Impatiently Waiting

A year has come and gone. I was officially diagnosed with endo on 11-7-12 and the last year has been bittersweet. I continue to struggle with my illnesses, but now I am carrying my daughter under my heart. There is no better feeling in the world.

I am currently 29 weeks, 5 days pregnant and I can honestly say that I never thought I would see the day when I had gained 24 extra pounds from pregnancy. I am feeling so blessed despite the new found weight gain. 

I do have to admit that I am growing very impatient and am ready to meet her. Each day I am getting more and more anxious for my pregnancy to be over and hold her in my arms. I do not want to sound ungrateful, because I am pregnant. I never thought that I would be able to experience pregnancy and being a mother. For that I am extremely grateful. However, as my baby girl and uterus continue to grow, I am struggling more and more with daily life. My expanding uterus is pushing on my bladder more and my muscle spasms have been almost unbearable. I say almost, because somehow I am managing to still force myself out of bed four days a week and work twelve hour shifts. 

I honestly do not know how I am doing it, and am constantly surprising myself at the end of each day. My motivation has been that I do not have a lot of vacation time after being off for five months last year. I want as much time as possible with Ellie. 

In other news, we purchased her car seat and jogging stroller recently. I am super excited about taking walks with her and am very impressed with the ipod dock on her stroller so she can listen to music on walks! Her nursery is starting to come together nicely and I cannot wait until her room is complete!

Do you have any experience with pregnancy and illness - how did you cope? Also, leave a comment below if you want me to share pictures of the baby room when it is finished!

xo Heather

P.S. I'll leave you with a picture of my super adorable nephew (he was making faces at his auntie)!

 

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)

Endo Happy: Are You an Endo Warrior?

Image Courtesy of Katie with Endo Happy

 An Endo Sister's Guide to Living with Endometriosis

• An "EndoWarrior" eats healthily, says no to junk food and educates herself about the "EndoDiet" and incorporates it into her daily life knowing that it may help with her symptoms and long term care.

• Empowers herself by finding out as much as she can about Endometriosis and knows she deserves and is entitled to the best medical care available to her. She doesn't accept no for an answer from any medic and gets a 2nd/3rd opinion if required.

• Knows that there is no 'normal' everybody is on their own journey and doesn't compare her life to anybody else's.

• Is proud of every scar on her body, she knows they represent the battles she had fought and won.

• Takes time to rest and relax. She accepts that Endometriosis is disabling at times so doesn't try to do everything, instead spends her valuable time doing the things she enjoys and says no to the things she doesn't or that give her stress.

• Takes time to exercise (if possible) at least once per week as she knows it makes your mind and body stronger.

• Promotes awareness of Endometriosis by telling friends, family and others about it.

• Continues to work towards the goals she has in life, she knows that it doesn't matter how long it takes to get to them just that they are achieved.

• She acknowledges that depression is common among chronic illness sufferers and talks about her feelings, and asks for help when required and knows it is okay to be emotional and cry!

• Lastly, she knows that she is perfectly 'imperfect' and feels proud of everything she has achieved! She accepts herself as she is and knows she is worthy of love, kindness and respect.

                                          

For more words of encouragement on surviving a life with Endometriosis, please follow Katie on Twitter!

xo Heather

Healthline: How to Reduce Endometriosis Symptoms through Diet and Exercise

Endometriosis is a painful condition that affects between five and ten percent of women and can make the discomfort of menstruation much more extreme.

During the normal menstrual cycle, the endometrial tissue grows inside the uterus and is expelled during menstruation. Endometriosis occurs when this tissue grows outside of the uterus, sometimes attaching to other organs and causing significant pain, bleeding, and inflammation.

The symptoms of the condition tend to get worse with time if they go untreated, so treatment is vital to combat this condition. In addition to medicinal options, diet and exercise have been shown to have a beneficial effect in dealing with the symptoms of this condition.

Benefits of Exercise

In general, the benefits of exercise are somewhat mixed in terms of their success in alleviating pain that results from endometriosis. Among the side effects of this condition are extremely painful periods, pelvic soreness, fatigue, and pain because of exercise. Because of that, women who experience endometriosis are typically hesitant to pick up new exercise routines to combat the symptoms of their condition.

