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

 

 

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

Endo Journey: Dominica

The newest Endo Journey post is written by Dominica. Dominica has been on a very difficult path while trying to be diagnosed. Please read on to learn about Dominica's life with Stage IV Endometriosis:

My story actually starts in 2006. But before we get into that, let me tell you about the symptoms I was having but never actually known what was going on. Growing up I never had bad periods. I didn’t have my first period until I was 16. They always seemed normal, lasted about 5 days, no bloating, no PMS, no painful bowel movements, medium flow, and since I had never had sex there was no pain to connect the two with endometriosis. It wasn’t until I was 23 that I started experiencing painful sex.

Looking back, this was more than likely my first symptom. I had been told that I had a tilted uterus so I just kind of figured that was it. I grew up never openly discussing issues such as this so I never brought it up to my Gyn. That subject was just something I didn’t share with anyone. I didn’t even tell my boyfriend at the time. It got to the point where I just couldn’t stand the pain. Now, I had been seen by a Gyn twice and everything was always fine. Since I did not have any insurance I had to use the Indian Health Services. In order for me to see a Gyn there I had to get on a waiting list and sometimes you had to wait 4-6 months just to get seen. Crazy right? I decided it wasn’t worth the wait and I could deal with the pain. I know. I was pretty naive. Around this time my periods started getting heavier. They started lasting from 7-10 days and the pain? It got to the point where I couldn’t move. I would stay in bed the first two to three days of my period because it was just too painful to walk, to sit, to do anything.  2^nd symptom? I would get so sick I couldn’t even eat because nothing would stay down. I also started feeling like there was a mass, in my right side. It’s hard to explain but I just knew something was there. It hurt when I laid on my right side, and as soon as I laid on my left, I felt some pressure being relieved on the other side. I dealt with this until I was 25, or until 2006.

I got married in March of 2006. We had come home from our honeymoon and I went back to work. 

At this time I still hadn’t gotten any insurance, I was working part-time at Michaels and was planning on getting on my husband’s insurance as soon as possible. That weekend, after we got home, I had some terrible pain in my right side. I had a fever and felt like I had the worst stomach ache ever. I headed to the ER at the Indian Health Services in Phoenix. When I got called in, at first they thought it was appendicitis. But after doing an ultrasound they ruled that out. Next, I had a doctor come in and do a vaginal exam on me. I told him EVERYTHING. He then left, not saying much, and moved me to a different room. This time a lady came in and asked to do another exam. I went over all my symptoms again and then she left. Uh? No one told my why they were even doing a vaginal exam. They ran some tests and came to the conclusion that I had some sort of bacteria in my intestines. I got admitted, staying in the hospital for 4 days. I was released and went back to work.

I continued to have all my “normal” pains and continued to work and try to live a regular life despite the pain. In September my pain was now a constant thing. I would be working and all of sudden have a sharp pain would cut across my lower abdomen. I remember standing in places for a few seconds until it passed, then continue working. By this time I was a Department Manager and being on my feet and lifting big boxes was routine. So, the pain was pushed aside. It was at the end of September, I was at work doing my normal daily routine and something happened. It was like someone had stabbed me in the right side. I belted over in pain and could not move. The pain was excruciating. I was in the middle of the aisle, with customers around and my co-workers staring at me. I started to cry. One of the gals I worked with ran up to me and offered to take me to the ER. I couldn’t even walk out the front door but I made it. Once I got to the ER I was admitted very quickly, put on Morphine, and taken for an ultrasound plus a CT Scan. Again, they thought it was my appendix but results came back negative. After reviewing my ultrasounds I was told I had some very large cysts on my ovaries. 

The result of my pain? According to them my ovary had flipped. The pain I was feeling on my side was all making sense to me. I knew something was there! I still didn’t know what was causing everything else. I found a Gyn to go to, since I had insurance now I didn’t need to go back to the Indian Hospital. My visit didn’t go well. My new Gyn told me I was fine. He couldn’t feel the cysts and sent me on my way. I was frustrated. How can one doctor tell me they see cysts and he not ‘feel’ any? I went back to work and vented to my Manager about what had happened. That was when he suggested I go to Mayo Clinic. I called right away. 

