Monday, 28 January 2013

My story: Marcy Hanson.


Marcy blogs over at No Maybe Baby, where she shares her journey with endometriosis. She is also in the process of getting her book published, which you can read more about here and below. Today, Marcy shares her story with us...



Hello friends! I’m so glad you’ve found your way to this blog, and hopefully to some peace, hope and sisterhood as well! I’ve volunteered to share my story with endometriosis, and the funny thing for me, is that it really begins at the end. Well, the end-ish. But that’s not very fair to you, dear reader, so we’ll start at the best place possible, about 12 years ago. 


See, about this time is when the dear hubby and I started to think about trying to get pregnant. We weren’t really set to get knocked up at any specific time (well, he wasn’t maybe, but this girl wanted babies!) so we decided to stop trying to not get pregnant. I’m the youngest of 5, and no one in my family, or his for that matter, had ever had any difficulty getting pregnant. So we sat back and waited for it to happen. And then we waited, and we waited, and we waited.

I started to get a little freaked out. Surely I would get pregnant. Maybe we just weren’t timing things right. 

I started doing research and tracking everything. My temperature, my periods (which were so irregular they were hard to keep any track of) and everything else. After three years, it was still just the two of us. So I decided to make a doctor’s appointment to get things checked out. 


My periods had always been irregular and cramping wasn’t something I had missed either, but surely these were things that all girls dealt with, right? According to my doc and all the blood work - yes. There seemed to be no rhyme or reason for my lack of pregnancy, so she said to just keep trying. And everyone else pitched in their two cents worth also. I don’t know how many times I’ve heard “just relax” or “you need to stop trying” or “it’ll happen”. Ugh. Pithy platitudes only go so far. And when you’re trying to get prego, they don’t go far at all. But we kept trying. 


Over the years, I went to medical doctors, nutritionists, chiropractors and acupuncturists. I was poked, prodded, timed and temperatured. I changed my diet, my exercise, tested my faith and curled in pain. After about 6 years I finally got my first diagnosis - Polycystic Ovarian Syndrome or PCOS. But all the doctors swore they could help me get pregnant. So I underwent a new round of evaluations. I had ultrasounds and saline flushes to test patency of my uterus. I was told I had cysts 3 inches big in multiple places on both of my ovaries. I asked about endometriosis, but was told I didn’t have it. It was all about the ovaries. But it was OK, they were still going to help me get pregnant.


So I started a new round of treatment. I tested for ovulation for two weeks every month and had periods the other two. My cycles had gone from not only irregular but I would begin spotting or lightly bleeding, which would last for two weeks, and then start a regular full-blown period. I was exhausted all the time and likely a bit anaemic. And I still wasn’t ovulating. So my doc put me on Clomid, which helps you ovulate but it also increases your chance for ovarian cysts. It was kind of a catch 22. Sometimes you can’t win for losing. I tried a few rounds of the Clomid but to no avail. So they decided to give my ovaries a chance to chill out and put me on birth-control to regulate my periods. That worked for about four months and then my body became used to the hormones and my periods took over half my life again. Eventually I found a new doctor and begged her for help. 

I was at my mental and emotional end for trying to get pregnant. By this time we had adopted our daughter from foster care and were in the process of adopting twins. While I desperately wanted to get pregnant and experience motherhood in that way, I wasn’t sure I could do it anymore. The emotional and mental strain was just too much. And it shouldn’t be that difficult! Why was it that everyone else had no problem getting pregnant but I couldn’t? That all these people who were wretched parents had multiple children and I couldn’t have just one? I was done. Giving up. PCOS wasn’t supposed to be that hard to battle. But apparently mine was. I begged for a hysterectomy but my doctor wanted to give it a little more time. Without a choice, I agreed.


Soon my husband was offered a new job and we found ourselves moving out of state and far away. While I was tired of trying to get pregnant, the Clomid was the only thing that seemed to regulate my periods. It just had the lovely side effect of making my already present cysts bigger. So while my periods were finally somewhat regular, I found myself in the doctor’s office and ultrasound room to monitor my ever present personal demons. I was able to find a new doctor and for the first time, someone listened to me. She agreed that I had fought long and hard to get pregnant and if I didn’t want to try any more, I shouldn’t have to - regardless of what other docs and all my friends and family said. She understood that the only successful treatment for my condition would be a hysterectomy so she referred me to a surgeon with new fancy schmansy  robotic surgical abilities, and I made my first appointment.


My surgeon was phenomenal. We discussed my history and concerns and she agreed to perform my surgery. As time drew nearer to my surgical date, the calmer I became. I started blogging about my experience and pitched the idea to a publishing company. They took the idea and signed me for a book contract. If others had to deal with this, I wanted them to know that they weren’t alone. 


The morning I went under the knife, I signed away my uterus and potentially both of my ovaries. We had discussed leaving at least one of the cyst-ridden darlings, for hormonal control and bone density, but if it came down to it, she had the legal go ahead to take both.


One of my first memories after coming out of the anaesthesia induced haze was of my surgeon. She gently swept a stray hair behind my ear and with a look of relief told me that I was going to be feeling much better now. When she came into my hospital room for her first post-op evaluation, I knew why. She told me she didn’t know how I had tolerated what I had for so long, that not only were both of my ovaries completely obliterated by the cysts, I also had extensive endometriosis. It covered my intestines, my stomach, and various places within my abdomen. They took out what they could, but she warned that it was far more extensive than my surgery would be able to manage. And with the state of disrepair both of my ovaries were in, she took those too.


So now I knew. I had questioned endometriosis but no one had thought I was correct. I knew PCOS couldn’t be the only reason for my infertility, and I was right. And the surgery wasn’t going to be my cure-all either. 


They took out the baby maker in July 2012 but I still have endometriosis. And while I no longer have a uterus or ovaries, I still get cramps like I did before. And I’ll continue getting those monthly reminders until all of the endometriosis clears on its own. So while I didn’t know for sure it was a cause of my troubles, endometriosis was always the silent culprit in my pain and infertility. Had I found out sooner, I may have been able to do things differently. But I didn’t. And that’s OK. We are all given our lot in life, and this was mine. And if my story can help someone else, then it was worth it.


You’re not alone, sister. You don’t have to suffer in silence. And as you face your own journey, I wish you peace and most of all, I wish you hope.


Take care,
~M



Thank you for sharing your story Marcy. Over the past year I've really come to understand your struggle and now I've been introduced to No Maybe Baby, I'll definitely be turning to it for a read. It's also interesting to hear from someone that's been through the adoption process. I am looking forward to your book being released and I wish you well on your future journey.

If you would like to contact Marcy, you can follow her on Twitter @MarcyNellHanson.

Can anyone relate to Marcy's story? Have you turned to adoption after trying for a baby of your own? Have you been diagnosed with PCOS alongside your endometriosis? Did you only realise you had problems when you started trying to conceive? Have you tried Clomid - what were your experiences?


Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read. 


S.

Saturday, 26 January 2013

My story: Ellen Greer.


The symptoms began when I was 12 years old. It started out as unbearable, debilitating menstrual pain. I was spending several days each month at home in bed with a heating pad. My mother tried to tell the doctors that something was seriously wrong. They dismissed it as normal, gave me ibuprofen, and told me to suck it up - this was just the price I'd have to pay for being a woman.


