Sorry for the long absence I have been rather busy.
I started a job in a supermarket, where my mum works 3 months ago- just at the start of lockdown weirdly and I have been rushed off my feet working and trying to manage my health.
This is an update on how I’ve been doing.
Just before lockdown I had a very frustrating and infuriating gynecology appointment (with my gynecologies team member instead of the actual gynecologist) rather where I was made out to be awkward for not wanting to try any other forms of contraception (bearing in mind I’m 27 and have tried just about the majority of them by now and they do not agree with me) and I was told to go on prostap injections which is chemically induced menopause for a period of 6 months which may or may not halt the growth of the endometriosis but could have life long side effects.
I was literally given a leaflet and asked to try them there and there with little to no explanation of what they were and was given it as a last resource after the gynecologist looking in a medical journal for what seemed like forever.
Overwhelmed and understandably upset and angry I said I would like to think about it and only though asking other women with endometriosis who I have on various social media platforms did I find out that the majority of them were recommended this and with the majority of them it has made their condition inevitably worse to the point where they are struggling to work.
No way did I want to put this in my body with no guarantee that it would help the situation.
Stuck and upset I called the doctor for some advice and told them of my experience at the gynecologist and surprisingly the new doctor I spoke to was the first doctor I’ve spoken to EVER that had some compassion and understanding for both my condition and how long I’ve had to fight and he wrote a letter to the gynecology explaining how unprofessional they were to me, to the point of not explaining the severity of my condition, making out I was being awkward by not wanting to take any more contraceptives and when asking about pain management sarcastically saying to take over the counter ibrufren which anyone with endometriosis knows does not work- I wouldn’t be there asking for help otherwise!
After receiving the letter I had a phone call from my gynecologists receptionist- this was the first week of lockdown.
Hoorah! A stroke of luck!
I was told due to the covid-19 crisis the gynecologist wasn’t seeing any patients in person and instead it would be over the phone consultations, BUT after reading my letter they offered to see me!
Relieved but worried I decided to write down all the questions I had about my condition, what I’m struggling with and asked other endometriosis sufferers some advice before going to get my point across because I’ve had years of being ignored or my immense pain being normalised and I took my list and my side kick and strength (my mum) to the hospital appointment with me.
On the way (as you can imagine) I was so nervous as I was pinning all my hopes on getting some answers and getting the help that I’ve been fighting for for over 8 years now.
Just before going into the office for the appointment i had major panic attack, as they said I couldn’t bring my mum with me who I always bring to big appointments like this because she is my rock and support and Endometriosis is a difficult disease as it is, but medical appointments make me especially anxious due to being let down, ignored & patronized for so long.
I cried A LOT, they eventually agreed and whilst waiting to go in, it took me a while to calm down with the help from my mum because I’d worked myself up so much.
With a lot of persistence and talking from both me and my mum the gynecologist answered the majority of my questions including telling me that I do have adenomysosis which is rare in women who have never been pregnant before and they the endometriosis is stage 4 or moderate and the main bulk of it is behind my uterus attached to my bowels and after some what felt like begging he agreed to send me to a specialist in university hospital where I can have an operation to scrape away a good majority of the endometriosis which should help my pain considerably for many years to come.
He did also refer me to a pain clinic which was meant to deal with my pain medication and overall pain management until my operation but on the 7th of July I phoned to check up on the referral and was told that the referral had been dismissed and rejected due to covid-19.
I was absolutely heart broken and angry because during this whole time I’ve pinned my hopes that the pain clinic would help me manage my pain on a daily basis because I’m struggling and the pain is getting worse and worse.
I also phoned the university hospital to check my operation referral and they told me that they have a back log (which is understandable) of 3 months and to call back after this- just to find out about my referral not a first initial appointment!
I was angry, broken and left feeling let down and waiting yet again and still am to be honest.
I did call them up again today though and they told me that in the next 3 weeks I should receive a letter with an appointment with my specialist to meet up with them regarding what type of operation I will need and the complications but I have no idea when this appointment will be.
I’m trying my best to keep going and stay positive but I am really struggling. I’m just tired of being in pain and being left on the back burner and even when it is time for my operation which is my only option left to help me, I am dreading it! I’m dreading the recovery and everything that’s to come.
I’ll keep you updated guys.