Endo Pain – Transcript
Arti Shah: Hello, lovelies. My name is Arti Shah, and welcome to another episode of A Ray of Sunshine, a journey of an endo warrior and everything in between. Welcome home.
In today’s episode, we discuss pain with endometriosis and what a typical day looks like with pain for me. Endometriosis pain is hard to explain to people who have never experienced it. This is because each patient with endometriosis will endure their specific type of pain. It is very personalized and is different for each individual.
For some, it is also very difficult to distinguish exactly where the endo pain is coming from. The reason why it can be difficult is because endometriosis pain can affect various parts of your body at different times and may feel non-specific. The pain location usually results from where the endometriosis tissue resides inside the body.
We are often asked what endometriosis pain feels like. This is difficult to explain, but how I describe it is that the pain feels like a barbed wire wrapped around your organs and then being juiced through a vacuum suction whilst being set on fire at the same time. Unlike period cramps, pain with endometriosis is not just limited to the area surrounding the uterus.
Endo patients often experience the typical pelvic pain, abdominal pain, pain during bowel movements, pain during or after intercourse, pain with urination, thoracic pain, rectal pain, leg pain, sciatic pain, head pain, and more. The pain levels and symptoms of endometriosis are exaggerated when on menstruation and even outside of menstruation.
The specific types of pain with endometriosis are different according to the specific areas it has affected. Back pain is very common with endo because endometriosis growths can stick to the front of your pelvic cavity or your lower back, causing very extensive back pain, which is deep within the body and can result in sciatic pain.
Endometriosis back pain stems from deep inside the body and is very different from the common back pain caused by other conditions. Hence, why seeing a chiropractor would not help with this back pain, for example, the pain for me starts from the lower abdomen and the lower back, traveling upwards onto the entire back, and eventually reaches the neck and the head.
The pain gets so severe and unbearable that it causes nauseousness and breathlessness. Pelvic pain is another very common type of pain with endometriosis because tissues similar to the endometrium grows outside the uterus onto your pelvis, reproductive organs, and the abdomen, causing unbearable pain.
Neuropathy and restless leg syndrome can be caused by endometriosis. Especially when the lesions grow near or on the sciatic nerve causing extreme leg pain, which feels like a sharp stabbing sensation. It can also feel like there is fire trapped in between your skin and it’s trying to come out, but has nowhere to escape, hence causing extreme burning sensation, which then results to swellings and inflammation of the feet or the hands, making walking or holding things very difficult and can sometimes feel like spasms, similar to multiple leg cramps. Inflamed endometriosis tissue, or scar tissue formed post-surgery can result in the presence of very painful nodules that occur in several cases like the cervix, the uterus, the recto-vaginal septum, and the pelvic cavity.
The presence of these nodules leads to very sharp pain felt in the abdominal areas or the vagina, thus causing painful sexual intercourse, either before or after. Many women who have endometriosis in the bowel and other nearby structures often receive an IBS misdiagnosis. This results in having very painful bowel movements, and this bowel pain can be extremely sharp and consistent.
This pain from the bowels worsens if you have very poor lifestyle habits and bad diets that are high in greasy processed foods. The type of endometriosis pain one will experience totally depends on the location of the adhesions or lesions and the progression of the disease. Endometriosis causes so much pain, but not only is it difficult to describe, as mentioned earlier, it is different from normal menstrual pain. It is way more than just bad cramps and a type of pain that over the counter medication doesn’t help majority of the time. We are taught to believe that painful periods are normal, and this is one of the biggest myths about endometriosis as discussed in my previous episode.
Not only does the pain with endometriosis affect the physical body, but plays a huge role with your mental health. A typical day of pain for me starts at any random time of the day or night, depending on which part or organ is affected. When the neuropathy kicks in, which majority of the time worsens at night and kicks in approximately two to three hours of applying the oils, I use to manage this particular condition. The struggle between trying to sleep and managing the neuropathy starts. The legs feel so restless, and I literally bang them against the bed, and the burning sensation is so bad that I feel like just ripping the skin open to let the fire out even though there is no fire.
By now, sleep has gone out the window even though you are so tired due to the chronic fatigue from endometriosis and are so desperate in need of sleep, but you cannot sleep due to the pain. The hands are also swollen and affected, and the finger joints are very tight and painful. I then reapply the oils switch on the night meditation, which is very soothing in the hope that I will sleep.
This saga repeats itself a few times depending on how bad the endo flare is, resulting in the exacerbation of that particular symptom. By the time I am in a sweet, deep sleep, it is time to wake up because morning has arrived. Morning comes and it is time to start your daily routine. But, on the bad days, this is not the case because just getting out of bed is extremely excruciating due to the neuropathy from that night.
