Gender in Medical Treatment: Invisible Illnesses

by Francesca Tosi and Lucia Lupotti

Gender-specific medicine, according to the World Health Organization, consists in studying the influence of biological (sex-defined) and socio-economic and cultural (gender-defined) differences of the state of health and disease of each person. These differences strongly affect people’s quality of life, so it is necessary to investigate the causes, dynamics and possible solutions. In fact, we must focus our attention on those diseases considered feminine, which are very frequent in the population but do not receive the right therapies, are not studied enough and are underestimated by doctors. Three of these cases include endometriosis, vulvodynia, and pudendal neuropathy, which we will discuss in this article.

When we ask ourselves, “what role does gender play in medicine?”, something that comes to mind is the underfunding of research on diseases that affect 10-15% of persons with female reproductive organs worldwide. Those with these diseases are often belittled and doctors typically underestimate their symptoms, affirming that they are simply having period cramps or a headache. Meanwhile these diseases are very serious, can cause high levels of pain and uncomfort, as well as lead to infertility.

Endometriosis

What is Endometriosis? Endometriosis is a disease that affects mainly the female bodies on and around reproductive organs in the pelvis or abdomen, including: fallopian tubes, ligaments around the uterus (uterosacral ligaments), lining of the pelvic cavity, ovaries, outside surface of the uterus, and the space between the uterus and the rectum or bladder. More rarely, it can also grow on and around the bladder, cervix, intestines, rectum, stomach (abdomen) and the vagina or vulva. In very rare cases endometriosis has also been diagnosed in bodies with male sex, but in this article we will focus on the disease as a mainly female disease, since we will analyze the issue according to a gender perspective.

Endometriosis is an endometrial-like tissue that grows and can later scar, leading to pain. It affects up to 10% of women from the ages 15 to 44, making it more likely for them to have infertility or difficulty conceiving. Actually the American Society for Reproductive Medicine found that 24% to 50% of people with female organs with infertility have endometriosis. Symptoms of endometriosis may include: excessive menstrual cramps, abnormal or heavy menstrual flow and pain during intercourse.

Is there a treatment for Endometriosis? While there isn’t a true treatment for endometriosis, there are procedures that can be done to ease the pain and increase chances of fertility and facilitate pregnancy. For example, laparoscopy is a minimally invasive surgical procedure which can be used to definitively diagnose and treat endometriosis. Additionally, a biopsy is required for the definitive diagnosis of endometriosis. More and more, studies based on genetics have been researching various treatments that may be needed depending on the type of endometriosis the patient has. The most common treatments that do not require surgery are hormone therapy and pain management. Since endometriosis tissues are affected by hormones in the same way as endometrial tissues inside the uterus, menstrual cycles can make endometriosis pain worse. Due to this, pain can be alleviated through the use of hormone therapy, but it can affect the ability to get pregnant. Furthermore, levels of pain vary amongst those affected and are not necessarily correlated with the level of endometriosis there is.

Vulvodynia and Pudendal Neuropathy

The term "vulvodynia" refers to chronic and persistent pain localized to the vulval area from 3 to 6 months without a clearly identifiable cause. It can be classified as generalized vulvodynia when the pain affects the entire vulvar area, and localized vulvodynia when only certain parts are involved. The most common form is vestibulodynia, characterized by symptoms present mostly in the vestibule area, but it can be localized also at the level of the clitoris (clitorodynia) or it can be present in several areas. Vulval pain consists of an inflammatory alteration of the nerve endings at the level of the external genitalia, which leads to muscle contraction in the genital area (pelvic floor). Vulvodynia can be spontaneous, where symptoms are always present, or provoked, where pain is triggered by contact, for example during a sexual intercourse, gynecological exams, sitting, etc. This generates pain and prevents those who suffer from engaging in various activities.

Similar to vulvodynia, pudendal neuropathy also influences the lives of many people; it is closely related to vulvodynia because the involved nerves are the same, namely the pudendal nerves, but it can also affect male reproductive organs. Pudendal nerves are responsible for the sensitivity of the genital area and for the functioning and control of urination, defecation, and sexual pleasure.

The most frequently reported symptoms by patients are: burning, itching, sensation of pins, or electric shocks, abundant vaginal secretions, cuts at the entrance of the vagina, urinary and/or intestinal disorders. As we mentioned earlier, the underlying causes and mechanisms of vulvodynia and pudendal neuropathy are not yet fully understood. However, it is acknowledged that these conditions may be triggered by direct trauma (e.g., falls on the coccyx, childbirth with tearing or episiotomy, pelvic surgical interventions), or by a series of co-factors that contribute to the onset of the disease, such as recurrent urinary or vaginal infections, prolonged use of antibiotics, irritable bowel syndrome, endometriosis, painful bladder syndrome, migraine and fibromyalgia.

Why is it a gender issue?

