“Don’t accept that nothing can be done”: A conversation on endometriosis

@solomonkammer

In a classroom we have spent much of the last two years in, my English teacher, Ruth, and I, with my laptop and list of questions poised, sit opposite one another. Ruth recently informed my classmates and I that she would be taking a leave of absence. This did not come as a surprise, as Ruth had taken a similar, yet shorter, leave about a year prior, and had thenceforth intermittently been out of school.

Now, however, it was quite different and far more impactful. By this time we knew, after Ruth had shared with us, that her absences were due to her endometriosis, a condition that I had vaguely heard of but knew very little about. I could infer, however, how much pain and discomfort Ruth was in, and both admired and lamented how hard she continued to work and support us and our education throughout it. We were so glad that she was finally taking the time off that she needed, yet were deeply sad that she would be absent from our day-to-day lives.

As said, I still by this time knew very little about endometriosis. I wanted to act in such a way that I could improve my own knowledge and potentially that of others, whilst also finding a way to support Ruth and extend my compassion, mind, and heart to her. She has kindly agreed to sit down in conversation with me about her endometriosis, and so we sit in her classroom as we always have, and begin.

What is endometriosis?

The NHS’ website defines endometriosis as:

“a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.”

Ruth stated that little is concretely known about endometriosis. Elaborating, she discussed how early researchers had an entirely wrong idea that the condition was caused by the menstrual cycle causing random parts of blood from the endometrium (uterine lining) to flow into the bloodstream and travel around the body.

Ruth then provided her own definition: tissue resembling that of the endometrium moves to other parts of the body, where it accumulates and grows, hindering those other parts’ functions. Most commonly, the tissues affected are in the pelvic area. The travelling endometrial tissue causes inflammation of whichever tissues it comes into contact with, and this inflammation causes endometriosis’ symptomatic pain.

What causes endometriosis?

As yet, there has been no definitive cause of endometriosis discovered, and the consensus is that it is multifaceted. Below are some common causes to be aware of.

Genes, if there is a history of endometriosis in one’s family.

Hormones, particularly as some research shows that the hormone oestrogen may promote endometriosis. Ruth mentioned that some transgender women, having taken hormonal replacement therapy for oestrogen, have had problems relating to endometriosis.

Immune system weaknesses, for the body’s immune system may be ineffective at locating and attacking endometrial tissue that has travelled to grow outside of the uterus.

Menstrual flow problems, specifically ‘retrograde menstrual flow.’ Whereas a typical menstrual flow means uterine lining is shed to fall out from the vagina, retrograde menstrual flow mean that uterine lining retrogrades (travels backwards) by travelling into the fallopian tubes, rather than out of the vagina, and then potentially into areas such as the abdomen, where the tissue may settle and inflame other tissues.

What symptoms do you experience as a result of endometriosis?

“Crippling pain!”, Ruth says plainly. It can “make you physically double over … or can be constant low-lying aches.” Additionally, she commented on a general “inability to control body temperature”—“at the moment,” she says “I am very hot!” Yet, at other times she could be “bundled up in coats and hats” due to being so cold.

She commented that symptoms vary from person to person, particularly in terms of where pain is located and/or most intensely felt, as different people will have different tissues inflamed by the condition.

What medication is prescribed for endometriosis?

Currently, there is no cure for endometriosis, so medication is simply “different strengths of pain relief,” such as “paracetamol and codeine.” Managing the inflammation of tissues is also “key,” says Ruth, because it is this that causes the pain in the first place. Medication for the purpose of managing inflammation and swelling could be that of “naproxen.”

What surgical solutions are available?

Ruth identifies two types of surgical treatments: “Removal, which involves taking out pieces or all of the tissues” that cause the inflammation, and “excision, which involves removing pieces of the larger tissues that have been damaged.” Such larger tissues include, but are not limited to, that of the “bowel, bladder, fallopian tube, anywhere around the pelvic area” and particularly the “pouch of Douglas,” which is a pouched membrane between the front of the rectum and the back of the uterus.

