It's been a while...

Its been a long time since I have told everyone where I am in life, how I'm feeling, etc.

Since so much has happened in such a short time, I thought I would give you all the opportunity to ask some questions that you would like answered (can be silly or serious questions).

Shoot me an email at helloendoblog@gmail.com or tweet me @helloendoblog by Sunday night and I will follow up on a post here.

Also, send me a brief update on everything that is going on in your life!

Look forward to hearing from you all!

xo Heather

Returning to Work

I am in talks with my doctor and work about returning soon. Since staying home without health benefits is not going to help my situation, I am going to try to tough it out.

There's not really much to report right now because I haven't gotten an official date that I will be returning. 

Photo Credit: Joe-KS

In other news, my parents are going to be in Las Vegas next week. I am planning on going to visit them, or they will drive into Phoenix.

I would rather go to Vegas, but it's very hard for me to sit for long periods of time and frequent bathroom stops. Besides that, I really do not think I am up for all of the walking.

When my family came to visit at the end of October/beginning of November, we went to Vegas, Lake Havasu, and different spots in and around Phoenix. They left two days before my laparoscopy, so I over did it. I really don't want that to happen again.

How do you handle traveling? 

xo Heather

"Do I Look Sick?" Blogging Contest

Some of you may follow Rachel Meeks of "Do I Look Sick" on her twitter or blog. I recently made an Invisible Illness Meme for her blog in a contest designed to raise awareness on Invisible Illnesses! Some of you may also know that I won third place in the contest!

Here is the meme I designed:

 

What do you think? I hope you like it! 

Also, make sure to subscribe to the "Do I Look Sick?" blog and follow the lovely Rachel on Twitter!

xo Heather 

Endo Happy: Validate Yourself

Most sufferers of Endometriosis face so much on a daily basis that we often start to accept the pain and emotions as a part of our daily life. But when you're having a bad day I find it helpful to validate the feelings I'm having, this is not feeling sorry for yourself it's acknowledging what difficulties you have had to overcome to make it through the day.

 

 The next time you're going through a difficult time make a mental list of what you're having to overcome, maybe it's pain that meds will not get rid of, tired from another sleepless night, worrying about money problems, unpleasant side affects from hormone treatments etc and take a few minutes to see why you're having such difficult time sometimes often doing the simplest things like physically getting out of bed when you're in pain.

It's easy to feel like you're getting nowhere, I have always felt like my life just went round in circles but when facing my most recent surgery I had an 'AHA' moment and realized how was I of supposed to achieve all the things I wanted to when so much of my life comprised of pain, surgery and unpaid recovery absence from work. I had however achieved things that I didn't give myself credit for and now that I am post op I can see that getting out of bed and going to work while in so much pain was an achievement in itself!

So the next time you are being hard on yourself acknowledge the daily challenges you face and simply say 'I am imperfect, I'm doing my best and I am enough!"

                                             

Special thanks to Katie,  founder of Endo Happy for another great post! If you are not already doing so, please follow & connect with @_EndoHappy on Twitter!!

xo Heather 

Update: 1/30/13

It's just after midnight which means that I will be in surgery tomorrow, January 31st. I will be having my first IC surgery (cystoscopy with hydro-distension) and I am extremely worried.

I have also been having a personal issue going on that I do not really want to share, I am just hoping that I can make it through and everything will be okay. 

I am also close to going back to work, and I really hope this surgery allows me to do so. I am going stir crazy. If I am unable to get back to work after this surgery, well, I just may kick rocks.

I also received an e-mail from my RE saying that I won't be needing another HSG test to check on my Right tubal blockage. I guess that means there is no hope.

I will also be going back to school in the summer to somewhat make-up for the two semesters I have missed because of my health. I will continue to keep trucking along with my degree, but until that happens, I am happy with the company I work for. They have been very loyal to me as an employee, and I will continue to be loyal to them.

I don't really have a lot to share at the moment, because I am working on getting everything in my personal life back on track. I will post pre/post op pictures soon.

xo Heather

Endo Happy: Acceptance

As I mentioned before, Katie from Endo Happy has become a Guest Blogger! Here is the first Endo Happy post! 