It is now October of 2006. The day of my appointment I was pretty nervous because I had no idea what was going to be done. I was tired of ultrasounds and exams and just wanted some answers. We went through the normal questions about how I was feeling. I did mention to her that I was having very painful periods and pain during sex. Now that I think about it I don’t think any red flags went off for her that I had endometriosis. After the questioning she pulled up the results of my ultrasound. I had a 6.5 cm cyst on my right ovary and a 4.6 cm cyst on my left ovary. That was when she brought up surgery. I freaked, I was not prepared for that. 

I’ve never had surgery, I’ve never had a broken bone, and I had never been hospitalized for anything serious except for the 4 days at the beginning of the year.  As I was sitting there she then proceeded to tell me that the surgeon was actually next door meeting with his patients and she wanted him to take a look at my ultrasounds. I gave her my consent and she left. When she returned it was agreed by both her and the surgeon that I needed to get in as soon as possible. I said, “Let’s do it.” I was scheduled for surgery the 3^rd week of November. 

A few days later I got a phone call. Guess who it was? The Indian Hospital in Phoenix. Guess what they found? Mind you it’s been about 6 months since I was hospitalized there. Yup, cysts showed up on my ultrasound and I needed surgery. I remember laughing at the doctor on the phone. He must have thought I was crazy. To think, that if they had found that out earlier I could have avoided all the pain I went through the previous month. I told the doctor, “Yea, I know. I’m already scheduled for a surgery but thanks anyways.” Because of the largeness of my cysts I was put on a waiting list with Mayo Clinic in case anyone had canceled a surgery. Lucky me, I got a call saying they could get me in sooner. Of course I accepted. 

The day of my surgery I got called back to my room, changed, and waited. The doctors who were going to be in my surgery came into my room and introduced themselves. My surgery was to last only an hour. My husband was told to leave, wait in the waiting room and he would see me in an hour. I don’t remember much after that. When I woke up my husband was sitting next to me. I was in and out for more than an hour. When I was finally able to stay awake, my husband told me my hour surgery turned into a 5 hour surgery. It wasn’t just my cysts they had found but something called Endometriosis.

Recovery from the surgery took me four months. After recovering I was finally able to go into my Gyn at Mayo to discuss this disease called Endometriosis. This was when I learned I was diagnosed, at 25, with Stage IV Endometriosis. See, I knew I had Endometriosis but this was the first time learning what stage I had. Ok. So now what? My Gyn then told me she wanted to put me on the birth control. This would help with the cysts and endometriosis. I was hesitant because I wanted to have kids and pointed that out to her. That’s when she told me my chances of having any kids were about 5%. I was devastated so, I agreed to go on the birth control. I stayed on the birth control for about 1 1/2 years. During that time I had become depressed and started having anxiety attacks on a daily basis. I withdrew from my husband, my frens, and my family. I was always sad and wanted to be left alone and just didn’t care about anything.

I had this disease that was affecting my quality of life and I didn’t know what to do or where to turn. That was when I decided to go off the birth control. And there was some small hope that maybe; just maybe I could get pregnant despite the endometriosis causing infertility. So far, I wasn’t having any major symptoms of endometriosis. I was still having long periods, and the pain wasn’t so bad. Every time I tried talking to my doctor she would suggest that I go back on the birth control and I just did not want to. She then suggested if I wanted to get pregnant then I should go see a fertility specialist. She gave me a name and I went. I remember that after my surgery I was told to go back in 2 months later so they could do a dye test on my fallopian tubes to see if they were blocked. I put it off because of everything else that was happening to my body after the surgery. This was one of the first tests my Fertility doctor gave me. I was fearing for the worst and preparing myself for bad news. It was the most painful test I have ever taken to this day.

The result of the test showed that my fallopian tubes were clear and open. Good news! I was told that they could probably do a successful IVF but the cost of it all put a stop to it then and there. So I went on my way.

