An Endometriosis Story

I’m 23 and was diagnosed with endometriosis in January 2012. 

I had my first period when I was 11 and they were always painful, but my older sister was the same and doctors just said it was normal. I went on the pill when I was 17 to help make my cycle more regular, but I still suffered a lot with the pain and I always bled very heavily. I suppose I just accepted it.

I remember one month when I was 19 the pain was worse than normal. I came home from work and went in the bathroom to change, and within seconds there was a trail of blood on the floor. As I said, my periods had always been heavy but I’d never seen anything like this. My parents took me up to A&E but we didn’t really get any answers. They didn’t want to examine me because it would have been uncomfortable for me as I was bleeding. I’d had a boyfriend for over two years at the time and we were sleeping together but we always used protection, so I didn’t think I could have been pregnant but they said that was a possibility. My boyfriend at the time wasn’t very nice – I called to let him know I was in the hospital and his response was that he was going out with his mates, so I didn’t feel comfortable discussing the issue in front of my parents! The doctor told me I should come back in a few days to be examined, but stupidly I never did. Other than that, they told me to tri-cycle my pill to make my periods lighter and they sent me home.

Things got easier from that point, even though I still had bad period pains I could cope with it being once every three months. I split up with the boyfriend, for obvious reasons, and I started going out and enjoying myself a lot more because I felt like I’d wasted my teenage years on him.

Then, in April 2011 I met my current partner. It was a really good time in my life – I had a lovely new boyfriend, my best friend was due to get married and I was a bridesmaid, I was sharing a flat in Liverpool with my sister and having a great time – I was generally happier than ever. Then one morning in July, I had stayed over at my boyfriend’s house and when I woke up he was already in the lounge watching TV. I threw one of his t-shirts on and went to join him. I sat on his knee to give him a hug and a kiss, and when I stood up there was blood everywhere. I remember feeling like I’d been stabbed, the pain was so intense I couldn’t stand up and my boyfriend had to help me back to the bedroom. I was so embarrassed, I didn’t know what to do and I didn’t understand how I could be bleeding so much when I was halfway through a pill packet. I convinced myself it was nothing, but after that day I started bleeding every time we had sex. I knew it wasn’t normal but I remember being scared to go to the doctors.

After two weeks I made an appointment, they asked for a urine sample and told me straight away I had a bladder infection. I was sent home with a course of antibiotics, but nothing changed. I went back when I’d finished the antibiotics and saw a different doctor who completely dismissed me and said I was “too young” to have any gynecological problems. I was told my symptoms (severe abdominal pain, unexpected heavy bleeding, pain during sex) could only possibly be due to an STI.

When I’d split up with my ex boyfriend, I found out he’d been cheating on me. As he was the only sexual partner I’d had, I was terrified at the time he might have caught something and passed it to me, so I was tested for everything before I met my current boyfriend. I told the doctor this and she said if I was sure it wasn’t an STI it was probably just a phase and I would grow out of it. I tried to believe this and did nothing for another month, but by this point my boyfriend and I couldn’t sleep together at all as it was so painful, and I had to constantly wear dark colours even though it was summer because I could start bleeding unexpectedly at any time.

I went back to the doctor in September and asked for a second opinion. They refused to even look at my case until I’d had a full STI screening, so I agreed. My boyfriend and I went to the clinic together and were tested for everything. Even though they wouldn’t get the results back for a week, they were so certain it was chlamydia they gave me the medication there and then to take home with me. When I explained I’d been tested before, they said there could have been an error with those test results. I was then panicking I could have had chlamydia for a long time and it had just been undetected, they gave me information on Pelvic Inflammatory Disease and said I’d need more tests as that was a possibility. The next week seemed to drag on forever. When I eventually phoned to get my results, I was so relieved to find they were clear.

