March is Endometriosis Awareness Month so we thought it fitting that today we expand our knowledge on what Endometriosis is and the common symptoms associated with it.
Endometriosis (or Endo for short) is caused when bits of tissues that are similar to the lining of our uterus, grow in places that it shouldn’t, usually outside of the womb. This tissue has been found growing in all parts of the body (lungs, heart, brain but mostly commonly in the abdominal area) and if it's not managed or treated, can be fatal.
What is it?
Endometriosis is an inflammatory condition that is ignited by hormones (that goddamn menstrual cycle again). That's why people typically get flare-up’s before, during or after their period. But depending on where the endometrial tissue is growing, they can experience chronic pain all month long.
Endo in Ireland
Endometriosis is very much under-diagnosed in Ireland with an average diagnosis taking 9 years between reporting symptoms and receiving a diagnosis. Oh yes, you read that right, 9 YEARS!!
Most people with symptoms get prescribed the pill as a tool to manage and reduce their symptoms. But, and there is a big BUT here, endo symptoms are sparked by our hormones meaning the pill will only mask the problem until we stop taking it. That's why it's common for women in their late 20s / early 30s who stop taking the pill to start experiencing symptoms and begin their journey to receiving a diagnosis.
So, what are the common symptoms of endo?
- 1st and foremost pain – can be in the lead up to, during or after your period (with endo, it is more so pain than heavy periods that is experienced)
- Pelvic pain at any time in your cycle
- Cramping and swelling
- Pain during sex
- Digestive issues (Similar to that of IBS)
- Pain passing urine or with bowl movements
- Bleeding between periods
Although we can look out for symptoms the only way to receive a definite diagnosis is through laparoscopic surgery (or key-hole surgery).
Not many people know this, but there are actually 3 types of Endometriosis; deep infiltrating endometriosis, endometrioma’s (chocolate cysts) and superficial endometriosis of the perineum- all very medical and scary terms that mean nothing to us mere mortals, but worth mentioning.
We won’t delve into each type today as we don’t want to over complicate things but your consultant should guide you through the meaning of each and what you need to know specific to your condition.
Women usually present to their GP for 2 reasons, they either have pain and want to find out what is causing it, or they are trying for a baby and it isn’t happening. In the latter scenario, approx. 50% of women will go on to receive an endometriosis diagnosis. It’s important to note that chronic pain does not mean severe endometriosis. Some women have no pain or symptoms and may find they have the most severe form of Endometriosis. Keyhole surgery is key (excuse the pun) to understanding your condition as everyone is different.
Research has suggested that in some cases endometriosis is genetic, so it is nothing we have “done” to cause it (leave the self-blame at the door ladies).
When we think about what is normal and what is above normal, we need to remember that period pain should be mild in nature and should not stop you living your life and getting on with your day. Everyone’s “normal” is different, you know your body better than anyone, and while some people have a low pain threshold others have a high one. If the pain is crippling or severe FOR YOU then no one can tell you otherwise, it's your pain so although we hate to say it, you must be your own self advocate (did we mention it takes 9 years to get a diagnosis!).
We were lucky enough to sit down with someone who suffers from endo and asked them a few questions you may find helpful.
1. When did you begin to realize you may have endometriosis?
About 18 months ago after a consultation with a nutritional therapist who specialises in women’s health/hormones. She was the first person to ever mention endometriosis, before that a potential PCOS diagnosis was thrown around but nothing concrete. After coming off the pill with the support of said therapist, I changed doctor and went to get my bloods done. This new doctor was the 2nd person to ever mention endometriosis and completely rule out PCOS.
2. How long did it take for you to be diagnosed? As is with so many people, was it a difficult and long process to get diagnosed?
In the end, the diagnosis was not difficult, but the process of being heard was difficult.
I had extremely painful periods from the age of about 13, I was put on the pill at 14. At 19, I was sent to a consultant for PCOS, that was inconclusive so I was put back on the pill. I made the decision to come off the pill and get to know my body and find a root cause. After my periods got worse I went to a nutritional therapist who I mentioned above, then to a doctor, then to a consultant. Once I went to the doctor, because I have private health insurance, the referral to a consultant was relatively quick. I am now 28, diagnosed at 27.
3. In comparison to other countries, Ireland has a particularly long waiting time and low diagnosis rate. How do you feel as a woman in Ireland with this condition?
I feel unheard. I was left to do the research myself, thank god I found the nutritionist therapist when I did. Otherwise I could be in my early thirties, coming off the pill thinking I would get pregnant immediately and be facing a diagnosis. Instead of figuring out my cycle at a young age and trying to find the root cause, the pill was used as a quick fix. The pill was used to mask the problem, “out of sight out of mind” springs to mind. What I have found is that a lot of GP’s talk at you, they don’t want to collaborate and find a problem, they can be very dismissive. I also find that finding the right GP is really difficult but it is worth it because you need the GP to give you a referral to a consultant. They are the gatekeeper between you and the consultant. If your GP doesn’t believe you, plays down your pain to general period pain, then you may not get the care you need.
