Having had a few friends ponder the thought as to whether they may be suffering with something called ‘endometriosis’ has brought to light the confusion surrounding this condition. The symptoms of endometriosis can vary. Some women are badly affected, while others might not have any noticeable symptoms. It can be difficult to diagnose endometriosis because the symptoms can vary considerably, and many other conditions can cause similar symptoms.
The NHS states, “Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.” Endometriosis can affect women of any age and it is a long-term condition that can have a significant impact on your life, but there are treatments that can help.
With endometriosis being such a common condition yet incredibly taunting and painful at times, I thought it would be better to learn first-hand about it by interviewing those that have been affected. Two participants came forward to speak out about their experiences, which Shit Happens is incredibly grateful for. Participant one wants to remain anonymous so we shall call her ‘X’, and the other participant is called Sarah Rose. If you think you may have endometriosis, hopefully reading these first-hand experiences will enlighten you more on what it is, what the symptoms are, and how you can go about dealing with it.
How Long Have You Had Endometriosis For?
X: “I’ve had endo since I was 17, so eight years.”
Sarah: “I have had endometriosis symptoms since I was 8 years old – 21 years ago. I got diagnosed in July 2019. My symptoms eased age 12-18 as I developed anorexia to manage the pain. Upon recovery at 18 the symptoms returned.”
What Symptoms Did/Do You Have?
X: “The symptoms I had were extreme pain during a period, and I always have period cramps even when I’m not due on. I probably have one or two days a month where I don’t have cramps or back pain. I have painful cramps around the time of ovulation too.”
“I also suffer from extreme constipation (which I’m that used to now, it doesn’t seem extreme anymore). I can go 8-11 days without going, and then I get awful back pain and tiredness etc. I have to take daily sachets of ‘macrogol’ to help (and it doesn’t). When I’m due on, I get kidney infections due to blood in my urine. I’m constantly bloated and look five months pregnant at around week two of my cycle. I get pain during sex at around week two and three as well. Oh, and the biggest issue is that I’m also infertile due to endo and some other reproductive illnesses.”
Sarah: “My main symptoms are: bladder pain, pressure, urgency, frequency, bowel pain, constipation, diarrhoea, swollen painful belly, nausea, vomiting, fatigue, painful orgasms, painful sex, rectal bleeding, rectal pain, painful periods, and clots in periods.”
How Long Did You Have It/ Notice Symptoms Before You Got Diagnosed?
X: “ I noticed a real change when I became sexually active at around fifteen, and when I started taking the pill. I took the pill for six months and that did absolutely nothing. I had the depo injection for six months and again, that did nothing and I bled heavily for six months. Since then I have never been on any other contraception, as I knew from that moment that I would never naturally get pregnant (weird, right?) But I was diagnosed at seventeen when my periods started to become irregular.”
Sarah: “From onset of symptoms to diagnosis as an adult, 11 years, but since my first symptoms began as a child, 21.”
Has Endometriosis Ever Affected Your Mental Health?
“Any form of chronic pain will impact your mental health, especially when you are not believed for decades.”
Like anything that makes life more difficult, it’s not uncommon for it to have an impact on your mental health. Especially for women who want children, being told that may not be a possibility for you can be harrowing on your mental health, but there are other options available.
Further according to the NHS, “Endometriosis can cause fertility problems. This is not fully understood, but is thought to be because of damage to the fallopian tubes or ovaries. But not all women with endometriosis will have problems and will eventually be able to get pregnant without treatment.”
X: “I would say it did affect my mental health yes as I’m always in pain and have been for ten years, and people just don’t understand. They just assume it’s ‘normal period pain’ but actually what is normal period pain? Everyone’s periods are different and men have a completely different view on it. Women are sympathetic, but again, you don’t know how painful someone’s period actually is. The last three years I’ve had awful pain in my hips, thighs and knees when I come on my period and it’s awful walking around.”
“Even though I knew from around sixteen I wouldn’t ever have kids naturally, when I first got told it would be a ‘struggle’ it does mess with your head because you get the whole “what sort of woman am I if I can’t do the only thing a woman should do” but I pushed it to the back of my mind because I was only a kid and it didn’t affect me. As I’ve grown older, I’ve seen my mates having kids, abortions, and going into care and it sort of fucked with my head as I knew I would never get that. It was only when I’d met my long-term boyfriend that I thought well this is something we could look into.”
“I was also really upfront about it as well, so when we first went on dates I thought I’d better tell him now that I can’t have kids instead of wasting our time and he was fine with that. He said he did want kids and that there was medical help for it, or adoption which was really refreshing to hear. So whatever bad news I’ve had since then, hasn’t affected me that much, as I know I have his support.”
“I just get super worried in case it upsets him, and I worry about how it’s affecting him knowing that we might never have our own. As now we have been together years, have a mortgage and a dog but we are about to start IVF – so hopefully a baby soon!”
Sarah: “Hugely. From developing anorexia as a teen, to long bouts of hopelessness, depression, suicidal attempts and self harm. Any form of chronic pain will impact your mental health, especially when you are not believed for decades.”
Have You Ever Had Surgery to Cut Away the Endometriosis Tissue?
There’s currently no cure for endometriosis, but there are treatments that can help ease the symptoms. One of the treatments is cutting away the endometriosis tissue, both participants had very different experiences.
X: “I had surgery to remove endo from my urethra about three years ago. It made my life hell, and it must have been there for the previous year or two. I started suffering badly with UTI’s, kidney and bladder infections. As I wasn’t passing enough urine, or it was stupidly painful and the doctors would just say it was “cystitis” or I “wasn’t drinking enough water” – even though I was drinking 2-3ltrs a day. Currently I’m waiting to see if it has spread to my bladder and bowel, but unfortunately tests couldn’t go ahead due to Covid!”
Sarah: “I’m going to assume this question is in regard to excision surgery? During a laparoscopic surgery there are two removal methods: excision or ablation, excision is the gold standard as it cuts out the Endo at the root, whereas ablation burns the top layer leaving the rest of the disease behind. I was lucky to be able to access excision, but I had to travel to England as accessing excision is limited and largely depends on what country you live in. It is a postcode lottery and many people cannot access it and have to travel or go private for care. It should be available to everyone who wants it. It shouldn’t be a privilege, it should be the standard. I hope one day all patients can access excision if they want to.”
*Be Careful of Misinformation*
When asked if there was anything else they would like to add, Sarah added, “Endometriosis is often referred to as the endometrium or womb lining, which is incorrect. This misinformation is incredibly dangerous as it pushes the idea that if you stop the periods you stop Endo (WRONG!). It also suggests that only those who menstruate can have Endo when we know it can occur prior to your first period and persist after the menopause, you can have Endo without a uterus. Definitely check out @endogirlsblog @endoireland @endoawareni and @centerforendocare to learn more about Endo. Remember that you deserve the best care and a doctor who listens and respects you and your care choices. You are the decision maker in the doctor patient relationship and it is always your journey your way.”
For those who think they may have endometriosis, I hope this article has helped to answer some questions and for those who are just curious – I hope this has helped to educate you more on the matter of the realities that people face when living with endometriosis. Thank you very much to both participants, and if there is anything anyone would like to talk to Shit Happens about, send an e-mail over to firstname.lastname@example.org and I would be happy to talk.