This is a post i've been dwelling on for a while and since starting a fundraiser for Endometriosis UK it only felt right to share my story.
Firstly, what is endometriosis?
It is a chronic disease which affects around 10% of women all around the world where tissues similar to the lining of the uterus grows outside the uterus, it can grow on all major organs but it is mainly found in the pelvic area. Symptoms vary depending where the endo has grown but the World Health Organisation class the main ones as "life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue and sometimes depression, anxiety and infertility." sounds fun right!! Joking aside, there is barely any research on what causes endometriosis and there is no cure. Having the endo removed can reduce the symptoms however it is known to grow back and even those who have had their uterus removed still report pains - it varies patient to patient.
At the moment, after a very long waiting list and fight, after getting a diagnosis (the only way for this is by surgery called a laproscopy) of endometriosis the only care offered is forms of long term pain management, these mainly include diet and lifestyle, and types of contraceptives.
It took 10 years for me to have an official diganosis - it is optional, and some doctors didn't want to put me forward for surgery - having all the other tests to rule everything out first. I knew I wanted the surgery, I wanted a proper diagnosis, I wanted it found, I knew I couldn't spent the rest of my life wondering, what if it is something else?
I first seen a GP about my painful periods when I was young, I think around 13/14? I was put on the contraceptive pill, I was told it was common for people my age to have bad periods, we weren't use to the pain, and a lot of young teens are on some sort of contraceptive for pain management. I don't know how true this is, but I'll be honest, it helped! Over the next few years I did change from the combi pill to the mini pill due to difficulties with the side affects. I still got some sort of pain, but it was managable and never did I think I had something wrong. Whilst on the pill the only symptom of endo I had was back pain and leg pain, I was told time and time again it was 'growing' pain, but I think i've stopped growing at the age of 25 now. It is this insanly heavy ache in the upper thighs, pelvis and back. I found this drawing which represents it:
It was early 2019 I took myself off the pill, I wanted to see what I was like without changing my hormones, I had been on the pill for at least 5 years, and I couldn't remember what I was like without it, I didn't feel like I needed it anymore and so I stopped taking it.
Within a few months my endo symptoms starting to show. I was bloating like a balloon, the period cramps were coming back strong and I started to have cramps in the middle of my cycle. I went to my gp with these problems in may of 2019, the first thing she did was look me up and down and ask me to do a pregnancy test, the bloating was so bad and uncomfortable, I looked like I was about 6 months along. I was not pregnant so she sent me for an ultrasound of my ovaries - this came back normal and that was the end of that, I got offered the pill and told basically to suck it up.
Due to the constant bloating and cramping I went back to the doctor, I was then told I could have a gluten intolerance and we went down the route of IBS/IBD. I had 3 gluten blood tests - all showed nothing. This was also during COVID-19 so the process was a lot slower, and basically stopped for an entire year. I was then sent for a colonoscopy due to my mothers history - this was clear and my GP told me I just need to manage my diet better.
It's getting worse, I went back to my doctor and was told it's likely to be PMS because I happened to mention how sad I felt. Turned out I did have a very bad vitamin deficiency which could have explained my emotions and my fatigue but he sent me for some bloods to look at my hormones and offered me the pill. My hormones looked normal and so that was that, again.
A year later I went to my new GP I explained my concerns, with new symtpoms showing. My periods were getting worse. I couldn't walk, I had times where I was very close to passing out in pain - I have fallen to the floor and lost my vision a few times. I am so grateful for this doctor, she took me seriously and decided to do a pelvic exam. That was normal, and so she sent me for an internal and external ultrasound. Both came back clear and so she put my name on the waitlist for the gynocology team. This was in februrary 2023. By august, each month that goes by, things got worse. I was needing to take time off work, I stopped doing things I loved, I avoided making plans in case I had to cancel due to a flare up. I decided to see a private gynaecologist for a consultation for £500 - his findings were the same and suggested it is likely to be endometriosis and that I should have a laproscopy for a diagnosis. This was over £5,000. I couldn't afford that, and so I waited and waited for the NHS. My gp tried to fast track my referral twice but was told it physically couldn't happen. so I was stuck waiting.
In December 2023 I was having a very bad flareup, I called nhs111 for some advise as I didn't have any of my prescribed painkillers left and I was suffering. That resulted in me spending a night in a&e as they thought I had kidney stones stuck in my bladder from the pain I was describing. Of course they found nothing but the lovely doctor I seen could see how much this was affecting me and said he would try to fast track my referral.
Februrary 2024 I had an appointment with the NHS gynocology team. It was five minutes, I didn't feel heard or listened to. She asked if I wanted the surgery and I said yes. She said and I quote "you'll have to accept that if they don't find anything there's nothing wrong with you" it shocked me, but I was just glad to be on the waiting list for surgery.
In march I recived a call to tell me there's an opening for surgery... in two weeks! I was over the moon but so very unprepared. To make things even better, the NHS was paying for it to be done privately, and this so happened to be the same private gynaecologist I had seen back in august 2023.
I had my laproscopy on the 8th april - I am planning on doing another post on the laproscopy in general because it was NOT as smooth sailing as they make it out to be. I woke up in recovery in the worse pain imaginable, was taken back to my lovely ensuite room and was given a three course meal. I tell you, if I had the funds to get private healthcare, I would. It was a totaly different experience to the NHS in so many ways. My surgeon came in and told me he had found endometriosis under my left ovary, on the outside of the vagina wall and on my bladder, he had to dissect my bladder tubes in order to reach it and remove it, and then he had to restitch the tube back up. To be honest, I didn't ever think that would be a situation i'd be dealing with - very thankful they injected local anaesthetic (numbing) into all my wounds.
And there it is, after ten years, at 24 years old I was there crying in a hospital bed knowing that it wasn't all in my head. I know that I have to deal with this for life, but at least I know what I am dealing with. I'm currently waiting a follow up appointment to discuss long term management for my condition.
It should not take ten years for this to be diagnoised, it shoud not have been dismissed as many times as it was and there should be more research on why/what is endo. I'm still coming to terms with it. I knew for a long time it was properly endo, but having it confirmed that i have to live with this, it sucks. But i do know i am going to do everything I can to spread awareness on the condition and to not let it ruin my life.
Each day I don't know what will come. Will I be fine? How tired will I feel today? Will I be cramping today? Will my pelvis feel like it's exploding today? Don't even get me started on how awful life is when i'm on my period. I no longer leave the house without a form of painkiller and I must have at least three hot water bottles on standby. It's not going to be the easiest thing to live with.
I will be taking part in Endometriosis UK walk for endo in July 2024 - walking a minimum of 8,000 steps a day every day in july. see my fundraising page here -> https://www.justgiving.com/page/beccawalksforendo
Thank you for reading :)
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