In 2011, my symptoms started coming back. Painful bed ridding cramps during my period, pain during sex, and those random pains shooting across my pelvic area. This time around I knew what the cause was. But with no cure or medication to reverse the effects of endometriosis I just figured I was on my own. My Gyn doctor was no help to me and the fertility doctor was not an endometriosis specialist. I just figured I made it this far and I could handle it. At the beginning of 2012 I started having pains in my right side again. I knew right away what it was. Without a doubt my cysts were back and getting to that size where I could feel them. Not again. I decided I needed to do something. I had to change everything. My outlook on what was handed to me, I needed some positivity in my life, and I sought out counseling to help deal with my infertility. I then found a doctor who specialized in Endometriosis in AZ. I called and setup an appointment. I was actually excited to be going to a doctor’s office because I felt like I could get good help this time around.

Since seeing her I have learned so much more about my Endometriosis and exactly what it is doing to me. She explained it to me like no one has ever been able to. I’ve done my regular Google searches and looked at pictures and read articles but no one ever sat me down and told me the severity of my Endometriosis. I learned, 5 years later, that my Endometriosis was so severe that when they did my surgery I should have had a hysterectomy. What?! But because of my age they chose not to. No one ever told me this!  I even learned that they diagnosed me with Pelvic Inflammatory Disease. No one ever told me this! I would think my own doctor, who I followed up with after my surgery would have shared this information with me. She then gave me a copy of the notes from my surgery, which I had never seen before. This was my first time seeing everything that went on. Every time I requested my records I had only received my labs and images and blood test results. I read that they removed fibroids from my uterus. And I was never told. I also read that I was supposed to go in three months after for a second look lap. I was never told this either. I was angry that I was never told or given this information and I was angry at myself for not asking. In that past year I have learned so much about what I need to ask and how I need to ask for things. It has been trial and error at the expense of my well being. I have accomplished so much in one year than I had in the previous 5 years just living with my Endo thinking I couldn’t do anything to help myself. 

Today, I feel like I am finally on the right track; that I am doing something right for myself. It’s made a huge difference on the days when I just want to throw in the towel and waste away. Fighting the depression has been a big struggle BUT knowing that I’m in control of how I handle it has been a great tool for me. So far I still depend on my pain meds to get me through my first couple days of my period. I take Xanax for my anxiety attacks when things get the best of me. I do feel exhausted all the time but I don’t get much sleep. I’m working on that. I deal with being anemic due to my long/heavy periods. In light of all that, I am now a foster mom. I figured if I can’t have my own kids at least I can be a mom to those who need one. It’s so hard to see women have kids and not take care of them when I want one so bad and can’t have any. That’s another topic for another day. But I really wanted to take a negative and turn it into a positive so becoming a foster parent was part of that. As for my plans for the year, I have been directed by my current Gyn to seek out surgery and have been looking for a surgeon. 

I’m hoping to get my second surgery before summer time is here. I am doing my best to have a positive outlook on everything that has happened to me. It has not been easy, but some days it’s possible. I believe that whatever the doctors have said is impossible, God can make possible. I am not giving up faith on having kids or being endometriosis free. That is my hope and I am not letting go. Hold on tight ladies! Hope can give us strength. We can all get through this together. 

                                 

                                                           

Thank you for sharing your story, Dominica. You are very strong, and I hope that you are able to have the children you truly deserve. It takes a very brave, kind, and loving person to become a foster parent and I wish you the best!

If you have a story you would like to share, please leave a comment below!

xo Heather

Endo Journey: Lynn

The following Endo Journey is Lynn Nelson's personal struggle with endometriosis. I am happy to share Lynn's story and hope that you also find it inspiring:

Over the years, I had always had trouble with my cramps and periods. Never thought much of it, until I was with my long term boyfriend and intercourse became extremely painful. It wasn't enjoyable anymore. So I went to the doctor to get an ultrasound. I got the call back, and I went into the office assuming the worst.

I was informed that I had an ovarian cyst on my left ovary. He informed me that it wasn't a major concern and sent me to a Gyno. The Gyno did the regular check up and said it would eventually rupture and I could move on with my life. 

Well, it didn't get better. It actually got worse. 