Foolishly, I believed them. Little did I know that I actually had endometriosis: a painful and incurable pelvic disease that affects millions of women throughout the world, and is a leading cause of infertility. The pain can be so severe that it is commonly compared with childbirth. To this day, endometriosis remains chronically under diagnosed, and is often treated ineffectively - if at all.

Today, at age 31, I have had a total of 3 laparoscopic surgeries, and have been subjected to the full gamut of expensive hormone treatments. I have had to deal with contradictory medical advice, ineffective treatments, and the ever repeating message that this is somehow “in my head”.

Over the years, my pain became more frequent, occurring between periods, sometimes as often as three weeks out of a month. I was given ineffective medications and strong hormone treatments. While providing some temporary pain relief, the hormones caused unbearable side effects such as headaches, nausea, vomiting, extreme weight loss and violent mood swings. More importantly, these hormones do nothing to actually treat the disease.

Some doctors recommended a hysterectomy (complete removal of the uterus and ovaries). Others advised me to have a child, based on a pervasive myth that this can “cure” endometriosis. At 23, I was advised to either try to have a baby or sacrifice my fertility with a full hysterectomy, followed by hormone replacement therapy that would last until menopause. At that time, I was still in college and not ready to start a family. In considering a hysterectomy, I wondered how I could reconcile my identity as a woman without a uterus or ovaries. Fortunately, I refused to accept these options. (As I later learned, neither of these methods actually treat the disease).

To make matters worse, endometriosis often goes hand in hand with a host of other ailments, such as Irritable Bowel Syndrome, chronic fatigue, frequent urinary tract infections, fibromyalgia, and a weakened immune system. I suffer from all of these. The result is that I have all but forgotten what it means to feel well. I frequently miss work, and almost never go out for social engagements. I have suffered pain so debilitating that it has prevented me from achieving my academic goals, enjoying my hobbies, and simply living a normal life.

Like too many women, I have been living in a hall of mirrors. I have had to put my life on hold, and focus all of my energy on merely staying alive. I gave up on school and have worked at Starbucks for the last 13 years - my only source of dependable health insurance. Furthermore, I continually struggle to receive enough pain medication. The truth is: I hate using narcotics. They make make me feel slow, stupid, self-conscious and emotionally unstable. But I have to keep working, and without strong pain-killers, this would be impossible. I am constantly wary of being perceived as a "pill junkie", but what choice do I have?
There is some hope for women with endometriosis. Surgical removal of the lesions is the best way to treat the disease and reduce long-term pain. Unfortunately, many surgeons are inexperienced with identifying and treating these lesions. My previous treatments left me with a disease that never went away.

My last laparoscopy was in December of 2010, performed by an endometriosis specialist in Bend, Oregon. It showed promise, but the pain has returned again in full force, and my condition is once again deteriorating. To make matters worse, that surgeon has now retired. The few doctors left who are well qualified to treat endometriosis are out of my insurance network, thus the burden of paying for another procedure would rest entirely on my shoulders.
Despite these difficulties, I have not given up on finding ways to improve my lot. In my eagerness to find a surgeon who can help me, I was recently referred to a specialist working in Palo Alto at Stanford, Dr. Nezhat. He is the undisputed world champion in laparoscopic surgery, and has operated on thousands of women with endometriosis. He is a pioneer in the use of PlasmaJet, a device that can remove the disease in delicate or hard-to-reach places in the pelvis. Additionally, this technique minimises the risk that adhesions (scar tissue) will form. Adhesions can be as painful as the endometriosis itself, causing organs to attach to other tissues and creating many complications, including infertility.
The most promising aspect of Dr. Nezhat’s treatments is that his patients have reported some of the lowest percentages of disease recurrence. Many of his patients who had been told they would live the rest of their lives in pain, and would never be able to bear children, are now living pain-free and have been able to start families. At this point, Dr. Nezhat’s treatment is my best available option.
Aye, there’s the rub: Dr. Nezhat and his team are expensive. My insurance will cover some of the costs but, all told, I can expect to pay up to $15,000 out of pocket. I have no money. I am still paying for the previous surgeries, and I owe tens of thousands of dollars to friends and family who have helped me in the past. With a meagre barista salary, I can scarcely pay rent and utilities. I am now in collections, and debtors are threatening to garnish my wages.
Fighting my inexorable pride, I have had to push aside all of my obstinance and fear, and embrace my vulnerability in order to make a public plea for help. It is the only option I have left.
Of course, there is no guarantee that this surgery will fix all of my problems. But frankly, I have run out of things to try: dietary changes, herbal supplements, physical therapy, electro-stimulation, stress-reduction, pain medication - even acupuncture. The pain is back, it is as bad as before, and it is ruining my life once again. Given the choice between another standard laparoscopy (which will offer only temporary relief), and a chance to be treated with the latest technology by the best endometriosis surgeon in the world, the conclusion is self-evident: I must see Dr. Nezhat.

I once believed that with ambition, dedication, and hard work, one could achieve anything one’s heart desired. I wanted to be a journalist. I wanted to go to war-torn countries and give voices to those whose suffering would otherwise go unheard. I wanted to publish at least one novel in my life. I wanted a family. I just wanted to leave my mark on this world. But I have all but given up on dreaming. I now realise that none of that means anything when I’m physically broken.

Let me be clear: This surgery is not a guarantee. But it is the best chance I have. Maybe I’ll get well enough to finish school. Maybe that will enable me to get a better-paying job that challenges, stimulates, and makes use of my true talents. Maybe I’ll even be able to bring new life into this world.
I can’t be certain about any of these things, but I can be certain that if I don’t get this surgery, there will be no maybes. I am in so much pain. I am physically and emotionally exhausted. Enough is enough. Something or someone has to give. This is my plea. Please consider being that someone who gives.



Thank you for sharing your story Ellen. Although the American health care system is so different to the UK's NHS, we still have the same issue here, that if we want non-standard treatments and do not want to go around in circles then we must pay the price for private care. Unfortunately, endometriosis has taken the chance of working away from some and in hand, the chance to be able to afford such costs. Like so many other women across the world needing treatment for this disease, Ellen is desperate to raise the funds to get her life back. Are you able to help her at all?

If you would like to contact Ellen, you can follow her on Twitter @EllensEndoFund. You can also donate to her surgery fund here or visit her page on Facebook.

Can anyone relate to Ellen's story? Have you had trouble paying expensive health costs? Maybe you're in the UK and want the same surgery but cannot afford to go private? Do you feel like you have had to give up on the life you wanted because of this disease?

Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read. 

S.

Thursday, 24 January 2013

Let it snow, let it snow, let it snow.













I thought I'd share some wintery photos that I took out the window this week with you all. 

It's been snowing here for over a week now but it hasn't been heavy since Sunday. I think it may be beginning to melt away now which makes me sad! I love the snow (only because I haven't had to drive 40 minutes in it to get to work this year!) and I was desperate to get out in it, but, hey ho. Knowing my luck I would have only slipped over and caused more damage than good!


I love looking out at all the birds and furry creatures that live around here. I even spotted a bird I'd never seen before, a Fieldfare, which I thought was quite exciting.


It's these lovely things that make me never, ever, want to live in a city! I'm definitely a country girl at heart.


S.

Tuesday, 22 January 2013

My story: Amy M.


My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.

