My Experience

From the age of 15 I began to experience low grade hemorrhoids, small internal ones that would pop out when I was standing or moving around too much. I ignored them and for the first few months they would only last a few days and then disappear. Though the hemorrhoids caused slight pain and discomfort they were tolerable. Gradually they began to stick around for longer, these times lasting for up to a month and increasing in pain. I began to worry and decided to tell my mother. She ended up taking me to a colorectal surgeon.

In my teens I was a particularly healthy child, I ate well, did a lot of walking but not strenuous exercise. When the doctor asked about these areas of my life he passed what I had said off and believed that I must have been eating or doing something wrong for these long lasting hemorrhoids to exist. He decides to perform a banding surgery where bands are placed on the skin area above the hemorrhoids to help suck it back in with pressure. Within a few days of that surgery the hemorrhoids had gone down and I believed that everything had returned back to normal.

Unfortunately, only 3 weeks later I began to experience the hemorrhoids once again. This time they had come back with a vengeance. I now not only had internal hemorrhoids but also external. They had multiplied in size and added up to about 4 altogether in varying sizes. The largest being the size of a grape. I still was continuing my healthy habits and therefore was very unsure as to why I had flared up and this time I worse than ever before. I was about 16 when I returned to the colorectal surgeon. Without much examination into why these hemorrhoids were returning when I had seemed to be living a healthy life, he decided to perform one the most major hemorrhoid surgeries that exist, a hemorrhoidectomy. This procedure is where they cut out the area of the thrombosed hemorrhoid, and I had several. This procedure is known to be more painful to recover from than having an arm amputated. This is due to your colon being an area of your body that is in constant use. Whether you’re pooing, passing gas or resting, the muscles are constantly in movement. This causes a tremendous amount of pain in the wound area because it is trying to heal but there is constant movement. The healing from surgery took about 3 weeks for me and has been one of the most traumatising incidents that I have  experienced. I was young and hadn’t properly understood or agreed to what I would be suffering on the other side. Twice during the healing process 2 small hemorrhoids returned but after those faded it seemed like my body had returned back to a healthy state.

Fast forward 3 years and I’m 19. This time of your life is meant to be spent frolicking around and enjoying time with friends. Regrettably, this wasn’t the case for me. I still kept to a healthy diet and exercise routine but the hemorrhoids had slowly crept their way back into my life. It started with a bit of denial. I stood up for a long time one day and noticed that by the end of it I had, for the first time in years, a small hemorrhoid appear. This day was like opening up a floodgate. Gradually over a period of a year they began to get worse, multiply and become bigger. The hemorrhoids started to rule my life, I would have to cater how long I could work, socialise (even seeing my own family), grocery shop and do anything outside of being at home.

I had lost a lot of faith in colorectal doctors due to the traumatic previous surgery but was urged by my family to try again. I had freshly turned 20 when I was referred to one of the ‘best’ specialist doctors in Sydney and went through the usual motions of “but you’re healthy and young, this shouldn’t be happening to you”. I mentioned to my doctor that I was wanting to travel to South East Asia but was too afraid to just in case a flare up occured. He told me that hemorrhoids shouldn’t stop me from travelling and I should still go out and enjoy life. Boy, do I wish that I had listened to my gut instead. The doctor and I planned a banding and nerve block surgery for a few months before I left for the trip. Even though I have had that surgery in the past he wanted to try it himself and see if it would now effect my body differently seeing that years had past.

The surgery seemed to settle out a few of the smaller internal and external hemorrhoids. There weren’t any large ones at the point of this surgery because they generally occured during times when I was very stressed out or had overworked my body in some fashion. The doctor and I were both happy enough with the result and I continued to plan and then go on my trip. The first 3 weeks of my trip were wonderful, I did a lot of walking  around and site seeing and hadn’t experienced any pain or discomfort. When entering the fourth week things started to change. As each day went on I began to noticed several large hemorrhoids, the ones that I would usually get when I was stressed, start to swell. At this time, I was very conservative about revealing anything that has to do with hemorrhoids, even when it was about me experiencing great pain. I acted as if everything was fine for the first few days until the hemorrhoids became so large and thrombosed that I couldn’t even lie down without being in excruciating pain. I pretty quickly became physically unable to move or help myself and ended up needing to cut my trip short and be flown back home so that I could have surgery performed. Proving to the insurance company that I was in extreme pain was definitely a very difficult experience. When you’re frozen in bed unable to move an inch but have to travel to 3 foreign hospitals to get several medical certificates proving that your bottom looks like its exploded, it’s not a lot of fun.

Shortly after coming back to Sydney I had another banding surgery performed with a nerve block to try and get everything to settle down. The doctor didn’t want to perform another hemorrhoidectomy so decided to stick with that until we had performed some further research on my body. Months pass and I still continue to get hemorrhoids but found ways to manage my life whilst experiencing this. I would lie down whenever I could (sitting, standing and especially movement would irritate my body), work only a few days a week whilst going to university most other days of the week. When I could occasionally have an unmanageable flare up I would take time off of everything and rest until it got better by using steroid cream and Epsom salt baths.

Over the period of being 21-22 my body continuously got worse to the point that my management techniques weren’t cutting it anymore. The time between not having a hemorrhoid became smaller and smaller until the point of me constantly having them, both internal and external. My colorectal doctor ran many tests on me, for example MRI’s, to see if he was missing anything, different strong creams to see if they would work but nothing stuck.

