Endometriosis

March is Endometriosis Month.

You may have heard this somewhere before but not quite sure what it is really. You may hear it being described as ”bad cramps”. Sometimes, it is the simplest way we can find to describe it, as this condition has a multitude of varying symptoms besides ”just bad cramps”. You can go on many websites and they will give you the common symptoms for ”Endo” but everyone’s experience varies.

Today, I speak, from a personal point of view…

Endo was my own personal piece of hell. As with everything in my life, I felt like I was a late bloomer (Still unsure if I’ve actually hit puberty yet). I heard my friends talking about getting their periods at 12 (I was approaching 14) and I felt left out. That would soon change on my 14th birthday. I got up to a dreadful pain in my pelvic area. It felt like, what I can only assume as, being stabbed repeatedly with a dull knife. I took myself to the bathroom and found that my period had started. Yay, Happy Birthday me! I have finally become ”A woman”. I was excited.  That feeling, would soon fade throughout the next few years.

I have been taught that it is ”normal” to experience pain with your periods and that some women experience different levels of pain. I never had the notion that anything was wrong with me. I was as excited as someone on death row on their way to execution, every time my period was due. When it did arrive, it would render me almost immobile. Crawling was Laborious but seemed the only way I can get from bedroom to bathroom. I soon dawned on me that it was best I “live” there on the first two days at least, so started stocking it with bottles of water, reading materials, etc. The pain was so severe that if I didn’t take the strongest painkiller I can obtain, times two, I would get mini blackouts with bouts of vomiting. All this time being told it was ”normal”. It was not until I moved to the UK in 2004, that I realised, it was not.

It happened so swiftly, I barely remembered what occured. Heading home after hanging out at a pub, we were in line at McDonald’s getting food, when a searing pain surged over me like a sudden tsunami. I felt sick and I doubled over. An ambulance had to be called. It felt like my body was shutting down. At the hospital they pumped me with painkillers intravenously and Ran some tests. They could find nothing wrong with me and thought it might just be gastroenteritis and sent me home. The next day I went to my Doctor. She asked me if I knew about Endometriosis. I had not at the time and was filled with very basic information about it. She almost said it like she wasn’t quite sure it was true.

The next few years I had so many tests done, given so many different types of medication (I had to have a pill caddy), been poked and prodded, given oodles amount of blood for tests… I was surprised to be alive. I had so many collapsed veins, the economy had a better chance of reviving. I eventually had to have laparoscopy (keyhole surgery) to remove the Endo adhesions. That experience was traumatic. I was told that the surgery would ”cure me” and I would be better. Roughly 6 months after, my pains were back, worse than ever before and had now spread to from just my pelvic area, all the way to my bowels. I started to develop a myriad of other symptoms I had not experienced before. I was devastated. I was scared to go back to my doctor and tell them because they said I was cured. So what was wrong? I tried everything I can find on the internet. Diet, exercise, change my eating habits, yoga… nothing worked. I was in tears almost every day and started to suffer from depression; One of the most difficult symptoms of Endo. I had lost all hope.

While at another GP center having a routine pap smear, the nurse noticed that I was writhing in pain. She then asked me if I had Endometriosis. It was then I explained to her what happened. She then told me that it was up to me to do my research and get my own information because a lot of doctors don’t believe it’s real and avoid dealing with it. She told me to register with the GP where I was having my smear done because they were excellent and specialise in women’s health. That day, my life changed.

I signed up with a new GP and did as much research as I could stomach. Endometriosis was gruesome but I realised, I wasn’t alone. I joined Endo groups on Facebook and spoke with some of the girls there and it felt like home. I could cry and vent when things were bad without being judged. My Endo Sisters were there for me and in turn I lent my support. My new Doctor was awesome. She put me forward for all the tests that I needed doing and on my persuasion, recommended me to the Endometriosis Team at *UCLH. There began the most wonderful journey into helping me understand and manage my Endo. I soon had my second surgery done to properly remove all the adhesions. Once recovered, I was recommended to the **LINK Programme for cognitive behavioral therapy (CBT). I thought they were crazy. ”Talking therapy?” Little did I know, it would change my life.

Since then, my life has been completely turned around. I have learnt to manage my pain better. It’s been about 10 years since I was first diagnosed. Gone were the days where I was in so much pain, I summoned the Grimm Reaper to take me now. Gone were the days where I was so depressed, I lost my will to live. Now, I fight back. I’m not completely devoid of pain. My life isn’t all perfect now but I have a clearer understanding of my pain and how to manage it. The symptoms I discussed here were only the ”reader friendly” versions. There was so much more that I dealt with and certain changes I made in my life, to get where I am today. Everyone is different and everyone’s experience isn’t the same but one thing I refused to do was give up. I refuse to let this illness define me. I am… An Endo Warrior!

*Endo Centre at UCLH – https://www.uclh.nhs.uk/OurServices/ServiceA-Z/WH/GYNAE/ENDOM/Pages/Home.aspx

**UCLH Pain Management Centre- https://www.uclh.nhs.uk/OURSERVICES/SERVICEA-Z/NEURO/PMC/Pages/Typesofpain.aspx

***Endo Support Site, Acendo – http://endocista.blogspot.co.uk/ and Facebook page https://www.facebook.com/acendoUk/info?tab=page_info

****https://www.endometriosis-uk.org/understanding-endometriosis

~I am also happy to lend an ear or kind word or even answer any questions you may have, so feel free to message me at Trinigirlinlondon1@gmail.com