It is now 20 years later. I have debilitating cramps twice a month, once for my menstrual cycle and once during my ovulation. When I get my period I am in bed for the majority of the day. If it is a work day I tend to go in late because of how much pain I am in. I have to wait until the heating pad and the mix of drugs I take to control the pain kick in. I lay and cry every month wondering why me. Even writing about it, I can feel how blinding the pain feels. It is like a wave of pain coming over me. I can tell when it is about to start with little pangs of something inside saying “get ready, I’m coming”… And it does, usually with a vengeance and always worse than the previous month.  


I never met anyone who had cramps like I did. I remember going to so many OBGYN’s over the years and never having a connection with any of them. I would ask for something to stop the pain. All I would get was to take 2 Advil. The best was when I asked one of the doctors if birth control would help and she looked at me and said “if you wanted this you could have asked for it right away”, as if I was making up the reason as to why I wanted pills in the first place. I was totally disgusted and felt I would never get any help. The fact is these doctors I went to had never thought about listening to me and looked at me as if I was faking as if I just wanted pills or something other than to be pain free.


Finally in October 2006 my mother said, “I know you like a woman OBGYN, but maybe you should really try mine. He is very nice and caring”. So, off I went to my mother’s OBGYN. Well, he was a miracle worker from my first appointment. We sat in his office and talked for a few minutes before anything. He tilted his head at me saying he understood. That was a first! He did a little exam and said I believe you have endometriosis. He said he would like to do a little procedure called a laparoscopy as soon as possible. Within 6 weeks I had my first lap procedure in December 2006. It went well except one of my arteries snapped mid procedure and he had to do a little extra cutting to sew the artery. I stayed in the hospital to be looked at over for the night. However, it was confirmed I was riddled with endometriosis lesions and scar tissue everywhere. My recovery took a bit longer due to the mishap. I was relieved when I did get my first period it was nowhere near the pain of my past one.


I soon went on Lupron and had every side affect that is listed with the use of this medication. Hot flashes were awful; it would almost feel as if I had bugs crawling on me when one was coming on. Depo seemed to work the best for my pain and keeping the endo symptoms at bay.


Unfortunately my miracle doctor retired but lucky enough for me his replacement was a young, gentle nurturing old soul type of woman. She listened. I remember my first meeting with her where she hopped up on the counter in the examination room and just let me vent and chatted with me for almost an hour.


I was married in September 2009. My husband Rey and I were talking about having kids in the future and we started talking about coming off of everything for my body to adjust. We didn’t need to chat about it too long.


In October 2009 I took myself to the emergency room because I could not even walk. I thought I was having appendicitis! I had a few tests run and sure enough it was a mass endometrioma that was the size of a grapefruit causing severe pain and the fear of losing the functionality of one of my ovaries. The ER OBGYN was so concerned he said “if you do not have this removed within 48 hours I will personally operate on you myself”. He was serious and yet had such a great bedside manner and I felt comfortable with him and understood the severity of the issue. This immediately put fear into me and made me realise how severe my disease actually was.


The next day I made arrangements with my OBGYN for surgery and I was on the operating table within 36 hours. Within that time my endometrioma grew to the size of a volleyball! Luckily it was not attached to anything and was just a mass sitting happy behind my uterus and ovaries. Once again, that same day surgery turned into 3 days in the hospital this time due to a low white blood cell count. After surgery I started on Nuvaring. Oh boy, was that an experience and one that I do not want to talk about. I was only on that until January of 2010 because we were going to start to have a family.


Also in January 2010 my insurance changed and my doctor who I loved was no longer covered under my plan. Feeling anxious about finding another OBGYN that I felt comfortable with, I reached out to the OBGYN I had met in the emergency room and wouldn’t you know it he was in my plan! 


Under his guidance I started getting tested for any potential fertility issues. My first test was the horrid HSG where I found out that I had a blocked fallopian tube. This was hard to hear because I was 32 at the time and knew my window of becoming pregnant was closing every year. My husband and I chatted with my doctor and discussed what we were going to do. We were told to try naturally for the next few months. We tried and we got nowhere with conceiving. I also had ultrasounds every 3 months to be sure of no more growths.


We went back to my doctor in June 2011 to discuss one of my follow up ultrasounds. Unfortunately, he was away on vacation and we had to discuss this with his covering doctor, who, like many others before, had no idea what I was going through. It was the first time my husband understood how cruel some doctors could be. She said “Well I guess you should start fertility treatments”.


In July 2011, after almost 1 ½ years of us trying to conceive naturally and having to deal with my periods getting worse and worse every month, we started going to a fertility clinic. We sat with the doctor and he explained that with endometriosis it is almost a waste of time to try to do IUI. Of course our insurance plan covers IUI and not IVF.


Our first try with IUI was in September of 2011. My husband and I had fun with the whole thing. It was something we had to go through and we made the best of it. The chlomid was awful and I once again started getting those awful hot flashes. We kept focusing on the end result. A positive pregnancy test. However, we did not get a positive test but a big fat negative. It is amazing how all the hype you have instantly turns to the greatest fall ever with one phone call. We waited a cycle and tried it again in November of 2011 with the same phone call with the result of a negative. It was the holidays and my husband and I spoke about it and decided to not try again until after the holidays and then sit down and figure out the next step.


All of a sudden February 2012 was upon us. One morning, once again I woke up in excruciating pain and decided I could not take it anymore. I called my doctor and was so happy, even though he had moved practises, he was still in my plan. We made an appointment for that week. The reason why I love my doctor so much is how he works with his patients. I was called into his office and chatted with him about life and what had been going on. He said he was thinking about me because he just came back from a conference where the main topic was endometriosis and “Padma from Top Chef was there”. He was rambling on and on about the whole experience. I was thrilled that I had an appointment with him shortly after such a conference. He recommended another lap procedure to be done the following week. So here I was scheduling another surgery for this incurable disease. The next week we chatted before going into surgery about trying to clear my blocked tube and clean me up… Good as new!


The surgery went well. He was amazed at how bad my insides were. Everything was glued together from scar tissue and endometrioma lesions. He cleaned up all that he could and tried to unblock my fallopian tube. He also noticed that my other tube was also now blocked.


I went home to recover and waiting to go back to see him the following week for my follow-up appointment. It was then I saw the pictures, my jaw dropped at how inflamed and horrible my insides were. I am so thankful for Dr. Kandinov to get me cleaned up and alleviate my pain.


Unfortunately the elephant in the room was that now I don’t have the function of either fallopian tube. The only option for us at this point was IVF. With our doctors recommendations we were off to search for the best doctor with a comfortable price since this is now all going to be out of pocket.


The fact that I am a woman and have the right to being a mother, my body created to do so and I couldn’t without the help of science didn’t matter to me. It is the lack of insurance, the lack of help for insurance is what bothers me. Why do I pay for health insurance for them to deny me, a woman, to have a baby because I don’t have working fallopian tubes? This isn’t a cosmetic procedure, but a disease.


In March 2012 my husband and I went to a few doctors and found the one we liked with a very personable staff. I feel that is almost more important that the doctor in a way. The amount of time you will spend in the doctor’s office you will want to be surrounded by staff that help guide you and can answer every question. No question off limits!


