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Janisha's Story

Janisha's Story - Dec, 2012
I want to share my experience with this disease for a few other reasons too. I am sure physical manifestations of endometriosis as it affected me will resonate with many. However my endometriosis journey to date has also been a huge learning experience. And I want to share this at knowledge with the hope that it will help at least…

It is a tribute to Dr. Seckin’s expert skill and care that my story and that of many of his patients share a common thread of hope and positivity. It is thanks to him that I understand the disease that afflicted me for most of my life and also thanks to him that I feel for the first time in a long time that I control my life and the disease, and not the other way around.

 

I want to share my experience with this disease for a few other reasons too. I am sure physical manifestations of endometriosis as it affected me will resonate with many. However my endometriosis journey to date has also been a huge learning experience.  And I want to share this at knowledge with the hope that it will help at least one person but hopefully more, towards getting get the help they need.

 

I grew up in Sri Lanka where I was first diagnosed with endometriosis.  A caveat before I proceed any further.  My narrative is not intended to denigrate any of the fine gentlemen who have treated me in the past. I believe that their treatment was based on what they believed to be the best treatment available at the time.

 

Unlike many who had never heard the word “endometriosis” my first introduction was even prior to my first period.  My aunt (uncle’s wife) was diagnosed with the disease when I was a child, more than 30 years ago. Following surgery she had back-to-back pregnancies. The two babies she had, my cousins, were more or less “miracle babies” given the heartache that preceded their arrival due to her inability to conceive. Endometriosis was referred to in awe within our family and as a result a familiar term to my young ears as I grew up.

 

By the age of eleven I was complaining of debilitating pain accompanied with a seven to ten day heavy flow with my period. Though there was no family history, in that my mother never experienced more than three days with her period nor any recollection by any other relative of a similar experience, my parents believed it would be prudent to consult a gynecologist to make sure nothing was wrong. However given the familiarity with endometriosis, the possibility lingered in our minds.

 

We consulted a kindly specialist in gynecological diseases trained in the UK who was known to the family. After a rectal exam his diagnosis was as follows. I was too young for endometriosis. Nonetheless my uterus was retroverted but this was nothing to be concerned about.  I came to know many many years later that a person with a retrograde uterus is more prone to this disease, but unfortunately the knowledge of the disease was not as advanced as today, for that bit of information to have helped me then.

 

I was prescribed a course of norethisterone (a synthetic hormone) for a period of three to six months to relieve my symptoms. Interestingly this drug would be my constant companion until I met Dr.Seckin nearly 18 years later!  As expected the symptoms eased for a few months only to return and I was on and off this drug continued to use it for  intermittently for the next few years with occasional visits to this doctor but with no new outcome other than gradually becoming anemic due to the heavy bleeding for which I was then prescribed iron supplements.

 

I consider the above events as the first chapter of my endometriosis journey and given what we now know, there is so much that we can do differently if we are presented with the same circumstances to day.

 

FIRST if a girl’s period is accompanied by severe pain, vomiting and headaches together with a heavy flow or any other unusual symptom that is a red flag that something is up. Whilst my parents did not advice me to suck it up and brave grin and bear it and were forward thinking enough that they sought help, mostly because we had a reference point with my aunt’s prior experience, I have heard countless stories where children were asked to bear it up and told that the pain was normal. Today we know that pain is not normal and that it is IMPERATIVE that parents seek medical help at the first hint of trouble. 

 

NEXT, with my involvement with the Endometriosis Foundation of America and after listening to many eminent physicians and surgeons beleaguer place emphasize the point; I now know that treating the symptoms as I was treated back then (i.e. the pain, headache, etc.) with pain killers and hormones only does just that alleviates those symptoms and no more. It does not address the underlying cause of the pain and will only serve to mask it thereby giving the disease more time to advance. Therefore it is important that parents and caregivers not only take that first step of seeking help, but also are proactive in being informed about the many possible conditions that may cause such pain.  Knowing as we know today that endometriosis is a common disease; parents should at least request that the possibility of endometriosis be investigated, if the doctor does not already suspect it.

 

 

Diagnosis finally!

 

The pain did not subside but I learned to live with it.  Then when I was in my third year at University (College), I started experiencing migraine type headaches and vomiting.  Since they did not necessarily coincide, I did not associate this new occurrence with my period but was advised by my general physician that it could be related to a hormone imbalance. Given the fact that my pain was more intense than before, we decided to consult a different doctor who was now treating my aunt for endometriosis that had recurred.

