Hello. I am in my early 30s and have Endometriosis. Fun I know. I have suffered with intolerable periods/ovulation pain since the age of 11. Since the age of 11, I was back and forth to the GP regarding my periods however as many other women have experienced, I was offered hormonal birth control and pain relief only. I have always known that something was going wrong in my body.
I also have Ehlers Danlos Syndrome which is a connective tissue disorder. Part of the disorder causes excessive bleeding and pain. From my experience, anything pain related that I go to the GP about gets brushed off as me having ehlers danlos so it'll most likely be because of that
For years and years I suffered with both horrendous pelvic pain and of course pain in my joints from the EDS.
At 26 years of age, I decided to pay to go privately in order to have an MRI on my spine and hips as they were getting worse. During the appointment, the Orthopaedic surgeon asked how my periods were (I thought this was odd at the time). After explaining my symptoms, he also ordered a pelvic MRI.
A day after my MRI, I received a phone call from them asking me to return that day for a further MRI of my pelvis. This MRI showed a large endometrioma on my right ovary. 9cm to be exact. I was then told, it is most likely stage 4 Endometriosis.
I was then referred back to the NHS and was offered a laparoscopy. I had my lap at the age of 28 which confirmed the Endometriosis diagnosis. I also had the endometrioma removed. I had endo mainly on my ovaries and uterus. I was also given the Mirena coil.
Within a week after having the laparoscopy, I felt an intense, ongoing, burning pain in my lower right hand side of my stomach. This pain was so bad that I ended up back in A&E. After an ultrasound, I was told that I had a hematoma and that this would resolve itself.
I am now almost two years post op and every single day I have the burning stabbing pain in my lower right hand stomach at intermittent points in the day. I am also having random bleeds out with my cycle.
I have again been back and forth to the GP and have had an ultrasound that doesn't show anything in my pelvic region that would explain the pain. I am miserable. The scan did show that my left ovary is attached to my uterus and have now been given medication to put me into a chemical menopause.
What could the pain be? Could it be endo returning, could it be my bowel? I have no idea. This is making me absolutely miserable and I have no answers. The pain started a week after my laparoscopy and hasn't stopped since. I just want to feel better.
"This is making me absolutely miserable and I have no answers"
About: Royal Infirmary of Edinburgh at Little France / Gynaecology Royal Infirmary of Edinburgh at Little France Gynaecology EH16 4SA
Posted by Clarebear30 (as ),
Do you have a similar story to tell?
Tell your story & make a difference
››