Still, exercise can have certain positive effects. One of the benefits comes before the condition develops. Research indicates that women who exercise vigorously are far less likely to develop endometriosis, although there is less of a pattern for women who exercise less.

For women that have already developed the condition, some level of exercise may help alleviate some of the pain. During exercise, the body releases endorphins, which are natural chemicals that relieve pain and improve mood. These feel-good chemicals work for everyone doing exercise—not just those with conditions that cause significant pain—but this endorphin production can be especially helpful in dealing with pain as significant as that caused by endometriosis.

In general, light to moderate exercise is advised for women with this condition. Exercise beyond that may be impossible, as the body experiences more pain with high levels of exertion. Exercises like walking and yoga, however, require relatively little stress on the body and can produce endorphins to provide some level of pain relief.

Dietary Suggestions

Diet appears to have a much more significant effect on symptoms, so it is important for women that experience this condition to focus on regulating their diet with the proper nutrients.

Certain fatty acids can aggravate pain that is caused by endometriosis, and others can help to relieve that pain. The bad kind of fatty acids are found in foods like meat, dairy, and palm oil, so women with endometriosis would do well to cut these foods out of their diet as much as possible. On the other hand, omega-3 acids fall in the good category, so it helps to consume plenty of food that includes these compounds. Examples of foods that are high in omega-3 fatty acids are salmon, olive oil, and legumes.

Cutting meat and other animal products out of your diet carries the risk of having an unbalanced diet, with too little protein and calcium intake. Having a balanced diet is vital for stabilizing your hormones, and hormones are ultimately responsible for the development of this condition. Thus, balancing your diet with the right nutrients is vital. To keep your protein levels high, replace meat products with foods like tofu, nuts, and fish, and replace the calcium that you get from animal products with leafy greens, almonds, and tofu.

There are a few foods that you will want to avoid in case of endometriosis and other conditions, like arthritis. Caffeine and refined sugar are two of them, as these ingredients tend to result in nutrient loss, allowing additional pain and inflammation to occur in the body because of endometriosis.

Valerie Johnston is a health and fitness writer located in East Texas. With ambitions of one day running a marathon, writing for Healthline.com ensures she keeps up-to-date on all of the latest health and fitness news.

                                       

Special thanks to Valerie Johnston of HealthLine for sharing such an informative post. 

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

Endo Journey: Endo Star

The following Endo Journey post comes from Endo Star, please read on and wish my lovely friend well wishes for her upcoming surgery!

 

 

My periods started the week before my 11th birthday. They weren’t painful or heavy to start with but they were irregular and a bit of a nuisance, which I guess is pretty normal in the beginning. By the time I was 12 they had got much, much worse and were heavy and painful. The pain got so bad it was causing me to vomit and pass out, I was getting migraines, and I was missing school because of it. I would spend my time curled up on the bathroom floor waiting for the pain to pass. I went to my GP who decided to put me on the contraceptive pill and give me mefenamic acid (Ponstan). I also got tested for anaemia because the bleeding was so heavy, but that came back negative.

The pill seemed to help with the heaviness, but I still had the pain. I thought it was just one of those things and I was one of the unlucky ones. By the time I was 13 we had moved to a different area and I had a new GP. I spoke to them about it throughout my teens, and must have tried about 5 different variations of the pill during that time. During my GCSEs it was really bad, and I remember my GP saying to me it wasn’t normal to have this pain, and that he’d keep trying to help make it better. Sadly he left not long after that so things didn’t quite go to plan! I got stuck with a different GP and I think I just got used to being in that much pain during my period, I sort of gave up on finding anything that would make me better.

A few more years passed by, I started working full time and moved out of home. I carried on taking the pill and using ibuprofen and paracetamol to help with period pain, which I had just learned to put up with. When I was 21 the pain went up another couple of notches and I was finding it hard to cope with it again. I had to start taking codeine which only really took the edge off, but I managed. My job meant I was on my feet for 8 hours+ every day, and looking back I don’t know how I did it!