We decided to go for it. We were going to start all the fertility drugs in April, the following month. IVF is a science game. There are no ways to make sure it works. It still is a law of averages that you must be willing to accept. The 3 weeks leading up to the pregnancy tests were busy - doctors office every other day, shots everyday then multiple shots per day, procedures and pills. We did everything we had to. However, that call, that most anticipated call, was the biggest blow to us ever. I thought I would keep it together. No way! I lost it. It was the first time I have ever felt that my broken body is what is causing all of this. All the while, my husband, the kind and sweet and loving man he is, sits there, looks at me and says “You are not broken, you have a disease that is why this is happening, it isn’t you as a person”. Just a week out of that phone call, we were back in my favourite OBGYN’s office talking about what he thinks we can do. His positivity exudes from him saying it will happen. As we leave his office, we know we are ready to try it again.


And we did, in July 2012. This time we went back to our old ways of having fun with it all. We were hiding it from everyone not wanting the pressures from others. So we would run off into the bedroom for shots while company was in the other room. The best one was in the parking lot of a Furthur concert, my hubby shooting me in the leg while laughing at what we are actually doing. We felt that there were probably more drugs going on in the parking lot then in our car at that moment.


The positive result of this cycle was we had 5 embryos. We implanted 2 and froze 3. That is the only positive that came from it. Well, that and the liquid lunch where we escaped our reality for a bit. I'm not really sure where we will go from here. We do have 3 frozen embryos, but not sure if I can mentally do it again.


I must say that if I did not have the love and support by first of all my husband, who has been with me since before the very first surgery, I would be lost. He continually supports me and understands how bad my body feels during my cycle. My family has been so supportive and my amazing network of friends. I am happy to say I am not alone in my disease but everyone in my life is also affected by it. I thank all of them for being there as my support team and understanding what happens to me.




Thank you for sharing your story Amy. I hope that your fertility treatments work out. It must be very challenging, both physically and emotionally. Luckily, it sounds like you have a fantastic husband who will always be there to support you, no matter what.


Can anyone relate to Amy's story? Have you tried IUI or IVF fertility treatments? Are your fallopian tubes blocked? Have you had trouble finding a new doctor after yours has left or retired?


Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read. 


S.

Monday, 21 January 2013

My story: Rhonda Myers-Wright.


Hi! My name is Rhonda and I am 26 years old. I guess I'll start from the beginning... 


I was rather young when I first started my periods - 11. I remember it very well. It was awful. I was out sledding with friends and the pain was miserable. I was in bed for over a week. My periods have always been terrible and I'd have to stay in bed for at least a week, missing days off school at a time. My mother always told me it ran in the family and everyone else dealt with it and made it through - I was no different. 


I was miserable. I became pregnant when I was 14 with twin boys but I had a lot of complications. I was put on bed rest when I was 4 months. I had a weak cervix, pre-term labour since 4 months with home monitoring and daily medications to stop the labour. Then, at around 7 months, I got HELLP syndrome (which has to do with hypertension and liver/kidney functions - basically my liver and kidneys had had enough of the pregnancy and couldn't handle the stress it was putting on my body any more and began to shut down). I was rushed in for an emergency cesarean section at 33 weeks. Everything worked and my kids are healthy and happy, almost 12 years later. 


Once I had my kids, my periods became worse and worse. At one time, probably 4 years after my pregnancy, I went to a free clinic and was put on birth control. That lasted maybe a year. They kept switching the pills depending on what they had and it was just killing me to have to keep switching. I went on with my life, one a month. I would be in bed with terrible cramps for about a week and my periods lasted 9-11 days. I would start heavy and have to use a pad and a tampon and switch about every hour for the first 3-4 days, then it would get lighter for about 2 days, then stop for a day, then start heavy again. I was nauseous and my cramps were mainly located in my lower back and sometimes my abdomen. I dealt with this just because I knew nothing different. My mom always said all the women on her side had terrible periods. She would give me Naproxen when it was really bad but that didn't seem to help. The only thing that helped was sleep because when you're asleep you can't feel the pain. But, the problem was getting to sleep despite the pain. 


Okay, now we're fast forwarding to when the real problems started. Last year, in January, I was out with a friend to dinner. Everything was normal. I had a couple drinks and ate some food, came home and went to bed. Now, I was due to start my period any day. I went to sleep around midnight but at 3:30am I woke up with a terrible stomach cramp. I thought maybe I had to go to the restroom so I got up but it didn't work so I went back and lay down. By this time the pain had increased to this sharp, crazy, stabbing pain, all in my lower abdominal area - I couldn't pin point where exactly it was. I was drenched in sweat and felt like I was going to pass out. Instead I started vomiting. I woke my husband up because I was beyond scared. I had no clue what was happening. I thought maybe I ate something bad at the bar and he went on his way to work at 5:00am. I was still throwing up and at this point couldn't even get out of bed. My friend, who slept over, heard me crying and came in my room. I remember telling her I thought I had the flu or something and not to come too close. She stayed and got the kids on the bus for school for me but then had to go home, so I was home by myself. That whole day, I was scared out of my mind that I was going to die. I couldn't keep anything down and couldn't stop vomiting and the pain was unbelievable. I have never felt this intense pain in my life. My husband came home from work and saw how pale and sick I was. I tried to sleep on and off through out the day. He kept telling me I needed to go to the emergency room by I didn't want to. Finally, at about 9:30pm, he gave me the ultimatum that either I get in the car and go or he was calling an ambulance, so I went. We had to call my mom to stay with the kids. I couldn't get up to get to the car and ended up doing somewhat of an army crawl because I couldn't straighten myself out enough to walk. A sharper, stabbing pain came on at this point. I couldn't handle any more pain. 


We got to the ER and I barely made it inside. The lady at the front desk made me stand there and give her all my info (I remember this because, honestly, I was pissed that she was making me stand there when you could look at me and see I was about to pass out). A few minutes later, long enough for me to get to a seat and sit down, they called me to go get my vitals. The nurse asked if it could be period pains and I said no way, I've never had them this bad before (I forgot to mention that at about 2.00pm that day I started my period). She took my vitals and my heart rate was sky high and irregular. I then had to have an EKG where it showed on paper my heart rate. That got me into a room super fast, thank God, although they later found out my heart rate was out of whack because of the amount of pain I was in. So they did test after test. I had an MRI scan and had to drink stuff so they could look at my bowels. I refused any pain medication because I was afraid I was dying and wanted to be coherent and know what was going on. Finally, they asked if I'd ever had ovarian cysts before - no, I had not. They did an ultrasound and came back and told me I had one cyst on my right ovary and one on my left. The one on the right was larger than a grape fruit and pushing on some organs. It was all jacked up. At this point, I took the pain meds because I knew I wasn't gonna die. 


They made me an appointment with a gyno the next morning. This lady was evil. Still in incredible pain, she took no care and said that since I couldn't sit still for the exam (like I had a choice! My God,  the pain level was a 20 on a scale to 10!!) she couldn't do surgery laparoscopically because she could tell if the cyst was mobile or not. I had to wait 6 months and see if I still had pain and if I did she would do the surgery. WHAT!? 6 months with this pain!? I found a new doctor. He said I could wait and see if the cyst burst but because of the type of cyst it was, he didn't think it would and if it did, it would hurt more because of the size. 