The condition of persons suffering from endometriosis and vulvodynia can be considered a gender disparity issue for a multitude of significant reasons. Firstly, these are diseases that are poorly studied, due to the fact that few medical research centers allocate funding for studies aimed at understanding the causes and finding suitable treatments for healing or alleviating symptoms. However, these are not rare diseases, on the contrary, they are quite widespread among the female population. Therefore, the fact that medical progress is still so limited is due to a lack of willingness to prioritize the improvement of female reproductive organ health.

Secondly, there is a considerable diagnostic delay, which is caused by the ignorance of most doctors since these are diseases that have only begun to be studied in recent years but also due to paternalistic behavior projected by some healthcare professionals. Often, when patients express debilitating and severe pain, doctors underestimate it and claim they are "overreacting," that "pain during the menstrual cycle is not unusual," that "if you get pregnant the pain will disappear," that "you just need to drink a glass of wine and the pain will go away," and so on. Therefore, female pain is not taken seriously and in some cases, it is even considered normal to suffer physically.

Thirdly, persons who experience these medical conditions do not receive the necessary support to maintain a dignified lifestyle. An example is how endometriosis is considered in Italy: it is included in the Essential Levels of Assistance (LEA), consisting of services and performances that the Italian National Health Service (SSN) is required to provide to all citizens, but it is recognized as a chronic and disabling condition (therefore it is included in the LEAs) only in the more advanced clinical stages ("moderate or Third Degree" and "severe or Fourth Degree"). The problem is that this is a disease with a significant diagnostic delay and underestimated in terms of the debilitating effects of the symptoms. Therefore, the fact that individuals can receive support only in the more advanced stages of the illness does not guarantee a good quality of life for those in less severe stages who nonetheless may be suffering chronic pain.

The situation is even more serious for those suffering from vulvodynia, as it is a condition not recognized by the SSN. People who suffer from vulvodynia have to cope with numerous treatments to remit the symptoms: in Italy, if you suffer from a chronic disease, you can be exempt from paying the medical bills or you can be eligible for tax reimbursement. This does not happen with vulvodynia, and now we talk about it with Jessica [assumed name assigned to maintain anonymity], a girl who suffers from vestibulodynia.

Can you tell me what your day-to-day is like?

There are good and bad days, but it is not continuous for me. On bad days, I can’t sleep well at night and I often wake up because I feel burning and I have to go to the bathroom. This is actually related to the hypertone of the pelvic floor, which is when the muscles are stiff. Then when I wake up in the morning it is as if I have a fever, I am tired and I have a general malaise. I have to do the "vulva care", put on the cream (I do this even on good days) and use a warmer to relax the muscles and wait for it to pass, otherwise it will hurt me all day. Then I take supplements, one for the muscles (such as magnesium), one for the urinary tract and another for the pelvic floor. Over time I had to change several supplements to figure out which one was best for me.

During the day, if I am forced to sit in uncomfortable chairs, I struggle to work, but fortunately it is not a fixed thing, indeed the creams I take work a lot. I always have to be careful on how to dress, in fact I dress with loose pants and cotton underwear.

When I come home in the evening, I have to do gymnastics for the pelvic floor following the instructions that the urologist gave me and then I take a medicine that always serves to relax the pelvic floor and nerves.

How has vestibulodynia affected your life?

Vestibulodynia has influenced many areas of my life, starting with the professional one, because when I work it’s difficult to concentrate because of the pain. In fact, it also affects me when I simply walk on the street, because I constantly have to fix my pants, stop for a moment and rest. It also affected my ability to participate in sports, as I practice ice skating and if I am forced to contract the muscles to keep my balance, it hurts. And finally it also affected sexual intercourses, because without medical care I feel an absurd pain, but following the routine that I have just explained, it is much better.

What has your experience been like with medical teams?

I initially had cystitis when I lived in Zagreb, and there they gave me an antibiotic, but in my opinion it was not strong enough because I had a fever at 40°C. They did not give me any disinfectant for the urinary tract, which they prescribed in Italy. I continued to have pain and I thought I always had cystitis, but at the same time I also had candida infection, so the gynecologist diagnosed me only candida. I kept saying I had another kind of burning, so she did a vaginal swab, and it turned out I still had cystitis. I took two antibiotics to heal the cystitis, but it kept burning and the need to go to the bathroom persisted; it did not seem like a simple cystitis. So the gynecologist advised me to go to a urologist, but I found only urologists specialized in male dysfunctions, or male doctors and personally I prefer to be visited by a female urologist. I finally found one here in Padua, and just by chance she is specialized in vulvodynia and female genital dysfunction. She diagnosed me with vestibulodynia. I was lucky because only about a year later I had the diagnosis and I started the therapy. It never occurred to the first gynecologist that I could have such a thing and if I had chosen an unskilled urologist I probably would not have been diagnosed. The problem is that there are few specialists, in fact my urologist has a waiting time of two months. Fortunately in Padua I found her, however I come from a city in Friuli where there is not even one.

Did you experience hardship in getting help?