(Photo Credit: The Coffee Klatch)

I don't see acceptance of a situation as defeat, rather as acknowledgement of something that is present and needs to be considered as part of your life. We all want a cure for Endometriosis but the reality is that we do not have one yet, and it may be quite some time before one is found. So alongside fundraising and raising awareness accept that you have this condition and do what you can to make your life a little easier.

Think about the daily struggles that you face and pick maybe the 2 or 3 of the worst ones and find ways to try and overcome them.

2012 was a particularly difficult year for me, almost from the 1st January onwards, but I made these changes and they helped ease my day:

1. The skirt of my work uniform became so tight sometimes due to bloating that I was self conscious and very uncomfortable on those days, I eventually gave in and bought a bigger size, it immediately gave me a sense of relief and I wish I had done it sooner

2. In an attempt to keep eating healthily and feeling good instead of something sugary/fat filled on my weekly shop I instead bought myself a bunch of flowers for my bedroom (£3) They lasted 7 days and made me smile every  morning.

3. Sleeping was a problem, I was exhausted most of the day but suddenly at night my mind would come alive and I found it hard to switch off. I bought a notebook and in it made a list of all the things I needed to get done and made an entry for each day to remember to get them done, I took it to bed with me and would make notes as and when things popped into my head. It didn't work every night but some nights knowing I was organized I peacefully fell asleep.

These are just things that helped me, what could help you in 2013? :-) x

Fertility Diary: RE Consultation

Tyler, my husband and I had our first meeting with the Reproductive Endocrinologist last Wednesday (January 9, 2013). I will get back to the consultation in a moment, but first I want to share something with you.

The night before the RE consultation, my 19 year old sister called me with news that I was not prepared for – she called to tell me that she was expecting. A million emotions ran through my head, and I feel guilty to admit that they were not all good thoughts.

All night long, I tossed and turned trying to heal my hurt. I even had a good cry before my consultation.

The next afternoon, Tyler and I arrived to meet Dr. Amols – who is an amazing doctor. After we discussed our history of trying to conceive, I received the bad news. Dr. Amols told me that I have four issues working against me, right off the top. These issues are the fact that I have not had any pregnancies in four years, endometriosis, irregular periods, and a tilted uterus.

I begin testing to determine my ability to become pregnant next week then will meet with Dr. Amols to discuss options available to us, if there are any. I feel really confident that he will try everything he can do to help my husband and I start a family, but I am leaving it up to God.

My health insurance also only covers 80% of the testing. After the testing, my medical insurance does not help with any of the options, so everything will be out of pocket. So whatever these options are will have to be carefully considered financially, since I will undergo three surgeries this year.

I do not understand why God had chosen for me to learn of my sister’s baby news at that exact moment in time. Prior to the phone call, I was laying on the couch praying to God for a good consultation appointment while trying to come to peace with the fact that I may not be able to conceive. Why now? I had never been jealous, envious, or bitter towards my sister up until that moment. I am still struggling with the fact that I am so hurt by the news that my sister is pregnant. In recent years, I have become angry and upset at learning of other woman becoming pregnant, but this is a new low for me to be unhappy with my sister.

xo Heather

Image Credit: Jenna Marbles, Good Reads

Fertility Diary: Intro

I have had the symptoms of IC and Endometriosis for as long as I can remember but thought that I was normal. One thing that did not seem normal to me was that I was not getting pregnant, and I had no idea why. Friends, family, and acquaintances all around me were starting families and some were experiencing unplanned pregnancies, but my husband and I were not able to do conceive

In the summer of 2012, shortly after our relocation to Phoenix, my Endo, PFD and IC symptoms hit a peak. I was having a difficult time urinating, and it really hurt to empty my bladder. I was diagnosed with PFD and IC before my laparoscopy in November. During the laparoscopy, I was officially diagnosed with Endometriosis, even though the medical term was brought up to my attention long before the laparoscopy.

Now everything was starting to make sense. For four years I had been trying to conceive, while constantly wondering why I was unable to conceive with my husband. Now I knew that the issue was most likely Endometriosis, a medical term that I despise. Despite my disgust for the term, my goal is to raise Endo awareness while documenting my fertility journey.

I am nervous and scared to share this part of my life with you. However, I feel that I owe it to every woman who has or will continue to suffer from Endometriosis.