There is not enough importance placed on understanding or improving women’s health in Ireland. You have to be your biggest advocate, and that’s not always easy.
4. Since being diagnosed, do you feel as though you’re getting enough support and information from your health professional(s)?
Yes I feel supported, but a lot of my information comes from educating myself through blogs, podcasts etc. A lot of the time you are spoken at, you are overloaded with information and it can be hard to digest
5. What kinds of endometriosis symptoms did / do you experience?
When I was a teenager, I had heavy painful periods so I would have to leave school for 1-2 days a month. I wouldn’t be able to move from the couch and would count the hours and minutes until the next time I could take nurofen plus (panadol simply wouldn’t do, I might as well be eating jellies for the relief it gave).
Since coming off the pill, my period is irregular and light (maybe 2 days at most). However, day 1 of my period is debilitating. I have hot and cold sweats, tired, severe cramps, diarrhea and sometimes vomiting. Similarly, I count the minutes to when the nurofen will either work, or when I can take them again. Once the nurofen has kicked in, the symptoms subside but the uneasy feeling/bloating is always there. Hot water bottle’s are the most underrated household item. Without it, I would not get through my period. My life stops for that one day.
6. How does the pain you experience impact your life? What is it like living with this condition?
You learn to live around it. I now know my symptoms so I can manage my life around them. I know what to expect. The pain cannot be understood only if you go through it yourself. I have quite a strong pain threshold but every time I get my period, I dread what comes with it.
I now have pain relief in my drawer at work, in my car and at home. If I go away for a night, I bring it just in case. I ensure that if I do get my period, I am prepared. You go about your day as normal but knowing that very few people truly understand the impact getting your period can have on your ability to get through the day. If you complain, it is usually met with a judgment that everyone has period pain, it can’t be that bad, and to basically get over it.
7. What is something you would like others to know / understand about the condition?
I would like people to know that counting the minutes to when you can take pain relief again is not normal. Being in extreme pain during your period is not normal. Taking the pill for the purpose of solving your menstrual issues is not normal.
Question your doctor, you are paying them for a service, so make sure you get the advice, time and support you need.
For mothers, I would advise that if your daughter is a teenager and she is put on the pill for issues with her menstrual cycle, do not accept this as a solution. Teenagers should learn their cycle, it may be painful to begin with (our hormones don’t actually settle down until we are between 18-22, so they are bound to bring some discomfort until then).
If you don’t find the root cause of the problem now, you will have to find the root cause at some point in the future. All it is doing is kicking the can down the road. It is so much better to have a diagnosis or a reason why now so you can be prepared whether that is starting a family early, egg freezing, surgery to remove adhesions and reduce pain etc. Knowledge is power!
8. What do you think we can do to raise more awareness of endometriosis and make sure people who think they have it are being heard?
More research into the condition is needed, it is an inflammatory condition so it has the potential to impact every part of the body making it not just a fertility issue but a whole body issue.
Don’t turn endometriosis into a buzz-word, educate our teenagers. Make sure girls understand the condition (some might identify with the symptoms and get checked) but also educate the boys so that they grow into compassionate individuals and foster a great workforce in the future. Fertility and periods should not be a taboo subject for any gender.
I mentioned that I found my nutritional therapist on instagram. Usually social media gets a bad rep, but it was my guiding light and still is. I follow so many doctors, consultants, therapists on Instagram that are so full of knowledge and are willing to share that knowledge for the greater good of helping women.
Finally, a support group sounds dramatic, but I think it would be really beneficial to link women with the condition together by county. As I mentioned, it can be quite lonely when no one truly understands the pain. But it would be hugely beneficial for understanding other people’s experience and to hear positive stories about how they got through it and have come out the other side. So much is unknown when you are in the early stages i.e. diagnosis, surgery, fertility, impact on menopause etc.
We want to give a huge thank you to the lovely person who allowed us the ask them these questions. We hope their insight into their own experience with endometriosis may help others to determine whether they may have the condition.
What can we take away from all this??
So, if you're experiencing severe pain around your period, missing work, unable to participate in daily life, counting the minutes until you can take your next pain killer or have a path worn to the kitchen from filling your hot water bottle, just know that this is not normal and should be raised with your GP. Do not brush these symptoms under the metaphorical “it’s just my period” carpet.
To keep in theme with Endometriosis Awareness Month our next blog with focus on differentiating between Endometriosis and Adenomyosis so watch this space!