a woman's organs are severely damaged a hysterectomy may be suggested to remove the womb and possibly ovaries. This should only be considered as a last resort as a woman cannot become pregnant afterwards.

Personal Experience: I have tried many different medications including the ones listed above. Unfortunately, they do not help my pain. Among others, I have also taken cocodamol, co-dydramol and I am currently taking Tramadol. I received a 6 month treatment of Prostap injections which put me into a temporary menopause after my first surgery. I took calcium tablets to help prevent bone loss and a HRT patch to help side effects.

Common misconceptions?

  • The pill will cure endometriosis.
  • A hysterectomy will cure endometriosis.
  • Getting pregnant will cure endometriosis.

As mentioned above, there is no cure yet for endometriosis. The above points are unfortunately all incorrect. Having a hysterectomy will only stop endometriosis returning to the organs that are removed. This will not cure endo if you have cysts or adhesions elsewhere, e.g. bowel, bladder.

Personal Experience: After my first operation, my surgeon told me the best thing I could do was to get pregnant. During pregnancy some women's symptoms of endo may be alleviated, but it does not cure it!

If you have any further questions, feel free to get in touch!
#MyEndoDiary

Monday, 19 August 2013

My Endo Diaries reaches 15,000 views!

Wow. I cannot believe my blog on Endometriosis has reached 15,000 views! I'm overwhelmed. Now I know some bloggers get hundreds and thousands of views and they are a lot more known, but for me to have 15,000 views means so much! Every person who has clicked on my posts I appreciate you so so much for taking the time to do it. 

When I was first diagnosed with Endometriosis I was at a bit of a loss. I joined twitter and set up this blog in order to reach out to people & try and spread awareness. Truthfully, I didn't expect many (if any!) people to read it. For me it was just a place to rant. What I didn't expect was the love, support and reassurance I received back from people reading my blog. It still amazes me now! Whenever someone messages me to say they can relate to my blog, that it feels like they are reading about themselves & are happy to know they are not alone in this makes me feel so honoured. It's even made me quite teary at times! People being able to relate to me also stops me from feeling so alone with this awful illness. Thank you all so much!

15,000 views on I think I've achieved what I set out to do. It goes to show how united us Endosisters are. We are not alone and together we will support each other in any ways we can. I'm so glad my blog has helped some of you.

I will continue to share my endometriosis diary with you. Here's to the next 15,000 views! :)

#MyEndoDiary

Thursday, 15 August 2013

Endometriosis: A letter to my younger self

If you could write a letter to your younger self, (before your endometriosis diagnosis) what would you tell yourself? What advice would you give? Please take time to leave a comment below - let me know what you would say!


Here's my letter to my younger self..


Dear me..

     The periods you are having are not normal. They should not be causing you so much pain and making you spend days in bed. Don't take today for granted. In a few years you'll need all the strength you can get. There will be some tough patches ahead but I want you to remember that you are right! You know best when something isn't quite right with your body. Go with that niggling feeling! Do not let doctors or some people you know make you doubt yourself or feel insane. The pain IS NOT all in your head. IT IS REAL! Put your foot down Girl! Fight!
     There will be days you're going to struggle with pain. Getting through some days will be hard. But please believe me, you will do it! Don't stress about having to say no to invitations or going out. You will realise that you have to put yourself first & if that means spending some days in bed or resting then so be it. Your real friends will still be there after and thats something you're going to learn soon! Some will come and go. Especially those who only want you if you benefit them. When you health goes slightly down you may find some friends 'disappear'. Don't be disheartened. They weren't your real friends to start with. There'll be some surprises and trust me when I say that you'll make friends with some people you may never even meet! There is a whole group of women out there, feeling the same as you...ready to help! They are known as Endosisters. This will make no sense to you now, but I promise you that these women will become a life line.
     More than anything, keep your head up. Trust me, you are a fighter. Braver than you think and a lot stronger than you give yourself credit for. And for days when you're feeling down, in pain and fed up of not being able to do anything. Take it easy. There's always tomorrow xx

