I'm newly diagnosed, I'm 44. I've had significant pain and discomfort which appeared bladder related for at least 5 years. I had a laparoscopy about 8 yrs ago for fertility investigations which concluded unexplained infertility, then had IVF, luckily conceived first attempt (initially twins but one lost at 11 weeks). I have a beautiful 6 yr old daughter with endless energy. I've spent the last 3 years trying to get insight into/diagnosis of my medical problems which include severe IBS (I now follow a strict and very limited diet and cant eat sugar (except glucose), starch, dairy, gluten, fructose), and the bladder/abdominal pain.
I've been very very tired & trying to maintain my own business, property rentals, a holiday cottage and a family has been a struggle. I've seen bladder specialists & gastroenterologists, dietitians, had bladder investigations, abdominal scans, hydrogen breath tests, blood tests, bile salt tests. They suggested "Pelvic Pain Syndrome". I've had acupuncture at the Pain Relief Clinic (actually enjoyed this it was very helpful at lowering my anxiety due to the pain), done pain relief hypnotherapy.
As my pain was getting worse and very much linked to my monthly cycle - ie ok for a few days after my period but then building to pretty unbearable for at least half my monthly cycle & awful just before my periods, I asked my GP (the women's problems specialist) in February for a gynaecologists referral as a last resort. Not one of any of these medical practitioners EVER mentioned endometriosis as a possible issue. I saw a consultant who booked me for an investigative laparoscopy for suspected endo and I went in for my lap last Friday. Considering everything else hasn't found anything I thought I'd get an all clear & be back at work by Weds! They found and treated endometriosis and adhesions & an ovarian cyst (2x3cms), put in Mirena. I struggled post-op with a nasty reaction to opiate pain-killers and although I was still being sick at 8pm (went in at 9am) I had to come home as no ward beds. Slowly improving, hoping I'm good by the end of the week as its my daughter's 7th birthday party on Saturday!
Whilst I'm relieved to finally have a diagnosis, I'm pretty low to find out I have a long-term chronic condition and a bit worried how this is going to impact on me in the future.
Really pleased to find this support forum as well. Would just love to hear from others in a similar situation and know what I'm going through. Wondering if you get good treatment does the fatigue ease? How effective is the Mirena? What happens at the menopause (as I'm not that far off it I guess). I'm surprised to see the stats about how common it is because I just don't know anyone who has endo as far as I'm aware.