Today was supposed to be the beginning of a new chapter in my life.
Today I was supposed to be having my long awaited surgery and feeling hopeful about the future.
Well today didn’t really work out because today my surgery got cancelled and today I’m upset. And mad. Really mad. So I decided today would be a good day to write about my experiences of chronic illness and having adhesions and the effect it has had on my life. Not to receive pity or sympathetic comments, but because in a situation where I feel completely helpless I feel I have to do something. Because anything feels better than nothing right now.
My nightmare started in Feb 2008 when one Saturday night I arrived to play a DJ set at my usual venue. I was feeling a little fragile as two nights previously I had had a rather ‘late night’ shall we say, at a familiar club in Soho with some friends and was still a little wobbly. Because of this, I didn’t take the pelvic pain I was having too seriously. ‘You must look after yourself better’ I was saying to myself. ‘You’re just hungover still – deal with it.’ I was telling myself. But as I climbed the stairs to the DJ booth I knew something was badly wrong. I felt like my insides were about to pop. It was a hot, sharp, burning, pressing feeling. It took my breath away and I had never felt anything like it. But I knew it was something bad. I played it down for a while, telling anyone who asked I was fine. Someone I worked with asked if I was pregnant, knowing perfectly well I wasn’t, and I said what a hilarious idea that was and we joked and laughed about that for a while. By some miracle and with the help of many squats and awkward crouching positions for the duration, I managed to get through my set. I wasn’t happy with the way I played, it wasn’t technically perfect but the equipment was appalling and I could barely stand up so all things considered it was ok. I managed to get home on the bus and the following day I went to a Boy George concert In Croydon with my friend and the whole night I was in so much pain I had to sit down during the show. That was when I knew it was serious! I do NOT stay seated at gigs! Not EVER! (Unless it’s something jazz like or classical or I’m too drunk to stand up) The hours that followed were awful. I couldn’t turn over in bed, I felt like I had a football inside me and if I could have ripped myself open to get it out I would have. In the morning, in extreme pain, I crawled downstairs to the kitchen where I slumped into a plastic garden chair and my cat stood up on his back legs and placed his chin on my knees in sympathy. My then housemate asked ‘shall I call an ambulance?’ to which the answer was of course ‘Yes.’ In the ambulance the medics kept saying ‘it’s your appendix, it’s your appendix’ which didn’t seem right to me. Many hours sat uncomfortably in a wheelchair in A&E followed, doctors dismissing my pain telling me I just needed to pee (seriously?!) or I just had period pain, or most laughably ‘Maybe you just drank too much pepsi.’ After what felt like an eternity I was taken to a ward where I almost punched a nurse right out as she attempted to help me onto the bed. The pain was terrible and I was not in the mood for ‘just get up on the bed now, dear and everything will be fine’
In the morning I was wheeled down to theatre for surgery where they discovered a huge chocolate cyst the size of a football on my right ovary. It was so big it literally had nowhere to go any more. I also had a smaller orange sized cyst nearby which also had to come out. They were too big to remove laparoscopically so they had to be removed by open surgery. I hadn’t experienced anything like this before so it was all a bit of a blur. I was aware I had put on some weight recently but I just thought I needed to cut down on my beer and stuff. It never occurred to me I had cysts inside. I woke from the anaesthetic talking absolute rubbish and begging for pain relief. Later that day the surgeon came to see me in the ward. ‘You have severe endometriosis and we need to monitor your recovery for a while.’
One week later I was allowed home (in pain and cursing every step I had to walk down to to the taxi which took me home) where I completely underestimated how intense my pain would be. Walking down stairs hurt a lot and on attempting to take some parcels to the post office the following week I thought my insides were gong to burst out. One week later I was back in hospital because my wound would not heal. Every time I stood up, loads of yellow looking fluid poured out. The doctor decided it had not healed properly and I was ordered to return to the ward every day to have the wound packed out until it had healed from the inside.