You can also read 'My Letter To Endometriosis' here. Posted via my Blogaway app

Thursday, 8 August 2013

Endometriosis: My letter to you

Dear Endometriosis,

     This is my letter to you. I want you to know how much you hurt me. You have caused me so much pain for so many years. When I was 16 my periods were so bad I'd spend days in bed and time off school. None of my friends seemed to have the same problems, yet I didn't think it was that unusual. I didn't know you were behind it. Christmas 2009 I started to feel really down and unwell. By February 2010 you started to increase the pain. Stabbing & shooting me in the stomach, making me jump when the pains came on so quickly. You made me feel completely insane when doctors wouldn't believe me. You go where you want, when you want. You agonise my back and legs. You torment my ovaries, my cervix, my pelvis, my bladder and even twisted my bowel into a loop.
     Two operations later, I've had you lasered out and cut out. At 23 I had 6 months of prostap which put me into a temporary menopause. No 23 year old should have to experience that and the side effects it put me through. Yet feelings mean nothing to you. You still find a way back. Twisting and stabbing your way in. Now age 26 you are crippling me with pain. You have me doubled over in pain, making it hard for me to walk and some days even getting out of bed is too much of a task. Endo, you have ruined my social life. A few years ago I would be out nearly every weekend. Now I cant make plans. You creep up on me out of the blue. If I go out, I'm home early. You attack my stomach so much it swells to double or triple the size. You make me look pregnant. I lost my job in March because of you. I had to take so much time off due to pain and sickness my employers wanted me out. After 9 years of working for them. 
     Recently, you've upped your game. To a whole new level. You have been making me feel so so alone. And depressed. You've made me cry every day for the last 3 weeks. This week you had me sobbing because of the pain you brought on in so many areas, all at once. Its becoming really hard to cope with. You certainly don't discriminate or play by any rules. You will hurt anyone at anytime. You're unpredictability leaves me feeling on edge. Frightened. You are fighting my pain meds to the max.. and winning at the moment. I was naive to think after my first operation that I would be free of you. Maybe even after the second I had small hope of it. Now I know differently. You're doing everything you can to hurt me, to get me down and make me give in.

     But I'm warning you I will get my strength & faith back soon. And then I will be back in control. You may have me at the moment Endo, but it will not be forever x

(Read my letter to my younger self here.)

Posted via my Blogaway app

Saturday, 3 August 2013

Endometriosis and the Spoon Theory

When I was first diagnosed with Endometriosis, I noticed on twitter people were using the hastag #spoonies. I had no idea what this was. After some research I found a website made by Christine Miserandino who created the 'Spoon Theory'. When trying to explain how Endometriosis (or other chronic illnesses) impacts you on a daily basis, this theory could not put it any better! It explains in a brilliant way how people with a chronic illness struggle with a limited amount of energy each day. How the smallest of tasks for a healthy person can leave us feeling exhausted.

I recommend any newly diagnosed Endosister's who have not seen it before to take a look! Or, use it as a good way to explain to family, friends, employers or colleagues exactly how Endometriosis can affect you.


Click here to view the article..

I hope you find the link useful!



#MyEndoDiary

Tuesday, 30 July 2013

Things can only get better?

So, two days into this week and I honestly cant imagine what else is going to happen. Sunday night ovary pains started to come on. All around my left ovary. Stabbing, cramping. Monday morning the pains were still present in the exactly the same place. Next I had a funny turn. Felt so sick, dizzy and became really sweaty. That passed within 10 - 15 minutes. Later on in the afternoon, the sickness came back. I was out at the time and had a 20 minute drive home. I really thought my mother would have to pull up on the side of the road for me to be sick. Luckily I got home - just in time! I absolutely hate being sick, it makes me feel so unwell & scared. Nausea didn't pass for the rest of the day, neither did the ovary pains. Day 1 of this week done.

Day 2 today. Woke up feeling like I'd been hit by a bus. Ovary pains were now going from my left ovary to the right and back again. Got washed and went downstairs to make a hot water bottle. Really wasnt feeling well or quite with it. Boiled the kettle, picked it straight up and went to pour it into my hot water bottle but instead tipped it all over my hand. You know that bit of skin between your thumb and 1st finger... yep, scolded right there, down my hand and onto my little finger. Absolutely killed!! Held my hand under cold water at once. And again multiple times throughout the day. Still hurting now and been feeling like its on fire. Luckily no blisters have formed though, cold water seems to have done the trick. After that, nausea came back. Felt so so tired, tried to have a little nap to sleep through it but just as I was dropping off to sleep, endo stabs in my stomach woke me up. Endo pains are really getting to me now, brain seems to have gone to mush & the simplest of tasks is proving hard to do.


Day 3 of the week tomorrow...

'Things can only get better' hey?! Surely they can't get any worse! How's the start of everyone else's week? Much better I hope!

#MyEndoDiary

Friday, 19 July 2013

Endometriosis: Is It Winning?

These last few weeks have been some of the hardest ever. Endo is definitely controlling me. My whole life feels like its just stopping.

