The Chronic Diaries: The_Endo_Monologues’ Journey with Endometriosis

Where are you based?

The South East of the United Kingdom.

What chronic conditions do you have?

A whole plethora! In order of diagnosis: hypothryoidism, irritable bowel syndrome, endometriosis, vaginismus, PTSD and vulvodynia. My endometriosis is definitely the most debilitating; endometriosis is a condition where tissue similar to that found in the uterus grows elsewhere in your body.

Vulvodynia is chronic pain in the vulva, the area on the outside of a woman’s genitals. It is usually described as a sensation of burning, stinging, itching or rawness. Vulvodynia is defined as pain that lasts more than three months and doesn’t have a clear identifiable cause, such as an infection or a skin disorder. This pain may cause sexual dysfunction and it can negatively impact a woman’s quality of life. There are many suspected causes, including inflammation, injury to nerves in the area (neuropathic problems), hormonal factors, musculoskeletal problems and genetic (inherited) factors (CleavelandClinic, 2020).

Vaginsmus is vaginal tightness causing discomfort, burning, pain, penetration problems, or complete inability to allow vaginal penetration. This penetration may include sexual intercourse, certain medical examinations and tampon use (Women’shealthclinic, 2020).

Hypothyroidism (underactive thyroid) is a condition in which your thyroid gland doesn’t produce enough of certain crucial hormones (MayoClinic, 2020).

Irritable bowel syndrome (IBS) is a common disorder that affects the large intestine. Signs and symptoms include cramping, abdominal pain, bloating, gas, and diarrhea or constipation, or both. 

What symptoms did you deal with before you were diagnosed?

So, the problems pretty much all began when I started my periods at age 11. I would have ridiculously heavy (I would soak through a tampon and a pad within an hour), excruciatingly painful periods that lasted 2-3 weeks at a time which left me bed bound. I was always exhausted and as I got older, I then developed pelvic pain, back ache and it became painful to have sex.

How were you diagnosed? What was your journey to diagnosis?

As mentioned above, I started my periods when I was 11 and I first went to the doctors about my problem periods at 14. I somewhat expected to have abnormal periods as they run in the family (my grandmother, mum and aunt all had similar issues) but when I started to miss school because of them, my mum said enough was enough and my doctor put me on the contraceptive pill which I stayed on for over a decade.

During my school exams I found that I was permanently tired despite sleeping well and at 16 I was diagnosed with hypothyroidism. My doctor explained that this was also probably the cause of my problem periods and I was able to manage them with the contraceptive pill and my hypothyroidism medication.

When I was at university my periods started to become heavier again to the point that I found myself struggling to attend classes whenever I had it. However, it wasn’t until I was 24 that I took myself back to the doctors. By this point I had developed pelvic pain, a constant pins and needles sensation around my ovaries and I couldn’t have penetrative sex as it was too painful.

September 2015, I made an appointment to see my doctor whose first response was to say that ‘a lot of women who are promiscuous have issues with their periods.’ At no point did I talk to him about my sexual history and even if I was promiscuous that has no bearing on my health. Despite my insistence that I had a recent check for STIs he still booked me in for another. Unsurprisingly it came back clear. I was phoned with the results by a different doctor who hadn’t bothered to check my medical history and then had to pretty much demand for further investigation to find out what was causing my problems.

I was referred for a trans-vaginal ultrasound and on Christmas Eve of 2015 I was left a voicemail by the first doctor to tell me that everything looked fine and once again I resigned myself to the fact that I just had heavy periods and my symptoms were a side effect of that.

In March 2016 I went back to the doctors for another issue and asked for clarification about my test results. My doctor (another different one) explained I had a thickening of the uterus and that was what was causing my problems and when I asked, I was also told it would not affect my fertility. So, once again I resigned myself to the fact that I just had heavy periods and my symptoms were a side effect of that.

In June 2016, I went to the doctors again to get a prescription of my contraceptive pill. When talking to the nurse she asked if I was on it due to my suspected endometriosis. I politely asked her to repeat the question and then told her I had absolutely no idea what she was talking about. She sat and went through my file, explained what endometriosis was and told me that the doctors had suspected I had it for over 6 months, but nobody had told me.