And then things were pretty much ok for a while. I was back in the gym after 5 weeks. (yeah I know they say 6 but I couldn’t wait any longer) My periods were still seriously bad though but that wasn’t a new thing. Even before I was told I had endometriosis I suspected it. The pain started when I was 12. My mum wrote a letter to my form teacher at school every month explaining that I was off school because my periods were painful, and on my return, as she opened and read the letter, my teacher, in between flicking her brown hair and occasionally spitting on the table, in her Manchester accent would say every time ‘I don’t understand why you have to be off school every time you have your period, Katie. None of the other girls do.’
A couple of years later things didn’t feel quite right. I started to notice that every time I ate food, my stomach would bloat up like a balloon. I felt huge after just a few mouthfuls. But again because my job and my lifestyle involved socialising a lot I thought ‘Maybe I just had one glass of wine too many last night’ This went on for a few years. I kept telling myself that when I got back in the gym and started taking care of myself more these things would improve. I blamed myself for these symptoms and promised myself that I would finally sort myself out and become more healthy. I threw myself into my touring and DJing work because that made me happy and it took my mind off the other things that were happening in my life. I was really starting to get somewhere with it all and I felt like the hard work was starting to pay off. There were a few things I couldn’t explain like the extreme tiredness I experienced after food that would send me to sleep for hours or the terrible stomach pain that wouldn’t ease up but I ignored these things as much as i could because I wanted to get on with things. I threw myself into the gym again, spending an hour every morning on the rowing machine and then going back in the evening for a swim or to a class. I was determined to get fit properly.
At the end of 2012 I knew something was wrong again. Every time I ate any food at all I was knocked out. I had to lay down for ages after. It was a tiredness noone I knew could understand. Friends kept making comments like ‘oh well it could be worse’ or ‘you’ll just have to put up with it’ but that wasn’t helpful. Then the nausea started. Every day when I got up I had to be sick or at least try to. It made no sense at all. I wasn’t doing anything differently so why was I feeling like this? My stomach was huge. I would arrive at venues for gigs and go straight to the toilet to be sick before I had even taken my coat off. I couldn’t work out any more because the nausea was so bad. I had UTI after UTI and I just felt dreadful. Every time I had my period I would be in bed for days and then after that I would have inflammation that would travel up to my rib area for weeks and was very painful. I saw a gynaecologist at the local hospital who eventually referred me for surgery. On the day of the referral I walked into her room in terrible pain and with a shocking migraine and simply said ‘please help me’
So in Feb 2013 I had a diagnostic laparoscopy which showed multiple adhesions in the pelvic area and and several loops of bowel firmly twisted and adhered to my abdominal wall. When I woke up from my surgery i was told there were no nurses or doctors available to come and talk to me about my operation so i would have to go home and call the hospital the following week and ask what happened during surgery. ‘Sorry’ I said ‘but that just isn’t good enough.’ So eventually a nurse came, with coat and scarf on, ready to go home and not really interested in talking to me. She explained the loops of bowel were not separated because the gynaecology department ‘do not deal with bowels.’ So I then had to be referred by my GP to another department to see a consultant about my bowel adhesions. Three months later and still in severe pain I saw a consultant who dismissively sat back in his chair and rubbed his cheek and said ‘well maybe we will just leave it the way it is.’ By this stage I was only able to digest liquid foods so I was furious. A CT scan followed which I had to wait weeks for the results of, and finally I convinced him to refer me for surgery to separate the bowel adhesions. On the day of my surgery the surgeon who I had never met before said ‘oh hello we met before didn’t we?’ I had absolutely never met him before ever. ‘don’t talk to me’ he said ‘and don’t bother to tell me where your pain is because I will see when I look inside.’ This was at 7am. At 1.30pm I was still in the waiting room waiting to go down for surgery and I was horribly dehydrated and my painkillers had worn off.
The surgery happened and I was allowed to go home next day. ‘Great!’ I thought. I was ready to get on with my life. I had an amazing two weeks after my recovery going out for meals and socialising and feeling great. And then the pain came….