Physically, the pain has been exhausting. I have spent so many days in bed not being able to get up due to the pain. Stabbing pains, severe cramping, backache. I've been feeling so nauseous & getting headaches. Sleeping at night is just a no go area. Doesn't happen. I find myself going to bed tired but laying there most of the night unable to sleep, mostly due to pain, sometimes I just cant drop off. I've been trying to get naps in the afternoon/early evening just to try help me get through the days. Endless  hot water bottles, tablets and medications. Tramadol, Paracetamols & Cocodamols included.

Emotionally is where I'm struggling the most though... I've never felt so low. I feel totally on my own and very lonely. I seem to be crying a lot. Some days I cant even stop myself and have tears in my eyes all day. I'm so frustrated that this is my life at the moment. 26 years old and instead of being out enjoying myself I feel stuck in a vicious circle of pain, doctors, hospitals, operations, treatment and back to pain. I know I won't be the only one in this situation at the moment, there would have been many endosisters feeling like this before and more to come. But its just not resonating with me at the moment. Twitter and endosisters always help to see you are not alone with this, that others can relate to how you're feeling. Yet right now, I still feel totally alone. Cant seem to kick it.
I've found this quite easy to write once I got started. But found it a lot harder to press the 'publish' button. Firstly, it's quite in depth to share - all my true feelings spilled out on a page. Secondly, I didn't want to post such a depressing post when I try my best to help and support others. But I guess those with endo will understand its not all good days & positivity. This is My Endo Diary after all and I've always been honest. Sometimes it just feels like endo is winning. 
#MyEndoDiary

Wednesday, 17 April 2013

A Day In The Life Of An Endo Girl - 16/04/13

Seeing as I've named my Blog 'My Endo Diary' I've decided to start this project, 'A Day In The Life Of An Endo Girl' to portray just a snippet of a day with Endometriosis. Women with Endo are not lazy. Some, such as myself suffer daily pain. Chronic pain. Sometimes mild, sometimes exhausting, sometimes severe. Small things hurt massively. What some people take for granted doing, can take all of my energy. Even down to doing the dishes or making food. Endo is unpredictable. Tomorrow may be a better day. It may be worse. If I look or sound OK one day it doesn't mean I'm better. I'm either hiding the pain from you (I've become quite good at this), having an 'up and down day' (explained below) or on the rare chance having a good day. Every day with Endo for me, is different. However at the moment, they all contain some sort of pain. So here's my first entry.

16/04/13                 

5:45am Woken up by Endo pains, stabs in my hips. The need to go to the toilet, a nightly ritual. However, tonight this is the first time, it's normally the 2nd or 3rd time by now. I never have a full nights sleep without waking for some reason.

6:08am Lying in bed rubbing my legs and hips trying to alleviate pain and find a comfy way to lay. Not wanting to give into painkillers this early on in the day..
6:57am Awake again. This normally starts around 2-3am. Should I be grateful insomnia & Endo have given me a slight break?
9:30am Awake. Changed. Washed. Hair done. Ate breakfast. Now need a sit down! Smallest things zap ALL of my energy some days.
10:35am Taking my mother to the Hospital to have some stitches removed following her operation on her hand for Carpal Tunnel 2 weeks ago. Feeling achy.
11:25am Sitting in the Hospital waiting room. Massive Endo stabs in my left Ovary. Hoping people don't notice as I seem to be leaning further and further forward on the chair trying to hold my stomach & hide the pain. Embarrassing.
Tramadol taken.
11:45am Started to drive home. Didn't make it out of the car park before pulling over due to stabbing ovary pains. Also getting a lot of breast tenderness and shooting pains.
12:30pm Home, finally! Cramps. Pains in my stomach, left side, right side above belly button and ovary. Frustrated. Sitting on my bed trying to recompose myself.
1:10pm Painting my nails. Take my mind off things..Painted nails always makes me happy :)
3:37pm Made food. Cramps starting from standing too long. Stabbing pains down my legs. On the upside, just received email confirmation for a competition I won last week - to be in the audience of Loose Women next week, a live lunchtime chat show in the UK. Excited! 
6:45pm Started feeling 'not quite with it around 5pm. Really drowsy. More of an unwell feeling. Pains in my back & stomach. 2nd Tramadol taken. Hot water bottle & blanket on the sofa. Not moving.
9:30pm So tired. Moody. Tried putting dishes away but got so frustrated 'cos I couldn't put things away properly due to pain. Gave up. Just sat back down, had a huge sharp pain in my leg, thought I had sat on a pin or something! Made me jump..no such luck tho - it's just Endo playing games.
11:10pm Time for bed. The sleepless, painful cycle will start again. It's been exhausting today but please note this has not been what I call one of 'my bad days'. This has been an 'up and down day'.

