3 years ago I was diagnosed with Endometriosis.
For as long as I can remember, I have dreaded my period- not in the ‘oh I was gonna wear white to this party’ kind of way or even in ‘ugh this inconvenient’ kind of way. In the way that my entire being filled with dread when I counted the weeks since my last. I knew that once again, I would cancel plans, I would be in debilitating pain and would of course be accused of ‘skiving’ from whatever regular commitment I had. Painkillers and a hot water bottle were my best friends but this was no real relief, instead hoping the ‘placebo’ effect would kick in and I’d trick myself into thinking I was feeling better.
Endometriosis is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women in the UK are currently living with the condition with 1 in 10 women around the world living with it. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity. Endometriosis can have a significant impact on a woman’s life in a number of ways, including:
- Chronic pain
- Fatigue/lack of energy
- Problems with a couple’s sex life/relationships
- An inability to conceive
- Difficulty in fulfilling work and social commitments (Endometriosis UK)
See https://www.youtube.com/watch?v=NWUXI62GtfM&feature=youtu.be for a really helpful video on understanding endometriosis.
On average it takes women 7 years to get diagnosed and there is still NO known cure. It took me over 7 years to get diagnosed, with my beautiful sister struggling on for 9 years before a diagnosis (it is not known if endometriosis runs in the family, for us unfortunately it has). Menstrual health is not something that is taught in schools and no education is available for young women, therefore when I began to have extreme pain, passing large clots and felt generally awful 24/7 I had no idea what the cause was. I was told by medical professionals that ‘everyone has period pain’ and that it was ‘all in my head’ unfortunately something that women with endometriosis are told all too often. It wasn’t until my sister had a laparoscopic investigation where they found endometriosis that I pushed for my doctor to refer me to the gynaecology department considering we had very similar symptoms. Upon seeing the gynaecologist he was extremely dismissive, unwilling to refer me for the laparoscopy (the only way to get a diagnosis) and I practically had to beg for this- again being told that what I was experiencing was normal, and that I was just being ‘over dramatic’.
After my laparoscopy it was found I did indeed have endometriosis. It was such a relief to have a name to something that had been haunting me for the last 7 years, however after the diagnosis there was very little follow up or help in how to manage this condition. I could have another laparoscopy to have the endometriosis either burned away or scrapped out (depending on the trust different procedures are done) however this is no guarantee the endo will not return or that you wont be left with debilitating scar tissue damage. Another option is early menopause- Not something at 19 I really wanted to consider. Or different contraception such as the pill, the implant, the coil etc…however most of these do nothing to alter the symptoms of endometriosis and so stronger pain killers are the only slight relief women suffering from this condition have. This is not good enough.
I have been told at 23 years old I should start trying for a family sooner rather than later due to the condition and the chance I may need fertility treatment. I have been also told by a college lecturer that I simply wont get pregnant- she knew nothing about my personal case let alone about the condition. I am forever being accused of skiving from whatever commitment I have and that it cannot be ‘that bad’.
Being a student nurse is exhausting for anyone, having endometriosis on top of this is a struggle. While most prefer to work longer shifts- having 3 days on 4 days off, this for me is not worth while. Being on my feet for 12+ hours at a time causes my body to cramp and I am in debilitating pain, this is something I am accustomed to and can get through until the end of the shift. However the 4 days ‘off’ are not ones I can enjoy, I can be bed bound from the pain, unable to move without wanting to throw up or pass out and usually unable to leave the house. I have previously forced myself to attend placement during a flare (need the hours!) and during handover I passed out from the endo symptoms- this was on my first day. I awoke on the floor, to staff surrounding me, taking my blood pressure and checking my blood glucose levels. I then had to explain my condition to the ward sister and was sent home, this set me back further and I had another week of placement because I did not feel safe to practice. No good helping a patient to transfer and passing out on them!
Currently my condition is manageable although I am always in some level of pain. I have to prioritise my time being a student- if I am in considerable pain and it is a lecture that I am able to view the presentation online and understand it, then it is not worth me attending university to then be in more pain the next day- causing a domino effect. This is something I wish my fellow students, lecturers and placements would understand. I am fed up of people calling me ‘stranger’ because I haven’t been in uni for a week, being told ‘oh I get period pain too- have you tried paracetamol’ or being asked not to lean when writing my notes on placement because it looks ‘unprofessional’ when I am struggling to stand.
More education is needed on endometriosis- it is still not widely known. Often I am on placement and the healthcare team do not know what it is. This is not acceptable, 1 in 10 women suffer from this condition and yet people ignore it because its ‘icky’ and ‘no one wants to talk about periods’. Menstruation is natural, every woman goes through menstruation and yet when it isn’t normal it is almost a taboo subject..why?
Please, please, please research endometriosis, arm yourselves with the knowledge and share with everyone. This needs to be addressed.
I’ve included the links to some websites with more information on endometriosis:
If anyone is suffering from the symptoms- diagnosed or not then I am more than happy to talk to you about it! Supporting each other is key!