This is for all of the women who have been down such a long, dark path of learning to cope and become at peace with fertility issues. I want to be your voice. This is my journey, no filter.

xo Heather

Endo Journey: Angela

The following "Endo Journey" post comes from the lovely Angela Kawakami! Angela has been living and learning to cope with Endometriosis for more than two decades. Please read on to discover Angela's emotional struggle:

During my endometriosis journey of the last 22 years, I have seen more than 40 doctors and specialists, including three naturopaths.  I have come to realize that I have to be an advocate for my own health. If I don’t agree with the doctor’s suggestion or diagnosis, I get a second or third opinion.  Here is my experience with medical and naturopathic physicians.

Early Menstrual Pain

I began seeing doctors when I was 13 years old. I always went alone to the appointments. I guess I saw too many different doctors for anyone to come with me and support me. They thought I was just a hypochondriac.

For years, test after test showed nothing but mild scoliosis and thoracic outlet syndrome; they told me it was all in my head and that I should accept it and take antidepressants.  I had doctors talk to me like I was an idiot and prescribe medications for conditions I clearly did not have. One doctor told me that he couldn’t be my doctor anymore because I cried too much. Several doctors embarrassed me in front of other patients because they were frustrated that my body was in so much pain and couldn’t figure out why.  Twenty–two years later, I was diagnosed with stage IV endometriosis, proof that the pain was real.

Alternative Care

 

Frustrated with medical doctors, I went to a naturopath doctor that was hours away. I just wanted to see if she could find something the other doctors could not.  She asked me to lie down on my back and then she walked around me, touched my arms, looked into my eyes. The rest I really can’t remember, it was long ago.  The interesting thing was, without any tests, she said I had an overabundance of yeast and that my stomach was out of place. Then she moved it back into place! I swear it was so strange because for the first time I felt that I could breathe. It no longer felt as if someone was sitting on top of my chest. She told me to do a yeast free diet along with eating raw pumpkin seeds and some other items as well. It was an interesting visit.  Later I found out that my stomach had been out of place.  Scar tissue from the endometriosis pulled it out of place.

In 2009 I went to see a dietician. After a long interview, she said I had hypoglycemia, bone loss, and adrenal fatigue. This again is something that I would remember later on, as I put the pieces of my illness together. Because I was on Lupron, I have osteoporosis in my jaw. It is possible that the Lupron and the suppression of all the estrogens have caused serious bone loss elsewhere in my body.  No one had considered sending me to get a recent bone scan. My last one was 12 years ago, so at my next GP appointment I will be asking for one.

In 2011, I went to another naturopath. She said I had food intolerances to wheat, dairy and spelt and that my body was not absorbing any nutrients, minerals or vitamins. She put me on a load of supplements to get my body going and for a time, it was working.  While on the diet I had more energy, I was more alert and over all I felt great. Then I was put on Amitriptyline for nerve pain from the endometriosis and everything fell apart.  The Amitriptyline made me feel groggy, crave junk food and I didn’t want to do anything. It was almost like the medication was making me depressed. I was on 70mg a night. The one good thing it did was help me sleep, something I have needed for years.

Back to a Medical Doctor

 

In 2012, I went to one of the best doctors of Canada.  He pulled all of my files from all the doctors I had seen over the years.  His office sent me a copy of everything.  This was the first time I had access to all of my medical records.  At least half the information in my file was wrong.  (Ladies request your medical files!) Much of the information was new – tests that had not been ordered but that were in my file anyway, notes to disregard anything that anyone other than a medical doctor had told me. From these files, I learned that I must take all of my files with me and make notes. Otherwise, there is no guarantee the  information will be accurate. If it hadn’t been for my persistence to research and find one of the best doctors for endometriosis, I wouldn’t be writing this article as we speak.

All in all, the Naturopathic doctors made me feel better and talked to me like a human being, while many of the medical doctors treated me like a piece of garbage, humiliated me and made me feel like I was crazy. I wasn’t crazy. The five hours of surgery to remove and repair the endometriosis damaged organs proved the pain was real.  It had a cause.