I did put in a formal complaint against my doctors but most importantly I was immediately referred to a gynaecologist and in August 2016 I had a laparoscopy. My gynaecologist found endometriosis growing on my bladder, bowels, ovaries, uterus and on my Douglas pouch, I was also diagnosed with adenomyosis and had a Mirena IUD inserted at the same time.

For the most part, things were fine for me after that. It didn’t hurt to have sex, I no longer had periods and life felt normal for once. However, at the beginning of 2019 it started to hurt to have sex again, I would bleed and my vulva would burn. I went back to the doctors and was once again referred back to a gynaecologist. In February 2019 I was diagnosed with vaginismus, vulvodynia and PTSD.

Last year I started to experience back, hip and neck pain again as well as constant bloating, pain when going to the toilet and the pins and needles sensation had returned to my pelvis. In February of this year I was referred back to the gynaecologist who did my first laparoscopy and after an MRI it’s suspected that my endometriosis has grown back on my ovaries, bladder, bowel and ureter tubes. I also have a 3cm cyst on my left ovary. As of now, I’m waiting for a second laparoscopy to be scheduled.

Did this journey have an impact on your daily life?

Absolutely. I missed days of school, university, I’ve had to take days off work due to the pain and other times I’ve pushed so hard that I’ve ended up bed bound for weeks at a time. I’m lucky that I’ve always worked for mostly understanding companies and last year I went part time which has definitely helped.

Are you on any medications?

I take Levothyroxine for my thyroid, I have the Mirena IUD, Amitriptyline to help with my anxiety linked to my vaginismus, I’m also currently on Zoladex injections to help manage my endometriosis pain and Tibolone (HRT) alongside that until I have my operation.

What side effects do you encounter, if any?

The Zoladex makes me have a higher number of hot flushes but I’m used to that as I’ve always been prone to them because of my thyroid.

What symptoms of your illness do you deal with on a daily basis? How do you deal with these?

I have chronic back ache which often radiates down my hips into my legs or up my spine into my neck and shoulders. I try and manage this as holistically as possible, using mostly CBD products or topical heat/freeze patches. I’ve also recently started having deep tissue massages which has helped a lot too.

What occupation do you have?

I’m a secondary school (ages 11-18) teacher. As aforementioned, I’m lucky to work with understanding colleagues but I do have days where I have to restrict myself to not moving around the classroom or take over the counter painkillers to deal with any pain I’m experiencing.

How does your illness impact you mentally?

Some days I really struggle; I often have mood swings where I feel incredibly low, emotional and vulnerable and I shut myself away, but I also have moments where I feel incredibly angry. Living with a chronic illness is difficult, especially when you’re around people who don’t understand and don’t think people realise the impact it has on your mental wellbeing and health.

How do you keep motivated dealing with your chronic condition in your daily life?

I try and focus on the positive things in my life and remind myself that it’s okay to have bad days. A huge factor for keeping myself motivated is my Instagram and blog. I’ve found that sharing my day to day thoughts and feelings has had a really positive effect on my own well-being and knowing that I’m not alone in my experience makes me continue to share my journey so that others know they’re not alone too.

Is there any advice you would give to people who are on their chronic illness journey?

Trust your instincts about your body, nobody knows it better than you. If you’re met with a medical opinion you don’t agree with, you are entitled to a second, third or even fourth opinion.

How do you encounter people having your illness? Do people understand? Are they ignorant?

It’s a real mixed bag, in the past I’ve had to deal with people thinking I was exaggerating what I was going through, other people genuinely want to learn and understand what I’m going through. In terms of ignorance, you’ll have people offer you unsolicited advice or try and compare your story to someone they know or something completely unrelated. I’m pretty blunt and will challenge false information or say that what I deal with is nothing like that. If I’m asked an inappropriate question (usually related to my reproductive plans) I’ll respond by saying that it’s inappropriate. If anyone gets offended by that, then that’s on them.

Is there anything you want to say to these people? Or the general public who do not have a chronic illness?

I think people just need to be respectful. For the most part I will openly talk about living with chronic illness but if I say I don’t want to or I’m not comfortable answering a specific question, then respect that. There also needs to be a better understanding that I can quickly go from a good day to a bad one and that it’s not personal when I have to cancel plans. Ultimately, my health comes first. Just because you might not see that I’m in pain, doesn’t mean you have the right to judge me.

Chronic Exposure Network