 

We were now in the late 90’s and in the era of ultra sound diagnostics. A pelvic ultra sound revealed that I had adenomyosis and was told that I did not have endometriosis. I was once more prescribed the same synthetic hormone that was prescribed to me before but at a higher dose so as to completely stop my period for 3 months.  I had no side effects and my discomfort was much less for a few months after I stopped the medicine. My doctor used a very helpful analogy to explain the disease to me saying that these abnormal cells were like weeds that would grow from time to time and that his job was to keep the garden clean. The combination of ultra sound diagnostics where we knew what the disease was and the fact that the medicine reduced my discomfort gave me some degree of comfort relief but something else that he kept telling me bothered me.

 

With the best of intentions and my wellbeing at heart no doubt, he told me that the only way that I could be cured was through a pregnancy and that the more I delayed pregnancy the more likely I could have fertility issues. He lamented the fact that many young people delayed pregnancies and that they only sought medical help when it was too late.  He kept encouraging me to get married! Once more he used an analogy to prove his point by saying that that trying to conceive was like an exam, where we wouldn’t know the outcome unless we took it (trying to conceive) and that we wouldn’t know the results unless we took the exam.  To me the idea of marriage and pregnancy all in the name of curing a disease just was not acceptable. Nonetheless a couple of years later I did get married and on my first doctors visit thereafter an ultrasound scan led him to suspect the presence of endometriosis as well.  He decided to perform laparoscopic surgery (my first) to further investigate. After the surgery which took about 20 minutes, I was very relieved to be told that I had very mild endometriosis, and was given a diagram which showed the few “endometriosis patches” that were observed. He said that given the level of pain that I had, that he had feared a much more advanced stage of the disease.

 

In the meantime I had just come off nine months of the aforementioned drug – the longer duration - to mimic a pregnancy. The idea was that less bleeding in the womb would give time for the adhesions caused by the adynomyosis to heal.  I was advised though, that I should discontinue this medicine and seek new advice from my new doctor in the US.

 

It is useful to pause and ponder on the course of action we would follow now based on the advancements in this field as opposed to what my doctor followed ten years ago? As with the first phase of my journey what do we know now and would do differently than was done ten years ago?   We now know that catching this disease early together with excision surgery results in significant positive results in terms of relieving the discomfort and preserving the patient’s fertility. Unfortunately whilst my disease was diagnosed early, it was not “cleaned up” and resulted in a missed opportunity to treat it at an initial stage.

 

 

The silent phase

I moved to the US a month after the surgery and immediately consulted a Gynecologist, presented him with medical history and reports and asked him what my next course of action should be. He asked me how I had been treated previously and when I told him that I had been on a drug that helped me he said that he had no objection to me continuing the same medicine if I had no significant side effects.  With no side effects and not having to deal with the pain and discomfort, I continued to take it for the next fours years with his blessings. When questioned about my endometriosis he said that it was probably contained because the medicine was working well. After four years I reluctantly decided stop it as I felt it was not wise to be on any medication for that length of time. No sooner did I stop it the heavy period and pain returned together with another complication, which may or may not have been related to its use. Thankfully though the other condition subsided but the doctor suggested that we do a laparoscopy to take a look. He had indicated no sense of urgency and suggested the procedure more as a routine examination. He suggested the procedure more in the sense of a routine exam, as I had just come off this drug It did not make sense to me though, just to do a surgery to take a look It however did not make sense to me just to go through surgery just to take a look, when he thought that every thing was fine.

 

This is when I truly believe, I received divine intervention! Not long after, a dear friend, to whom I am eternally grateful, suggested that I get a second opinion about the need for surgery and recommended her doctor who had recently performed her endometriosis surgery. Dr. Seckin. The I did not get to meet him at my first appointment him I didn’t, as he had step out for an emergency surgery. I nearly didn’t make the second appointment, as I was not comfortable taking time off from work as often as I did for my various doctors’ visits. Yet Nevertheless I made it. We did not talk for more than 5 minutes. Even before he did his scan he was sure that I had endometriosis, though I kept telling him that I did not! He let me know that we were heading towards surgery but he ordered more scans. Why though was I completely comfortable with what he was saying and not having my usual doubts?  As much as he was convinced about my condition, here was a doctor who did not just act on a hunch but did a thorough investigation. He was getting a second opinion himself.  I was convinced at during that first visit that I was in good hands.