Exactly one month after my surgery I was taken back into hospital. I was out of breath and I had the worst pain ever under both ribs and all down my right side. I couldn’t cope any more. I wanted someone to come and take all this pain away so i could get on with things. Many tests followed, none of which were particularly relevant. A CT of the chest just in case I had a blood clot? My pain was not in my chest! I had a vaginal ultrasound which showed a tiny 2cm cyst on my right ovary. I had a gastroscopy which showed severe inflammation and a colonoscopy which showed ulcers in my large intestine. But of course, I already knew that because I was bleeding. Many doctors came to my bedside, on one occasion 8 doctors arrived at once which was extremely humiliating. ‘We have come to the conclusion’ they said ‘that this tiny 2cm cyst is the cause of all your troubles.’ ‘Also you have severe adhesions again.’ ‘and take painkillers for your ulcers’ I was so furious I had a bit of a strop and pulled my bedcovers over my face and refused to speak to them any more.
‘What can be done about this pain?’ I asked them later.
‘Nothing’ the surgeon quipped. ‘Take some paracetamol’
The night that followed was the worst. The pain was so bad I just wanted out. It was too much and the nurses on the ward had already told me that they were too busy to attend to me and not to press the buzzer if I was in pain. In all my 36 years and of all the difficult things I have experienced in my life I can honestly say that was the worst week of my life.
I left the hospital still in pain and disgusted. I then started the long painful procedure of getting referred to a different hospital. That was in August. I made many trips to A&E in desperation begging for pain relief. I also had acupuncture and saw a nutritionalist in the hope of improving my general wellbeing. I just had to do something. This didn’t work out because every time I ate I would feel extremely unwell and in September we mutually agreed that my condition was so severe that those treatments could not help me and I was devastated. I had tried so hard and put all of my energy into making myself better and it still hadn’t worked. I just didn’t know where to turn and I felt really alone. In November I saw a consultant who miraculously said ‘ we have to do surgery again because we have no choice’ Unfortunately his referral went missing in the hospital computer system so two months later I paid for a private consultation with the surgeon I was referred to. In January he put me back on his NHS list on the condition that ‘we do more tests’
Two MRI scans followed and several months went by before I could see him again. ‘Nothing shows up on your scans’ he said. Of course they don’t doctor! Adhesions don’t really show up on scans! We ALL know this! ‘I think some of your organs may have fused together but it’s pointless separating them because it will happen again.’ Eventually, after many arguments and a complaint made by me against the hospital he referred me for surgery which has now been cancelled and no further date scheduled as yet.
I just want my life back. My bowels now work slightly better than they did before the last surgery which is amazing but the pain in my abdomen is shocking. I can’t eat anything without pain and my quality of life, my relationships and my work is suffering. I am on Codeine and Tramadol and Tapentadol and Buprenorphine which sometimes helps but mainly makes me sleep too much and leaves me feeling like a complete zombie when I would rather be out with friends. I am trying to work still but it is not always possible. The only time my pain is reduced is when there is no food in my body at all. I will continue to do my best and that is all I can do. I know my adhesions will come back after the next surgery and my life will never be the same but I am ready to try one more time. I am still a real person with real feelings. The worst thing is that I could not have done anything to stop this happening to me and that seems unfair. I have achieved many things in my life and I hope to continue to do so and right now anything I can do to help raise awareness of this awful thing is worth doing. I hate not being out there DJing every weekend and as soon as I can get this under control a bit more I will do my best to get back to it.
If I could say anything to those who have no knowledge of adhesions?
If you don’t know what they are or how they affect people’s lives – don’t ask me ‘Are you feeling any better yet?’ or ‘Are you STILL ill?’ Those comments infuriate me so much. If you want to know how this thing affects people – please do not just look at me with a blank face when I try to explain – Look it up. Please do not doubt my pain because one day it could happen to you. If you are lucky enough to be able to go about your day and eat without pain please do not ever take that for granted, even if it’s just a piece of toast before work or a plate of chips in a service station on the way to a gig. Not even for one day. Incurable means incurable. If you see me out and about it is because I am trying my best to be normal. It does not mean I am ‘better’ or not in pain. It means I am finding the strength to get through my day the best I can and I am extremely proud of the way that I am doing that. I don’t tell people how bad things are sometimes because people are busy and quite frankly nobody wants to hear it. Since I’ve been ill many of my friends have vanished. I no longer have the energy to keep making the effort that I once did and I have had to accept the way that things are.
