18 months ago we made the decision to try for baby. I'd been on the pill for around ten years on and off and as a nurse i knew that it may take some time for my body to settle down and adjust to the differnce in hormone levels. I had my first period off the pill in june on time and without any issues and so lulled myself into a false sense of security that things were going to run smoothly.....boy was I wrong!!!!!
The next 8 months my cycle was all over the place ranging anywhere from 28 to 49 days. My periods themselves were unusually light but I had this strange feeling of fullness and this really heavy feeling in my lower abdomen as if I should be gushing. Again I told myself it was my body just adjusting to life without the pill but made an appointment with the GP for some reassurance. He did some bloods to rule out PCOS which came back fine and agreed with me that things would settle down in time.
Over the next few months my cycle did seem to fall into a pattern but my periods seemed light and would last longer and I still had this feeling of fullness. Then in September I convinced myself I was pregnant. I was so tired and emotional and I had some spotting a week before I was due on which I thought was implantation bleeding. But of course the pregnancy tests were negative. A week later I was still spotting and the tests still negative and then came the agony!!!! Pain like I had never felt before as if my hips had been clamped in a vice and my pelvis was being crushed. I should of gone to A&E but I thought they would just tell me I was miscarrying and send me home because there was nothing they could do. After 3 days of agony I went to see my GP who said it was unlikely and sent me for an Ultra sound scan.
The scan showed a small cyst on my left ovary suggestive of endometriosis. I was relieved to find out that there was a reason as to why I hadn't fallen pregnant and was reassured by my GP that if it was Endo it was only in its early stages and there was nothing to worry about. I was referred to gynae and put on the waiting list for a lap. Over the next few months my periods became more and more painful and I wasn't able to function despite taking regular codeine, naproxen and paracetamol.
Then in January I had my lap and my life was turned upside down!!!!!
I remember waking up in the anaesthetic room and asking the nurse what had happened. She said I had endo that I needed IVF and an MRI scan but she couldn't tell me any more. I just burst into tears. I was taken back to the ward where the consultant came to see me. Straight away he said he was in complete shock by what he had found as he never expected it to be that bad. He kept reassuring me that it wasn't cancer and said he wouldn't go into too much detail as I wouldn't remember it with just coming out of theatre,but basically my bowel was all stuck together and then stuck to my uterus and bladder. At some point I would need major surgery involving gynae, gastro and urology surgeons to remove the endo which could result in a bowel resection and colostomy and my only chances for having a baby were through IVF. The only question was what to do first.
I spent the next 4 weeks with this little snippet of information in complete shock. I knew there was a chance that there maybe an issue with my fertility but I never imagined it could be this bad. I went to see the consultant and he confirmed that I had stage 4 endo and that my tubes were completely blocked so advised to start IVF straight away. But then came the next challenge.....funding! NHS won't fund it as my partner has a little girl from a previous relationship. Gutted isn't the word!!!!!!!
Thanks to our wonderful family we have the money to fund one go ourselves and have our first appointment at the clinic next month but I am absolutely petrified! If this doesn't work first time then basically I'm screwed. We don't have the money to try again. We can make an appeal for NHS funding but time isn't on my side. Since my lap my symptoms have improved slightly but with every month that passes the chances of the endo getting worse increase. my consultant has already said that harvesting eggs may prove difficult because of my condition and that if things did get worse I would have to have surgery sooner rather than later and there is a risk that I could end up losing my overlies all together. I just don't know how to think or feel at the moment. I turn 30 in a few weeks and get married next year. It should be the happiest time of my life but I feel like my life's on hold and so full of uncertainty. My family and friends have been so supportive especially my partner but they don't really understand the extent of what I'm going through both physically and emotionally
Do you always have to be on treatment for endo?
Stage 4....IVF help! :(
Stage 4 Endometriosis and Hydrosalpinx 
Stage 4 and running out of options
