Updated: Aug 4, 2021
Endometriosis is a chronic condition in which cells similar to those from the lining of the womb grow outside the uterus. It’s mostly found on organs surrounding the pelvis (e.g., the ovaries, fallopian tubes, and bowel). It is incredibly painful, can be life-threatening, is significantly under-diagnosed (the average diagnosis takes 10 years from the onset of symptoms), and is debilitating to women’s lives. Symptoms tend to be a lot worse surrounding a woman’s period but can affect an individual at any point during their cycle. In the UK alone, 1 in 10 women of reproductive age suffer from the condition, whilst 176 million women worldwide are thought to have Endometriosis. It costs the UK economy £8.2 billion a year in treatment, loss of work and healthcare costs - yet, due to an acute lack of research and funding, its cause is still unknown and there is currently no cure.
The only way to get a concrete diagnosis is to have a laparoscopy - a keyhole surgery that confirms the presence of endometriosis cells. Endo cells can then be removed, but more often than not the surgery is unsuccessful in treating pain. Laparoscopies are difficult to obtain on the NHS as all other options must be explored first, and so
often must be performed privately at a high cost. Of course, this has a significant impact on an individual’s mental and physical health.
I sat down with Lexie (22), and Aimee (20), two young women at different stages of their diagnosis to discuss how Endometriosis has affected them, and to learn more about their experiences of being silenced by their doctors whilst trying to get their diagnosis. For both Lexie and Aimee, if it weren’t for their intuition that something was wrong with their bodies, they would be in very different circumstances today. Thank you so much to both women for their openness and honesty surrounding this issue.
Keep an eye out on SHAG’s page as I continue to interview women who suffer from Endometriosis throughout the month.
When were you diagnosed with Endometriosis?
Aimee: I was diagnosed in April 2021, so very recently.
Lexie: I was officially diagnosed with endometriosis in October of 2018.
How difficult was it to obtain your diagnosis?
Aimee: The diagnosis technically took two years, but I’ve had symptoms since I got my first period when I was 12, so nearly 8 years. I had awful periods that would last for two weeks, I couldn’t go to school, but no one did anything about it. I went on the pill when I was 15 so my symptoms reduced, but the issues surrounding my periods should have been flagged up then. In 2019, I had a kidney infection that I was hospitalized for. After that is when the pain properly started. I don't know what would have triggered it, but I went to my GP and they sent me for an ultrasound, and they found a
small cyst on my ovaries and told me that’s what was causing the pain. Then they told me I needed to have a follow-up scan in six weeks to see if it’s got bigger or burst or anything, but it was gone. I still had the pain. I went back to the GP who told me it might be kidney stones. It wasn’t. Eventually, I saw a gynecologist and she suggested putting me on a different pill, which I was unable to do as I get migraines. We then did an MRI, and nothing showed up. She told me that my pain wasn’t a gynecological issue and sent me to a gastro doctor. I went to him, he did so many tests, so many scans, nothing showed up. He told me that it was bad IBS. They gave me these pills, which just made me drowsy, and I couldn’t drink on them because I’m the biggest lightweight ever (and obviously they weren’t working as the issue was not IBS). I got really fed up because no one in my family really believed my pain as I’d had every single test. I was so angry, and I was just in tears because no one believed me. So, I phoned my GP and said I need another referral to a gynecologist. I explained that I’d had every single test apart from a laparoscopy because no doctor wanted to do it on me. The gynecologist agreed to perform the surgery on me on the 15th of April. I phoned my parents, and they were like, why are you putting yourself through an operation? They said nothing’s going to show up, nothing’s wrong with you. But I had it anyway and then I woke up in recovery and I heard them say endometriosis. I knew it, obviously, I didn’t want to have it - but I felt like I had finally proved that I was in so much pain because I had this chronic disease that no one listened to me about.
Lexie: I started experiencing period problems when I went on the pill at aged 16. I went on the pill initially with good periods, and then I had constant breakthrough bleeding - I basically had a period for a year. I kept going back to the GP and they would just say “let your body adjust” - meanwhile I was anemic because I was losing so much blood. I kept having to get iron transfusions, and the GP just said oh, increase the hormone dosage so you don't have the breakthrough bleeding. And I kept doing that and nothing helped. I gave up and decided to get the copper IUD as contraception instead. My first year on the copper IUD was pretty good. They say it can cause heavy periods, but it was fine for the first year. Then my first year at uni, I started to get really, heavy periods - I was bleeding all the time, having terrible pain in my back and other places - not just my uterus. I went to the doctor and they said, look, it's probably the IUD. I had a scan, and they couldn't see anything. I was at the point where I was having only 10 days between periods. I had another scan and they said everything looks perfect, no sign of a cyst, no sign of endometriosis, no sign of anything. The GPs were so casual about it - they give you no guidance and are so dismissive. What I didn't realise at the time is that endometriosis often isn’t detected in scans. Fast forward to the end of my first-year uni and my periods were getting worse and worse. I was having a shower one day and I felt this terrible pain on my left side - I’d never experienced pain like it. I took a painkiller and the pain subsided slightly, and I was due to go to a friend’s birthday dinner that night. I got there and immediately I thought I'm going to need to leave. Luckily, it was right near where my apartment and boyfriend was. I called him and said you need to come get me right now. I knew I had to go to hospital. I got to the ER, it was a Friday night so it was super busy, and they told me that the wait would be four hours. I had to go to the toilet, so I got up and I started to feel really, really dizzy. My boyfriend said I had beads of sweat dripping down my face. I start swaying, collapse onto the floor, and lose all control of my body - not one of my finest moments. There wasn't a gynecologist on call, so a doctor went up with a speculum and told me that my IUD was in place and all my vitals were normal, which was strange. And