And at last I see the light.....

In March I had my last laparoscopy. The outcome was not what I wanted at all, I was hoping to be told (and it seems silly writing this) that the endometriosis had regrown. That they had removed it and that the endless pain I had been suffering with recently was going to get better. This sadly was not the case. I was told that there was no reason for the pain to be so bad, that the endometriosis had not spread and that the mirena was working well. I was devastated! Not because it hadn't gotten worse but because there was no way to stop the pain, nothing to cut away and help me. All of a sudden I was staring in to an abyss of endless pain, fatigue and a life without being able to be me. This pain and illness has stopped me from being able to live like any other women in her thirties would. I spend many days in bed unable to do anything because the pain is so intense. I am unable to drink unless I plan it weeks in advance, I end up cancelling plans with friends because I'm too tired or unwell and most of all its stopped me being able to hold down a real relationship with someone I loved. So when I was told I should be happy it hadn't gotten worse I broke....

I was then told to go to my GP and ask for a referral to the Chronic Pain Clinic as they were my last hope at being able to manage this illness. As you can imagine this did not seem like a very tempting proposal but I did it anyway. I went straight to my GP as soon as I could and got my referral, I waited patiently for my appointment to be told I wouldn't get one until August!!! I again waited desperate for something to give me some light at the end of the tunnel. When the day finally came around I took my list of questions and my hopes and went to meet my pain clinician. Here's where it gets interesting.... After a rather uncomfortable consultation filled with tears and frustration I was told that they would never be able to cure my illness (this I had already guessed) but they will try all that they can to help me manage and live a more comfortable and pain free life. I have been put forward for 3 different options of management. The first was a Tens Machine class to help me understand how I can use this to distract my mind from my pain and help me get through my days in work. They loaned me a manual Tens machine that I could adjust to suit my pain and taught me how to use it and where to place the pads, they also gave me discount on purchasing one of my own if I found it worked for me. The second option was a pain physio where they can help me build strength and exercises that can help alleviate the pain and relax the body and focus my mind. The third was to prescribe me a new drug (gabapentin) that would hopefully dull the pain signals to the brain and give me a more manageable pain level to deal with. I had 3 more hospital appointments between then and December to now attend. I won't lie it was a lot to take in and it seemed like such a long time away without a definite end game. At the time all I saw was 4 more months of pain and more and more hospital visits. I wasn't confident that the tablets would help and even though I had used a digital tens for pain relief before it only ever took the edge off the pain and on some bad flare up days it didn't help at all. However I bit my tongue and agreed to the course of treatment options.

My first appointment in September was for a training session with the Tens relief department. When I got there I was in a meeting room with 4 other patients. Each one was there for a different reason not that we had to explain our reason for being there. The Tens relief team are there to help you learn how to use a Tens for pain relief and to lend you a machine for 4 weeks to be able to "test drive" one before making the expensive purchase, if you found that it didn't work for you. As I said I had used one before so I wasn't very confident that it would do much for me. I was very surprised by what I found. The manual Tens are much more personal and you can change them around to really help your individual challenges. Since the loan I have now purchased one and because I went through the Tens programme I got a really good discount on it too. I will write a more in depth review on it later.

At my initial consultation I was started on a drug trial of Gabapentin in the hope that it would help dull the pain signals to my brain and give me more pain free days and less severe flare ups. This drug was originally and is still used for epilepsy sufferers. Again I was sceptical but I had read on some endo forums that people had some good results. Like any other severe pain sufferers I would try anything to give me back some pain free days. These tablets have a long list of side effects and its worth reading through these before starting them. You have to build up the amount of tablets over a long period of time to make sure you are comfortable with them and to see if they are having an impact. I have now been on them for 2 months and I definitely think they are working for the better. I am still in the process of getting on to the right dose for me but they have had a good impact on my pain levels so far.

I now have 2 more appointments before Christmas, one for pain physio and one for a medication review with the pharmacist. Overall the pain clinic has had a much bigger impact on my life than I first thought it would, I am glad I decided to get the referral and  have bigger hopes for the future. Its been a difficult 6 months with pain and work but I see a light at the end of the tunnel that I haven't been able to see in a long, long time.