I immediately made another doctors appointment, I thought now they knew it wasn’t an STI things would be straightforward from there on, but it was another 5 months before I finally got a laparoscopy. In the mean time I was told I must have an “undetectable pelvic infection” and was given course after course of antibiotics, mainly metronidazole, which made me violently ill. I eventually saw a GP who recognized there was a problem and referred me to a gynecologist, and after phoning the hospital every day without fail for 3 months to see if I had an appointment yet, they finally agreed to see me on the ward. The doctor I saw that day told me straight away she thought it was endo, and I had my lap just three weeks later. When it was confirmed I did have endometriosis, I don’t think I even felt scared, I was just relieved to finally have a name for what was wrong with me!

Since then, everything has been a bit of a roller coaster. I went through a lot in the first few months after my diagnosis – I lost my job as they wouldn’t give me time off for my laparoscopy so I started a new job as soon as I recovered. It was a bad time to be out of work though, my boyfriend and I had just moved in together and we were struggling financially, I was ill, my hormones were all over the place, everything was just wrong. I think it was too much to deal with at once and we split up. I moved back in with my parents. My boyfriend and I managed to deal with our problems when I was feeling a bit better, but by this point I was suffering from depression. The progesterone tablets I was on contributed towards this massively, and I was prescribed anti-depressants as a temporary measure.

September 2012 was a very eventful month for me. Since my laparoscopy, I’d tried 3 different tablets as well as the mirena coil and none of them seemed to agree with me, but I think I was getting used to the pain by this point. I was still living with my parents but my boyfriend and I were getting on really well, money wasn’t as much of an issue any more and we were hoping to be able to move back in together soon. I’d been in a job I enjoyed and was good at for six months, I’d even had a promotion and a pay rise and was managing to get on with my life despite my endometriosis. Yes, I had days where the pain was so bad I couldn’t go to work, but I was honest about my condition from the start and I worked so hard when I was well I tried my best to over-compensate for my illness. Looking back, I probably worked a bit too hard – I was stressed and exhausted and a really bad flare up meant I had my third absence in six months. My performance in work became irrelevant and I had to go through a disciplinary hearing. I understood it was company policy and handled it quite well, but I wasn’t treated very nicely! With hindsight, I think it was mainly scare tactics. I loved my job, my bosses knew I loved my job, I genuinely think they thought if they could scare me into thinking my job was at risk I wouldn’t have any time off anymore. I was given a verbal warning and I tried to take it on the chin, but I couldn’t help taking it personally. I suppose my hormones probably had a lot to do with that, but I just felt hurt that I was being punished for something I had no control over. I never felt the same after that, I lost my enthusiasm for the job and just got through each day doing what I needed to get by. I spent every day in work feeling miserable because it wasn’t the same for me anymore.

Things came to a head when my bosses called me in to their office one day to ask how things were, and in the conversation that followed, one of my bosses (a woman approaching 50, with grown children) told me: “Endometriosis isn’t like that. I was diagnosed with it 5 years ago, they gave me a hysterectomy, I had a couple off weeks off and I was fine. Not a day off since. And yours can’t even be that bad! All they are doing at the moment is trying tablets and the mirena coil, if you had it bad they would have given you a hysterectomy too.” This woman was diagnosed in her 40’s and already had children. I was 23 with no children, yet she couldn’t understand why doctors hadn’t just gone in and got rid of everything, it would have solved the problem so easily! When I left her office, I went outside for my break and I never went back.

I was lucky and I found a new job straight away, working for a company I worked for a few years ago, but I hadn’t anticipated how hard it would be. It felt like a massive step backwards. I’d left this job at age 20 – moved on to bigger, better things, and now I was back explaining to people how my life had turned out so differently from how I’d planned. It sounds really shallow now probably, but I just found it really difficult, like I had no prospects any more. I went in to a very dark place around that time, I didn’t cope very well at all. My hormones probably contributed to a lot of it, but I couldn’t think logically at the time, I just felt so hopeless. I pushed everyone away and ended up feeling very alone even though I’d thought that was what I wanted.