Where I Stand Now

 

After years of suffering with endometriosis and being ignored and humiliated by medical doctors, it is difficult for me to listen to their advice. The errors and comments in my medical files showed a blatant disregard for my health. Many of my doctors thought I was crazy or faking it. I feel that I have wasted most of my life in and out of doctors’ offices. It was only through my persistence that I found the one doctor who was able to diagnose my endometriosis.

For now, I have decided to still take my birth control pills for my endometriosis – they seem to work.  At least, the pills even out my moods. Eventually, I would like to come off of the pill and my other medications. As for everything else, it’s all natural and clean eating for me. I am also learning how to manage stress.  Unless I am dying or I feel it’s 100% needed, I will never see a doctor again.

                                          

Thank you for being brave enough to share your Endo story, Angela! Please make sure to stop by Hormone's Matter to read more on Angela's life with Endo!

Have you suffered from an eating disorder? How has Endo affected your life? If you would like to share your story, please leave a comment below!

xo Heather

Endo Journey: Kali & Anti-Bullying

The following Endo Journey post is from an Endo Sister named Kali who suffers from multiple illnesses. She has a YouTube Channel that you can find here. Please watch the video below to learn about Kali and her struggle:

If you are a victim of bullying because of an illness, I hope that this video helps you.  Special thanks to Kali for raising awareness on Chronic illnesses and bullying. I am extremely proud of you for being so courageous! God bless you sweetie!

xo Heather

 

 

Mailbox Monday

This Mailbox Monday post is actually aimed at my readers! I was hoping to get your opinion on the following:

I had an ultrasound at the fertility doctor today and the RE counted 8 eggs on my left ovary and 11 eggs on my right ovary. I am 26 years old. In your personal (or professional) opinion, is this good news or bad news?   Please let me know what you think in the comments below!

xo Heather 

(Photo Credit: Ants & Grasshoppers)

Endo Journey: Emma

The following Endo Journey features Emma, a very sweet woman who has struggled with Endometriosis for several long years. She also battles other serious illnesses that require extensive treatment. Please keep reading to learn of Emma's Endo Journey:

 My name is Emma I am 25 and I have been diagnosed with endometriosis since I was 15 years old. This is my story....

I was 10 when I first started to realize something was wrong.  I started to get these stomach pains like nothing I had ever felt before.  They were sharp cramping pains that would freeze me to the spot.  My symptoms started with just my bowel.  I would get sharp pains before needing to go to the toilet and feel sick until I had been.  When I tried to talk to my mum she always thought I was looking for an excuse for a day off school or a note for PE.  I started to get sent home from school in my last year of primary school with these pains and sickness but still nobody really noticed anything was wrong.  September 99 I started secondary school and had just turned 11.

 I remember the day my life changed forever like it was yesterday.  I woke with the pains I had started to grow used to (as much as any woman can get used to endo pains.)  I got to lunch time and started to feel very unwell, sick and clammy.  I went to find a toilet which were always locked in our school and eventually found a teacher to unlock one for me.  As I went to the toilet I realized I had started my first period.  Although I knew what this was I wasn’t prepared for it at all and became very upset.  I found my form tutor and she made me a cup of tea and told me that everything would be okay.  I never thought for a second that day would be the start of a battle I would still be fighting over a decade later.  My first period was the easiest of my life.  A week of average bleeding with some discomfort.

Six weeks passed after my first period and my second period started.  The pain was indescribable.  No pain relief helped and the bleeding couldn’t be held with one sanitary towel, I was using up to 4 ultra pads at a time.  My bleed lasted for 3 weeks.  This became my monthly cycle now.  Then in-between cycles I would get sharp pains up my back passage before even feeling the need to go to the toilet, I would get a clammy sick feeling and spasms across my abdomen until I went the toilet then the same pains would come before during and even sometimes after my period.  My periods could last up to 6 weeks with heavy bleeding, clotting and dizziness.  I tried to talk to my mum but she just told me it was part of being a woman.  It was only when I was 15, I started to faint during my periods and was diagnosed as anemic, that my mum agreed for me to go to see a gynaecologist.  I had my first appointment and was asked to fill in a period diary but was also told due to the fact I was under 16 the consultant would not do any examinations.  I filled in my diary with my 3 week heavy cycles and the fact I clotted a lot during this time and waited for my next appointment.  At my second appointment the consultant told me she thought I had endometriosis and put me on the combined contraceptive pill.  This didn’t help.

