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 firstname.lastname@example.org along with a photo and I'll pop it on to here for others to read.