[ccwa]

Such a long time since IK logged in that I had to get a new id and password.

After talking to someone else experiencing ando, I thought I should detail my journey to diagnosis, if it helps someone else.

'Ando' or 'adeno' is often misdiagnosed or undiagnosed for years and the consequences can be devastating.

My journey to diagnosis was a long & difficult one. Prior to having children, I had endo and a twisted ovary on which I had surgery. Falling and staying pregnant was difficult. After my 1st child, my first period 15months after birth was extremely heavy. I then had a very irregular cycle, skipping periods, heavy, light. I had two 'real periods' the heavy ones before I fell pregnant with our 2nd child. (dec 2002) (I always said that I only had two periods between the two children) [It was only later - with gyno's help - that I was able to recognise these others as periods.]

After my2nd child, I didn't get a period for 18 months. With my first (postbreastfeeding) period with child no: 2, my left leg blew up to twice its size and my right leg also swelled. I went to see a GP who told me it was because I was overweight. The next period my back killed me and it was very heavy. (Each period from then on either had painful leg swelling - from ankle to knee or excruiating back pain or both.) We started trying for our next bub and I had two miscarriages within 4 months. I had a D&C and my next period was really light. My obby told me to take a break for 6 months and lose some weight, so I did.

After losing 30kgs, I had the most horrifically heavy and painful periods. (They would last between 10-15 days out of 28, or be very light but very painful (material growing into the uterus) or be like labour.) I was told that this was often common with someone who had lost this amount of weight (body righting itself), so I didn't worry too much. Also my sibling had just passed away from cancer & I thought that this might be affecting me. (Oct 2007).

We tried to fall pregnant for 3months. As time was against me, I went back to my regular GP (who knew we were trying) in Feb 2008. She sent me for a scan, it took 1 month to get in to get scan. After the scan, the result was diagnosed as having ando. I had to get into a gyno, my gp's words were 'so, who do you want to book the hysto with?' (needless to say, she's no longer my gp!). It took from early March to May to get into a gyno, when I did he straight away booked me in for a D&C, histology and lapocrospy. Ando was confirmed at this point. (late May 2008). I had to take a month off trying to conceive. July 2008 period was great, August's was shocking!! We went on holidays in Sept and I couldn't face another period. I was going to have hysto in Dec 2008, but when we came back I discovered I was finally pregnant!! I cannot have anything until Dec at earliest according to obby, but will have to follow up with gyno to be sure. I am now considering ablation.

So diagnosis took 6 years (may 2002 to May 2008) - 3 years & 2 months if you take it from the first 'weird' symptom - the legs blowing up. I have since found out that this is a very common symptom - often misdiagnosed. Had I had a D&C just after this, I most likely would have carried to term a lot earlier.

sorry for the long story - but that was my diagnosis experience.

If this can help one other woman (or indeed family - this became so debilating that I had to take time off work, childcare duties, housework - basically life) it will be worth baring my soul.