We all like to believe that if we have surgery for our illness, we will be better after. But that’s not always the case. I have had 3 surgeries for my Endometriosis, which is actually not very many as I have read of women who have gone through 8, 9,10 surgeries with little to no success at all, sometimes not even receiving the correct diagnosis for years.
Before I go into details of my personal experience with surgery, I want to stress one thing. EXCISION of Endometriosis is the gold standard for surgical treatment. Just like cancer surgeries, a deep excision needs to be performed to remove the growth at its root. It’s a practice that is still being learned and not every surgeon uses this method, even though the other methods (laser ablation and electrical figuration) are ineffective as they do not remove the root of the Endometriosis.
Some people had hysterectomies and still experienced pain after; why is that? It's because Endo needs to be excised at the same time the uterus is removed for best results. Endo has been found on every organ in the body. Early detection and proper treatment are extremely important in managing this disease.
A laparoscopy is performed to view the pelvic cavity and check for Endometriosis. Many of us become intimidated by doctors but remember, this is your health and you need to be your own advocate. What you need to ask before you have a laparoscopy done is, what will they do when they see the Endo growths? What technique do they use to remove the Endo? What if the Endo is on the bowel, bladder, ovaries; what would they do? If you don't get the answers you're looking for, then find someone else.
As mentioned in About Me, I was “diagnosed” with Endometriosis in 2008 but I received official confirmation in December 2013 when I had my first laparoscopic surgery. Three small incisions were made, one in my belly button and two lower, and an hour and half later I was told the Endometriosis was all out.
I stayed on birth control for 6 months after the surgery; my periods were painful but manageable with medications and heat pads. My husband and I started trying to get pregnant but towards the end of 2014, the random pains were back and severe attacks began. It felt like someone was stabbing me over and over; I couldn’t move and would just lie in fetal position waiting for the meds to dull the pain. My husband wanted me to go to the hospital but I thought what could they do if my gynecologist had already done what he could?
Photography: Ishu Kler Photography
After a couple of months of this, I decided to go back and see the gynecologist, as the pain was getting worse and more frequent. He reluctantly scheduled me for another surgery in May 2015. It was a bit of a longer recovery, which I attributed to age and a second surgery. At the follow up, I was told that there was barely any Endo there so the pain I was describing didn't correlate with what was found in surgery. I was told to take a Tylenol and just manage.
That moment, I still remember so clearly because I doubted myself. I had always thought I had high pain tolerance, especially over the last few years, so when I heard this I felt I was weak. I sat in my car and just cried; what was wrong with me? Nothing apparently. I tried so hard to be “better” after this second surgery because I was supposed to be fine. I tried making some lifestyle changes but nothing seemed to work because the pain and nausea were becoming constant and I started to become depressed.
Not too long after this second surgery, I heard of Endometriosis specialists at BC Women’s Hospital through a patient of mine who also had Endometriosis. I put in a referral right away and waited 6 months to see the specialist. Because our focus was pregnancy and pain management, I was put on Visanne for the pain and we were given options for another surgery, to be followed by Intrauterine Insemination (IUI) or In-vitro Fertilization (IVF). I also learned I had an Adenomyoma but what it was, why it occurred and its effects on my health were not explained except that it was inoperable unless I had a hysterectomy, which was not an option I was considering at that time. I did not want to have another surgery so the specialist referred us to a fertility clinic. During the testing portion, my condition became worse so we stopped going.
I had not worked much at the hospital throughout the year and stopped going completely in September 2016. I had severe pain, nausea, bloating, cramping, diarrhea, constipation, fatigue, insomnia, anxiety, and stress so needless to say, it was hard to take care of others when I needed a hospital bed myself. I had been in and out of the ER, sometimes waking up in the middle of the night, screaming from the pain. All of this was scary and both my husband and I did not know what to do. He felt helpless and I did not know where to find the help that I needed.
Photography: Ishu Kler Photography
Hair & Makeup: Nalini Maharaj
I was at my end. I was pushing myself to go places and appear normal and I was finding it hard to this. People close to me were starting to understand now that I was not doing well. When I was at my lowest point, not knowing what step to take next, my friend sent me an article about celebrities like Padma Lakshmi and Lena Dunham dealing with Endometriosis. They mentioned a doctor in New York they had seen, who had been treating people for years by using excising only to remove Endometriosis.
I researched Dr. Tamer Seckin and found the answers I was looking for. To have surgery by him was not a cheap option but it felt like my only option, especially as I was having difficulties connecting with the clinic at BC Women’s and I did not know how much longer I could handle the condition I was in.
I was quickly scheduled for surgery on December 1, 2016 in New York. Dr. Tamer Seckin removed approximately 80% of the 2 adenomyomas in my uterus and cut out 24 endometrial growths using deep excision. For any of those interested, the surgery consisted of: hysteroscopy, bilateral ureterolysis, bilateral temporary ovarian suspension, adenomyomectomy, uterine repair, bilateral posts neurolysis, multiple excision of endometriosis implants from bilateral posts peritoneum, left and right pelvic sidewall excision involving hypogastric, ovarian cliff, and ovarian fossa, and anterior rectum excision. My surgery was almost 5 hours long, with recovery predicted to be between 4-6 months while on continuous birth control (knowing what I know now, going on a progesterone only pill would have been a better choice post-operatively).
I had some great outcomes as a result of the surgery; immediate relief from nausea and bowel issues, decrease in overall pain, and the tightness in my pelvic cavity was gone. I did have a post op complication of neuropathic pain in my right leg (random sharp, shooting, burning pain) as they had operated on my external iliac artery but I was lucky that acupuncture resolved this pain within weeks.
I started off on Alesse for birth control but soon switched to Yasmin as I was having breakthrough bleeding on Alesse. After a couple of months, the same happened with Yasmin so I was told to come off the pill when this happened, have my period and then go back on. I was scared to come off the pill and knew why I was soon after I did. I didn't have to go the ER this time but I took a lot of drugs to manage the period pain; and by manageable, I'm talking me able to shuffle myself from the sofa to the washroom and 4-5 days of bed rest.
A year has passed and even when I don't have my period, I still have pain, nausea, fatigue, insomnia, bloating, headaches, diet restrictions among other symptoms. The question I always get now is what was the point of paying for this surgery if you are still not well? While there might be some Endo missed, it can be scar tissue & adhesions causing pain but more so, in my case, Adenomyosis was a large contributer to my pain problems post-operatively.
Symptoms of Endometriosis may vary for each individual but the best method for removing Endometriosis does not.
Roop Bassra, RN
BSc Psychology, BSc Nursing