I wanted to use this post tonight to write about my experience with Endometriosis. I feel that not enough people know much about this chronic condition, and I hope that me sharing my story might help someone with their diagnosis or even just give a bit of hope that it can be sorted and not to give up!
I started for me when I was in year 9 (this is about 8 years ago), I remember being in school and having these unbearable tummy cramps. Not being able to sit through the pain I went straight to the doctors and was told that it was probably just bad period pains. After a day or so the pain went and I went on as normal. Every few weeks I would get these pains but listened to what the doctor had said to me and just passed them off as period cramps. Months had gone by and I wasn’t able to numb these cramps with any painkillers when they came around. I went back to the doctors and explained that surely they couldn’t be period pains as I wasn’t on my period when I was experiencing them. The doctor really didn’t listen to my concerns and made me feel as though I was completely exaggerating what I was going through.
Years had passed now, and my situation was just something I had to live with for the few days every few months the pains came around. It really paid a huge part in my confidence as when my cramps came my stomach would swell up and double in size. I would literally look pregnant!! There was no way in telling when the pains would come and for how long they would stick around for. It made me double think what I would plan to wear for the day every morning as I didn’t want to get caught out and end up looking like a hippo.
It was only till I got a bit older and was experiencing different symptoms that made me know something wasn’t right at all. I was constantly tired, would often feel really sick suddenly, my periods were erratic and would sometimes last a day, and then I wouldn’t have another for few days and so on… I also experienced a lot of pain during sex (lol sorry mum if you are reading this) and that again in turn really affected my confidence in myself and my body.
One night I was in agony so my dad took me to the hospital, my stomach was so swollen and I was excessively sweating, it was so scary as we had no idea what was happening. After being at the hospital for forever and a day I was told again that it was period pains and that I should go home get tucked up in bed with a hot water bottle, and stay on top of some painkillers… do they think we don’t try this shit first!!! I was put on a contraceptive pill to try and regulate my period and control my “menstrual cramping”. It didn’t work, if anything it made my pains worse and my periods would skip for months. I had been to hospital again since then with excruciating pains and still nothing. Painkillers still didn’t take away any of the pain and only a boiling hot water bottle would put me at ease a little bit, this would scorch my skin though so wasn’t great at all!
Now we move on to last year, I had been offered an amazing job in the fashion industry, and was really excited, this was my dream! It meant me relocating to a different city (Leicester) and moving in on my own! I was getting on really well until guess what… my pains came back and were worse than they had ever been. I would often have to leave work as I couldn’t sit still and ignore the pain I was in. This was hugely starting to affect my job. I was sitting at work one morning and they hit me, the most intense cramping I had ever experienced! I tried to get on with my day and not let it affect me but I was soon sent home. The next morning I still had the pains but they seemed to be getting lighter and I thought I would be ok, after getting to work they got more intense again and after going to the toilet found that I had blood in my urine. I went straight to the hospital with my boyfriend and was told by the nurse that the symptoms I was having led him to believe I had endometriosis. I’d never heard of that before and had no idea what it was. After having some internal scans (wouldn’t wish them on anybody) the doctor confirmed that he believed this was what I was experiencing. Her described more about the condition and after listening to him I just knew that was what was wrong with me.
Endometriosis is a chronic condition that means the tissue that normally lines the inside of your uterus, is actually growing on outside your uterus, ovaries, fallopian tubes and pelvis. Ouch right… tell me about it! The pain comes when it thickens and then breaks down and tears off during your menstrual cycle. Because this displaced tissue has no way to exit your body, it soon becomes trapped. The surrounding tissue can become irritated which eventually develops scar tissue and adhesion’s. Abnormal bands of fibrous tissue can cause pelvic tissues and organs to stick to each other… sorry this is a huge cringe I know!! There are many reasons why endometriosis can develop I won’t explain them all to you, but the most common is genetics.
From being at the hospital on previous occasions I had been scanned for ovarian cysts, which I did occasionally have (another thing endometriosis can cause) they would fade away and didn’t seem threatening to me. The scariest thing about learning I had endometriosis was being told my many doctors and nurses that it could make you infertile the longer you had it and it was left untreated. Obviously I had had this for 8 years so this was really unsettling. I wasn’t ready for that next step, but I didn’t want it to be snatched away from me without working out what I wanted. After I learnt this was what was happening to me, I experienced a few more hormonal symptoms. Stress is a huge factor with endometriosis and cases the pains to be more regular and completely messes with your hormone balance. My skin was breaking out so badly and my hair was starting to fall out. Unfortunately I couldn’t find a way to manage my stress so these problems were really affecting me, especially my skin. I’ve never had bad skin in my life and really couldn’t control these huge breakouts. After a few more doctors appointments I was finally put on the waiting list for a laparoscopy (keyhole surgery) to officially diagnose me with this condition and the lazer and cut off the tissue growing on and around my organs.
In April this year I had my laparoscopy and had the tissue torn and lazered off. My case was quite severe as I had had it for so long and had never been treated. After having the surgery I am so pleased to say that I no longer have any pains!!! The 3 tiny scars (war wounds my family like to call them) are so worth it and I no longer have to worry about this problem anymore. Recovery was tricky, I won’t lie, it was quite painful and took me a good few weeks to get back to normal life, but knowing I never had to experience these pains again was completely worth it! The first period is pretty killer, I’m really hoping the next few won’t be as bad, but you can get through it!
There is no guarantee that this condition won’t affect me again, if you don’t keep on top of looking after yourself it can find a way of growing back. I’m back on a different contraceptive pill which is suppose to really help, and I’ve been told that steering off gluten is a really effective way of protecting yourself from it coming back. I’ve still got a lot to learn with this all but anything is worth doing to ensure I don’t go through this again. I’m back at home now in Cambridge so I can manage my stress levels at lot easier (it’s hard moving out young!) and be closer to my family in case I’m unlucky enough for this to occur again.
The reason for writing this post (apologies about the length of it!) was to help educate people about this condition and give people a bit of hope that if they are going through something similar not to give up! Unfortunately it is something that is regally overlooked and almost ignored but persistence is key, you know when something isn’t right with your body, listen to it! I know a few people that have had this and are still not diagnosed yet. The average time for someone to get diagnosed with endometriosis is 10 years, and normally at the age of 26, we need to change this! I really hope this helps someone and please share if you know someone going through something like this, it might help them. Here are some funny photo’s of me bored and fed up of waiting at the hospital to try and leave this on a lighter note!
Here are how small the scars are… they are fresh the next day and my stomach is still really swollen from being pumped up with all the gas. Don’t let this scare you, I’m told they fade really quickly.
Thank you for reading!!!!!!