One Tuesday night in October, 2 weeks into my new job, I was about to get the train home from work and for some reason decided I really didn’t want to go home. I just needed some time and some space. Instead of doing something sensible like going for a walk, I sat in the pub opposite the station on my own, proceeded to drink a bottle of wine, went in to the toilets and started taking the 30/500mg Co-codamol in my handbag. I stopped myself at 8 and broke down. I don’t remember making the decision to take them, I don’t think I wanted to die, I think I just simply didn’t want to live anymore. I just felt exhausted. The main thing is, I stopped myself, I realized there was a serious problem and I tried to do something about it. The next Tuesday, I passed the same pub on my way home, but this time it was after my first appointment with a therapist. After that, things got better and better for me.

I saw my gynecologist at the end of October and he said he wanted to give me injections to bring on chemically induced menopause, then at the beginning of November I had my first Decapeptyl injection. Within a few weeks, I was hardly experiencing any pain at all and my mood lifted considerably. I went to Florida for 3 weeks with my boyfriend and had the time of my life. I’d been such a wimp all my life and suddenly I was an adrenaline junkie, going on all the theme park rides and wanting to try all sorts of new things. The buzz continued when we got back, I was so happy not to be in much pain any more that it was like starting a whole new chapter. I was full of ideas and plans for the future

We had a great Christmas and New Year. Last year I spent most of it in bed so I appreciated it even more, and I was convinced 2013 would be my year. I even talked about coming off the anti-depressants altogether because I didn’t think I needed them. GnRH was my miracle cure. The only side effects I was having were hot flushes and night sweats, the doctor had prescribed Livial as add back therapy for this, and I didn’t think it was a large price to pay to be pain free.

Then in January I went back for my next Decapeptyl injection and the nurse told me they were changing me to 3 monthly jabs instead of monthly. All I could think was “great, less hospital appointments, more of my life back!”

No matter how much doctors argue with me now and tell me it’s in my head, I knew straight away something was wrong. I stood up after the injection and was instantly dizzy. My dad was waiting outside the hospital to take me to work and by the time I got to the car I had gone unbelievably pale. I had to lie down in the back seat and at one point my dad had to stop the car because the movement was making me feel so sick. In the days that followed, what I experienced was like severe flu. I had constant headaches and was aching all over. I tried my best to carry on as normal, then the endo pain came back. I made an appointment with my GP who told me it was pure coincidence and I must have a bug because there was no way this could be related to the injection

The pain got worse and then I started bleeding again. I hadn’t bled at all since starting this treatment, so I phoned the gynae ward at my hospital. They said I wasn’t due to come back until April but if the GP could refer me I could come up the same day and speak to a specialist who would hopefully shed some light on the situation. I went to the GP, she checked my pulse, blood pressure, reactions etc and told me I didn’t need to go to hospital because I was in no immediate danger. I knew that – I wasn’t asking to go to A&E, I didn’t think I was about to drop down dead, I just wanted to see a gynecologist! She asked me to leave the room so she could phone the hospital, when I came back in she said the hospital had agreed with her and I should go home. I asked her to phone back in front of me. Eventually, she gave in and handed me a referral letter.

I went up to the hospital, my usual doc was on holiday so I saw someone different. He basically just agreed it was a coincidence etc etc etc, and gave me no real answers or hope. I was sent home again, the pain subsequently got worse and I took more time off work. I work for a large company now but it’s up for sale so we currently work for an agency. They have a strict “3 absences in 3 months policy” – I was up to 2 in a month. The stress about the thought of losing my job made the pain worse, it was a viscous circle, and I ended up signed off work by my GP.

I am supposed to have a review with my gynecologist in April so I phoned the hospital to see if they could bring it forward at all, mainly because I don’t intend to carry on with this injection and wanted to discuss what my options are from here. Their response was that there was no point, this treatment is in my system now, there is absolutely nothing they can do for me until April when it wears off. I felt completely alone again.

