Living with Endometriosis: An Interview with Jeanne Sutton
Endometriosis is a very common condition amongst women. Between 2 - 10% of us are affected by it. We've probably all heard the name at one stage or another, but so few of us know much about it or what sufferers go through. In fact Kathleen King, Director of Endometriosis Ireland was kind enough to get in touch to let me know that my original description of Endo in this blog post was not entirely accurate, which just goes to show you the complexity of the condition. It's probably best if I let Kathleen handle this one:
"Endometriosis is defined as the presence of endometrial like tissue found outside the uterus. The endometrium is the lining that is shed during a period. Unfortunately, endometriosis is not as simple as rogue endometrium and this subtle but important fact is one of the biggest hurdles we face in educating women and their caregivers about endometriosis.With regards to treatment, medical treatments do not treat endometriosis, they only manage the symptoms. The only treatment that shows a significant recovery rate is excision surgery. Excision surgery is carried out by skilled surgeons. Hysterectomy and pregnancy are common old wives tales for the treatment and cure of endometriosis, neither are applicable."
It can cause great pain and discomfort and in some cases have huge impacts on a person's physical and mental well-being. Jeanne Sutton, Senior Editor at Image.ie, was kind enough to share her experiences with me.
One of the most common things I’ve read about Endometriosis is that many people who have it don’t realise, because they assume the severe pain they are experiencing is what most women experience. At what age did you first start thinking that perhaps what you were feeling was more than just regular period cramps?
When I was a teenager I got cramps but never on a horrible scale. Another girl could barely sit down straight and would spend a day or two every month in this special sick area we had with a constantly topped up hot water bottle. I remember thinking at the time she should get over it, but now when I see a woman owning her hot water bottle I cheer inside.
In college my period pains got steadily worse and peaked when I did two semesters abroad in Toronto. I wasn’t going to classes every four weeks and spent a lot of my money on American candy from the vending machine in my building. Whenever Irish people slag Hersheys or Reese’s Cups I do simmer.
Bad period pains with endometriosis differ for every woman. Some never experience these powerful cramps, only finding out they are afflicted when they struggle with their fertility, or are getting surgery in the area for another issue.
In general, the pain goes beyond muscle ache and bloating. It feels like I have a magnet down there pulling at that entire part of my body, i.e. my vagina. I’m nauseous and just want to curl up until my body gets so used to the pulsing pain so it thinks this is normal and falls asleep.
One day in Canada I sort of collapsed. I was in my small one-bed apartment and could barely move. I was watching something on my laptop when I decided to stand up and head to the campus for class or to the library. I forget, I ended up just slamming to the ground, fainting. I was clawing myself up onto a chair from the floor. When I went to the doctors, the usual 10 minute journey took me about an hour and a half. The doctor said he suspected endo and would get started on some tests. I’ll never forget that he just looked at my chart and went “Yeah, you have mechanical problems”, or something like that. I laughed and to this day I think of my body in those terms.
The next day I got a bus for over five hours to Montreal for a few days holiday because when you have period pains on that scale, you’re as hard as nails. My pain tolerance is very good, I think, if you can describe such a thing a ‘good’. I’ve never had to leave work because of the pain. The week of my period is more like my body stewing with too much going on. My gut is all over the place. I get headaches. No item of clothing is worn twice in a row because there is no such thing as a perfect temperature. I hate my train commute with a stronger passion than usual.
"If you find your life is being affected by your period on a scale that is holding you back from living a 100% life, go to a doctor, and make sure they listen."
Recognising the pain as something serious is this very strange, empowering process. In school and in college you’re never told this shouldn’t be happening. Every woman feels like shit when she’s menstruating. Entire sitcom jokes have been built on the groggy bitch phenomenon. I think that I’m a very I’m-entitled-to-feel-like-this person to begin with, so I was a bit of a dose for GPs to deal with when I got the inkling my condition was a proper thing, with a name I still struggle to spell. If you find your life is being affected by your period on a scale that is holding you back from living a 100% life, go to a doctor, and make sure they listen. If they don’t, go home, drink a glass of something and start messaging your female friends for other GP recommendations.
Can there be any other symptoms along with the pain?
Sex can hurt! This may depend on your partner because we’re all unique sexual snowflakes, so shop around I guess. However, for some women this doesn’t change – which sucks and means you just have to be creative. Pain during sex coupled with intense period pain is a pretty good indicator you may have endometriosis.
Other symptoms can be a difficulty to conceive – some women think that bad period pains are just a fact of life, and some doctors and nurses encourage this sort of acceptance. So when these women get round to having babies and aren’t getting the test results they want, endo can be the reason. A lot of people associate endo with infertility. When I tell people I have endo, they jump in and tell me their mom or someone they know has it and ended up having a barn of children.
While there are statistics that indicate endo can be a barrier for some women to concieve, there’s a lot of technologies out there than can help. I was at the endo information day a few months ago and an IVF specialist was positive about most women’s chances. Also, a lot of people will tell you to try the alternative treatments before seeing medical specialists.
I’m 26-years-old so the baby making stuff isn’t on my immediate horizon – I ignore all the headlines that say I should have my family sorted already. As my friend Neasa says, “What would I feed them? Toast?” I have met women struggling to have children and under a lot of stress because of endometriosis. There are links, but I really hope that scientific breakthroughs will help women who want children become moms – either through surrogacy or assisted fertilisation. I read most articles about IVF I come across, because this is all in the back of my mind.
What kind of effects has Endo had on your day to day life? Has it been very disruptive to your work, social, and personal life?