He scheduled my surgery for February 21st, 3 days before my birthday. He said he found endometriosis everywhere, that mine was the worst case he'd ever seen - stage 4. I had bands and adhesions everywhere. I had one band that wrapped itself around my ovary and a huge cyst and pinned the cyst and ovary up with my bowel to the right side of my abdomen. He thought that's why I had so much pain. He tried to clean out as much as he could but he wasn't prepared for what he found when he opened me up. He put me on birth control 2 weeks after my surgery. I bled for 2 months straight and got a hernia from when he cut one of the band's that was attached to the abdominal wall, right above my belly button. He was cold, uncaring and just kept pushing the Lupron shot. I changed doctors. 


Since my surgery, I've still been miserable. I have this constant pain in my lower back and recently I've been getting sharp pain on either side by my ovaries. My new doctor told me to stop taking the placebo pills in my birth control so I wouldn't get a period which helped, but now, this constant lower back pain is all I feel. I go in soon for an ultrasound then we'll go from there. If I have another cyst, she'll schedule me for surgery, if not, she wants to try Lupron. I don't want the Lupron - I've done my research and it terrifies me to be honest. I just want some relief from my pain and want my life back.


I have since been offered an opportunity to be part of a drug study through Violet Petal. It's for a new drug called Elagolix that may help with the pain of endo. I still have a bit of research to do before I make any decisions though. I also found out that I now have calcification in my right ovary but I'm not sure if that is connected to the endo or not.




Thank you for sharing your story Rhonda. Your story took me back to my flare up which happened in almost the exact same way. I understand how scary it can be but then, I already knew I had endometriosis. To not know must have been far worse. I hope you find some relief soon.


Can anyone relate to Rhonda's story? Have you tried Lupron? Have you read about the side effects of it and decided against it? Have you had children and then later on discovered you have endometriosis?

Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read. 


S.

Sunday, 20 January 2013

Snowflakes and agonising frustration.

Image courtesy of http://chibird.tumblr.com/post/40803443811/a-little-motivation-only-one-more-day-until-im

I'm going to keep this post short because I really haven't done much since my last update.


I'm very, very frustrated at the moment. I'm in a lot of pain still. I mentioned a few months back that I was having a lot of pain around my left hip area and it felt quite numb. Well, guess what!? Yeah, it's still there, and to make matters worse, my right hip feels the exact same way now. It's making sitting and trying to get comfortable in bed near impossible. My left hip started to feel like this after my last laparoscopy so I'm starting to think I must just have some sort of nerve damage around those areas. But, with the numbness I get the aches, and nothing seems to take those away. On top of that, my lower back is absolutely killing me this week. The boy has rubbed my back, I've had my massager on it (which, might I add, was fantastic at getting the gas out after my surgery) and of course I'm doped up on all my tablets but nothing is helping it. I then have all the usual pains in my tummy and then there is the bladder issue/s. I cannot go to the toilet properly at the moment - still! It's been like this since I got out of surgery but its still the same. No improvements. In fact, I think it's worse than when I was in hospital. Going for a wee is absolute agony and not in a cystitis infection kind of way. It's the muscles. They feel so tight and it kind of dribbles out. If I try and control it at all then I get shooting pains that take my breath away. I'm also, yet again, having my wetting problems. I thought that would stop when the endo had been removed from my bladder, but, obviously not.


The only thing that's brought me an ounce of relief recently is this heat pad my mama found while clearing out my grandmas house. It's like a little electrical blanket and its been helping my tum and back. I can't stand the weight of a hot water bottle on my tum so this is perfect.


It snowed really heavy here this week and I've been desperate to get out in it and jump around but as I can barely move at the moment that's been completely out of the question. It makes me really sad to watch people outside having fun and snowball fights. I wanted to build a snowman!


I've been ridiculously down this week with it all. I had pinned so much on this surgery fixing me and yes, I know it was only just under 2 weeks ago but I'm seeing no improvements yet and I'm completely frustrated with it. I've cried almost non stop this week and that's all I really feel like doing. I feel like giving up with it all. I feel like giving up on everything because I can't see past this. Is this my life!? Being stuck, not able to see people, not being able to work, drive, walk even!? Me and the boy have so many plans and we are so desperate to get all the possessions we've acquired in to our little house, but how is that ever going to happen with me like this? I feel so useless at the moment. I can't do anything. I have no life. I, at the moment, cannot envision any prospects, so what's the point!? What's the point of the boy being with me when I'm like this? He could find a normal girlfriend. He could fall in love and be happy and move out and have children and have a life. But here, now, he's stuck with little old rubbish me. Stuck living his life sitting around on my bed waiting for me to get better. It's not fair on him. And I feel like I've taken so much away from him. So much that he deserves.


You see, this is what my life is like at the moment. I've been in tears since I first woke this morning, wishing I could (comfortably) sleep forever. My dad and the boy have been trying their best to console me but I just feel empty.


How can I bring this blog to all you endo sisters in a positive way? I can't. Because I feel I have nothing to be positive about.


Anyway, that's my cheery update from my recovery bed. My dad suggested that the boy take me out for a short drive to the pet shop to have a look at the little fur babies so I might put some lipstick on and do that. I need some fresh air to clear my sad head.


S.

Saturday, 19 January 2013

My story: Katie Hogg.


Katie is a beautiful endo sister that I met on Twitter last year. Always trying to support others and find the positive for her endo sisters, I doubt any of us really knew how she was feeling. Here, Katie shares her story with us...


It all started in 1985 when, at age 10, my first period arrived. It was nothing particularly memorable. I remember my mum gave me a sanitary towel and I had a bath.


Shortly after this happened my parents divorced and I now lived with just my dad.


Age 12 - My periods had become very heavy. I often leaked through my clothes and I was very embarrassed. Several times I was at school with no other clothes to change into and had to walk around all day with a jumper or coat wrapped around my waist to disguise the marks on my clothes. I didn’t feel comfortable talking to my dad about it so just suffered in silence.


Around this time I also started to be bullied (we had moved to Scotland where my dad is from and my English accent made me a target for abuse). At 13, I had gone back to England to visit my mum and decided to stay there as I was becoming too distressed from the abuse.


Age 15 – I had violent pains in my stomach and I remember thinking that I thought I was going to give birth! My mum called out the GP who said I had ‘gastroenteritis’ although I didn’t have any sickness and knowing what I do now I suspect that was my first endometriosis attack. I cannot remember any other specific occasions of pain but my periods were always long and very heavy. The gym kit we were expected to wear at school consisted of a short skirt and gym knickers and I felt so distressed at the thought of wearing it when I had my period that I used to often ask my mum for a ‘note’. The PE teacher, however, took offence at this and would pick on me in front of the other girls. In the end, my mum had to go to school to complain. My PE teacher then stopped and I could sit out the PE lessons in peace.


Age 16 – At that time a lot of the girls at school were going on the pill, I don’t know why, to be grown up, I suppose? So me and my best friend went to the clinic and starting taking it too. It was probably a blessing as my periods became more manageable, although, that same best friend said I often would complain of stomach ache and want to go home. I had become a very reserved teenager, partly due to the bullying, I think, but also a sense of shame with my heavy periods. Staying over at anybody’s house was not an option. I was also often very hot and sweated excessively, to the point that my underarms would be soaked. My mum found me a miracle antiperspirant and it stopped.


