Numb

It's been an extremely long time since I have posted, so I want to apologize first of all. Life has been insane lately, both good and bad.

Good, because I welcomed my beautiful baby girl Eliana into the world via c-section on January 12th, 2014. She is absolutely perfect!

Bad, because I am becoming numb to life. Endo is trying to destroy my life once again. Since giving birth last month, my pain scale has been through the roof. I thought that my endometriosis symptoms were bad during pregnancy, but endo is reminding me just how ruthless she is! I am numb to the fact that my so called Endo Specialist (who is on numerous excision specialist lists) does not seem to care that my endometriosis is spreading and I need surgery. Since his office will not return my calls, and I will not be seen until May, I have ultimately decided to send my records to Sinervo, Dulemba, and an up-and-coming specialist in Utah. Even if insurance claims do not work out, I will have a report from Sinervo to show my current specialist in May in order for him to get the ball rolling. Hopefully I can get my life back, for my daughter.

P.S. If you would like me to post Ellie's birth story, leave a comment below!

xo Heather

Anything Can Happen

It has been a long time since I have updated my blog, so I want to apologize first. I have been busy with work and doctor appointments. As some of you are aware, I am pregnant! In two days, I will reach the six month point. I do not know how to explain it other than a God thing. It's really a miracle, and I will never know why God granted me such a huge blessing. I will never know why this happened to me, because things like this just do not happen for me. I am so happy and so ready to meet my baby. 

 As far as the gender, we do not have a definite answer because our baby continues to be in a difficult position to identify boy or girl parts. We have an idea, and I have been worried about sharing it, but have decided to go with it. After two ultrasounds, we believe (although not 100% sure) that we are having a little girl!

Anything can happen. My baby and I are living proof. 

Besides, the pregnancy I am struggling with work and my illnesses. As some know, I work with an international transportation company that keeps me extremely busy. I work twelve hour shifts, and we have entered our busy season. It is stressful to say the least. It doesn't help that I am very ill. I am motivated to work up until my due date (January 24) so that I have more time with my daughter, but as I get further along, I may change my mind. As of now, that is the goal. 

Endo and PFD symptoms continue to be awful. I still have ovary pain and my muscle spasms have been really painful and more frequent since my uterus and pelvic area has been expanding. I am not taking any medication for these symptoms other than tylenol, which is a worthless drug. 

IC is really kicking my ass. I am inflamed, urinating even more than usual, and constantly have painful flares. When I cannot tolerate the pain anymore, I take pyridium which offers some relief. For those not familiar with IC and pyridium, basically it just coats my bladder temporarily. I consider it my "band-aid." For those wondering, I have gotten the okay from several obgyns and the pharmacist to take that prescription, but I still only do it on an as-needed basis when the pain is too much to handle. I only really take it when I am working and the pain makes it too difficult to perform my job. 

Pregnancy symptoms have really been the least of my worries. After I got over the first trimester hump, it has basically been smooth sailing. I do get headaches every few days, but I manage. The two biggest symptoms have been hunger and fatigue, but the fatigue is also associated with my pain level. 

That's really it for now, but I wanted to ask for your opinions. I have spoke with other endo sisters who have mentioned that I volunteer for a c-section and have an excision while under. I was curious to hear your thoughts, opinions, and/or experience on this. Please let me know in the comments below!

xo Heather

P.S. I almost forgot to mention that my sister had her baby! My handsome nephew was born on August 30th. He is absolutely perfect! 

I Samuel 1:27

My grandparents came in to town to visit the night of June 10th. They arrived in town late that Monday evening, so we made plans to meet up the next morning. Tuesday morning (June 11th) I woke up feeling very ill. My grandparents arrived at our apartment shortly before 9am and I did not want to be a pain and complain about the way I was feeling. Instead, I ignored the way I was feeling and we made plans to drive to Tombstone, AZ. 

We hopped in the car and drove the three hours it takes to get to Tombstone - where it was also pushing 110 degrees. Tombstone is a historic western town deep in the desert, so there is a lot of walking and site-seeing in extreme temperatures. I was getting worse as the day went on, but kept trucking on. At one point, a women who worked at one of the historic buildings looked at me and asked "Are you okay? You look pale." I just smiled and said I was fine, but I was getting worse.

We eventually ended up in a building that had air conditioning and we purchased bottles of water. After several hours of making our way through the tourist trap, we got in the car and made the drive back to Phoenix. After eating supper at Burger King, I felt much better and thought that maybe I was just hungry.

The next morning, I woke up quickly and ran to the bathroom where I threw up. I was immediately irritated that I couldn't decide if it was an endo-related vomit or if the heat had gotten to me from the day before. Still, we had plans to meet up with my grandparents again and we drove to their hotel. I took a shower, and pushed on. 

