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.