My Experience with Endometriosis
I have never really shared my story when it comes to Endo, I never really thought people would be interested and as it not something you can physically see, there are always thoughts in the back of my mind……. Am I faking? Will people just think I’m making it up? The doctors took ages to diagnose me, do they think I am making it up? These are all questions I have been asking myself for the last 12 years, and still to this day, as its Endometriosis aware month, I thought why not let’s share. I was diagnosed after 5 years.
So, what is Endometriosis?
NHS Definition: Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Endometriosis can affect women of any age. It’s a long-term condition that can have a significant impact on your life, but some treatments can help. Endometriosis grows every time you have a period and or bleed.
When I was younger, I could not wait to become a ‘Women’, to go through an initiation process into Womanhood. How wrong was I, I had a good few (normal years), but then at the age of 16 it all started, the pain was unbearable and so after a few months of a constant period and not being able to play football properly I went to the doctors. Please don’t get me wrong I value my GP and think they are great but some of the comments I got from a few doctors were unbelievable in itself.
Comments over the years:
‘your only young, it will sort itself out’
‘why don’t you get pregnant’ – I was 16
‘have a hysterectomy if it’s that bad’ I was 18 and I want a family
‘We think you have ME’ – just because the pain wasn’t visible
‘it’s your appendix’
‘take paracetamol’ – doesn’t help
Anyway, finally got a gynaecologist that seemed to know what she was talking about and the processes began:
Symptoms can vary from person to person. These are mine:
• Constant stabbing pain daily in my side over my left ovary – this doesn’t stop and rarely lifts – but I deal with it and sometimes not noticeable
• Cannot go to the toilet without being in extreme pain, almost to the point of passing out – this happens when on my period mostly.
• Feeling sick and tired.
• Intensive crippling pain when on my period, can’t walk sometimes.
• Body aches, headaches.
So, over the last 12 years the things I have tried to help combat the pain and or improve the symptoms:
Contraceptive pills/ Combined pill – Tried 7 different kinds, didn’t work. Aged 16.
Contraceptive patches – didn’t work, fell off, so were not consistent. Aged 17.
Contraceptive implant – worked for 5 months, bled for 5 months straight after that 2 admissions to hospital then got it removed. Aged 18.
The Coil – Operation was performed to excise and remove the endometriosis tissue that was growing inside and outside my womb and in and around my organs. A Coil was then fitted – I was inactive and in bed for 1 month, due to recovery and the fact that I couldn’t walk with the coil due to the heaviness of my period and the extreme pain I was having. I was then admitted to hospital due to the pain and was told that the string from the coil was lost and they couldn’t find it, after a whole 6 hours of random doctors sticking their heads down there to have a go at getting my coil out, I was sent home with no luck. In the end, it has to be removed surgically as it was embedded into my womb. Aged 19
The Contraceptive injection/Provera injection– I was then given a 3-month injection, this was probably the best thing I have ever had, really helped me and stopped the bleeding for a good amount of time, I didn’t have periods and only the occasional spotting, after 3 years I had to come off of it as it’s not good to be on for so long. Aged 20
Provera tablets – I was given tablets to take alongside the contraception, which is a hormone tablet used for irregular bleeding, pumping me full of hormones but again helped and I used to take them every day on holiday so I felt comfortable wearing a bikini.
Zoladex – used to suppress the production of sex hormones, it is mostly used in cancer cases but helps endometriosis too, I had this for Six months before lockdown, which worked amazingly but it wasn’t a long-term solution, just a trial to see if an operation was needed, which it was.
Like a lot of people know when you have Endo it can affect your love life in many different ways but I’m sure you can gather what they might be. When I first met my lovely fella Lew, he had no idea of what Endometriosis was, I don’t blame him as it was and still isn’t a hugely known thing. Most of you that have endo, know that the first time you talk to your partner about it, it can be very daunting. Explaining in every intricate detail what happens to you, in what way and why you have to have operations every couple of years to make you feel better. I am very fortunate to have someone that is so caring and understands when I need his help and when I’m feeling bad. He was there for my last operation and had to pick me up, pop me on the toilet, help me change everything!! My absolute hero.
What inspired me to write this was that yesterday I had to come home from work my pain was that bad, I love work and wouldn’t come home if it wasn’t necessary. I am very lucky to work at the NHS and every boss I’ve had has been very understanding. I got really upset yesterday and it is Endometriosis aware month, so with that combined here we are.
From late 2018 I came off of all the hormone replacement and contraception to let everything settle back to its original form. But with the regular periods, came more and more pain, so I had an operation in late 2020 after being referred again and trying more methods of improvement such as Zoladex. So, another operation was required, and I got the contraceptive implant fitted once again, just to see if 8 years later it might work, it hasn’t and I have been on my period for the last 4 months, I am seeking to get this removed and go back onto the injection. I was sent home with paracetamol (of course that wouldn’t touch the pain), so I had some help to get me some stronger medication privately. Unfortunately, the next day after my operation I got a call from the register (1 rank below surgeon) to tell me the spots that they had found ‘were not consistent with the pain I was in, for those of you who know me I gave a very high pain threshold. I was gobsmacked as was my boyfriend. I replied ‘sorry do you not know what endometriosis is’, he apologised to me. You could be riddled with Endo and not feel anything, you could have one spot and be in the most incredible pain in the world.
Endometriosis is something I wouldn’t wish upon anyone. I am also scared that if I was to have a daughter she may go through the same thing, as I did, and my mum did. I don’t want sympathy as I deal with it the best I can, and it’s now been a part of my life for 12 years. I want to make people aware of it and encourage people who have Endometriosis to talk about it, make it known, express feelings and most of all don’t be embarrassed you’re not alone. I am so happy this is finally been talked about in the news and medical centres are being opened up especially for this.
You have got this!! It won’t beat you!