Living With Endometriosis

The Beginning ………

Instead of feeling sorry for myself I have made the choice to raise awareness and support for Endometriosis.

This is an overview of my story so far………..

In my early teens I always suffered with heavy and painful periods and in the early days I believed that this was normal. I don’t know what was worse the pain or the bleeding.

At 14years old my mum took me to see the GP where he prescribed me pain killers which worked for a while but after a few months they weren’t making a difference and the pain was worse. I was constantly going back to GP where he would prescribe me different pain relief and also put me on the pill at 15yrs old, however, no matter what was tried each month I would suffer severe pain in my abdomen, side and right arm. Each month I would be in tears especially the first 2 days as they were the worse.

At 18 yrs old I was told by my GP at this point to try having a child as sometimes this helps. I couldn’t believe what I was hearing. I was 18yrs old, had my whole life ahead of me, the last thing on my mind was to have a child. At this point there was no point going back to him as I wasn’t being taken seriously; so I carried on with the pill and painkillers and each month I would just try and cope with it.

In my 20’s the pain was getting worse and lasting longer. 2 days before each cycle I was extremely tired no matter how much sleep I would have, pain in my back and abdomen – mainly in my right hand side. As soon as my period started it would get worse, it felt like someone was twisting my insides, and had a constant stich in my side, every time I moved it hurt. The pain in my arm was a constant ache which started in my neck all the way down.

Every month I would try to do what I could to get through the day – painkillers, anti-inflammatory tablets, hot water bottle and I lived in the bath. In my mid-twenties I had moved away from my home town and felt that the pain was so bad that I went to see my GP. It was the same old routine, painkillers, change in the pill I was using, but again nothing changed. My hot water bottle became my best friend, and the only place I found some ease was in a hot bath.

After 2 years of constant battling the GP finally referred me to the hospital where I had a laparoscopy. I was told that my womb was tilted and further over to the right than normal with my right ovary tucked behind my womb. This made sense why the pain was mainly in my right hand side. During this surgery they fitted me with the marina coil and prescribed me with stronger pain killers.

The coil and painkillers worked for a while, the pain was still there each month but it was manageable in which I was able to cope. However, as the months went by the pain started to increase, I was suffering the same pain as well as suffering with bad constipation especially during my cycle. It was horrible. I was still seeing my GP and we would discuss how I was feeling yet it still took another 6 months before they decided to try something else. This time I was fitted with the implant and the coil for a short while which with the 2 methods I was pain free which was great. Unfortunately though, I had to have the coil removed, however the implant worked well until I had it removed 3 years later. Where I just went back onto the pill where it all started again, however as I had moved I had got to the point where I gave up and accepted this is how it’s going to be. I was tired of fighting so I just managed the best I could.

In 2010 my partner and I decided to try for a child, so I stopped taking the pill. With this the pain was worse than ever and lasting longer than normal, I was physically ill and having more bad days than good days – constant pain, fatigue, aching, constipation, vomiting;  I felt like I had no life.

In November 2010 I went to see my GP as I had been vomiting for 3 days. I was diagnosed and treated for a stomach bug, yet this did not stop. It was getting to the point where each day I would eat something and be sick. The only foods I was managing was cereal, soup and toast.

I went back to my GP and told her what I was going through, where I actually broke down and everything came out, I couldn’t take anymore. We talked through everything and at this point I was referred for a scan.

My first scan was in January 2011 where they found a small cyst on my right ovary about 3cm’s and 2 small cysts on my left ovary. The GP explained that it is normal during the menstrual cycle for cysts to appear then disappear so I was scheduled for another scan. I had a scan in Feb and March where at this point the cyst on my right ovary grew to 5cms, in which with this and the fact I was struggling to get pregnant I was referred to the hospital.

I was taking painkillers and anti-inflammatory on a daily basis along with anti-sickness tablets and laxatives as each day I would not know how I would be. At this point, what I was going through was having a huge impact on my life including work. I was in constant pain; my back was burnt due to the constant use of my hot water bottle. I didn’t take much time off work as I don’t like being sick and keeping busy was helping to some degree. My partner was excellent and supportive all the way through.

Every month I was attending A&E as the pain would get too much where I was physically in tears pacing the floor as no matter what I did or tried, nothing worked. I had my appointment come through for the end of June but it still seemed so far away.

At the end of May the pain got so much that I had to attend A&E again, but this time my partner wasn’t taking “no” for an answer. I was prescribed morphine and admitted as an emergency. Finally, I felt I was being taken seriously.

After 2 days in the hospital and several tests and debates with the consultant they decided to carry out another laparoscopy. When I woke up I was in agony. They found that the cyst on my right ovary was 9cms and entwined into my bowel in which I had to have major surgery to remove the cyst and my right ovary. It was now when I was finally diagnosed with severe endometriosis and informed that the chances of me conceiving a child was very low. At this point I didn’t take it all in, I was all over the place, relived that I finally had a diagnosis, but heartbroken at the fact of the chances of me having my own child had been significantly reduced.

Over the next 6 months I was recovering from the surgery, dealing with the emotional element of it all and temporarily going through menopause to allow my body to recover.

In September 2011 we had our first appointment at the IVF clinic where I have had to come off the treatment for tests to be done. I have a 30% chance of the treatment working but yet in 2012 Endo strikes back with a vengeance, which has stopped me from moving forward with IVF.

In March 2012, I was admitted into the hospital due to significant pain, I found I had a 5cm cysts on my left pelvic area, I just couldn’t believe it, not again I thought. My consultant at that time was very good and knew IVF was my ultimate goal in which she talked through all my options. I went with pain management option and contraceptive pill to manage my periods. This method worked ok but in June 2012 I ended up in hospital yet again with a 2^nd cyst diagnosed behind my uterus; the consultant recommended urgent surgery and sent over the referral to my current consultant.

In August 2012 IVF was put on hold due to what had been diagnosed and had several scans and an MRI.

In October 2012 I was referred to a specialist consultant who explained that I have 3 out 4 types of endometriosis – endo of the stomach lining, ovarian endo and nodule endo. I had 3 endo cysts, 6cm on my left pelvic wall, 8.6cm behind my uterus and 6cm on my right ovary, I also have endo lesions all over my pelvic area, bowel and bladder, with my uterus, bowel and bladder stuck together. At this point I broke down; I couldn’t take it all in, my chances of having a child was slipping away. The surgeon explained 3 surgery options and sent me away to think about what I wanted to do.

In January 2013 I have chosen to go with removing the cyst on my right ovary and clearing up around that area and trying IVF as this will be my only chance. If IVF does not work then I will have surgery to remove the rest of the endometriosis which includes re-sectioning the bowel due to how deep endo has infiltrated the bowel.

Surgery is scheduled for July 15th, 2013 which seems so far away but at least I know what I am dealing with. But for now, I am right back to square 1, in pain constantly, not knowing whether it will be a good or bad day.

I have had lots of time to reflect on what I have experienced and gone through and I no longer blame anyone, however, I do wonder if I had been taken seriously back in my teens, would this be where I am today? All I want is my life back where I can enjoy life with my partner, family and friends and not have to let people down at short notice. Each day I take it as it comes and do my best to work through it all and maybe one day my life will be different.

I hope by sharing my experience that people don’t give up and know that they are not alone in all this.

By Andrea Hughf, Birmingham, United Kingdom