Stepping down and putting pressure on your feet is so painful and difficult that it takes a while just to get the mobility to walk. On such days, I often drag my, because I cannot bear that pain of putting pressure on them. Once mobility kicks in, the pain eases depending on the endo flare or relapse. And you can go about your daily chores.
But the days where the flare is really bad, which are the days nearing to my periods, during my periods in ovulation, or on days when randomly a symptom has decided to flare up, because of a trigger, then those are the days spent literally in a fetal position because the pain is so excruciating that you just cannot move.
These are the days where the nauseousness, the breathlessness, the burning sensation, the migraines and the pain levels are just unbearable and indescribable, to say the least. No meds can help during such flare up days. On such days, we know that all we can do is simply be and look forward to the good days because it’s on the good days that you try and do the most of what you can.
Such pain should never be normalized and such days warrant way more attention needed to find the right treatment plan. I now manage to get through these days by doing what I know works for me after years and years of research and finally finding the modalities that help me manage this condition and its symptoms the best way I know how. Some of these include the application of certain oils, diet changes, lifestyle changes, meditation, yoga, exercises that I know help, acupuncture and alternative remedies. What works for me necessarily won’t work for you as this journey with endometriosis is very individual and personalized. It has been a very challenging and difficult journey for me to get to where I am, but it has helped and it has taken a lot of testing, trial and errors, a lot of research and a lot of doctor visits, to be at a place where I understand not only what works for me, but also am very in tune with my body. Thus knowing majority of the triggers. As we know, there is no cure for endometriosis, but we can manage it. My bad days have reduced a lot, and I’m truly thankful and grateful for that. It is in the darkness we shine the brightest, and this is where I learned how to turn pain into power into purpose.
Let’s listen to some of the testimonials from Endo Warriors and how endometriosis and pain has affected them in their lives.
Doris Muremi: My name is Doris Muremi, and I am an endo sister. From 12 or 13 years old, I, I had very painful periods and, um, they were painful. And I think my only saving grace was that they were irregular, you know, so when they didn’t come, then at least that, that was okay.
But as the years went on and, um, you know, my mother took me to see a doctor, um, I actually saw three or four, but none ever made mention of the word or the term endometriosis. They would do the exam and they would just say, you know, girls react differently. It’s genetic, but it’s nothing to worry about. With time, she will get better.
With time, it did not get better. It, it, it just got worse and worse. What I learned to do was just to self-medicate and so I would take a lot of drugs. I just thought it was just, um, something normal, but it did get so bad that, um, the first two days of the menstrual cycle, I could not go into work. The periods were so heavy, and they were so excruciatingly painful.
Endometriosis takes over your life, particularly when you didn’t get the opportunity to manage the disease. When it’s kind of came up on you, it then controls you. I became so self-absorbed because I’m thinking about what will cause me less pain. What will, you know, what will, what do I need to take for this chronic symptoms, you know, that I’m having?
What’s the new medication that I can use and all that. There are no statistics to actually show that many girls have started suffering, you know, at a young age from the disease. So that, um, they then now focus their attention on actually management issues and, and actually going beyond seeing endometriosis as a condition that inhibits in, um, fertility to a sickness that needs to be managed the way you would manage diabetes, the way you, you know, you, you manage any other chronic illness.
Njambi Koikai: My name is Jambi Kwaikai, and I am an endo sister. Menstruation is something that happens to a woman every month. It’s something that should, should define you as a woman in terms of being strong, in terms of being a human being and all in all, just being a woman. But for some of us it’s hell. My story has been hard, crazy.
My story is very shocking. It’s very surprising. When I was 13, when I got my first period, I was on a bus going to school and I was in form one. Then there happened to be a gentleman who was seated right next to me. So, and you know, the whole pushing and shoving and I started feeling sick and I, I never felt like that before.
And I was like, there, it’s something bad or what was going on? I didn’t, I didn’t know. And I remember throwing up on this man and he was so angry and annoyed, and he was going to work. I mean, he had all the reason to get pissed at me because, hey, look at this small girl just throwing up on him, you know. While I was walking to go catch a bus, I mean catch the next matatu (bus) to go to school.
I was like, this pain is too much. I can’t walk. Let me go back home and, you know, go to hospital and see my mom and tell her what’s going on. So I went back home. Uh, then of course when I went to the loo, gosh, that was, so I came out and as of course I started screaming, Oh mom, I’m bleeding. And she’s like, no, there it is, this is what I’ve been telling you about now, you’re a woman, that you’re growing, you’re on your period.
