I have been quite lazy writing in my blog as of late, I was basically waiting for my all important appointment with my endometriosis specialist which was yesterday! I'm feeling very run down at the moment, not sure if i've caught something, but I havent quite been feeling myself the past few days and today I feel quite crap! Almost tempted to go to bed very early! Unlike me! My body is clearly over everything!
So the specialist appointment went quite well, I was more at ease this time because I knew exactly what I was in for! Now the specialist believes quite strongly that I have Ureteral Endometriosis.
I had not looked into this form of endometriosis before! Obviously I have spoken about the "normal" spots for endometriosis, but this then through me into new types of research! So we do basically have an answer for the kidney pain! This is what i want! Answers! We don't believe that I will need a bowel resection during my next procedure, but my colorectal surgeon has been now booked in to be with all the specialists and doctors during my surgery just in case!
So after being showen photos during my appointment yesterday I did still walk out a bit confused as to what Ureteral endometriosis is??
So I've done some research and this is what I've found!
Ureteral endometriosis is a rare form of endometriosis.
Diagnosis is an important factor in ureteral endometriosis. This form of endometriosis is an additional complication of endometriosis where an obstruction in the ureter can lead to renal failure when undetected. Its asymptomatic nature makes it very dangerous and for any woman complaining of pelvic pain, this diagnosis should not be ruled out without thorough and complete tests.
Ureteral endometriosis occurs because of a physical obstruction. This obstruction can be an endometriotic implant. Its ‘silent’ nature means that it often goes undiagnosed and by the time a definite diagnosis is made, the condition has progressed to where the affected kidney needs to be removed. Usually, the obstruction appears on distal segment of the left ureter which in turn compresses the female reproductive organs.Ureteral endometriosis has two variants – intrinsic and extrinsic. Eighty percent of the cases tend to be intrinsic endometriosis. A combined version of intrinsic and extrinsic ureteral endometriosis can occur as well. Scans help determine the obstruction but a physical examination does not usually yield a positive result. Intravenous pyelogram (IVP) is the ideal test for intrinsic ureteral endometriosis. It can even provide information on the degree of renal damage and extent of obstruction in the ureter. A CT scan is used for the diagnosis for intrinsic ureteral endometriosis.
Symptoms The degree of symptoms will depend on where the obstruction is and how large the obstruction is.
Pain in the flanks and back
Pain during periods
Pain while having sex
Perpetual discomfort in the pelvic region
Hematuria or blood in urine
Excessive bleeding especially during menstruation
Treatment: Medicines along with surgery are usually the recommended courses of treatment. The degree of each course depends on the stage of the condition when it is diagnosed.
The aim is to retain as much kidney function as possible. If the damage of the growth is not extensive then a stenotic ureter is usually sufficient. The growth is removed with surgery and a stent is placed. The stent is removed usually after 3-4 weeks of recovery. Typically the growth is also sent for biopsy.The most extensive form of surgery in ureteral endometriosis includes a complete hysterectomy along with a nephrectomy or a kidney removal. Hormone therapy is sometimes used if the condition is identified in the early stages.
Nowadays there are even minimally invasive procedures like uretereostomy, laparoscopic ureterolysis and reimplantation that are used in the treatment for ureteral endometriosis.
So yes everyone, on top of everything else, the doctor is 99% sure that I have a rare form of endometriosis! We believe that if this is somehow blocking some tubes, this now may be pushing on the bowel! Hence the bowel symptoms!
So the next step is surgery, so I've requested to book a date and I'm awaiting quotes and a date for the procedure.. He only does every second Monday at bowral private hospital and every first at Pots Point.. So we know surgery will be a monday.. just to wait for the date..