My Endo Story

My journey with endometriosis officially begins in July 2012. I came around from emergency surgery being told I had endometriosis. I was nearly 26 years old.

I say 'officially' as actually my problems first began when I was 14 years old. At 21, I had my first laporoscopy where I was told no endometriosis was found. A year later, an end stage diagnosis of IBS was given. But I still knew something wasn't right.

This is my story....

Tuesday, 16 September 2014

Dealing with Chronic Pain

My pain score today 5          My fatigue score today 5          Cycle Day 8

I have decided to write this blog as a daily dairy in the hope that it helps other women and gives an insight to the condition. I will also post my cycle day and mark my pain and fatigue score out of 10 for that day. This blog does not and is not intended as a replacement for seeking a medical professional.

 I thought I would post today about handling pain. Today is day 8. This is usually a reasonably good day. I didn't have a good night's sleep last night which is why I am feeling tired, but the ovary pain around 12-1am this morning felt like I had a red hot knitting needle being poked through my left ovary and disturbed my sleep.

I currently use a mixture of painkillers, muscle relaxants and anti-inflammatories. The pain killers I use are Co-codamol 30/500 mg and Tramadol 50mg. The muscle relaxants are buscopan and baclopen. The anti-inflammatory is usually Mefanemic Acid 500mg.

The best way of combating my endo pain on a bad day is to use an opiate painkiller with a muscle relaxant. I know these medications are not for everyone, but taking them means I can go to work, do the housework etc.

Another way I handle the pain is to have a deep warm bubble bath. I find Radox muscle soak very effective as are epsom salts.

On bad pain days I also use distraction techniques. At night, I listen to my iPod. During the day, I either knit or sew with a hot water bottle on my tummy.

Nothing truly gets rid of the pain, but you can learn how to manage it so that it does not impact your life so much. That being said, some bad pain days I find I am better going to bed and sleeping.  You have to find out what works best for you.

Monday, 15 September 2014

My 4th Laporoscopy

So, here I am waiting for my next lot of surgery. My 3rd in 2 years, and 4th in total.

Why am I going through this again? Well, my consultant wants to do a hystosalpingogram to check if my fallopian tubes are blocked. Normally this would be done as an Outpatient. Unfortunately, I can't even tolerate a smear test being done whilst conscious. This is very common for women with endometriosis- its not just uncomfortable for us, its agony.  The idea is that he will operate, check my tubes and remove any endometriosis and scar tissue he finds. This should then, in theory with the clomid, boost my chances of falling pregnant.

How have I been managing with clomid? Actually, I hate it. I really do. I'm only taking 50mg but am boarding on developing mild OHSS. My GP thinks I must just be very sensitive to my hormones being played around with. But on the plus side, I am now ovulating. Its knowing that it is working is helping me push through the pain.

I don't want more surgery but can't deny that the pain and fatigue is getting worse each month. I have been asked why I am taking clomid and couldn't I just stop taking it? Sigh. The problem is I need the clomid to ovulate, I need to ovulate to fall pregnant, I need to fall pregnant not just because I want children but because I want the pain to stop. Pregnancy will help the pain, at least for a while anyway. Yes, we could adopt- I don't particularly mind how I become a mum, I just want the pain to stop. Even if it's only for 6 months after birth. A day even- I'd rather one day pain free than what I have at the moment, which is pain all day, all night.

The start of my endo journey...

This is my endo story so far...

After being diagnosed with mild endometriosis I was told my best chance of preserving my fertility and being pain free was to opt for excision surgery. Having only just woken up from surgery and feeling as though a double decker bus had run over me was perhaps not the best time to be making an important decision, but make it I had to if I wanted children.

I had excision surgery in November 2012. This was my third laporoscopy and second in three months. Many people at the time thought I was mad and were under the impression that I should 'just go on the pill'. Sadly what they didn't realise was that surgery was the only way of saving my left fallopian tube. It wasn't a choice. I had no choice if I wanted children. During this time, I was off work for 6 months.

No Choice. That, for me, is the worse thing about endometriosis. People just do not not understand. Women with endo have to make quite serious and difficult decisions often in a very short period of time. We have to not only deal with horrendous pain on a daily basis, but also over whelming fatigue as well. It is as common as diabetes, but only half as well known. It is a silent illness. There is almost a taboo about it because it is related to the menstural cycle- people feel very awkward about talking about it.

To continue with my story. Well, after excision surgery I was really well. Very well in fact. We started to try for a family. Sadly around 6 months after surgery I started having problems again. When I went to see my consultant he recommended prostap. Prostap is an injection that lasts either 1 month or three months. It basically puts your body into a menopause state. Because you do not have periods, in theory the endo does not grow and is reabsorbed by the body. I was on prostap for 6 months, and was given HRT as added back-therapy to prevent osteoporosis. Again I was asked 'why would you do that?' by various people, because I was desperate- that's why. It never really worked for me- I still had periods. But I have heard lots of women responding well to this treatment so please do not be put off by my experience-anything is worth trying. After seeing my consultant for a final time in November 2013 we decided to try for a family again.

We continued to try and see if we could start a family. In January I asked for a second opinion about my endometriosis. I just felt that to keep taking pain killers was not an answer and that there had to be a better way. In March 2014, I was rushed to hospital with a suspected ectopic pregnancy. Fortunately, after a few scary hours in A and E it turned out it was not an ectopic pregnancy but the endometriosis was certainly making its presence felt again. My appointment for a second opinion was kindly brought forward to April 2014.

I was nervous about this appointment- I had been told that nothing else could be done for me, why would this consultant be any different? But I was wrong- he felt that trying to conceive was the best way forward for me and that more importantly for me, he believed me when I said I was considering a hysterectomy at 28 because of the pain. He ran some hormone tests, and found I was not ovulating.

I started taking clomid in June 2014, and am currently waiting for my 4th lot of surgery in October.