A couple of years later when I was 23 I had settled at yet another new doctor’s surgery. By that point I’d started to develop new symptoms, I was feeling nauseous most of the time and barely eating, getting stomach cramps and constipation. This wasn’t normal for me so back I went to the GP. They did blood tests and various other tests to rule out any gastrointestinal problems, which all came back clear, so I was diagnosed with IBS. I was given tablets including peppermint capsules to try which didn’t seem to help me at all. I was fed up, didn’t believe I had IBS, and felt I’d been fobbed off. Yet again I just put up with feeling rubbish!

I also started getting urinary infections (or UTIs). I say these were infections, but rarely would a test actually show any infection, I just seemed to have the symptoms of one. I was getting one or two of these per month for about a year, which was pretty miserable as I’m sure you can imagine. I had just got together with my partner after being single for a while, so it was sort of put down to being ‘honeymoon cystitis‘. This problem was never investigated and thankfully it stopped happening after about a year, although some of the symptoms would crop up again in the future.

It wasn’t long before the symptoms got worse again. It seems like every time I got used to a level of pain or some symptoms, another would appear and the pain would get worse! I started getting rectal pain during and about 1 week after my period. It’s hard to explain this pain, but it felt like there was pressure deep inside, and sitting down was almost impossible. I knew this was NOT normal. I asked the GP about this and was told it was common to have pain there as the organs are so close together, and had I thought about getting pregnant? I was only 24 at the time and hadn’t been with my partner all that long! I saw another GP about it a couple of months later and they were even worse, they told me it was probably constipation causing the pain and to eat more fibre. I was made to feel like a time wasting hypochondriac. I can’t stress enough how upsetting this all was. I knew what I was feeling wasn’t normal, but no one would listen to me. What could I do?

This was around the time I first heard of endometriosis and it was only because my mum mentioned it. I googled the symptoms and couldn’t believe how familiar it all sounded. By this point I’d started having pain during sex as well but I kept this to myself, I was embarrassed by it. I mentioned endometriosis to my GP who more or less dismissed it, telling me the only way to diagnose it was by having a laparoscopy which was an invasive procedure, and should be avoided. We’d continue to treat me with the pill instead, but I would start taking 3 packs together without a break.

Another year or so passed and I was still getting this pain, and the IBS symptoms were making me miserable. It didn’t seem to matter what I ate, I would get bloated and/or feel sick. Yet another trip to my GP beckoned. I managed to see a different one this time, and she decided to refer me to the hospital to have an ultrasound scan. I needed to have a full bladder for it, and I just happened to have cystitis at the time. Nightmare! Every prod and poke was agony. They mentioned they couldn’t find my left ovary, and they did an internal ultrasound for that reason but it was still nowhere to be seen. ‘Probably your bowel getting in the way’, they said.

The internal ultrasound was probably one of the worst of all the tests I’ve had done! The thing was massive, and they moved it around loads inside which felt truly horrible. They didn’t seem too bothered about my missing ovary. Needless to say, my GP told me the scan was clear and finally referred me to a gynaecologist. While I was waiting for my appointment I had a smear test done. I’d had internal examinations done before so I wasn’t too worried about it, although I knew it would be painful for me. The nurse told me that she could see a cyst at the opening of my cervix and I should tell my gynae about it at my appointment.

I was so nervous about my first appointment with the consultant and didn’t know what to expect, but I had high hopes that finally I was going to be listened to and taken seriously. The consultant was blasé about my symptoms, and when I asked about endometriosis he said it was unlikely I had it. He thought it was probably just ‘one of those things’. I really felt like I was wasting his time and that as a woman I just had to deal with this pain and other symptoms. He did however agree to do a laparoscopy to find out for definite. I told him about the cyst on my cervix and he asked me if I wanted him to check it! I couldn’t believe his attitude. He told me it was quite large and would need to be removed, so he would do it during my laparoscopy. My surgery was scheduled for 3 months later, and I felt sick with nerves. I was torn about what outcome I wanted, I knew that if it was endometriosis I’d be stuck with it for life, but if it wasn’t I’d still be stuck with the pain as there would be no explanation for it.

For various reasons my surgery was cancelled twice, both times I was literally in the gown and stockings waiting to go to theatre. I was already extremely emotional and on edge so by the 2^nd cancellation I was gutted. By now I was also struggling with anxiety due to the fact I permanently feel like I need to go to the loo, both my bladder and bowel always feel full which is so uncomfortable and makes me panic when there isn’t a toilet nearby.