After talking for several moments, we decided to drive the Apache trail and see some of the lookout points. On one of the lookout points, we had to walk 500 feet to see the view - either the walk was more than 500 feet or I was just too sick to handle it, because I felt that I could pass out. Walking back to the car, I was so nauseous and weak I almost wondered if I would pass out. 

I hopped in my grandparents rental car and took a nap. I slept most of the drive that I had been so excited to see (and the views were breath-taking). I also took two anti-nausea pills that were not taking the edge off. Something was really wrong but I did not want to ruin my grandparents first trip to Phoenix, so I ignored the symptoms.

Fast forward two days, after my grandparents had left. I called in to work, because my nausea was out of control. I did not know what was wrong with me. After several days of misery, I realized that I needed to go to the Emergency Room.

At the emergency room, I was immediately given a room where a doctor heard all of my symptoms and medical history. The doctor told me that they wanted to give me a pregnancy test, but I did not think anything of it.

Until....

The doctor came in to tell me that my urine test was positive for pregnancy. She told me that she was going to send me to ultrasound to see the baby. I was in a state of shock, then my husband looked at me and smiled. That is when the tears began to flow.

I was a woman, with endometriosis, a blocked fallopian tube and a short supply of eggs who had been trying to conceive for five years. I had began to accept that it was never going to happen, but there I was. 

Getting my first ultrasound on 6-14-2013 to see my baby. 

Our baby. 

I was able to see our baby and hear our little one's heartbeat. It was the most amazing sound ever. 

So there you have it, the infertile woman behind Hello Endo is pregnant. 7 weeks to be exact. I could not be happier. 

The reason for 5 days of nausea was morning sickness - I am officially a mommy.

xo Heather 

For this child I prayed (I Samuel 1:27)

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

Non-Profit

As some of you may know, I am in the beginning stages of starting a non-profit organization. 

The non-profit will be for women who are currently suffering from endometriosis.

I am in the process of getting the paper work completed, consulting with possible non-profit lawyers, and getting a website established for donations.

I can tell you the the non-profit will focus on the lives of women who are currently suffering from the disease. As far as any other specifics, I am going to keep that private for the moment. 

I am needing your help in brainstorming names for the non-profit. I would appreciate any ideas you may have!

Let me know!

P.S. Don't forget that tomorrow is the last day for the EndoFemm drawing! Make sure you sign up!

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

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

Update: 1/19/13

Sorry that I haven't posted an update lately. I took a little time away to process my thoughts & let everything sink in. I was debating on sharing my HSG results with everyone, but have decided to do so.

As many of you know, I had a hysterosalpingogram (HSG test) on Thursday. The HSG test is designed to assist fertility doctors in locating any blockages in the fallopian tubes and ovaries. I was extremely nervous about getting this test done because my fertility doctor had already mentioned concerns about why I had not experienced any pregnancies yet. He was also very concerned that my reproductive organs may have been damaged during my initial laparoscopy.

I really did not want to hear bad news, and was doing my best to remain positive.

I was able to get the results while laying on the table. Before I was even allowed to sit up, the doctor asked if I had any trauma or surgeries on my right ovaries. I knew something was very wrong when he asked me this. I told him that I had the laparoscopy and he did not seem to pleased.

He showed me the x-ray pictures, and it was like a cartoon flip book. I saw the catheter in my uterus before the dye was inserted, and then saw the dye spreading through my organs. The dye filled my left fallopian tube and ovary with no problem. However, my right side did not allow any dye to pass.

(Photo Credit: Island Reproductive Services)

 Nothing. Not even a single drop. 

I can't really describe the feeling of seeing that. It felt like I had just been kicked in the gut. 

Dr. Patel, one of my Fertility doctors told me that I will need to have to have another HSG next month. If there are no changes to my right organs, he told me that "We will have to have a serious talk." I didn't ask him what he meant by that because I was very upset and was trying not to cry. I imagine that it means my laparoscopy will be even sooner than springtime.

The test is not the most pleasant experience either. I have e-mailed my other fertility doctor, Dr. Amols, to see if I will have to have another HSG. I am hoping that I can get out of a second test if Dr. Amols can obtain my laparoscopy results. 

I know that you are probably still thinking that I still have my left-side, and you are right. However, my right ovary actually has more eggs than my left ovary.

So far, I will be waiting impatiently until next month when I will find out if my right fallopian tube and ovary are completely blocked. It is going to be a long month.

Have you experienced a less than normal HSG test? Have you experienced any damage to your organs as a result to a laparoscopy? How do you cope? 

xo Heather 

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: 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