Age 20 – I have finished college and was back living with my parents. I had stopped taking the pill as I didn’t have a boyfriend and didn’t see the need for it. This is when the severe period pains started. I can vividly remember lying on my mum's cold bathroom floor and/or in a very hot bath just to get some relief from the pain. It felt as if I was being gripped inside by a ‘vice’ and I often felt very nauseous and was, on occasions, actually sick. My moods also just continued to get worse and worse. I had gone from being reserved to angry and unhappy and I know I hurt a lot of people close to me.


Age 21 – I had moved into my own flat and did start to feel happier. At last I had my own space to do what I wanted when I wanted and could just have peace and quiet if I felt unwell. This, however, was the beginning of a pattern of overeating, overspending and isolation that would continue and get worse until my diagnosis. I had a boyfriend that I met at work and I felt accepted for the first time. Sex was sore at times but I didn’t question it. That relationship ended after a year, we did remain friends but I didn’t have another boyfriend until after my diagnosis. My period pain just continued to get worse. I was always nauseous, bloated, constipated and had headaches. My digestive system had also deteriorated to the point that many foods I ate would give me instant diarrhoea (mainly dairy products and white bread). I had many sick days off work or often had to go home early. I went to the GP several times with these complaints but he constantly dismissed me saying it was ‘IBS’ or that I was constipated. Not once did he even suggest taking the pill for my periods or even mention seeing a gynaecologist! Looking back, I think I had become depressed. I never went out and only had 1-2 close friends who I constantly fell out with. I had become very distant from my mum. The person I was closest to was my gran, but she died when I was 22 and I was heartbroken. I comforted myself by eating and spending money. By my diagnosis, I was a UK size 18-20 and around £20,000 in debt with nothing to show for it.


Age 26 – It was now 2001 and I had moved back in with my mum (and step dad). They knew about my debt, but not the full extent of it. I could no longer afford to live by myself and make repayments, so I made the change to try and reduce it somehow. I had started a new job where I met a girl again that I used to go to school with and had been very good friends with. I enjoyed the job and started to feel happier. I somehow managed to drop a dress size and went on my first beach holiday with a cousin in October. While sunbathing however, when lying on my front, I felt a lump in my tummy that was very uncomfortable to lie on. I panicked but did eventually make an appointment to see the GP to find out what it was. It was now early December, my usual GP was on holiday. The locum was very attentive, she examined me and, after asking if I could be pregnant, sent me to the hospital the next morning for an ultrasound. So 9am the next morning, I’m at the hospital with a bladder full of water and was told I had two cysts, one on each ovary, both extremely large. I was shocked! An appointment was made for me at the hospital to see a gynaecologist very quickly and just after my birthday it was agreed that I would be having a laparotomy which would open me up and remove the cysts. I also had to sign an agreement to say that they could perform a hysterectomy if they thought it was required during the surgery (I only found out after the surgery that they thought I may have cancer which is why I had to sign that). To say that I was petrified at that time is an understatement. I couldn’t sleep, had never been in hospital, didn’t know anything about cysts and was just glad the surgery was soon to get it over and done with.


Age 27 – It was early January 2002 when I went in for the operation. It took them 6 hours and when I woke they advised they had found a 10cm endometrioma ( a ‘functional’ cyst caused by endometriosis, sometimes known as a ‘chocolate cyst’) on my right ovary, which they removed along with that ovary as they had become all one mass, a 15cm endometrioma on my left ovary which had been stuck to my cervix and anterior wall - they were able to remove it though and the leave the left ovary in place. It was at that point that they advised I had endometriosis and findings were consistent with stage 3 of the disease. I had a 4” vertical scar from my belly button downwards and was in agony! I had a morphine pump but my body was in total shock. I was still, not surprisingly, finding it hard to communicate my feelings and had an argument with my mum at the hospital which was very upsetting for both of us. I found the recovery difficult; I was overweight, unfit and had no strength to do anything. The hospital wrote to me and advised that the histology/pelvic washings were all malignant and made me an appointment to go back to see the gynaecologist to discuss the endometriosis. I was totally lost. What the hell was it!? At that time we did have internet access, but not much information on there about it and certainly no Twitter or endo sisters for support. I had never heard anybody ever mention it and I really did feel alone. I was, however, full of hope that I would feel better and the pain and suffering would be over. Slowly I started to get through the recovery. My strength came back and I felt amazing. Only at that point did I realise how bad I had been feeling - I just thought that it was normal to feel like that! I did have a few irregular periods after the op but the gynaecologist wasn’t too concerned. Their advice to me was to take the pill, try and get pregnant as soon as I could (if I wanted a family) and to self monitor myself. If I felt symptoms returning, I was to go back to the GP.


I stumbled across a nutritionist who knew about endo and she advised me to cut back on meat, processed foods and dairy and in general adopt a healthier ‘clean’ approach to eating. I took the advice. I was very determined. I bought a bike and within 6 months found myself to be a size UK size 8-10.


Feeling full of energy and confidence, I decided to make the bold move to relocate back to Glasgow, where both my parents are from, and try and make a better life for myself. I decided to save up over the summer and move in the October. I was excited; I would live with my cousin and have some fun. I did want to have children and hoped this would be the next step to meeting a man I would be able to have children and a relationship with.


Age 28 – I was working in a bar full time and going out every night meeting new people and kissing boys! I was very happy. It was what I had been waiting for my whole life, just to be carefree and have some fun. I had joined the gym - I wanted to take my health seriously and this seemed to be the next step to feeling strong and maintaining my weight. I felt very uncomfortable exercising, especially when doing sit ups. I could feel some kind of lump. Again I felt panicked, went to see the GP and was surprised when he told me I had a hernia - I had always thought they were for men! After being referred to the hospital and seeing the consultant, I found out it was an incisional hernia - basically my scar hadn’t healed properly from the previous surgery at my belly button area. So I was put on a waiting list for surgery for it to be fixed. Luckily it wasn’t such a big surgery and I recovered very quickly. I did, however, due to the repair they did, now not have a ‘belly button’ - bizarre!


Age 30 – I had left the pub, was working full time as an administrator in the motor industry and I had stopped taking the pill after trying a few different types as it was making me feel permanently ‘low’ and not myself. I had a great 30th birthday and was confident about my future.


Age 32 – My periods had started to become irregular again. I was bloated, tired, feeling nauseous and the pain was becoming worse every month. I was also starting to become quite emotional again and as a result my moods were up and down. I saw the GP, who, only at my insistence, referred me to the hospital. The appointment eventually came round and I explained all my symptoms to the gynaecologist. I said I thought I may have another cyst. He told me that I wouldn’t have one but agreed to scan me anyway after I practically begged him to do so and, of course, the scan showed that there was another endometrioma on my remaining left ovary. When I went back into his office to discuss, he looked embarrassed and apologised. Surgery was scheduled and I was very upset at the possibility of having to be cut open again. I was advised that they would perform keyhole surgery but, if when they were looking felt it necessary, they may need to open me up. I was also overwhelmed/upset at being in exactly the same situation; more surgery, more recovery and more disruption to my life. Would my ovary be okay or would I lose it? I wasn’t in a serious relationship yet but was still hoping to have children one day. So one month later I had ‘laparoscopic’ treatment of endometriosis, the endometrioma was removed and the ovary was saved and they were able to perform it as keyhole surgery. I was sent home after 3 days and again advised to take the pill.