I became more depressed and isolated because I was unable to operate in the world like a regular person. I would constantly have to cancel work, university, and social occasions because I was in so much pain. The only people that knew about my situation was my parents, a sister and my partner. I felt like I couldn’t communicate with friends because it was such a personal issue in an intimate area, that didn’t look like it had a chance of getting better. I was really losing hope for my body and I could see the close people and doctors around me also losing hope. I sought out for people experiencing something similar both online and in real life and didn’t find anything helpful. From the outside perspective I looked healthy, high achieving and successful but on the inside I felt alone, struggling and tired. Even though I saw a therapist during this time I struggled with my mental health and attempted suicide twice but luckily failed. I’m a generally happy person but the constant, excruciating pain, lack of support from similar peers and the feeling of hopelessness left me feeling like a dog in pain that needed to be put down. (If you’re feeling like this it is tough but you can continue to get better with persistence and seek support for this site if you therapist, family and friends aren’t enough!!).

Halfway through being 22 I went to see my colorectal surgeon again and he suggested that I do a biofeedback session where they test how my muscles are working in my rectum. Different instruments were used to test the function and pressure of my anus and we found some enlightening facts. The regular resting pressures of an adult are 49-58 units and mine was around 100. It seemed my muscles were straining even when I was relaxed.

With these new found facts I was put on a cream that had to be applied 3 times a day and would mimic the effects of having botox in my rectal muscles. If this cream worked it would mean that I would later be able to try botox. I used the cream for 3 months and it helped to decrease the size of the hemorrhoids but they didn’t completely go away and would flare up if I still didn’t follow my strict hemorrhoid management techniques. This was still an advancement because it went from excruciatingly painful to just painful. Big whoop for me! After the cream trial period we decided to try the botox. About 3 weeks after surgery I noticed amazing results! The hemorrhoids had gone down to the point of me only have smaller internal ones that stayed inside me (they would usually be popped out). Whilst on the botox I had small hemorrhoids but had not had larger flare ups, even in situations when I was very stressed.

2.5 months later when the botox had worn off we decided to try again to see if it would stick with my body and maybe stay in the muscle memory. Unfortunately, this time round the botox didn’t seem to be having an effect on me. The doctor even put more in to try and make it last longer but I was still getting flare ups and consistently had painful hemorrhoids. My doctor said he had a feeling that what I was experiencing was anismus (the failure of the normal relaxation of pelvic floor muscles during attempted defecation) which seemed odd to me because I would predominatly flare up badly (more than just having the daily hemorrhoids) when I was stressed or had been straining my body for too long, not just on the toilet.

It seems like all doom and gloom at this point but luckily a light at the end of the tunnel will soon appear. At this point I am now 23 and was experience hemorrhoid pain so badly and so often that this was my schedule and what I had to do to survive every day:

  • Go to work
  • Take codeine so I couldn’t feel pain and try to work through the druggy haze (I don’t enjoy pain killers)
  • Try to sneak out of work early because I was in severe pain by the end of the day
  • Go home and lie down
  • Eventually get up and take a bath
  • Eat and then go to sleep

During the last few months when I was living like this I was unable to stand for longer than 10 minutes without having an excruciatingly painful, thrombosed hemorrhoids. I couldn’t even do grocery shopping for myself or cook because that would take longer than 10 minutes. My physical and mental state was in a complete mess.

When I returned to my doctor to see if there was anything more I could do to help this situation he decided it was time for fresh eyes. And what a miracle that was! I started to see a new colorectal surgeon who specialises in looking from the perspective of the pelvic floor. She wanted to run some biofeedback tests again to see how my body was doing months later and to see first hand what is happening. The results came out same as before and my pressures were all still nearly double the amount that they should have been. This time though, she ran a few extra biofeedback tests and came up with a new diagnosis. This new doctor believed that I had a hypertonic pelvic floor. This means that my pelvic floor is overactive and straining most of the time. This leads to many symptoms that can usually occur in your front or back intimate parts (happens to both men and women). For me it was occurring in the back and effecting my rectum. The overstraining pelvic floor would then cause my rectum to constantly strain and therefore flare up and continue to flare up badly because nothing was stopping the strain. This made sense as to why my body would flare up worse when I was stressed or overstraining it. It also cleared up why the botox worked the first but not second time. The previous doctor who performed the botox treatment accidentally pushed the needle too far and into my pelvic floor the first time. This therefore gave relief to my pelvic floor and helped the hemorrhoids subside. The second time he only pushed it into the rectum muscles and therefore it had no relieving effect because it didn’t effect the overactive pelvic floor.

My new doctor told me that this issue was a functional issue of the body and was never going to be solved by surgery. This was a bit of a slap in the face because up until that point I had undergone about 6-7 surgeries and endured the heavily painful hemorrhoidectomy. What I needed to now to do was to retrain my muscles to relax and stay in a regular state of pressure through specialist pelvic floor physio help. I’ve been doing physio for about a month and a half now and I can say that for the first time in over a year I have not had a hemorrhoid for 1.5 months! I have had sensations here and there that it may occur but I’ve been able to properly manage it for the first time in a long time. I’m still on this journey figuring out what to do but it feels like I’m finally going in the right direction.

During this whole experience I have struggled to find a community of support for hemorrhoids so have decided to create a safe space to discuss experiences and find out more information. Everyone experiences varying degrees of hemorrhoids that are caused by different issues but this will be a place to discuss everything. There have been quite a few procedures, specialists, medicines and equipment that I have left out of my above story to make it as short as possible but I will go into the things that I have tried and what has helped in more depth on the treatment and products page.

 

 

If you’re struggling with depression or thoughts of suicide please call one of these support lines. They’re free and I know they’ve helped not only me but millions of people.