Endometriosis: The Story Of How I Needed Emergency Surgery
Endometriosis: Women are told that pain during menstruation is “normal”. I know pain is not normal, but pain bias is
There is a long history of women’s pain being downplayed. In a recent study co-authored by Elizabeth Losin and published by Journal of Pain, it was found that female patients’ pain was perceived to be lesser than male patients.
Women are raised to think that certain parts of our biology, especially the menstruation process, may hurt, but that it is “normal”, and we internalise that idea so deeply that we often ignore our own body’s ache.
It might be due to this conditioning but our bodies become used to blocking out the pain -- the body protects, and so the pain becomes a distorted memory.
In my own experience, I have a memory of waking up one day with searing pain in my back and abdomen, a pain I used to perceive as customary accompanying my monthly period routine.
The next image that flashes in my head is buckling in the bathroom, the pain twisting my stomach in knots, steadily stealing the rhythm of my breath, leaving me gasping and rocking my body. The routine pain escalated within moments.
The pain that was supposed to be “normal” turned out to be a serious medical complication.
This assumption of women’s pain, especially period aches, often taken as normal, even by women themselves, is a manifestation of Pain Bias. Pain bias is, simply put, a medical dismissal of women’s pain; there is a long history credited by multiple studies like the one in Journal of Pain of women’s pain being disregarded.
This dismissiveness is frequent and entrenched in patriarchy and taboo surrounding periods, affected by perceptions of women as ‘over-reacting’; Losin herself mentioned in the study that the stereotype of women being more expressive than men lends to the notion that they are exaggerating their pain.
Whether it is at home with your mother asking you to bear the period pain because it’s “normal” and “all women go through this but continue to work and exercise nonetheless”, or in a hospital emergency room, where the first doctor may downplay your pain, may not take your symptoms, or quietly ask of the possibility of a *hush hush* pregnancy, women’s pain is either minimized or presumed to be a symptom that needs to be hidden.
Another study published by the Society for Academic Emergency Medicine that evaluates the time and quality of analgesic treatment in patients showed that women waited longer to receive analgesic than men. Pain Bias refers to this presumptive disbelief or downplaying of women’s pain.
A Surprise Diagnosis
Going back to my memory-- I sought medical attention urgently. The doctors carried out a sonography which showed the rupture of the cysts in my left ovaries, leading to another sonography, this time under a specialist who confirmed the size of the chocolate cysts to be enlarged. The end diagnosis was Endometriosis.
Endometriosis, as defined by gynaecologist Dr. Niharika Thakur is “the implantation of endometrial tissue outside the normal uterine cavity -- tissue that lines the uterus begins growing outside the uterus, most commonly in ovaries”.
As per a report available on the John Hopkins Medicine website, somewhere around 2% to 10% women of child bearing age (15-49 years) are affected by endometriosis; Dr Thakur adds that its prevalence might be as high as 50% in infertile women as well.
Dr Thakur talks of its growth, explaining how, as it grows monthly, it will shed and cause internal bleeding, resulting in additional complications.
Endometriosis most commonly manifests in period-related pain -- excruciating cyclical pain, which may or may or may not be accompanied by menstrual irregularities. It could take the form of local tenderness and a lump around the periods, and could result in other complications like infertility issues. In some cases, it could be asymptomatic too.
As was in my case as well, the symptoms are largely “typical” of menstrual experience, leading to it going undetected as women often internalise any pain or complications during periods as their “normal”, a part of their life. At the same time, doctors concur that pain is a subjective phenomenon.
So, people with low pain threshold may experience excruciating pain but not have endometriosis, or people with high pain threshold may not identify the pain as such. Regardless, it cannot be denied that menstrual pain is often treated as a woman’s normal which severely affects our perception of it. We often convince ourselves it is part and parcel of menstruation, ignoring our bodies.
Clearly, Pain Bias is not only external, it is internal as well.
The Emergency Surgery
Dr Thakur expands on diagnosing endometriosis in a preliminary investigation -- through CA125 blood test, or identified through imaging studies like ultrasound or sonogram, like in my case. However, these are preliminary tests. Dr Thakur explains, “if your ovaries are enlarged with endometriosis, it might be caught in the ultrasound, but other symptoms, like tiny microscopic deposits in the pelvic cavity, are not picked up in imaging. So, laparoscopy is important for a final diagnosis and treatment.”
In my experience, although I was preliminarily told I would have the option of not choosing surgery, a laparoscopy turned out to be important as the sonography showed the rupture of my cyst which had resulted in heavy internal bleeding; laparoscopy was then my only choice.