Oh! That ‘absolute nonsense’ thing that I said when I woke up from my first surgery in 2008 was actually ‘I’ve got to go to work! I’m VERY important you know!’ (whoops that’s anaesthetic for you!) Well maybe I will remind the surgeon of that next time. If it ever gets done that is!
This is another one of the friends that I have met in the adhesions support group that I am in on Facebook. We are alike (and unusual from the norm) because our adhesions formed mostly from infection instead of from surgery. I hope that you enjoy reading her story. If you do, please comment and give her a hello.
My name is Mendy I’m 51 years old from Cocoa, FL and this is my story:
My life with abdominal adhesions began in 1979 when I gave birth to my son. I was 17 and had an easy pregnancy and delivery, when I went in for my check-up I told my gyno that I thought I had an infection. He said I didn’t. We went back and forth like this for a few years, eight years to be exact, when he finally told me that I didn’t have an infection it was just “gods” way of punishing me for having a baby so young.
I changed gyno doctors and the first thing the new doctor did was clear up the (non-existent) infection which turned out to be PID. Since I was now re-married and wanting to expand my
family we started taking fertility pills because I was not getting pregnant on my own. After two years of taking the pills I found out that I was pregnant. My new husband, myself and my 10 year old son were over the moon with excitement. I was four months pregnant when we had the first ultra sound and found out that something very strange had happened, I was pregnant but a baby never formed it was just a blob and it was known as a blighted ovum and the pregnancy would terminate and a D&C would need to be performed. After a period of mourning and healing time we decided to try again, this time my doctor wanted to do a laparoscopic to find out why the pregnancy did what it did and to see why I was unable to conceive normally. He did a video laparoscopic and found dense multiple adhesions that had all of my reproductive organs twisted and tied and adhered to other organs and my abdominal wall. They said it was called a frozen abdomen. He removed as many as he could safely get to and told me that my chances of ever conceiving or even carrying a baby to term was minimal at best and definitely not recommended. The PID for eight years had done the damage and that my life would never be the same.
For the next nine years I went from gyno to head doctor to gastroenterologist back to gyno in a viscous circle because adhesions don’t show up on any test so therefore it had to be in my head. In the meantime my menstrual cycles were coming very erratically some times I would have my period for months at a time and then they would stop for months at a time and the every day pain was getting worse and worse. I literally crawled into a gyno’s office and went through the story with him and begged him for the hysterectomy because I was told 10 years prior that was the only thing that was going to stop the pain. He refused because I was only 27, I asked him to watch the tape and get back with me. He phoned at 9pm that night and said he was setting me up for emergency hysterectomy the next day. This man was a god send. I don’t know what he did but I came out of the hysterectomy with my belly cut open from hip bone to hip bone and was told that the adhesions were so dense he had to stop the laparoscopy and go in abdominally, he removed adhesions for hours just in order to get to my reproductive system and while he was there he just removed everything so I wouldn’t ever have to have surgery again. He said he put some sort of surgical gel in and tried to coat everything to try and slow the growth of the adhesions down some but no guarantees. I was pain free for 6 glorious years and then had to have an emergency appendectomy. That was in 2003 and the pain has increased over the years until now I am back to living on a mostly liquid diet to try to avoid blockages and further surgeries. Adhesions have destroyed my life, I am no longer able to live a normal life everything I do depends on how bad the pain is that day. I can not plan anything that I can’t excuse myself from at the last moment most of my friends abandoned me years ago because they can’t count on me to be there physically and they definitely don’t understand because I “look fine” so it just doesn’t make any sense to them. I’ve lost my career because of the pain, I could take pain pills and make it through the day but who wants a doped up employee and if I don’t take the pills I am doubled over in pain and crying at my desk so my career ended in 2011.
My hope is that some day they will find a way to stop these dreadful ropes that tie my insides into a ball, if not for me than for future generations so they don’t have to live this way.
Thank you for listening.
Ok my friends, there you have it. Mendy’s story. Please leave a comment, even if it’s just a hello to let her know you stopped by.