As the days passed, I didn’t feel like April was getting any closer and I became so obsessed with that date I felt like I was going mad. The only way I could describe it is that I felt like these hormones were some horrible foreign body inside me and I needed to get rid of them. I’d have horrific nightmares and wake up in the night feeling like I wanted to tear my own skin off. I really can’t even begin to explain it.

I felt less like my old self every day. I don’t even look like me anymore. I’ve put weight on, my skin is awful, my hair is like straw. I’d look in the mirror and hate what I saw. I was distant from everyone, I hardly bothered with friends and when I did, I felt like we had nothing in common anymore. I quietly came to the conclusion that there was just no hope anymore. Things weren’t going to get better. I’ve tried surgery, tried the mirena coil, tried birth control pill, tried GnRH. I feel like I’m running out of options and I suppose I just gave up. For days I felt like there was no point in anything, I was worthless and a waste of space.

I felt like nobody understood, April seemed like forever away and I felt like I really couldn’t carry on. Like the first time, I don’t remember it clearly, I don’t know what made me do it – but I took another overdose.

My boyfriend found me and called an ambulance. This time he insisted on telling my parents. They came to the hospital and were so shocked and upset I couldn’t stop crying because I felt so selfish to put everyone I love through this. I got to hospital at 4pm, had an ECG and was put in a private room to wait with my family. I’d taken a significant amount of pills but it hadn’t caused any serious damage.

A psychiatrist came to talk to me at about 11pm and I spent about an hour answering his questions. He concluded that the depression is secondary to my endometriosis, and that if my endo was cured overnight I wouldn’t be depressed anymore. I was honest about how down I felt, but he felt admitting me would be stressful and frightening for me, and now that my family knew I’d be safe to go home with them. He really was lovely and understanding and put a lot of my feelings down to frustration at being fobbed off by doctors constantly. He said he would get a gynecologist to come down and talk to me, even though they can’t do anything right now, he thought it would help me to be reassured that they are paying attention and they do know there is a problem. This made me feel better instantly, the psychiatrist made a call and left us to wait.

After an hour, my boyfriend went to find a doctor to see how long the gynecologist would be as I was in a lot of pain with my endo by this point. The doctors response was that he would get me some painkillers. My boyfriend said “I think she’s had enough pills for one day, don’t you?!” before the dr. mumbled an apology and went to call them again.

After another half an hour, a nurse came in the waiting room and said the gynecologist on duty had just called down. She felt my case wasn’t an emergency and I should go home and call my GP on Monday and ask them to send a letter to gynae.

At this point I completely broke down, I was sobbing so hysterically my boyfriend had to hold me up. I felt like screaming at them “This is the problem! This is how I’ve ended up like this!” I think it was the lowest I’ve ever felt, even lower than when I took the pills. I’d sat in the hospital for hours, poured my heart out to a psychiatrist to just be fobbed off once again. I felt like nobody would ever listen.

I’m starting to feel a little bit more hopeful though. I saw my GP on Monday and he changed me to a different anti-depressant. I’m also in the process of trying to get referred to a different hospital with an endo specialist. I’m hoping that a new consultant will be able to lift my spirits. My boyfriend has taken over negotiations with the hospital because I can’t face it any more. I still don’t have a confirmed appointment. I’m just trying to get through one day at a time, April still feels like a lifetime away and now everybody knows what’s going on I feel justified staying in bed all day every day. I know I need to snap out of that.

I had already written my story to share for Endometriosis Awareness Month and I just needed to edit it when my depression got really bad again. I’ve thought long and hard over the last few days about submitting the original version, but I think it’s really important for people to realize just how low Endo can make you feel. It has been really hard to open up about, but so far I have had nothing but supportive comments. I am surprised to find how many other women have been in a similar position, and I really hope this helps to raise some awareness for the emotional pain Endo can cause, as well as the physical.

By Anonymous