At 16 I received my first examination and several scans.  I had blood tests and was booked in for a laparoscopy several months later.  After this the endometriosis was confirmed but I was told it was early stages and the consultant would not operate on me at that stage.  I came off the combined pill and attempted the contraceptive injection.  I bled for 12 weeks and was rushed in to hospital to be put on medication to stop the bleeding.  At 17 I became pregnant but sadly lost the baby after just 6 weeks.  I was devastated but put it down to being young and the fact I didn’t realize I was pregnant until I had lost the baby. 

At 19 I went traveling but my travels were ruined by constant trips to hospital with excruciating pains and sickness.  Then unfortunately I was involved in a massive road traffic accident that left me partially paralyzed for 8 months and with massive head, back and neck injuries.  When I returned to England my stomach pains persisted but were now putting me in a&e regularly due to the fact nothing controlled the pain.  At the age of 19 doctors decided to remove my appendix thinking this could be the cause of the pain but when they removed my appendix they found nothing wrong with them.  I was referred to a gastroenterologist.  I was put through 4 colonoscopies before finally being sent back to gynaecology again.

By the time I was 20 I had another laparoscopy and again was told endometriosis but again told it was early stages and no surgery was required.  I was advised to go back on the pill but refused as I knew it didn’t work.  I was given strong pain relief and sent back to my GP.  By now I was in a long term relationship and trying for a family.  But tragically this was never to be.

 

After several miscarriages and countless visits to a&e I was finally offered the prostrap injection to help my endometriosis.  I was on this for a total of 18 months never being told I should have been on HRT as well.  Eventually fed up that I went through years of never being able to see my consultant because he was too busy and always in meetings and always seeing junior doctors who didn’t understand endometriosis properly then being diagnosed with osteoporosis because of the careless way I was given the prostrap, I asked for a referral to another gynaecologist.  I was eventually sent to an endometriosis specialist in Chester at the age of 23.

My first visit to Chester resulted in another referral to a more specialist consultant who I saw several weeks later.  I was immediately taken off the prostrap and booked in for another laparoscopy.  This went ahead two months before my 24^th birthday.  I was diagnosed with stage 4/5 endometriosis with adhesions on my bowel.  After this I was immediately booked in for excision surgery for the first time in a decade.  I had the surgery and then was put on zoladex injections for 8 months.

I am now 25.  I have just had my 8^th zoladex injection and suffering bladder, bowel and kidney problems.  I get severe pains regularly, constantly need to go to the toilet and get sharp pains through my bowel and in my kidneys.  I am due to see a urologist in 2 days and my endometriosis specialist in 5 days time.  I wish I could say this was my story but unfortunately this is not the end.  10 years ago I thought I would have a family and live a relatively normal life.  I’ll never have children and now I am virtually housebound.  I had a career I worked towards for 7 years that has now had to end.  I also have an auto-immune system disease which severely affects my health and osteoporosis thanks to the 18 months of prostrap minus any HRT influence.  My life is nothing like what I had planned and my most recent development is a referral to the pain management team.  I regularly have to go to a&e because of the uncontrollable pain, most of the nurses in my local hospital know me by name now. 

 The only thing is that a lot of nurses don’t understand what endometriosis is and when I explain I am on zoladex they hardly ever know what this is.  I am now on morphine patches and paracetamol daily and I really don’t know what the future holds.  What I want for my future is some relief from the constant pain and the embarrassing bladder, bowel and kidney problems, and for this condition to become better known.  Awareness to our condition needs to be raised; nurses and doctors worldwide should know how we suffer and how to help us.  I regularly have to explain my condition to medical staff and the treatments I have undergone or am currently undergoing.  Whether this will ever happen I don’t know and I don’t think anyone could ever answer me that. 

                        

                                                                 

Thanks for sharing your story, Emma. I am so sorry that you have suffered from so long. I hope that doctors are able to diagnose your bladder and bowel symptoms and give you the treatment you deserve. I am also sorry about your miscarriage, I can't imagine the pain of losing a child. It is heartbreaking......

If you have a comment or question for Emma, or would like to share your personal story, please share below.

xo Heather