Today I have a special guest for you all to meet. Her name is Laura Macky and she is a photographer, showcasing her beautiful work on her blog lauramacky.wordpress.com. You can read a bit more about her on her “About” page found here. Like many of us, Laura has spent a lot of time with her “happy face” on to the rest of the world, all the while hiding her physical and emotional pain on the inside. I really hope you all enjoy her writing because I’m trying to convince her to write a series of posts (in other words, let’s show her lots of love in the comments section so that she’ll come back 😀.)
Enough of my chattering, here she is: Laura Macky!
I’m honored that I’ve been asked to do a guest blog here. It’s kind of a big deal for me because I’m one who likes to present a smiling face and one who doesn’t show what’s really going on inside. But I think a lot of us are like that, don’t you? Lately, life has been a journey of awakening, spiritual growth and learning how to deal with a myriad of physical and emotional issues. Thankfully, I’ve learned how to awaken creativity inside of me in a new way (meaning photography) which has given me a new lease on life!
Almost as far back as I can remember, I’ve battled depression and addictions due to a dysfunctional upbringing. Growing up was not a happy place to be most of the time emotionally, and when I started having physical problems on top of that, it sunk me further into depression and addiction. Fortunately, I’ve been working on myself with a wonderful therapist who I call “Dr. Bill”. He is a gem and I really don’t know where I’d be today without him.
My physical problems pretty much all started with an auto accident which set me up for a lot of health issues. After having neck surgery, I was left with nerve damage on my right side from my jaw down to my fingers which means I have a very hard time doing simple tasks and have constant pain on that side. Also after the surgery, I developed a severe case of fibromyalgia. For years I kept thinking it would “go away” and I spent a lot of time in doctors’ offices reading a lot of sailing magazines, lol. I’ve often wondered if sailing magazines give discounts to doctors or if there really are that many doctors who sail.
Needless to say, I was very down in the dumps. I could no longer play the piano which had been my “go-to” hobby since I was four years old, gone were the days of working out at the gym which I so loved, and I was so depressed that I really didn’t want to live any longer. I was a mess yet always presenting a smile on my face to the world and my family.
Finally, I realized I had to do something. Slowly but surely I started a Laura Macky overhaul in the way I interact with life. The realization set in that things weren’t going to improve drastically physically, so I had to change the way I viewed life from the inside. I started working on myself through therapy and support groups, but I still missed having a hobby. Hmm…what to do…….
Enter photography! It’s a fairly new hobby for me, more seriously delving into it in the last year, and it’s made all the difference. Photography has given me the excitement of seeing things again. Our world is so beautiful and I’m happy to be a part of it again; not only physically but with everyone I’m meeting via WordPress too. I really enjoy reading others’ blogs of all different types, and when we all share things together it makes it even better!
I really appreciate this opportunity to open up and share what’s really behind the lens.
Today’s guest post is from Simon Wilson. When most people think about adhesions, for some reason they relate adhesions to women. Probably because of childbirth, we have more pelvic issues. But adhesions can happen to anyone. Men can suffer from adhesions just like women can. Like I had mentioned in another post about getting to a point where you have to go on a liquid diet. Well, Simon told me that in this photo, he is happy to be eating solid food, a rarity once the liquid diet becomes a necessity.
In 1992, aged 25, I was working in the murky but exciting world of politics, when one morning found myself on the wrong end of a hit and run car crash. With major internal injuries, emergency abdominal surgery saved my life and I woke up 3 days later in intensive care minus a spleen and some bowel and spent 3 months in hospital. As you may have guessed, this was not the end of the story. Instead began cycles of obstructions, hospital admissions and surgery. Have now had 12 full laparotomies. Adhesions were diagnosed early on and I was referred to St Mark’s Hospital, a specialist bowel and intestinal unit, where I was also diagnosed with pseudo-obstruction a rare condition which means the bowel just stops for a while-sometimes for hours, or days, weeks or even months. Adhesions are the main problem but the combination is not to be recommended. At one time I was having 100+ nights a year in hospital- I was even invited to the ward staff Xmas party!! My faith kept me going- my walk with God deepened and I found myself called to the priesthood and 3 years of theological college later was ordained alongside my wife, who I had met while training. I have served God as a chaplain, a priest and an advisor to Bishops. My health has deteriorated in recent years, so much so that I have had to quit my job. What were my bad days now equate to my good ones and that is frightening. Condition managed by targinact-a new painkiller which brings together oxycodone and naloxone, which is an anti-constipating agent. I have a system where I can self-admit to hospital and try and enjoy the better days, enduring the hard ones. Of course, I wish that I did not suffer in this way, but coping with ARD and illness has partly made me who I am today. in all the pain, frailty and vulnerability I have been blessed with skilled and understanding doctors, a loving family (we adopted our daughter 3 years ago and she is now 6-and the best medication of all), and most importantly the solidarity of a whole community of fellow sufferers whose support, banter, humility and care mean the world to me. Most of all I thank God for his faithfulness and I look forward to receiving the healing only he can bring. Don’t listen to myths, MEN GET ADHESIONS TOO!!!