obviously I'd had a scan a few months before, so no sign of cysts or endo or anything. They kept me overnight and the inner feminist in me was just screaming to be listened too because I knew something was seriously wrong. The gynecologist comes in, looks at me and says this sounds like a cyst rupture and you might need surgery. After a scan, they said it was all fine and they wanted to discharge me. My mum was in another country at the time and was freaking out. She remembered that we had friends who are good friends with the head of gynecology at a private hospital. She called the hospital and said I need the doctor to go and see her immediately - she's not leaving that hospital until we get a second opinion because this is really strange. Anyways, I get to my scan and the sonographer says that I am filled up with fluid. I'm panicking, and this male doctor comes and sees me and he's like hey I looked at your scan - there’s nothing you can do you can go home, it’s a cyst rupture and it will just drain out on its own. I said okay, well, I'm going to wait for this second opinion. He left and I am so glad I didn't listen to him. The private doctor comes in and said I looked at your scans - if you don't get into an operating room now you will probably die. When he opened me up, he said you have stage 4 endometriosis all over your bowel, uterus lining, and ovaries. You have a corpus luteum cyst combined with endo tissue that ruptured on an artery that was flowing blood into your uterus. I had two and a half liters of blood pooling up to my liver. I lost more than half my blood supply, and I didn’t even know. An important point to make is that I'm privileged. I had access to this specialist in the private hospital. My family has friends that know the head of gynaecology at this private hospital. I'm so lucky, most people don't have those connections. If it wasn't for that I wouldn't be here today because I would have listened to that doctor and I would've gone home, and I would have bled out - it's terrifying.
Women with Endometriosis struggle with adverse symptoms - has this affected your day-to-day life or body image in any way?
Aimee: I still have pain every day. When I had the operation, they got some of the endo cells out, so it was better than it was, but it’s still there. For so long I didn’t know what it was. I have so many other stomach issues, like IBS - but I knew that's not what was wrong with me. But now I know that it’s endo my body image has improved a bit,
but it’s definitely still affected.
Lexie: After my emergency surgery, I not only took a long time to physically recover but I had a lot of PTSD. I kept worrying that I'd have another cyst rupture. I couldn't be near the hospital I was treated in. I was very paranoid. I do have to say though the pill has somewhat kept it under control, but it masks it. The pill still has its own side effects like anxiety and moodiness and also really affects my sex drive. Essentially, if you have cyst risk and endo there’s no other option, doctors have told me that I can’t come off the pill. My sense of self and body image has been severely impacted by that and it’s really frustrating. I'm really lucky to have a partner that's so supportive. But it has impacted my identity in my relationship because I have this guilt and frustration because we’re young,
this is meant to be the time that we’re having fun and I do feel hindered by my side effects like sex drive etc.
Do you think there is a wider problem with women’s pain being undermined in the medical profession?
Aimee: Yeah. I feel like so many of my friends have period issues. I always thought that it was really normal to have painful periods. Maybe it's normal to have some mild cramps for one or two days - but having a painful period is not normal. Endo is so hard to diagnose, and you can’t just go to the doctor and say I've got painful periods and
they're like, okay, well you must have endometriosis. So, you're always put on the pill, which has loads of awful side effects. But it can be the only option - either that or you’re bedridden for a week, every month. It's definitely an issue. As a 20-year-old woman, I had to push medical professionals to allow me to have my operation, which is crazy.
Lexie: Definitely. I live in Australia so I can only speak for our medical system here, but I have to say that I've had better experiences with gynecologists. But with GPs, I would say that there is an assumption that your pain is normal. They say well, when you’re young your cycles are normalizing, take the pill instead of actually discussing what it might be and other ways you can deal with it, etc. They just want to jump to the quick fix. I also think there is not enough medical research in the field of hormones and endocrinology for women with gynecological conditions. There just aren't enough people wanting to go into not just gynecology and obstetrician, but the actual endocrinology hormonal side of things that would look at conditions like endometriosis as opposed to just delivering babies. There’s not only a lack of demand of medical students entering these fields, but also there aren’t enough big labs looking into these conditions - we have a lot of research into cancer, cardiology, diabetes, orthopedics, but exclusively women’s conditions are ignored. I think it's also because endometriosis is not
considered to be fatal so it's less a priority to some in the medical community, but it really can be fatal from my experience. And it's a silent disease, not only can you not see it on the outside, you also often can’t see it in scans.
What do you wish you knew before you went through this process and what would you say to someone who is newly diagnosed?
Aimee: Having a diagnosis is good because you know what's causing the pain. But then after that, there's not really much you can do. I had my follow-up appointment a couple of weeks ago after my operation and the doctor basically just said we can't really do anything, just take painkillers when you're in pain. I was like, okay, cool, great.
I would also say you know your body best, and make sure you are firm with your doctors.
Lexie: As soon as you start experiencing problems with your period if you have access to a gynecologist, go. If you are sexually active or just as soon as you start getting a period, go and see a gynecologist if you can. Of course, that is a luxury for a lot of people, and I recognize that. My whole mindset now is when in doubt get it checked and that has been really helpful for me. But of course, again, that's not easy for everyone. And thankfully you do have the NHS in the UK and we have public health care here in Australia, but you don't in the US and there are so many places where you just don't have access. But if you do, please, don't take it for granted. Also, be your own
advocate and don't be afraid to be pushy, you'll be saving your own life.