Little did I know this would be the beginning of, of all the pain and struggle that I’ve been through. I mean, I have been through so much struggle in my life, but this, this, this culminated into so much more than I ever thought. And my grandma was also there, and my late grandma was, was a champion for truth and honesty and she was, she was a very strong woman. She told me that this is, it’s a very painful process and that I will get used to it. Then that’s when, later on I came to find out that my mom and my grandmother also had the same problem, but due to the backgrounds and due to how they were brought up, because of lack of information, they never knew that they had endometriosis.
I, I found my grandmother going through the same pains before she hit menopause. I found my mother going through the same pains before she hit menopause, and here it was, but mine was worse. What would happen is I never went to school when I was on my period, so that meant that I’d miss four days of school every month, and some teachers and some matrons would think that I was pretending and everybody just said, Oh, she’s just doing that to get attention.
And I really felt bad because the pain was crazy. I wouldn’t eat, I’d have diarrhea. Whatever I ate, I would throw up, my legs would hurt. Like, you know, you get pins and needles and you feel like your entire abdomen is, is is, you know, is immobile and you can’t move. When I started working, it got worse because now I had to explain to my boss, Why are you missing work?
And I had to say, because of a period, I’d be like, A period. You’re mad. A period. It’s just a period. And like it’s not just a period. I’m in so much pain. I can’t, I can’t focus, I can’t move my back aches, every part of me aches I feel like I’m gonna die. So my last job, I remember I was, uh, doing the late night shift from 11 to 3:00 AM. One time, my period came and I started feeling the pains. I’m so used to the pains until I know, but this pain came very differently. I was like, Yo, what’s happening? So the pain came from my shoulder all the way to my breast, to my lower breast, this side of the breast, and onto my ribs, and I felt like I was collapsing and I was losing breath, and I was on air.
I just pushed the faders down and let the music play until I could get back to normalcy. I didn’t even know what was going on. So I went back over and I saw my mom. This pain is strange, and she said, Jambi, you carry too many things in your handbag. Stop it, you know. It didn’t go away. It got worse. My grandma was also sick, so we went to hospital.
She was diagnosed with severe ulcers, and my case was more serious according to the doctor. So he said, we have to admit you tonight because your lungs have collapsed. So what happens is the endometriosis cells in your body, in your ovaries, or in your abdomen, could move to other parts of your body. And this is what our doctors don’t know, the connection between endometriosis and many other diseases affecting women.
So the endometriosis actually moved to my diaphragm and punctured my diaphragm, and later on moved to the lungs. So every month I’m on my period, I will collapse. I really want to create so much awareness about this because this is a condition that is affecting millions of women, and women are suffering in silence.
We can have an endometriosis unit at Kenya National Hospital. We can have at every level-five hospital, a place where women can go and get help. Endometriosis is causing people to divorce. It’s causing infertility, like I said, and it’s causing women to just generally not be women. It’s causing self esteem issues because women are freed. They don’t know what will happen next.
Esther Mbugua Kimemia: My name is Esther Mboga Kimemya, and I am an endo sister. When I started my periods at about 11 or 12, they were okay. I was just afraid that I started too early. So when I went to high school, as I grew, the pains progressed. So I remember I used to go to the school nurse and she’d draw a picture of my uterus, explain it was contracting, give me two paracetemol and say it was normal. So painkillers became normal because she normalized the pain for me and said, you know, get used to it. Even as I talked to my mom, she’d say, I also had painful periods. So, you know, sort of suck it up. It’s something all women go through. It took so long for me to actually realize that pain wasn’t normal.
Then I went to university and now the pain became paralyzing to some extent. So I’d be walking in town and all of a sudden I can’t walk anymore because there’s a sharp pain on the left side of my abdomen. And then I realized it’s a problem because during my period, all of a sudden I can’t fit into my trousers anymore.
When I’m ovulating, I can feel the egg, literally move from the ovary into the uterus. So I realized perhaps there’s a problem. So I started going to see the campus doctor and he said, you know, let’s try and treat it over the counter. So it used to give me a lot of antibiotics and urinary akalizers just to try and ease things up so it’s not too painful and painkillers, anti-inflammatories.
But the more I took them, it wasn’t responding, I’d be fine for a week. So I’d literally be there every other week. And of course this also eats into the time of that I’m supposed to be studying. So after a couple of months he said perhaps we need to seek a professional’s opinion. So he referred me to a urologist at Upper Hill Medical Center.
So it was good to finally have someone believe that there’s something wrong, I guess not be told it’s normal, cuz pain’s not normal. So we did, of course, the routine, urine tests and it show, you know, just a few spikes and you’ll put on antibiotics again, the same urine, alkalizers and nothing. So he said, now let’s go into your bladder and actually see what’s going on.
So I was scheduled for a routine day surgery, walked myself into the surgery. I didn’t know how it would feel. I didn’t, I wasn’t prepared, honestly, I was just a teenager confused by the pain, confused by all these big terms. So I walk myself into the day surgery unit at Upper Hill Medical Center. He went in through the urethra, woke up with a catheter in me.