I recently posted on my Facebook adhesions group for people who were willing to tell their story(s) about adhesions. This is the first response I received. I am so excited to be able to bring you other “voices” of adhesions or ARD (Adhesion Related Disorder). So, without further adieu, this is Gemma’s story.
This is my story.
At the age if 16 I was forced to had a termination following which I suffered a really bad infection. Exactly 12 months later I was rushed into hospital with unexplained abdominal pain. I had this on and off for a few years. At the age of 20 I was referred to a gynaecologist who did a laparoscopy where he found my fallopian tube was attached to my bowel. I also had polycystic ovaries which were drilled. I had trouble conceiving but after some treatment finally conceived after 3 years. After the birth of my daughter I suffered extremely painful and heavy periods but no other pain. I underwent a laparoscopy to burn the nerve endings to my womb away. Following this i conceived with my son. After the birth of my son my periods were even heavier so they agreed to burn the lining if my womb away but this was unsuccessful and the following year I underwent a partial hysterectomy at the age if 28. After this I continued to experience pain and the following year they operated to remove my cervix, they did this by keyhole and found I had extensive adhesions but they would not touch them as by keyhole it would be too dangerous. I was put on morphine for pain and sent home. The following year I went back for laparotomy and lysis of adhesions. At this time they found my bowels, bladder and ovaries were all stuck together and attached to my abdomen wall. All this was cleared up and put back properly. I was pain free following this for 8 months, however they returned and for the next 4 years the pain continued to increase and was soon back on a morphine substitute. Earlier this year I was referred back to my gynaecologist who sent me for an MRI scan which showed my ovaries were attached to my bowel and my bowel was twisted. He agreed to operate but referred me to a bowel surgeon so they could operate jointly. I had surgery 8 weeks ago, they opened me from my belly button downwards, removed my ovaries, fallopian tubes and cleared up the adhesions. Pain has greatly reduced following surgery, until this week the pulling had gone, however this has returned along with the constant abdominal / back pain and I know the adhesions had returned. I also know that I cannot have any more surgery unless an emergency and have to live with adhesions for the rest of my life.
co-written by IamAwakeNowTVM
Have you ever been afraid as you’re walking into the doctor’s office? You just had tests done and you’re afraid that your test will come back negative? Most people hope, even PRAY for negative test results…’the cyst was benign, you don’t have cancer Mrs. B.’ or ‘the 24 hour heart monitor showed no problems, you’re heart is fine for now Mr. G’. This is how it’s supposed to be…hoping that nothing is wrong because you feel fine.
There are many people out there, though, where this is just not the case. They know their bodies, they know something is wrong, and they feel pain…but they can’t prove it. They want a positive. They are sent from one doctor to another, one specialist to another, each doing their own blood work, imaging (x-rays, CTs, MRIs), and other tests just to keep being told “No, I’m sorry Mrs. K. There is absolutely nothing there that can be causing your pain. Have you thought about seeing a psychiatrist?” In other words, it’s all in your head. Are you going to take that?
