My Endometriosis Diagnosis

Content Warning - Very in depth talk about menstruation, endometriosis symptoms and brief mention of misogyny / infertility.

I started having periods when I was eleven, and since then it’s been seven years of hell. Whether it’s the hormones, the cramps, the back pain or even the nausea and fainting, my life revolves around my period. It takes over three weeks a month of my life, and it always stops me from doing my daily activities. 

My mother used to tell me I was being dramatic. She said that it’s a part of life and that I need to get used to it. It took me passing out for her to finally take me seriously on just how bad it was. Ever since I was thirteen, I’ve been going to the doctors to try to get something to help. More often than not, I was just told I was being dramatic, but at fourteen I was put on a combined pill, microgynon to try to stop me from complaining too much. Due to some of the side effects, I stopped taking it after a year and went back to avoiding going to the doctors about it and keeping quiet. At seventeen, I went back to the doctors about it, and got given co codamol and was told to get on with it. That never helped much, though. 

Before going more in depth, here’s what I did to get through my periods. These may or may not work for you, but after spending ages researching and experimenting these are general things I did to help minimise the pain. 

• I found hot water bottles were incredible. I took anti-inflammatories every six hours and ibuprofen every six hours, alternating so I’d have one of each every three hours. Only do this if it’s safe for you and if your doctor has approved it. 
• As cliche as it sounds, chocolate helped. There’s something comforting about sitting down with a hot water bottle and a bag of chocolates. 
• Not sponsored, but BeYou monthly patches saved me. They have a strong herbal scent, but they’re amazing for the pain. I can’t recommend them enough. 
• I was a lot more careful about my diet when I was on - I couldn’t stomach much, but I made sure to get more carbs and protein when I did eat, just to keep my body going. Toast, mushrooms and spinach ended up being my go to - and even now when I’m still struggling to stomach food, mushrooms and spinach on toast is my go to. 
• If you struggle with nausea, drink a lot more water than you usually would. 
• Something that irks me is when people say to be more active and go jogging when you’re on, but for me that was never an option. I was bed-bound. Don’t feel guilty about staying in bed. 

These things might not work for you, and it’ll take experimenting to find what works. This is my seven year discovery of what works for my body. Just be patient and experiment, and you’ll find your own things.

I want to say that all those got rid of the pain. They didn’t. I was still in horrific pain every day, and it was unbearable. September last year, I moved to another city and registered with a new doctors surgery. I ran out of codamol within a month of moving, but I didn’t want to go through the fuss of being told that I was being dramatic or that I was making it up, so I just got on with it. It wasn’t until a few months later when I ended up passing out again that I did make an appointment with the doctors. My mother didn’t understand why I didn’t get an appointment as soon as I moved, but I don’t think anyone who hasn’t been through this understands just how crushing it is to constantly be told that you’re being dramatic by several doctors and just how nerve wracking it is to have to phone to talk about it again, especially if you don’t know what the doctors are like.

I got lucky this time. The doctor that I had the appointment with listened to everything I had to say, and was so understanding. She told me that it was endometriosis, and she went through all of my options. Combined pill, the injection, an IUD, the implant, and different painkillers I could get. She listened to all of my concerns and answered all of my questions, and I couldn’t be more grateful for what she did during that appointment. It feels weird to be grateful for someone doing their job, but she took me seriously and I can’t thank her enough for that. 

I phoned again a week ago because I’m in constant pain, and she listened again and didn’t laugh when I cried to her. She talked me through all the options, she answered all of my questions and she’s made it clear that if I have any more issues to just phone straight away. I don’t think she realises just how bad it currently is for me, so once I’m back in the city I’m going to make another appointment because I’m still in constant pain. 

Endometriosis is a health condition where similar tissue that lines the inside of the uterus grows in other places. It can grow in / around the ovaries, fallopian tubes, and can even affect your bowels / intestines and bladder. Some of the common treatments include - pain medication - typically anti-inflammatories, hormone treatments - including combined contraceptive pills, contraceptive injection, intrauterine system etc, and only in serious cases, surgery. Some of the symptoms include painful periods - including lower back pain and cramps that can begin several days before the start of your period and continue throughout your period, heavy periods - including bleeding outside of your period, pain when passing bodily fluids during periods, nausea / diarrhoea / constipation / blood in urine during periods, and generally debilitating periods. 