Age 35 – My periods were regular but had become extremely painful again and, as usual, very heavy. I was extremely bloated and often felt nauseous. My mood swings were, to be honest, the worst they had ever been. I was very emotional and would often cry for no reason at all. I would have maybe 5 days of feeling energetic and happy when my period had finished, but, after that, it was a gradual decline into pain and despair. I was very tired and was falling asleep during the evening, something which I had never really done. I was still working in the motor trade but had changed roles the previous year and was now working with the public. I had started to take almost a day off every month when my period arrived. The pain and discomfort was too much to bear while sitting with customers for a 9.5 hour day. I usually lied to my bosses as to the reason why I was off. I felt uncomfortable talking about my periods with male managers. I was liked at work but it did start to become a bit of a ‘joke’ that I was off again. It was only teasing but it was very hurtful to my feelings. My best friend at work was male and even though I tried, I could not explain to him how I was feeling! I also noticed that my hair was excessively shedding, which I had never noticed before and it was worrying. In general, I felt very run down. I stopped going out as much and lost some confidence. It was all very overwhelming. I went to my GP who after some prodding said he thought he could feel something, so he referred me to the hospital for a scan. He explained that waiting lists were now much longer than they had been and it was better for me to have some evidence to be referred with. An appointment arrived for the x-ray department at the hospital and once again my scan revealed that I had another endometrioma on my ovary approximately 8cm in size. This time I was shocked. It seemed the obvious answer but it hadn’t occurred to me that is what it could have been. So, yet again, the process of being referred to the hospital started again. This time I was lucky enough to have access to private medical insurance and saw a consultant quite quickly and surgery was arranged for January which was only a just over a month away. The consultant did an MRI scan (which was the first one I had ever had) and it was then that he told me I also had ‘adenomyosis’ which is similar to endometriosis, but causes uterine thickening of the uterus outer muscular walls and can cause blood clots during periods, of which I had many when bleeding. The consultant was very keen to preserve my ovary and said he would do everything he could to save it during the surgery, which would not be keyhole, and would instead be another laparotomy and my 4” scar would be reopened. We also agreed that during the surgery he would fit a Mirena coil to help me manage my periods. I had heard very positive things about that coil and I looking forward to some relief from my awful periods. While I waiting for surgery the pain only got worse and I now also found that any time I ate I got a pain in my tummy which would stay for several hours, making it very difficult to eat. After Christmas dinner I had to go to bed from the pain of eating and stay there for the majority of the day.


Age 36 – It was 2011 and my surgery was in early January of that year. When I awoke the surgeon said it had been successful in that he had removed the endometriosis, taken away the endometrioma and the ovary had been preserved. He, however, had not been able to fit the coil as he said my cervix was too damaged but he had another plan and before I left hospital I would start on a 6 month course of ‘prostap’ injections which he said was an aggressive treatment for endometriosis. For some reason, while he stood at my bedside, he told me he didn’t think I would ever be able to conceive naturally. He didn’t say why but it did shock and obviously sadden me. I had always felt inside me that I wouldn’t be able to have children; maybe it was a fear or a gut feeling, I don’t know. The surgeon said something about implantation of the embryo but I wonder if he just didn’t like what he saw when he was doing the procedure. My scar was now 6” and he did a very neat job, so something to be grateful for! I started the injections which stopped me ovulating and it was really wonderful! No pain, no periods - relief! I was getting menopausal ‘symptoms’, mostly hot flushing and my boobs were strangely bigger, but the HRT they gave me to take seemed to keep everything manageable. The only downside was terrible migraines that would stay for days. I was feeling on top of the world and in my new found self applied for another job, the same role but this time a ‘prestige’ car dealership with more money and responsibilities, but I felt capable of the change and got the job.


My debt had stayed with me when I moved to Glasgow. I had attempted to pay it off but it was too huge for me to realistically do. Through a series of events, I had found myself bankrupt at age 34, serious and overwhelming yes, but I had no ‘assets’ so the impact wasn’t too life changing. I had to make 3 years worth of contributions which only left me with a very basic minimum income to live on, but I was hugely relieved to be debt free. I wouldn’t benefit yet from my better salary but after a year of being in my new job the bankruptcy would be discharged and it would gain financially.


The injections stopped and I started my new job. I did feel better than I had done the year before but not as good as I had done with previous surgeries. The new job was going well, but it was stressful and I just assumed that my wellbeing was down to that.


Age 37 – January 2012, I had 3 periods that month. I was in shock! How could I be having these symptoms only 6 months after the ‘wonder’ injections and 1 year after surgery? I was starting to have daily pain again and also finding it painful at times to sit up/down. My legs were painful and I was finding it extremely difficult to manage this and do my job. By coincidence, my surgeon came into work (car issues) and we had a quick chat privately. I explained how I was feeling and he said he would arrange an appointment for me to see what was happening, but he did say it may take a few months. I emailed him the information but the letter never arrived. When I contacted him he said it had been sent out but, unfortunately, my post was very unreliable and I was annoyed with myself for not contacting him sooner. It was now too late to see him as he had relocated to another city. My periods settled down slightly and I managed the pain the best I could, although I had started to take time off sick again. I now had a 10 hour day and it was even more stressful with so many targets to meet. I started to feel like I was failing at my new job. Getting out of bed in the morning was painful and the day was difficult before I had even got to work. I had always been very private about my health and never discussed my endometriosis with anybody except close friends and family, but I was now suffering so much with people that didn’t really know me or my background and decided the best thing was to tell the girls at work about it. They were kind and sympathetic and it did make me feel able to cope slightly better.


I went to the GP who prodded me but said he couldn’t feel anything. Again, I had to insist on being referred to the hospital, an appointment came through for an ultrasound, again at the x-ray department. The pain I was experiencing by this point was constant and agonising. I was constantly constipated, my periods were irregular again and so heavy I was sometimes changing every hour while trying to see customers at work as well. I was totally exhausted and whatever I ate would feel like a huge ‘stone’ in my tummy and the feeling wouldn’t go for several hours. I was still exercising when I could and still ate healthily but this was to the point that I could only eat very small meals of very simple food, mostly soup! My emotions were up and down and I could feel myself pulling away from friends and family. Going out was non existent. I basically went to work, came home and went to bed or lay on the sofa fatigued. Whenever I did have some energy, I would go to the gym in an effort to help me feel good from an endorphin rush, reduce the bloating and put some colour into my cheeks. A friend came to visit and while we were looking around the shops I had to stop frequently and sit down - I had no energy.


My scan was June 2012. I have never been so scared of what they would find. It confirmed unfortunately that I had another endometrioma on my left ovary approximately 6cm in size; this was the 4th one on the same ovary, 5 in total if you include the right ovary too. I came out of the scan room, locked myself in the toilet and cried my eyes out and the tears didn’t stop for about 6 months. I knew the next step for me had to be a hysterectomy; I just couldn’t take any more pain, surgery, emotional ups and downs or disruption to my life. I had always felt like my life had been going round in circles and I used to blame myself, that somehow it was my fault, I was doing something wrong! But, like a light bulb in my head, I suddenly realised it was the endometriosis that had caused this pattern in my life. How could I ever of achieved anything with so much disruption to my life? And, may I add at this point, everybody around me seemed to also connect these events together also. I was very upset when I got back to work after the scan. I bravely told my manager what was and had been happening. I told him I would likely need surgery again and explained that is why I had been having so much time off due to sickness. I doubt he will ever understand but at least it gave him an idea of what I was facing and I could stop hiding how I was feeling from him.