 

When I questioned him about treatment, fertility etc., the answer I received was brief. Let’s talk after the surgery. As with many of his patients, the surgery that was scheduled for 40 minutes exceeded three hours. I am sure he has seen many cases much more serious than mine I, but he did tell me that he was surprised by the extent of the disease and that he made a concerted effort to get every last bit of it. I was surprised too. How could mild endometriosis in 2001 progress to stage 4 endometriosis by 2005 with no indication at all? For all intents and purposes it was supposed to have been taken care of by the medicine that I took for six years. The laparoscopic surgery that followed proved otherwise.

 

The surgery was performed in December 2005. As promised, Dr. Seckin and I talked after the surgery but I didn’t get the all clear that I expected.  Given the extent of my endometriosis he felt that my chances of conceiving were, to quote him “zero”. Two or three months after the surgery I was referred to fertility doctor whom after one glance at the pictures from my surgery suggested that I start treatment right away. As always, I sought a second opinion. This time the news was slightly better but I was told that my tubes were most likely damaged and that even if I did conceive, there was a very high chance of an ectopic pregnancy. My husband and I resigned ourselves to the inevitability of fertility treatment and scheduled our initial tests for the coming weeks. We were now in May, five months after the surgery. Thankfully though I never made it to those tests. One month later I was pregnant.  I will never forget Dr. Seckin’s joy when a scan confirmed what we all thought was impossible. He beamed! It was not an ectopic pregnancy as was predicted and in the span of five short months since surgery, we had progressed from zero to being pregnant.

 

The pain and discomfort disappeared post pregnancy. Nonetheless being aware that this was a disease that is unlikely to go away, I returned to Dr. Seckin every six months to be examined in case of a recurrence. 2 ½ years later I noticed that the pain was returning only to be diagnosed with a fibroid.  Three months after removing the fibroid I was pregnant again. Today, eighteen months after my second baby was born, I am pain free.  I still find it hard to get used to the idea of not planning my life, my wardrobe and my work around those “bad and painful days”, especially since that was my routine for at least fifteen years. Having said that, I am still vigilant of any hint of pain or discomfort, which could signal the return of endometriosis.

 

What did my journey with Dr. Seckin teach me? 

 

First, that this is a disease that can manifest itself in many ways (primarily with pain) but it is also a possibility that it could spread deeply and silently, with no pain. The four years preceding the surgery were largely pain free, although but the medicine that I was taking was not containing the disease.

 

Secondly but more importantly I learnt that there is always hope. Find a doctor who is not only committed to you but also committed to fighting the disease. Someone who gives you an acceptable explanation about why you are suffering the way you do and how he/she plans to help you. Thirty years ago my aunt found such a doctor in Sri Lanka and six years ago I did too in New York.

 

In During the past six years through my association with Dr. Seckin, I have met many women treated by him with similar stories and similar results. My story is mostly the norm with his patients, than the exception.  Increasingly we see other surgeons who are using laparoscopic surgery to treat endometriosis, reporting similar results. I was fortunate enough to find a doctor whose passion was fighting this disease.  The fact that endometriosis causes so much pain and disruption to a woman’s life troubled him. The fact that it is poorly diagnosed frustrated him. So did the fact that many with the disease were treated for their symptoms rather than the disease.  The knowledge that laparoscopic surgery resulted in better outcomes for his patients encouraged him to spread the word, which resulted in his establishment of towards which he founded the Endometriosis Foundation of America.  As we got the Foundation off the ground a few years ago, the one phrase that he most often repeated was “this suffering is unacceptable. We must do something about it”.

 

And so he did and continues to do.

 

He has encouraged mobilized his patients to share their experiences; with the faith that the message of hope and help is spread far and wide. In the hope that the message gets through that there is help and hope. He has initiated a public conversation that is now reaching far and wide. This has lead towards a new public conversation on this topic.    He is collaborating with other organizations dedicated to the same cause with the intention of sharing resources and providing a common message. He has been diligent in seeking funding for research and to push the frontiers of our collective knowledge of this disease. More importantly through the EFA’s annual medical conference and other initiatives he has provided a common forum to those in the forefront, in research, surgery and treatment to share, exchange and debate all the new information that is brought to the table at these meetings. By facilitating such vibrant discourse he has paved the way for the emerging generation of medical practitioners to witness the depth of the knowledge and skill required in treating the disease.  Such dialogue also serves in dispelling perhaps hitherto held perceptions by the general medical community that this was a rare and poorly understood disease with no cure and that it could only be “managed” by treating the symptoms or by extreme measures such a hysterectomy or pregnancy.

 

 

I wish him strength as he forges through in his quest on our behalf to fight endometriosis.