Ruth says that surgical treatment can take “a huge amount of time to get,” especially because there are “only four specialist centres in the U.K., and a huge amount of people trying to access them.” Even after having accessed surgical treatment, problems can remain— Ruth mentioned that she “was speaking to a lady the other day who has had sixteen operations” relating to her endometriosis.

Why is so little known about endometriosis, considering how it is the second-most diagnosed gynaecological condition in the UK?

Ruth states that women are often misdiagnosed and/or undiagnosed for a variety of reasons. One reason could be the discrepancy in how doctors perceive patients’ pain levels, and in how patients perceive their own pain levels. Using the typical “1-10” pain descriptor scale, Ruth explains that “women are coming with what they perceive or describe as pain levels of three, whereas their actual pain level is closer to ten.” Or, it could be the case that doctors perceive women’s described pain as far less serious and painful than it actually is. Ruth says that “women are not taken seriously” when discussing their pain.

Procedurally, the difficulty in diagnosing and identifying endometriosis also contributes to its inaccessibility and its obscurity. The pain women describe is “often attributed to stress, IBS, diet, etc.,” and Ruth indeed says that “IBS is an easier diagnosis” for doctors to assign to symptoms that could actually be from endometriosis. Additionally, “seeing different doctors has an impact” on the likelihood of a potential diagnosis or investigation, for “differences in notes” confuse the process or contradict other doctors’ opinions.

“Normally,” says Ruth, “the condition is looked for or found when women are looking to conceive” and are struggling to do so, as endometriosis has implications for fertility.” Whatever causes an investigation for endometriosis, the “process is often long,” and “normally takes around seven to nine years.”

How did you receive a diagnosis?

“It was only when I was having problems with conceiving that doctors looked at the possibility of endometriosis.” Retrospectively, Ruth knows that she has “had it since I was sixteen because of the symptoms I had at that age.” These symptoms included frequently agonising pain and vomiting, which was diagnosed at the time as IBS.

Following her problems with conceiving, Ruth procured a laparoscopy. Also known as ‘keyhole surgery,’ this procedure is a less invasive form of surgery, and involves multiple small incisions in the abdomen. The surgeon then inspects the area with a laparoscope (a small lighted camera), their surgical tools, and a tube to pump air to inflate the abdomen, making it easier to operate. By doing this, surgeons can identify any indicators of endometriosis, and may even be able to remove it during the surgery.

After her procedures, Ruth was told by doctors that her endometriosis “was the worst case they had seen,” and that they felt that “nothing could be done.”

Is your menstrual health and wellbeing affected by your endometriosis?

“It can be, but [most effects] are more to do with the medication I’m given.” For Ruth, menstruating is made “excessively painful” by her condition and its management, and she says that “medication can affect the thickness of your blood, the colour of your blood, [and] the frequency of your bleeding.” She notes that “medication is different for everyone” and that everyone will thus experience different effects to their menstrual cycle.

How do you manage your endometriosis non-medicinally?

Mostly, by changing diet. Ruth has “cut out sugar, and cut out caffeine” in an effort to “cut out inflammation.” This is because sugar and caffeine can contribute to inflammation worsening. She “can have natural sugars,” however. Ruth says that she “eats little red meat, mostly white meat or fish,” and that she “can’t really drink alcohol.”

“Many people with endometriosis,” she says, “are on a gluten free diet, perhaps to avoid white carbs” that could also contribute to inflammation being worse.

Diet is perhaps the main method with which many people with endometriosis manage their condition non-medicinally, and lots of research is being done into how diet can improve the symptoms of the condition.

How does endometriosis affect your life?

For Ruth, endometriosis is “not life-threatening, but is life-limiting.” She describes how “I basically don’t have much life beyond work,” and that when “I go home, I rest.” Endometriosis fatigues Ruth’s body for how “constant pain means everything is working harder than normal,” which, because “your overall well being is already impacted, has ramifications for your mental wellbeing.” She provides an example of how endometriosis means she has to be far more considerate of what she does on a day-to-day basis, for example because of how “If you decide to go for a walk, you need [to factor in] recovery times for three hours afterward!”