For me personally, it took two years, one cyst, two surgeries, two GPs and two specialists to mention that I had Adhesions. One of those general practitioners did blood work and x-rays looking for something that could be causing my pelvis/abdomen to hurt. Of course, he found nothing. I went back two more times with the same complaint, because the pain (at that point it was more of a constant discomfort) just would not go away. The last time I went, my doctor was on vacation or for some other reason was out of the office and one of the other clinic doctors saw me. He told me in a very antagonizing way that he had reviewed my chart and that the lab work and imaging that had been done previously had showed nothing, so he didn’t understand why I would repeatedly return claiming to have the same problem. I told him that I returned because ‘the problem‘ had refused to go away, so there had to be a reason for it; he in turn refused to listen. I was informed that there was absolutely nothing he could do but to refer me to a psychiatrist. I was so angry that he had blown me off the way he had that I was in tears as I was leaving… oh, but there was more. To add insult to injury, as I went to check out, the receptionist (who had been a coworker of mine a few years earlier) told me in a low voice as she was handing me my referral (that I had absolutely no intention of using) “I just wanted to let you know that Dr. X just told me to add you to the clinic’s list of drug seekers”. I was floored…I hadn’t even asked for pain medication, just answers. Needless to say, I never went back there again. Once the pains started getting worse, I was able to describe them better, so this time I went to my ob/gyn. He did some imaging because my abdomen started swelling besides the pain (which had gotten worse) and he found a cyst. At first he tried to give it time to go away on its own. When it didn’t, he scheduled surgery. After that surgery was the first time I heard the word that now haunts me even in my dreams: Adhesions. He didn’t really explain what they were, just that he had cut them away so I would feel better. And I did…for a while.
It took another 3 years, two cysts, one GP and four specialists to admit that it was the adhesions that were causing my pain. I moved to another city to go school. When the familiar pains and abdominal swelling started, I went to the first ob/gyn in my new town. He found another cyst and told me that I needed a total hysterectomy…(crickets chirping…I was only 27). I respectfully told the old man that he had lost his ever loving mind if he thought I was going to agree to that, so to try again. My next option ended up being a fertility specialist. He did one surgery and it felt so much better afterwards (well of course because the pain was gone…p.s. There is a huge difference between the pain I had before my surgery and normal post-surgical soreness) so anyway, when the doctor’s assistant came by to check on me I already had clothes on and was laughing and joking around. The lady did a total double take to check out what was going on and asked me if I was the one who just had surgery. I said yes and she was amazed that I felt that much better that fast. When the doctor came, he told me that he had gotten the cyst and that I had adhesions, but that they were pretty bad and that trying to cut any of them “would have been too risky”. The second cyst and subsequent surgery was basically the same. I kept hurting a little afterwards, (not like now, but hurting just the same). I mentioned it to the doctor and he checked for a new cyst, but there was none. He told me that he had no idea why I was hurting if there was no cyst to be causing the pressure inside that I was feeling. He said that the adhesions could be a problem, but that it was beyond his area of expertise and I should see an oncologist because they were the best surgeons – which I did – only to be told that he was very sorry, but he worked with cancer not adhesions. I wasn’t really sure where to go from there, so I decided to start researching these things called adhesions that everyone kept telling me I had. The information said that they could sometimes cause pain, and I had every single symptom mentioned there plus the recurring cysts, so I figured there was a pretty good chance that this was the culprit. The issue then was finding a doctor who knew enough about them to help.