I didn’t have an opportunity to go on the internet and down the WebMD rabbit hole, thankfully, but I also couldn’t do enough research on what a laparoscopy entails. But later on, upon conversing with the doctors involved I found out that laparoscopy is the insertion of a device that carries a camera into the abdominal cavity for a detailed investigation and treatment of internal complications.
Dr Thakur had explained to me that a laparoscopic surgery has the same complications as any other surgical procedure, like allergic reactions to anaesthesia or incidental injury to nearby organs. However, in the hands of an experienced gynaecologist, the chances of any such issues are very rare. A good gynaecologist is therefore essential.
I remember, hours before the surgery, the nurse started shaving me and, in complete honesty, there was shaming of my pubic hair. In a society with unachievable beauty standards, I wasn’t too stunned that the nurse found me to be a misfit, although it was disconcerting that it was happening during a serious medical complication. I took it as just another part of the troubles that came with the surgery so as to not dwell on it much.
Unsurprisingly, all I remember about the actual surgery is the injection of general anaesthesia and waking up afterwards with a searing pain in my shoulders, neck and chest.
Post Laparoscopy Blues
Post surgery, I woke with a heavy head, like my body was pinned down but my mind was hovering above, like a separate entity. This feeling was very quickly replaced with a full blown anxiety attack, as my body started to realize the shock of going through a surgery, and cope with the trauma of going through such a huge medical complication. Some medicals refer to this as “post-op blues”.
Dr Niharika Thakur explained to me what my body had really gone through. She said, “endometriosis causes a host of other complications. It distorts your pelvic anatomy and causes severe fibrosis in your pelvic organs; it can be challenging on laparoscopy.” It was a close call for me, but it went well, which mattered the most, personally.
All that was left was post-surgery procedures, which included administration of suppressants and medicines, which Dr Thakur explained contained “both modalities combined to increase the chance of a successful treatment”. A report published by Wolters Kluwer Health, Inc. titled Clinical Management of Endometriosis mentions that without hormonal suppressants post-surgery, pain symptoms will recur.
I realize that the idea of surgery is daunting -- it was for me too -- and there are other alternatives. Dr Thakur mentioned that some cases are responsive to medical engagement like hormonal therapy -- “you can be put on Progesterone like OCP”, she mentioned as a possibility.
The Wolters Kluwer Health, Inc. report mentions nonsteroidal drugs combined with oral contraceptives, or gonadotropin-releasing hormone (GnRH) agonists and oral progestins as alternatives.
In a lot of cases, however, there are lesions, or cysts, those are not amenable to medical management; Dr Thakur informs “surgery is advised based on imaging results. If there are enlarged ovaries or ovarian cysts, they would not shrink, they might flare up instead”. In such cases, laparoscopic surgery is necessary.
A very important part of any surgery is the cost. I paid everything after my surgery, fortunate for cashless insurance which helped because I didn’t have anyone to help with paperwork. If you are preparing for laparoscopy, ensure you have a comprehensive health insurance plan that covers most, if not all, of the costs, and especially covers women’s uterus care.
As for a post-surgery experience, it is exhausting. As I was coming off of anaesthetics, the tiredness of my body going through a medical procedure and the trauma I had to experience both pre and post operation started to catch up with me. It was a hard time, but it passed.
At the end, I heaved a sigh of relief and silent gratitude that although I hadn’t been too kind to my body -- ignoring its pain every month for years on end -- it still protected me. It will heal because it's resilient, and because I gave it the medical attention it needed.
All’s well that ends well, right?
As I heal, I am now ensuring a proper diet which includes plenty of fruits, seeds and light foods like soup, along with plenty of fluids, especially water. Doctors also typically advise for light exercise -- to help with the bloating one may experience -- and refraining from sex for anywhere between two to six weeks depending on how your surgery went. Of course, your doctor would give you more specific guidelines based on your post-surgery symptoms. I made sure to follow up with my doctors as specified to aid the recovery process.
Additionally, the first period post-surgery would usually be painful, which is nothing to panic about. It is a part of your body healing post-surgery.
Now I know that my pain matters, that it isn’t necessarily a typical experience of being a woman. I realize that debilitating pain under any situation, particularly during periods, isn’t something I have to go through. My body’s pain is valid.
I have decided to take my body’s alarm system seriously, and ensure I get the right treatment so that it can heal properly. I have learnt to listen to my body’s signals that indicate that it is in pain.
As proven, pain bias is both external and internal, and I have decided to curb the latter from my perception.
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