So that was my first experience on anesthesia. I woke up high talking gibberish for hours, but it was nice to actually feel like someone was actively looking for the cause of my pain. A couple of months later, it’s still getting worse, so I go back to the campus doctor and he refers me to a gynaecologist. So he says, maybe now the problem is not in my bladder, it could be in my uterus. So I remember the day he told me, I think you have endometriosis. I was like, Endo what? And he’s like, Endometriosis. And quickly we need to go into surgery, get the authorization forms. And I’m like, Hold up. who’s councelling me for this? I’m going into surgery. This is the second one.
I don’t even know what you mean. But you know when he’d do the ultrasounds, he’d be like, Chocolate cyst. Chocolate cyst. I’m like, that’s gross. Let’s use other names that are not food related for the cyst, in my ute- in my ovaries. So it was constant ultrasound, in and out of hospital, urine tests. I got, I became a pro at peeing in the bottle, and then now finally the, the surgery was scheduled. So he found the endometriosis on my ovary and my intestine. So was sort of connecting the two organs.
So this explained why I had IBS, irritable bowel syndrome. I didn’t know what it was then. Looking back, I probably had food sensitivities, but I didn’t know my body well. I had never gone off anything to know what was causing the pain. That was very emotionally taxing. I think that’s the thing about endometriosis. It’s invisible. But what it takes from you within is much more than anything else I’ve experienced. I think the hardest part has been knowing that it’s invisible so people can’t see. People can’t see your suffering. Just because I look okay on the outside doesn’t mean I’m not dying on the inside, and sometimes it literally feels like you are dying slowly on the inside.
There are many times I wished like it was overt, like, and I had it on my elbow where I could see look endometriosis. But no one really cares and people are really insensitive. They don’t understand the pain, they don’t understand the psychological trauma. If there’s anything I could change, just have more counseling along along the journey because it robs you of so much.
I think there’s a lot more research that needs to be done, and doctors also need to be more patient and listen. Um, try to hear what the patient is trying to say by not actually saying, because for many women you find out their mom probably had it, the grandma and auntie, but they probably did not call it endometriosis.
They probably just said that time of the month was so horrible. The pain is not normal. The discomfort may be normal depending on how active you are exactly in your lifestyle, but the pain is not normal.
Arti Shah: As you’ve heard from these brave, beautiful, and resilient warriors, painful periods are not normal. So if you suffer from painful periods that stop you from living your day to day life, please seek medical assistance and seek the right assistance available, or you can easily reach out to any of us.
We have many endometriosis support groups that are always ready to help. When you have tried to speak to a medical professional about the pain you are experiencing and it’s repeatedly written off, minimized, or misdiagnosed, it can be easy to lose faith in yourself. However, no one knows your body and what you are going through better than you do, so make sure you understand it and seek a second opinion.
Living with chronic pain can lead to increased feelings of depression and anxiety. Finding small things that bring you joy and pain relief is so important. Whether that means soaking in the bath, allowing yourself to take a day off work or going to a different doctor until you feel heard and understood, because you deserve to have your needs met.
A message for the medical experts. Please don’t dismiss a patient when they come to you because of chronic pain. And do not tell them that it’s in your head. Do not tell them that they should get over it and do not dismiss them. Please believe them. If you cannot find anything, then please refer them because that referral might just save a life and make sure you refer them to the right specialist.
Saving a patient’s life is way more important than the doctor not sending the patient to see another doctor because of ego. Far too many times patients have come to a particular illness due to this problem. It needs to be addressed because people come to doctors as patients with hope, hope of finding what could be going on with our bodies medically.
But when we are dismissed by doctors, you feel a sense of disappointment, and especially when you’re told that it’s all in your head, you start doubting your mental ability. It’s definitely not okay for patients who take their life because they were dismissed by some doctors or emergency units. What is an emergency?
Why are we girls and women dismissed by emergency units because of gynecological issues, which are considered not to be emergency cases? Why is this so? We have lost far too many young endo warriors because of this. This narrative needs to stop. This narrative needs to change. Action needs to be taken now so that no more Endo Warrior has to succumb to this. As a parting shot, here is a piece I wrote for endometriosis. It’s titled “Inside The Invisible Pain”.
Inside The Invisible Pain.
Endometriosis O Endometriosis.
The baggage it comes with due to its misdiagnosis.
The body that burns like fire, feels like the piercing of barbed wire.
The pain is so bad and the adhesions are oozing blood.
Ovaries have cysts and they’re ruptured intestines, you cannot miss.
Arteries and veins are all affected, with most organs looking defected.
This is the reality of the invisible pain, as it showers inside, messy rain.