So a few months later, I went to another doctor and requested an ultrasound. I got the call back informing me that they referred me to another Gyno and that there weren't any concerns, again. I wasn't even in the doctors office 5 minuets when he informed me I would need surgery, to remove the cyst. It had begun to pull on my ovary and was clearly causing lots of pain. It was also growing in size. We booked surgery to happen a few months later. 

He informed me that he wanted to take photos, so I could see the cause of the pain. After waking up from surgery, I was a mess. I was so nauseous and I felt like crap. I went to leave, and I was informed that he only prescribed me T3's, after pumping me full of the good stuff. So the nurse on duty, gave me something to cope with the pain. I wasn't due for my after surgery check up for 4 weeks. 

In those 4 weeks, I was a mess.

Always in pain, bloated and cranky. Once those 4 weeks were up, my boyfriend and I went into the office with light spirits, but left with heavy hearts. See, the photos I was given, I assumed were of my cyst and then the one with the cyst removed. We were totally wrong. 

The doctor informed me that sometime before surgery, my cyst had ruptured. And in fact, I have Stage 2 Endometriosis, teetering on Stage 3. Because I was so use to the pain, the cyst rupturing felt like nothing. He explained that the scar tissuing was causing all the pain and that when I bled, it bled. It explained it all. The pain, the random cramps. He went on to tell us that fertility could be effected by it, but it wasn't a for sure. I was only 19, I was devastated. To know that I WILL have to endure more surgeries in my future and that I may not be able to conceive a child of my own, really hit hard. 

I was blessed with a boyfriend that got it all. He would get me heating pads, pain meds and do whatever he could do to help me during those rough times. 

Unfortunately, we aren't together anymore. And to be with new people, intimately is tough. I don't know how to tell them that sex may hurt me and we will have to stop. None the less, I'm stuck with the rest of my life and in due time I will figure out how to tell others. 

I feel like everyday is a battle with my body. I'm currently on the Depo shot, which helps out a ton. I'm blessed enough to not get my period on it, but if I'm late in updating it, I get the worse periods. They can paralyze me and make me incapable of doing anything. On the outside, I look like a care free young adult. On the inside, I'm slowing deteriorating from pain.

It's life as I know it though.

                       

Thank you for sharing your story, Lynn. You are a very strong woman. It isn't fair that we have to suffer for so long before getting the answers we deserve. 

Despite having a difficult time with doctors, Lynn continued to fight to get answers for her pain. Her story is very encouraging. She is an amazing example of the courage and strength!

If you would like to share your personal Endo Journey, please leave a comment below or e-mail helloendoblog@gmail.com

xo Heather

Surgery #2

On January 31st, I will have my second surgery. My first surgery was a laparoscopy for endo, but this surgery is for my IC symptoms. 

I will be having a cystoscopy with hydrodistention. This is not my first cystoscopy, but this will be a much more invasive procedure. If you would like, you can read about my first cystoscopy here. Thankfully, I will be given anesthesia this time!

 I am very worried about this procedure. I had surgery just under 2 months ago and worry that I may put my body through too much, since I will have a robotic laparoscopy in the spring that will last several hours (more on that in another post).

On a recent doctor's visit, I was told that I will most likely be sent home with a catheter after the hydrodistention surgery. Ever since being told that, I have been very upset.

I do not know why I should be sent home with a catheter. Why can't they keep me overnight or as long as needed for my bladder to heal before sending me home? As much as I want to feel relief and to get back to work, I will not go to work in the shape that I am in.

I am putting myself through so much to "feel better." I know that I am not alone, but I am very scared. This whole experience has been terrifying. 

As the days get closer to surgery #2, I am getting more and more nervous. I am even more scared for my upcoming surgery then I was for my laparoscopy. I also have been experiencing anxiety and depression. I am in pain, nauseous and weak all of the time. I swear that my endo is spreading so much that it is pushing on the nerves in my back. I keep getting a painful tingling sensation in my back.

I am also missing my parents and sisters. I wish that they could be here for my upcoming surgeries, but I know that it isn't a possibility. I have my husband, and he has been amazing through this whole experience. I am so thankful for him.
 

 Please keep me in your prayers. I am trying very hard to remain strong. But, even the best fall down sometimes.

Maybe if I have a good cry, I will feel better. 

xo Heather