Being a mother is supposed to be one of the best journeys in the world, one that I hope I get to take soon. But what happens when, before you even try to be a good mum, you are told you may not be able to be a mum at all?
I suffer from endometriosis and have embarked on a whole other journey. Growing up in a nice family, I always planned to have a family but when I was diagnosed at 19 I had to face the reality that I may never be able to have children. Since, I have launched myself into understanding the disease and feel there are some basic things every woman should know.
1. Endo..me…what? What is endometriosis
Endometriosis is a reproductive disease. In simple terms, the inside of your womb grows somewhere outside of the womb. This means every time you have a period, those bits of endometriosis also bleed into the whatever space they have lodged into. This can cause lesions, cysts, adhesions and general bloody bits of tissue inside the body that can get sticky. Typically, these bits of tissues are in the pelvis and abdomen so patients may find that their organs can stick together eg bowels to uterus, ovaries to the back and this can be one of the causes of pain.
2. What are the symptoms?
Endometriosis often causes pain; in the pelvis, in the back, during monthly periods, during internal examination or during sex, but it can also cause infertility. Pain can also occur due to the formation of adhesions which essentially acts like blue-tack inside of you and pulls areas that aren’t meant to be pulled. Treating endometriosis usually focuses around managing these symptoms and their pain.
3. It’s not your fault, endometriosis can happen to anyone!
Historically there has been an idealogy that endometriosis occurs to Caucasian women over 30 who have put their career before their fertility, not allowing the body to have a break from periods. This is now known to be false.
Endometriosis occurs in 1 in 10 women and can happen to any race or ethnicity and to any women from puberty upwards. As it is not known how endometriosis is caused, it is not known if it is present in children. There is some evidence showing a hereditary link for endometriosis and however there are no known causes for endometriosis or things you can do to prevent you. It is just part of who you are.
4. Yes my periods hurt but isn’t that normal?
Yes, periods are uncomfortable and are not the nicest thing to have to go through each month however they should not be agonising. If you find that you are struggling to cope with daily life throughout your period, having to take time off school/work each month or are doubled over and brought to tears, please seek advice from your GP who will refer you to a gynaecologist if needed.
5. Does endometriosis mean I can’t have children?
Infertility, classified as not being able to conceive after trying for 2 or more years, affects around 1 in 7 couples. Endometriosis is one of the biggest causes of infertility affecting around 45% of infertile couples.
However, this does not mean that you will not be able to naturally have children if you have endometriosis. Endometriosis causes infertility in roughly 50% of patients, usually due to physically blocking the pathway of the egg, and surgery can often help patients to increase their fertility.
6. Will pregnancy cure my endometriosis?
Simple answer, no. There is no “cure” for endometriosis. Many treatments for endometriosis require changing the hormone balance to make the body think is pregnant (the pill) or in menopause and suppress the monthly cycle. Women may find that getting pregnant, due to the large changes in hormones, provides some relief to their symptoms however the length of this relief changes for every woman. I think you can all agree that you should have a baby because you want to, not as a medical option!
7. Sex hurts – should I just give up on it?
Endometriosis can cause painful sex. Whether you are trying for a baby or just want to show your bf that you love them, painful sex can be a real turn off. However, all is not lost. Talk to your partner about this; the more nervous you get, the more it will hurt so you need to make sure you maintain intimacy. Also, get creative and try different positions that suit you. Whether a backwards cowgirl, some acrobatic pretzel or just plain vanilla, every couple has to find what they prefer, you just need to be more open about it. It is also a good excuse to try something weird and wonderful – if you’re into that kinda thing 😉
8. Endometriosis is not cancer!
Whilst the cause of endometriosis is not known, it is known that endometriosis is not a form of cancer. It is not contagious, viral or infectious and cannot be passed from person to person through contact.
9. I have just been diagnosed – now what?
Once you have been diagnosed (only official from a laparoscopy surgery) you should work with your gynaecologist to find the best way to manage your symptoms. For many this means some form of hormone treatment such as the pill but for some this may mean additional surgery to remove bits of the endometriosis.
One often overlooked thing is your quality of life. Whether it is your diet, exercise or social life, make sure you look after yourself to stay well. There are many social media groups where you can rant about your bad day or support women with their’s which can be a fantastic outlet. Endometriosis UK is a nationwide charity that support women with endometriosis so reach out to them for information or just to chat.
Tanya Barad is a passionate Endometriosis Awareness Promoter. Follow her on Twitter here.