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....

Monday, 15 September 2014

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.

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