Has your workplace accommodated your needs?

“I’m really fortunate that my workplace has been phenomenally supportive.” Ruth elaborates that when at work, assistance is given to her by colleagues taking any excessive tasks away, provisions of resting facilities being made available, and by friends at work being understanding of her condition and limits.

What has endometriosis prevented you from doing?

“Running, as I can’t run half marathons anymore, because the jarring motion sends shooting pains.” Following on from how endometriosis affects Ruth’s life, she says simply that she “has to think ahead all the time,” about whether places have “readily available toilets” and “places to sit and be still.”

What has endometriosis propelled you to do?

“Swimming!,” smiles Ruth. “Swimming is really good, [and makes pain] feel a lot better. I am,” she says somewhat warily, “investigating open water swimming,” which we both laugh at, lamenting our shared aversion to the cold.

Aside from physical activities, Ruth describes how she now regularly uses acupuncture as a method of relieving pain, but also enjoys it as a form of leisure, too. In addition, the extent to which she has to rest has meant she has a lot more time for “reading and watching television.”

What is the importance of rest to you?

“Basically, no matter what you do, you will feel the pain. It’s always there, no matter what you eat, how much you rest; the pain is crippling. Making yourself rest is the best thing to do, but it is so difficult.”

We discussed the problems and impacts of living in a society driven by capitalist conceptions of what is valuable and not valuable. “We’re brought up,” says Ruth, “in a world of productivity … there’s a stigma around rest — those that are presented as successful are those that are always on the go.”

Ruth implies that for those with endometriosis, a reconceptualisation of productivity and success is key to allowing yourself to rest. “Being non-productive to be productive” in managing your health “is really hard.” Yet, “everyone needs to rest, even those without chronic pain.” Ruth says that “once you get past the difficulty of rest, and know that it is okay and that you are not letting yourself or anyone else down, then it is really quite nice!”

Is there a sense of community amongst those with endometriosis?

“Definitely,” says Ruth, explaining that there is a “massive online community.” Endometriosis UK is probably the largest of these, with regional and national facebook groups composed of “women supporting other women.” From these, Ruth has “made some really nice friends,” with whom she describes having “supportive herbal teas – not coffee!” Feminist consciousness is caused by and also threads together “ a camaraderie through the pain.”

How can those without endometriosis help?

“If you have a supportive partner, it makes everything far easier to deal with.” Ruth describes a certain “double bind” of medical and personal misunderstanding that people with endometriosis face—medically, their pain and symptoms are dismissed, underestimated, or misunderstood, and this can be so much harder to deal with if happening with friends and family, too.

“Being aware” of the nature and demands of endometriosis “and not taking it personally if we say we can’t do something” like attending social arrangements is really important. This being said, friends and family should “not mollycoddle” people with endometriosis, but rather just “ask if they are okay with doing certain things” and be considerate in making accommodations when spending time with them. “Just be supportive.”

For those who do not know anyone with endometriosis—though the likelihood is slim, considering 1 in 10 women in the UK have the condition—“finding out as much about it as possible” is Ruth’s advice.

What advice would you offer someone who has been recently diagnosed, or is seeking diagnosis?

“Be honest.” Ruth says. “Don’t say that you’re not in pain [when you are],” and do not understate the intensity of your pain. “Take pictures of your body, and document where your pain is with a score” such as that used with the 1-10 pain scale. “Keep a journal of your symptoms and also your feelings,” Ruth says, saying that you can request to “get a medical record journal” to help you with this.

“Get your medical professional to understand, and if you’re on their system for an investigation, keep in contact to get dates and times, keeping a track of these yourself.”

Importantly, “don’t accept that nothing can be done.” If you are told this or are otherwise dissatisfied, “ask for a referral to a specialist clinic or service.” When Ruth received her diagnosis, she was told that she was “the worst case they had seen,” and that “nothing could be done.” Yet, “I pushed and got a place somewhere that did offer help.” Ruth says that “There is always something that can be done.”

Author: Emilia Mason

Instagram: @e_mas0n

Artwork: @solomonkammer

http://solomonkammer.com/