No doubt when I was abroad it was more difficult because I did not understand what was happening to me. If I had been in Italy I would also have the support of my family and maybe I would have identified the cause earlier. I admit that when I returned to Italy I felt some stigma of the fact that my vulva was hurting. At the beginning, with my parents it was a taboo talk, but then I couldn’t take it anymore and I started talking about it more freely. Then my first gynecologist was always available with me, but as I said before, she could not give me the correct diagnosis. In fact, once during a visit I had a lot of pain and she said "come on, you can stand the pain!" as if it were normal. So yes, I had many difficulties.

Is medical treatment affordable?

Absolutely not, it’s very expensive. I was forced to look for another job to get the money to buy all the medicines. I pay about 300-400 euros for a three-month treatment, then about 100-150 euros per month. Medicines can cost 25-30 euros, the cream that I use most in this period costs 40 euros and is only available online. These expenses must be added to the medical examinations, each costing 180 euros for the urologist and 120 euros for the gynecologist.

Can you describe what pain you experience?

The whole area of the vestibule burns and it hurts a lot. When I have intercourse I really feel needle pins. If it is not too strong, I feel it is a bit inflamed, in fact sometimes I put cold water on the inflamed area and it works, even if actually to relax the muscles you have to use hot water. When I get my period, it gets worse, because anything in the vestibule gets irritated. I have to use cotton pads, otherwise it hurts. In moments of high-level pain, the pain is inhuman and this also affects me psychologically. I thought I was wrong, I had lost my sexual interest, and I thought it was wrong not to feel any more impulses. I felt very insecure, I felt sick, I wondered if my partner should be with me, ‘a sick person’. I managed to overcome everything with psychotherapy (so I would also put the costs of psychotherapy on the list before, 80 euros per session).

Statistics

Endometriosis

• Endometriosis affects up to 10% of persons with female organs from the ages 15 to 44.
• The American Society for Reproductive Medicine found that 24% to 50% of persons with female reproductive organs with infertility have endometriosis.
• In Italy, 10-15% of persons are affected by endometriosis; the pathology affects about 30-50% of women who are infertile or have difficulty in conceiving, there are at least 3 million Italian women diagnosed.

Vulvodynia

• Vulvodynia has a prevalence of 10-15% and is estimated to be the cause of 4% of chronic pelvic pain.
• Vulvodynia has 5 years of diagnostic delay.  In Italy, 60 % reported see more specialists and 400 € is the average monthly expenditure.
• About 45-65% of gynecologists are not able to diagnose vulvodynia and only 20% know how to set up a therapy.
• About 15% of women report vulval pain during the gynecological examination, which means that every day, each Italian gynecologist visits 1-3 women with vulval pain. 

Proposals and solutions

In Italy, on May 3 2022, a bill was presented to the Chamber for the recognition of vulvodynia and pudendal neuropathy in LEAs. The proposal received the cross-party support of most of the parliamentary groups and was born by collecting the requests of the "Comitato Vulvodinia e Neuropatia del Pudendo". However, the process of approving and promulgating a law is very long, so currently the condition is still painful for those suffering from vulvodynia.

Italy has yet to make progress to improve this situation also regarding endometriosis: however, there are many virtuous examples that can be addressed, such as National Action Plans established in Denmark, Australia and France, that were created to help and support endometriosis research.

For example, the Australian National Action Plan for Endometriosis, established in 2018, recognizes and funds the research into endometriosis and associated chronic pelvic pain. In Australia, there is a growing recognition of the need for improved awareness, education, diagnosis, treatment and research on endometriosis and other related diseases. This plan has emerged because of combined efforts of patients, advocacy groups, clinicians, researchers and parliamentarians who have acknowledged endometriosis as a chronic condition as well as a substantial health burden in Australia. This comes to show how important advocacy and research are in the development of national strategies towards diseases like these that are underfunded.

When dealing with the theme of invisible diseases of women, we must make the necessary distinction between ‘invisibility’ and ‘invisibilization’: invisibility is simply something that is imperceptible from the outside, instead invisibilization is the process where people who hold power invisibilize the most vulnerable. This process manifests itself in making these diseases invisible to research, to "specialized" doctors, to the national health system. A typically female invisible disease, such as endometriosis and vulvodynia, is the result of a society focused on male health and well-being, while the medical situation of female persons continues to be untreated, ignored, and considered of secondary importance.

For more information

Here are videos from YouTube that may develop your knowledge on this topic.

On John Hopkins University series A Woman’s Journey, they have published an hour-long video on Endometriosis. The video has medical pictures that may be considered graphic.

https://www.youtube.com/watch?v=G7RDOsCZMNc

In Rethinking how we treat endometriosis | Linda Griffith | TEDxMIT, Linda Griffith explains advances that must be made to understand how to treat endometriosis in an appropriate manner. Professor Griffith is a biological engineer, and Professor of Biological Engineering and Mechanical Engineering at MIT, where she also directs the Center for Gynepathology Research.The video has medical pictures that may be considered graphic.

https://www.youtube.com/watch?v=_A_TJ6JihXI

If you know Italian, we recommend reading the chapters "La memoria dei nostri corpi" and “Rabbia è cura” of the book "Noi vogliamo tutto" by Flavia Carlini (2024), which we used among various sources to write this article.

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