In my Mother's words on reflection at the end of the day...

        "Today wasn't your best day; But it wasn't your worst either"

Much more awareness of what we Endo girls go through daily is needed.

Much more.

View my second entry by clicking here.

#MyEndoDiary

Monday, 4 March 2013

The Endometriosis Effect..

I have mentioned a few times that Endometriosis does not come alone. (Click to see previous blog). It has an impact on all areas of our lives; our health & well being, social & emotional interactions, physical capabilities and our employment amongst others. This week my employment status has taken a direct hit. As from tomorrow, Tuesday 5th of March I will be officially unemployed.

I have worked for my current company for 9 years. A few weeks ago I was called up for a meeting with the Operations Manager. I was told they were starting the process to terminate my contract due to 'job capability'. Not that I am not capable of doing my work correctly and achieving all targets set, but due to my illness and sickness from work. This week I handed in my notice as I didn't want to be fired for something, which at the moment, I can't control. I had a feeling this day would come sooner rather than later. I've had to take so many sick days and long term sick from work due to Endo. It's such a shame it has come to this after working there for so long. Admittedly, towards the end I wasn't entirely happy working there. Lack of support and understanding one factor, stress of targets another. The hardest factor was just getting out of bed on a bad day. I'd be worn out before I'd even get to my desk.

On the other hand, as soon as I gave in my notice, it was like a tonne of weights had been lifted off my shoulders. I had instant relief and felt quite positive. The way i'm looking at it for now is that it's one less thing to stress about. Constantly worrying about how much time I've had off, hitting targets, or attending meetings with management really took it out of me. Dealing with Endo alone is bad enough without everything else thrown on top. For now I'm going to concentrate on me and my health. Focusing on that alone without other external factors getting me down, I'm hoping will help! Then I can start looking for other employment options.

I look forward to getting myself back on track..soon!
#MyEndoDiary

Friday, 25 January 2013

Endo doesn't come alone..

Hi Everyone! Firstly, I apologise that I haven't posted recently so thanks for staying with me and still reading my blog in the meantime. Really means a lot to me. If one person can relate to anything i have written, that's good enough for me! To feel you are not alone and not going mad is something I quite often need reassurance of - so hopefully my blog will do the same for you.

The last few months have been quite testing for me. Yesterday was one of the worst days I've had in a while. Continuous pain for two days running resulted in me nearly fainting yesterday afternoon. Came on so quick, so dizzy, felt like I was going to be sick, sweating so much it was running down my face. Was so glad my mother was with me who quickly sat me down, stripped me off and cooled me down with a cold water compress. Scared the life out of me. Went to bed at 4:30pm and stayed there.

I realised pretty quickly when I was first diagnosed with Endometriosis that it doesn't come alone. First came the IBS on top which I wrote about in my previous post. However since then, I have had awful pains in my lower back and shooting down my both legs although most of the pain in my left side. Gut instinct I was sure it was something to do or caused by Endo. My GP told me no. It was nothing to do with Endo and was more likely a spinal problem?! So I went back to my Gynaecologist. Some days it hurts so much just to walk and put one foot in front of the other. The tests started again. First up, I had an internal scan in November. This showed that unfortunately my right ovary is stuck to my bowel..again. After only 9 months since my 2nd laparoscopy. This can cause referred pain in my back and legs but my gyneacologist had a suspicion this wasn't the only cause of the pain. Next I was referred to Orthopaedic's in December. MRI test was done, luckily all came back ok. But feelings of initial diagnosis of Endo came flooding back. Anyone else go though numerous test, just to be told everything was clear? Doctors believing that was a good thing? Some people may think this is good news. But to me, it just made me feel insane! Like it was all in my head! I went back to see my Gynae which is when we found the answer.. Currently in Oxford University there is research being done about the link between women with Endometriosis and Back Problems. He believed due to my posture, crouching over and curling up in a ball because of the endo pains (pretty much constantly over the last 3 years) it has damaged my back muscles. Referred to a Physiotherapist in January and it was all confirmed! So, now i'm going through Physio to try and strengthen the muscles and get them working properly again. Had my second appointment today so hoping this will start working soon and provide even a little relief from what can be at times, a daily struggle.


#MyEndoDiary