The GP referred me back to the hospital and I had a 3 month wait to see the consultant. It was the same consultant that had done my laparoscopy when I was 32. The appointment seemed ages away and I just wasn’t coping. Work was extremely busy and I felt very depressed and under pressure at work. I was so bloated that often the skirt of my work uniform wouldn’t fit me and I would have to spend the whole day extremely uncomfortable and self conscious. The jacket had actually got too big, so I knew I hadn’t put on weight! I had my hair coloured at the hairdressers to try and cheer me up but when I got home I discovered it had all broken off at the front, which was very upsetting. One Friday, it all just got to me and I could feel myself getting extremely annoyed with my colleagues and the customers. When Monday came, I couldn’t motivate myself in any way to get out of bed and go to work. I phoned in sick, made a GP appointment who prescribed Prozac and signed me off for 2 weeks. I felt guilty for leaving everyone to clear up what I had left behind but I knew I had to take this time to get myself straight. I literally stayed on the sofa for 2 weeks, went to the gym when I could and I did start to feel slightly better. I went back to work one day before my hospital appointment. The surgeon remembered me and was apologetic that his surgery didn’t work previously, which I appreciated but didn’t think he could have done anything differently. We had a chat and both agreed that for my quality of life a ‘pelvic clearance’ was the next best step. I had done nothing but think about what I wanted and although my heart was breaking, my head said instinctively this was my only choice. They would remove my cervix, uterus, tubes and remaining ovary and there would obviously be no more opportunity for fertility. He asked about my bowel movements (no other consultant had done that) and when I confirmed they were painful and had blood in them he advised an MRI before the surgery to assess where the endometriosis was. The appointments were set up at the same time and I was told that it would be 6 weeks for the MRI and 12 for the surgery. I begged the consultant to see if the surgery could be sooner but he said there wasn’t. I had a dream that a letter came through with an operation date of 24th October and a few days later the letter came with that actual date on it (sounds crazy but it’s true) it was also a lot sooner than 12 weeks so maybe the begging helped!


At the pre-op appointment we discussed the MRI results. There wasn’t too much endometriosis on my uterus (not surprisingly after the recent surgery/prostap injections) but it was on my bowel, which is known as stage 4 endometriosis (advanced). The consultant said he would have to do a bowel resection and repair to remove this and, depending on the condition of my bowel when they had opened me up, I may need to have a ‘stoma’ to help my bowel heal after the op - a very daunting thought I must say! I also had TWO endometriomas on my ovary, I didn’t know that was possible but it obviously must be. I would need to take HRT after my operation, and stay on it until at least 50 due to my age.


I can only describe that, from when the decision was made for the surgery, I felt like someone had died. I woke up every day with that lump in your throat that you get when you’ve lost something. A chance for my own child, a dream that I had always had. I remember crying on the bus on the way to work one morning. I was determined however to get organised for my time off and come off the Prozac before I went into hospital, and I did. The sadness never left, but everybody was so kind and I got hugs daily at work and especially when I cried one day at my desk when it just all got too much.


The day of the operation came around and my mum and step dad came to Glasgow to take me to this hospital. Our relationship was greatly improved, partly through age/experience, but also through me opening up to them and allowing them to see what I had been going through. My dad would come and stay with me when I was out of hospital to care for me for a few weeks.


I had a general anaesthetic and a spinal nerve block which would numb me for several hours after the op and would help with the pain control in addition to the morphine I would be given. The surgery took about 4 hours. The endometriosis on my bowel had in fact formed into a ‘nodule’ and they had a difficult job to get it off, but it was successful and they didn’t need to do a repair or resection as they originally thought and thankfully no colostomy bag, which was also a possibility. The nodule was why I was having so much pain eating and sitting down at times. I lost a lot of blood during surgery and had to have a transfusion. I’ve now got a 6.5cm scar and unfortunately it has a ‘hematoma’ (due to the blood loss in surgery) which is still draining, but the scar is neat and I’m proud of it - my war wound! The consultant came to see me shortly after the surgery and I remember him saying that the endometriosis on my bowel was left over from the previous surgery. I didn’t see him at my post op appointment to ask him about that remark. If that is the case and it was missed, it would explain why I started having problems so soon after the prostap finished but I cannot change anything that happened, so, for now, I am not going to pursue that question any further. To be honest, I wonder if it had been missed for several years as I had had digestive issues since my early 20’s and nobody had ever discussed my bowel with me in relation to my pain. Since getting home from the surgery, I have had the flu, a cold with a nasty cough and a stomach bug. My dad also went into hospital while he was staying with me for viral gastroenteritis. I had to call an ambulance for him at 7am. That was all within my initial 6 weeks, but luckily the hospital advised me to take 12 weeks due to the busy/stressful nature of my job so I still had more time left to recover as going back to work would not of been possible at that 6 week point.


Age 38 – It’s 2013 and I’m writing this to you just at my 12 week post op date. I’m feeling good and finally getting a chance to have some restful recovery after all the bugs have gone. I’m taking another 4 weeks off due to the hematoma which is still there. I feel positive and I’m hopeful for the future. I do get scared at times that somehow the pain will return or that without the chance of my own children I may never have a family and be on my own. I’m still single, but hope that this will be the year I finally meet somebody that I can have a serious relationship with and some happiness. For me, the endometriosis has always been ‘baggage’. I couldn’t imagine anybody wanting to be with me and put up with the pain or emotions, which is crazy, I suppose, but I grew up with that pain and discomfort so have always felt like that. I would maybe like to adopt one day, but for now I want to concentrate on myself, enjoy my life, save some money and hopefully buy a house one day too. I’m proud to say that I am going to Paris in December for my birthday with my mum which is a testament to how far our relationship has come. Connecting with other endo sisters last year on twitter gave me the final piece of strength that I needed and on the 1st January I started @_EndoHappy as a way to give back all the love that they gave to me.


If you take anything from my story let it be two things: Firstly, if you are suffering emotionally, don’t hold it in - tell people about how you are feeling. Those that care will be there for you and those that don’t will thankfully disappear. You cannot expect people to understand, but people will help if you let them in whatever way they can. Secondly, make good nutrition and exercise a priority to help you manage your endometriosis. While I cannot say it ever stopped my endometriosis returning, it did help me to manage the pain and I know from times that the pain was always worse when I hadn’t been to the gym or eaten healthy meals, and an endorphin rush from exercise was better than any painkiller that I could take.




Thank you for sharing your story Katie. I am very hormonal at the moment, I do admit, but your story really made me cry. It's been such a long and arduous journey for you and you've had some real lows. It's so sad that this disease has taken away your chances of having children but I truly hope you find your match this year so you can have part of that family you deserve.

If you would like to contact Katie, you can follow her on Twitter @_EndoHappy.

Can anyone relate to Katie's story? Have you had cysts on your ovaries? Have you had an ovary removed due to it? Has your endometriosis resulted in a hysterectomy? Has it every been suggested that you have Irritable Bowel Syndrome, possibly instead of endometriosis? 


Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at shireen.emlwy@gmail.com along with a photo and I'll pop it on to here for others to read. 

S.
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