"My work itself wasn’t jeopardised. More my confidence."
To be honest, endo hasn’t affected my work. And I’m not just saying that because everything you share online is essentially LinkedIn lite. I write for a living, so I’m not standing on my feet all day like in a shop or restaurant. Even when I had a period that was over a month long last November, my work itself wasn’t jeopardised. More my confidence. I felt very unattractive and grey. My body was sluggish. I put on weight when I menstruate, so I just felt off and tended to wear loose clothes.
My doctor changed up my pill routine after this as my body was so fed up and gasping for a reprieve. I now only get my period about four to five times a year. I still get an intense period, although I’m in a state of disbelief that I was okay with this happening every month.
My social life is a little bit more difficult. One of the major side-effects of endo for me is fatigue. I get very tired very easily. I’m never going to be the last one standing in DiFontaines on a Saturday night. When I’m wrecked I just go home.
My boyfriend and I were together a few months when our clashing energy levels on nights out became an issue so sometimes we go home at different times on major nights out. I don’t like talking about my personal relationship, but I think I’d be doing a disservice to any readers if I didn’t admit that endometriosis and its accompanying fatigue has sometimes been the cause of tense-back-of-the-taxi ‘conversations’.
I suppose in a way my endo has made me a little bit selfish, if that is the right word, and more sure of what I want to do when it comes to hanging out. I don’t get jealous of people for going on the tear all weekend. I tend to schedule my social life during the week. When I’m proper flat out tired I take to my bed like a Victorian lady and plough through novels.
The other common thing I’ve read is that it can take a very long time to get a diagnosis, because the symptoms are not specific enough to make a diagnosis based on them alone. What was your experience?
Lucky. As I said earlier it wasn’t until college that my periods got awful and I had health insurance in Canada so my access to a doctor was quick and affordable. I was in safe hands and when I got back to Ireland it was just paperwork to get surgery. It still took some time, about 4/5 months between my return from Canada to undergoing surgery on my left ovary.
"Some surgeons will laser any endometrium they find. Others might wait for another procedure in case there is an issue."
The great thing about my surgeon was at the end of our first consultation he asked about the book in my handbag – life hack: if you have a condition that necessitates a lot of doctor appointments, develop a reading habit. It turns out his daughters loved the same author as me: Meg Cabot. I very enthusiastically started telling him how Meg had only recently found out she had endo during an operation to remove one of her ovaries. That is what you call a sign, I believe.
After the surgery I wore pyjamas for two weeks and watched Mona Lisa Smile in my college apartment. My best friend and flatmate was so good and arranged for loads of people to call over and have tea and soup with us. I have two tiny faint scars on my stomach and above my left ovary, where the laparoscopy and laser was performed. A laparoscopy is the only way you can diagnose endometriosis. It’s minor keyhole surgery. Some surgeons will laser any endometrium they find. Others might wait for another procedure in case there is an issue. For instance, it can attach itself to organs and might need more sophisticated surgery.
What kinds of treatment are available out there for Endo sufferers?
Contraception is the most common ‘solution’. This works fine for me at the moment. I did trial a few pills until I settled on my current one, which recently went up in price. Thanks Big Pharma!
I know that in the States and Australia there are other drugs on the market that help women with more advanced endo. A hysterectomy is often cited as the most extreme solution. I’m not a medical professional so feel a little bit uncomfortable broaching the pros and cons of certain treatments.
Some people will go on about diet, but I’m a bit sceptical at how elimination is being seen as the answer to all the problems. I still eat red meat – doctors orders thanks to my always shoddy iron levels – and had an intern in work once try to take me to task for announcing I was going to grab a burger for lunch. You get a lot of unsolicited lifestyle advice, I find.
You recently attended the Endometriosis Association of Ireland’s information day. What did you learn on the day, and would you recommend the event next year?
I didn’t know anyone there but you just turned to whoever was nearest and started bitching about periods. It was like making temporary gal pals in a night club toilet, only sober. I met one woman who had only found out she had endo when attempts at a having a second child weren’t working out. Another person was just always crippled with pain and was trying to move jobs as she was up the walls. Boyfriends and partners were in attendance and there was loads of herbal tea choices.
I was pleasantly surprised to see ‘professionals’ embrace alternative treatments. I tried acupuncture the summer after my surgery and it eliminated my fatigue for a while. I’ve also started incorporating aromatherapy into my routine to help me unwind. A physio spoke about how certain stretches and exercises helped. I’m trying to fit in massages more – I had an intense one in Dunboyne Castle a few months ago and it really helped with my discomfort levels. I cried at how good I felt during and after.
And finally, if someone reading this feels concerned that they may have Endo, what would your advice be to them?
Be a bitch. If a GP tells you to cop on and make like the rest of womankind who puts up with cramps every month, take your business elsewhere. If someone is rude to you when it comes to matter of personal health, there is no high road to be taken. You have to be demanding. GPs reading this probably think I’m their idea of the worst patient ever, but when a doctor operates a pursed lip in my vicinity, I get riled up. The amount of times I’ve said “I’m not making this up” in the past five years is just plain unacceptable and makes inner me shake with this weird mix of embarrassment and indignation.
Also, read the recent Guardian series on endometriosis. It was such an out of the blue joy to see an internationally respected publication tackle the subject. Women’s magazines have been doing a great job for years – Cosmo was the first place I read about endometriosis before I had any inkling I had it – but I think the Guardian gave it such a real world spotlight. There are first person accounts, myth-busting, articles on insurance and pharma – every entry is valuable.