I thought I was the only one who had adhesions. I thought that I was some sort of freak of nature (well, at least that I was abnormal) until I found an online support group just for people with adhesions. Although the support group was based in Australia, I found a lady’s profile on there who lived in Alabama like me. She raved about the doctor she saw who’s office just happened to be in my town! I looked the doctor up online and the lady wasn’t the only one who raved about him. There were positive reviews about him, the other doctor who practiced there, and even the rest of the office staff. Then I found out that the doctor who founded the clinic had passed away. So, I focused on the assistant-turned-primary doctor. He had the exact same positive reviews as his predecessor. So I said to myself ‘Self, I have got to see this doctor. Maybe he can get rid of these adhesions and my pain will stop” so, I called to make an appointment. This was a ‘pelvic pain’ clinic. That was perfect since what I had was pain in my pelvis (are you seeing how this is all fitting together?) My appointment was actually three months away (pretty busy guy, must be a good sign) but since I had requested to be put on the waiting list for cancellations, it only took about 2 weeks to get in. The rave reviews had been right. He was thorough during the pelvic and physical exam, thorough in his assessment of the issues, he asked the right questions, and he listened attentively to my story. All in all he spent close to an hour with me. And after reading the reports from the previous surgeries, he said the one thing that I had waited five long years to hear…”You are covered in adhesions; that’s why you’re hurting so badly.” Validation. I even remember telling him that the doctors before him said that they didn’t know why I was hurting because they couldn’t find anything on the tests. That’s when he explained that adhesions can’t be seen on any test. The only way was by seeing them during surgery. I still wanted to make sure so I asked him why they made me hurt so badly. He explained that basically my insides were glued together…organs stuck to other organs stuck to bowel stuck to the abdominal wall. Every move I made would pull the muscle which would pull the adhesion which would pull on one of my organs, and organs just aren’t made to be pulled on. I asked him if he would be able to cut them out like before so that I would stop hurting. He kind of got this sad look on his face and told me that he was a good surgeon, but what I needed was a GREAT surgeon. He told me that by this point, the adhesions were so bad and so much bowel was involved that it would be difficult to find a surgeon willing to operate, but he also said that in the meantime he would try everything he knew to do to help me control the pain until surgery was an option again. He said “It will be a long bumpy ride, Joy, but I will be here with you the whole time.” I was so happy but so scared at the same time. I had a disease that no one knew about; that doctors wouldn’t admit to. That disease was causing my pain and discomfort and I was just going to have to live with it. There was no definite cure, only managing the symptoms unless I could talk someone into cutting out the adhesions, and then there was no guarantee they wouldn’t grow back. But, on the other hand, I finally knew what was wrong with me, I had a doctor to validate the pain I had felt for so long instead of trying to send me to a shrink or say I was a drug seeker and, most importantly, I had a doctor that cared about me.
The moral of this story is that you have to be your own advocate.
“You are your best Advocate
Knowledge Builds Confidence
Confidence Builds Enthusiasm
Listen, nobody’s going to do it for you. Do the research, do the leg work. Get all of your medical records together. If you have a smartphone or a tablet, put the records on there including any x-rays, CTs, MRIs and then make sure to take it to the doctor with you. If a doctor tries to say he hasn’t seen the test results…show them to him, right then and there. These doctors are working for YOU, not the other way around. So if you go to a doctor who doesn’t listen to what you have to say, call them out on it – or better yet, just don’t go back.
“I have actually stood up in a provider’s office 5 minutes into a ONE HOUR appointment, reached out my hand to shake his, and said this: ‘I refuse to have my medical conditions and my intelligence insulted. Would you mind having your receptionist refund my co-pay please?’”
Find a doctor that will listen. You know your body better than anyone else. If you know something is wrong, find a doctor who cares enough to find out what. If you don’t know where to start, but are reading this post, then you are already in the right place…the internet. Google your city and the type of specialist you need and go from there. Look up each doctor listed individually. There are lots of websites that provide reviews and other information you might need such as the hospital they are affiliated with, their address, and their phone number.
Lastly, the prescription drug abuse epidemic has made it nearly impossible for people to get relief from their pain. Unfortunately, doctors DO look at your appearance and your attitude when trying to figure you out. If you are too shy, too pushy, act like you are trying to “play” the system, look like an “abuser”, or especially if you don’t have much evidence to “prove” your pain, it is more likely than not that you will be overlooked and not provided appropriate pain relief. I know that when you hurt, the last thing you want to do is get dressed up to go to the doctor. You don’t have to. But you can’t just roll out of bed (without washing your face and brushing your hair) and show up in your pajamas. You have to be confident in your self and in your story. But most importantly, be honest about your pain and your pain levels so that you can get the best pain management possible.
The thing is, I was lucky. I only had to wait five years to get my diagnosis. There are people who have waited 10 or 15 years…some take more and some unfortunately aren’t diagnosed until autopsy. Don’t be one of those people. Do your research, be your own advocate, and find a doctor who cares more about his patients than counting his money at the end of the day. Most importantly, be honest with your doctors so that they can help you. If you already have a diagnosis but don’t believe you are getting the treatment you deserve, the same goes for you. The doctor is supposed to work for you. Find one that will. Honestly, it will change your life…and for the better. It will be worth all the work you put into it.
Edited on Jan. 1, 2014