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My struggle with endometriosis

Apr 17, 2013 - 0 comments



















Ovarian Cysts


bilateral endometrioma

A brief background on my first stint with endometriosis.

My first bout with endometriosis was rather asymptomatic. It was diagnosed during a routine pelvic scan as part of my annuals. My immediate reaction was sheer panic since i had never had heard about this disease/term before and immediate thoughts of never being able to conceive also crossed my mind. The initial diagnosis was a 5 cm cyst on my left ovary, but the u/s did not provide any insight on the nature of the cyst.

Within a month, i was booked for a laparoscopy to determine the nature of the cyst and have it removed. The entire procedure was done within 1 hour under a outpatient procedure. The pathology report indicated a chocolate cyst (endometrioma) but no malignancies (although at that time, i did not even know that cysts can become cancerous). The ride back home after the procedure was real bad, followed by an evening filled with nausea, gas and some pain. Bowel movements were an issue for the first week (and you will definitely need some medication for that) but the other after effects go away after the first couple of days.

The next 6 years were relatively smooth with some pain during my periods but manageable.

Fast forward to Jan 2012, i started having really bad cramps during my periods (which was also becoming heavier) with the pain being unbearable and resulting in nausea and vomiting. Passing urine and bowel movements were also causing pain and this prompted us (i and my spouse) to see a gyn to diagnose the issue. The gyn basically looked at the past history and inferred that this could be a result of my endometriosis re-surfacing and she prescribed some medication for the pain and also advised an MRI scan. The MRI diagnosis was bilateral endometriomas of around 5 cm on each cyst, but she decided to monitor the growth rather than having it removed. A few months later, she advised us to see a reproductive endocrinologist to effectively manage the cysts while also ensuring my fertility is not compromised.

This is where matters went wrong. The reproductive endocrinologist was solely focused on carrying out various tests to check on the fertility aspects that she went on to ignore the subsequent radiology reports which even to the layman's eye showed the cyst growing. An MRI report from Dec '12 had my right ovarian cyst now measuring 8.3 cm but she ignored the report again.

By Feb '13, the right cyst had started protruding from my abdomen and could actually be felt and seen. At the next consultation, we raised this concern, only to be told that she does not handle issues/ surgeries related to large cysts and she referred us to a pelvic surgeon with gyn-onc specialization for further treatment. The mention of oncology filled us with fear and the doctor did nothing to pacify us other than from telling us that she is releasing us from her care. She signed off all our papers and released us from her clinic. Add to that, the doctor she referred me to was not even covered under my insurance plan

At this stage, we decided to take matters in our own hand and we scheduled appointments with two doctors, both leading gyn surgeons with oncology specialization. Both of them were pretty taken back by the size of the cysts (especially the right one) and were alarmed that my earlier physicians let it grown to that point. One of the doctors actually took the time to go through the actual MRI images with explaining each screen. Neither of them could rule out cancer completely at this point since imaging studies cannot provide that diagnosis with absolute accuracy. Further the size of my cysts (and the possibility that they were stuck to each other and all the other adhesion's) also indicated an open surgery (laparotomy).

We decided to go with the doctor/ hospital closest to us (central NJ) and the procedure was completed on the 9th of this month. The laparotomy took around 2.5 hours with another 1.5 hours in the recovery room before i was shifted to my ward.

The pathology report came in two days later was told that were was no cancer but a very severe case of endometriosis (even the doctor seemed a bit surprised by what he saw). Got home after three days of hospital stay. Needed medication for pain and bowel movement for almost a week. Had the first post op follow up today and no complications so far...

Key learning's:

-  Don't let the internet scare you. Not every cyst is endometriosis and not every symptom is indicative of cancer. My spouse and I decided to lay off the internet in weeks leading to the surgery and this kept us in positive spirits

-  Listen to yourself, if you don't think you are getting the right treatment, ask for a change (this definitely helped me)

-  Nothing wrong in going a male doctor for gyn issues. My surgery was done by a very lovely male doctor, who is in his late 50's and he made me feel more comfortable than all the lady doctor's i have seen

-  Getting referred to a gyn-oncologist is the right course even for benign cysts. Ask for them, in case you are being referred for a surgery for removal of the cyst

-  Finally, find the right doctor that is more focused on you. If you plan to conceive with endometriosis or any other ailment, ensure that the doctor has your best interests in mind.

P.S: have used "we" in a lot of places since both i and my husband went through this together.

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