For me, my life revolves around my period. The pain takes up the week before I’m due on, when I’m on and when I’m ovulating. My periods are heavy, I’m in constant pain when I’m on, I get blood in my urine, severe constipation, and I have nausea and lose consciousness a lot. Another thing I’ve noticed is that my cycle is irregular. Sometimes it’ll be thirty days, other times it hits seventy. Not sponsored in any way, but I use the app Flo to track my cycle and when I remember, my symptoms. When I had the first appointment with my new doctors surgery, that was a lifesaver. 

After having that appointment, I ended up going on a combined pill. The first one I tried a few years ago - microgynon - didn’t help me. It added to the symptoms and I had to stop taking it. I do want to say that I know so many people that it’s helped, but personally it didn’t work for me. Everyone’s different so different medications will work differently on others. The one I’m currently on, millinette, is fine, but I’m having the same issue. When I have to take a break from the pill, I have to take Tranexamic Acid three times a day to stop the bleeding, essentially making it so that I don’t have a period.

Even though I’m on the pill, I’m currently in pain all of the time. I’m not even sleeping. The one upside is that I’m not bleeding and I don’t have cramps. Even though I don’t bleed or have cramps, I constantly have a bad back, bad legs, feel nauseous all the time, can barely stomach any food, can’t get more than four hours of sleep at a time, my moods are horrific, and I’m having numerous problems with bodily fluids being painful - which has led to me and my doctor thinking that my endometriosis has spread to my bladder and bowels. This is a problem we’re trying to put off addressing, purely because of the complications that can involve and the severe treatment for it.

I had another appointment with my doctor where I addressed all of this, so she gave me another painkiller and more options. She said that the best option for me if the painkillers don’t work is to get the Intrauterine Device (IUD). It’s a plastic and copper coil that’s inserted into the uterus. Personally, I would hate that, but I know that my options are limited. I know that it’s one of the only options I have right now. I’ve researched it endlessly and as soon as I get back into the city, I’m going to make the appointment to get it done. I’m desperate to not be in constant pain and to actually sleep, and I’ll do anything to get that. 

I don’t want to be ignorant about what my diagnosis means. I know that this is something I’m going to struggle with for another forty, maybe fifty years. I know that if the endometriosis has spread to other organs, that it might mean I’ll have to get surgery. Personally, I’d rather that than having to suffer with this pain, but I know what it means for my body. As anyone AFAB, I feel like we’re defined by our fertility. That’s how I’ve found the whole topic of periods, anyway. We’re valued for our fertility. I know that with endometriosis, there’s the complication of infertility, especially if it spreads from the pelvic area. Considering it’s highly likely mine’s spread that far, I know that it’s massively unlikely that I’ll ever have kids of my own. It’s funny, really. I’ve never wanted my own kids. I’m not attracted to men so it’s highly unlikely I’d ever have my own kids, especially because pregnancy doesn’t appeal to me. I never want to get pregnant. I’d rather adopt. That’s always been my stance and it hasn’t changed. Ever since I got this diagnosis and knowing that there’s the possibility I’m infertile, I can’t help but be sad. I wouldn’t want to be pregnant but I’d at least like the choice. In a funny way, even though I don’t identify as female, I feel like I’ve failed. 

If you have any issues with your periods, go straight to the doctor. You shouldn’t suffer. Periods shouldn’t be debilitating. If they are, don’t hesitate to get medical help. Don’t let anyone tell you you’re being dramatic. Look into different options. Look into what you’re comfortable with, and don’t let anyone tell you any different. It’s your body, your health, you’re in control of what happens to it. You’re never alone in this. There are so many others going through similar things, and it’ll never hurt to talk about it. Do whatever you’re most comfortable with. It’s tough, but we’ll get through it. We’re tougher than we look. 

~ En x

Endometriosis UK (even though it’s a UK site, they have an in depth breakdown of endometriosis and some advice) - https://www.endometriosis-uk.org/
Healthline - https://www.healthline.com/health/endometriosis
National Endometriosis Organisations - https://endometriosis.org/support/support-groups/

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