Hi girls,
This is my story...
My periods started when I was 13, I remember feeling excited about it, about becoming a woman. My periods started as I would describe as normal for the first five years or so. Then when I was 18 I remember having an extremely painful period and my body had expelled a large lump of thick bloodied tissue, this worried me and I described this to my Dr and he said I'd had a miscarriage (I'd only had sex twice and the last time before that was 2 months before the period, having had a period in between). Shocked and upset I dismissed it. My periods gradually became more and more painful. Strangely, unlike most people with this complication my periods became lighter, but with lumps and dark blood and bloodied tissue. At age 20 they had become really debilitating. I'd been on and off the pill but found being on the pill made them a little less painful. Time and time again I went to the Dr explaining the pain and abnormal tissue I was sometimes expelling - often they suspected I'd had a miscarriage - even though I was on the pill or hadn't had sex. Several doctors over the years have said over and over again 'Stay on the pill if it helps with the pain, have a cup of tea, use a hot water bottle, take a paracetamol and do some light exercise'. Basically just saying deal with it and stop over reacting.
I would say in 7 years I went to several Dr's up to 35 times desperate for someone to help me. The best help I got was mefanamic acid, but after a few months not even that was working anymore!
Last year, after 6 years of pain, age 23, something amazing happened...a Dr listened to me! I was displaying abnormal signs - extremely painful periods, frequently needing to wee, severe pain when emptying my bowel during my period and random pains during the month. She sent me for an ultrasound but nothing showed and again I was told nothing was wrong and I just got really bad period pain - deal with it! (anyone else had an ultrasound to attempt to diagnose endo??) ...Clearly doesn't work!
Earlier this year I had killer pain and spent yet another night curled up moaning. It was too much to bear. Not only I was having these killer cramps, but sex with my fiancee had become almost unbearable, it had come to a point where I was vomiting afterwards. I thought 'this isn't normal and needs to be sorted out'. I went to the Dr the next day and pleaded to see a gynaecologist. Finally I had a referral!
I explained my symptoms to the gynaecologist and he immediately said 'you are showing signs of endometriosis and I need to book you in for a laparoscopy'. 7 years I waited! 7 years to see a specialist who finally took some action! While I felt relieved someone was finally taking some notice, a lot of anxiety followed. What on earth is this complication? What if it is really bad? How will they treat it? Will I ever be pain free? And mostly, will I ever have children?
Last week I went in for my laparoscopy. They found I had moderate endometriosis - I was able to see photos they had taken inside my tummy. One of my ovaries had adhered to my pelvic wall, my gynaecologist used a laser to treat the endometriosis and freed my ovary. Has any one else had laser treatment? If so, was it effective? I was also fitted with a Mirena coil. Has anyone else been fitted with a Mirena coil? And if so, how have you found it? Apparently it helps prevent the endo from growing back. I am anxious about the fact I have no control over my periods now, as before I was on the pill and only chose to have a period every three months, now I have no control - pain can strike at any time!
They day after my surgery was terrible. I was in absolute agony about 30 hours after the op, for 4 hours or more, I was on my own and considered phoning an ambulance because I felt like I was going to pass out having pain I could only describe as 'contractions' - intense pain in my tummy and down my legs and in my back (this had never happened before) for 2-3 mins, relief for 5 mins or so, then intense pain again. It was the worst pain I have ever been in. I would recommend anyone to get as much pain relief as possible after a laparoscopy. Slowly the pain eased and the next day I was given a prescription for stronger pain killers.
One week on and I am feeling ok - the pain for the first 4 days was pretty intense - has anyone else had such pain after a laparoscopy?
The gynaecologist said my chances of having children are good - he flushed out my fallopian tubes and they were all clear. This is a huge relief to me. Pain and suffering is one thing, but not having the chance to have children would be incredibly heartbreaking for me. All I have ever wanted is to have children, and really hope one day this will be a reality! I don't want my condition to push my fiancee to have them too early, but at the same time I don't want to risk it and leave it too late.
I hope now my pain can be managed and with any luck I may be lucky enough to not get any periods using the coil. I hope so!
I know how painful and debilitating this disease is - it has consumed my headspace for so long now. Hopefully now things will calm down and with the support and treatment I might start to feel a whole lot better!
It's great to get it out there, and read about other girls' experiences!
Comments welcome!
Pregnancy endometriosis positive stories
Hello! I would love to hear people’s advise and stories on trying to conceive with endo. 
Looking for advice and to hear your story.. Hopefully will put my mind at rest!! Xx
My discontinued miracle pill
Hi lady here's my story please dont hesitate to ask me anything xx
