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