Finally my surgery was going to go ahead (age 27 at this point). I was going to get some answers! I had a bit of a wait as I wasn’t first on the list. It wasn’t my first operation but I still felt a little nervous about the anaesthetic, my heart was racing and I generally felt quite anxious. I had no idea how much pain I was going to be when I woke up, or what they were going to find in there. I walked myself to theatre and lay on the cold table; the anaesthetist was lovely and made me laugh before asking me to relax and putting the cannula in my hand. I’m OK with needles, which is quite handy as I must have had hundreds of blood tests done over the years.

Next thing I knew, I was awake and having a bit of trouble breathing and swallowing. I tried to feel my tummy to see how many incisions I had but couldn’t move my arms properly yet. I could hear them talking about the pain relief I’d been given, diclofenac and morphine. I was quite lucky that I couldn’t really feel any pain at all. It wasn’t long until the nurses were asking me to get up and dressed, then the consultant came in. It wasn’t one I’d seen before, he was a locum. I was told they hadn’t found any signs of endo, but that my uterus was very badly stuck to my pelvic wall. He also said my left ureter was very high up, and that he thought there had been a developmental problem with my uterus. None of this really made sense to me, not helped by the fact I was still woozy from the anaesthetic! I sat there on my own thinking “I’m a freak! I’ve got an oddly shaped womb! I’m not going to be able to have children!” and then came the tears again.

I was so disappointed. I didn’t understand what had been found, and I didn’t have the answers I’d been longing for, for so long. I was booked in for an MRI scan 6 weeks later, which was another one of the worst experiences of my life. I was in the scanner for 45 minutes, being told when to breathe and when not to breathe, and listening to awful chart music in one ear as only one earphone was working. A couple of weeks later I went back to the consultant to get my results, and finally he confirmed I have endometriosis. He said it was ‘very bad’ and that my ureter was stuck to something due to endo, and my bowel was involved. I would need open surgery but he had to discuss my case with a urologist first. More waiting! I went back a month or so later to be told there was no point operating as I’d probably still have pain afterwards. That was the urologist’s opinion which I thought was odd, surely the gynae should be deciding these things?! I asked if there was anything that could be done, and he said to keep taking painkillers, get pregnant (that old chestnut!) and that I could get a second opinion if I wanted to.

I was angry, upset, confused, disappointed, and felt completely hopeless. My family and boyfriend were furious and wanted me to make a complaint about the way I’d been treated. I decided to get a second opinion from a specialist endometriosis centre in London; I knew it’d be a long wait so I paid to have a private consultation with one of the gynaes who work there. I have to say it’s the best money I’ve ever spent! He was absolutely fantastic, and has given me so much hope. My appointment lasted 30 minutes, he examined me, although beforehand he acknowledged that he knew it would be extremely painful which was a first for me. It was amazing that someone finally ‘gets’ it! To my horror he said he could actually see endometriosis – I didn’t even know that was possible. He explained that I have severe deep infiltrating (stage 4) endometriosis, involving the ureter, left uterosacral ligament and rectosigmoid colon, and that my left ovary is very stuck to my pelvic wall. I’m now waiting for surgery and to hopefully start getting a somewhat normal life back.

Clear Passage PT: Get to Know Endo

In honor of Endometriosis Awareness Month, Clear Passage Physical Therapy is sponsoring an endo treatment give-away!

Photo Credit: Clear Passage Physical Therapy

To enter the “Get to Know Endo” Campaign, simply share your endometriosis story (and photo, if you choose) on the Clear Passage Facebook page – that’s it!

The stories that receive the most “Likes” will win:

• First Place: A Free 20-hour Treatment Program ($5,200 value)

• Second Place: A 20% Discount on the 20-hour Treatment Program ($1,040 value)

• Third Place: A 20% Discount on the 20-hour Treatment Program ($1,040 value)

 

 Clear Passage is a network of clinics to which patients travel from all over the world. You can find more information about Get to Know Endo and Clear Passage here: http://www.clearpassage.com/get-to-know-endo/