Diagnosed in 2017, Jazz shares her Endometriosis story with us today.
Jazz’s Journey: I am 23 and was born in Northampton, UK where I continue to live with Cerebral Palsy and Stage 1 Endometriosis. I was born with my disability and I was diagnosed with Endo in November 2017. At 16 I started the pill, Femodette, because my periods were really heavy and really painful. I was given Mefanamic Acid to help relieve the pain and it did nothing. I was taking Paracetamol and Ibruprofen and was even told to stop crying in school because “it sounded like I was giving birth.” I was given another pill to take after Femodette failed to work called Regevidon.
I went to College where I was given another pill about 6 months later because I kept having bad migraines that interfered with lessons. I was then given Necraz and that also failed. I was given two more pills to try that I can’t remember the names of but they were ones I kept taking and still my periods were really painful and heavy. At this time I was given Co-codamol and Naproxen to help with the pain and it was this time I was given Tranexamic Acid instead. I was rushed into hospital by the college because I was in that much pain. They couldn’t do anything except give me some pain relief and tell me it was just a bad period.
I then went to the doctors. It was then decided that I would be given the implant where I would then bleed for 3 weeks every month. After that I was given the injection to try and this is what happened one month after not having a period and after thinking that it may actually solve all my problems: I had my period for a week, came off for 4 days, bled for another week, came off for 2 days, bled for another week, came off for a day before then bleeding for the remaining two months. Once again I was taken to the doctors only for them to say that there were going to try one more thing before I went to see a gynaecologist.
I had the Mirena coil fitted on the 1st August 2016 and from then until November 2017 I would be continuously bleeding. After I had my laparoscopic procedure, the consultant told me it was so mild that there was almost nothing and that’s why any scans I did have did not show anything on them. After being diagnosed I thought I had some answers until 6 months later when the bleeding would return. Now, I’m on Morphine, Pregabalin and Amitriptyline (which are controlled drugs in the UK and illegal anywhere else in the world other than US), Zapain, Naproxen, Baclofen (supposedly to be helpful for my disability but my spasms say otherwise) and Kliovance because I have to go once a month and get the Zoladex injection to put me in the menopause until I’m eligible to have an elective hysterectomy because yes I’m in that much pain and apparently it’s mild.
All along this process I knew that something else was wrong but scans showed nothing and every time I looked down seeing blood I eventually thought maybe I was going crazy. Yet I persevered and glad I did. What was rather amusing was when I told nurses how long I had been bleeding for half of them looked like they had seen a ghost. That was after them saying it was a bad period or making remarks about me being in pain. I actually got prescribed Oramorph I because of my flareups because I would literally be in hospital every month so it was to keep me out of there but it worked and if it works then why would I complain?
Words of Advice: Don’t be afraid to ask for help. I have carers to help me because I was bedbound two months in a row because of my periods and I wouldn’t want my life any other way now. Always trust your gut. If you think there’s something wrong 9 times out of 10 it’s because there is. Get an appointment and don’t be afraid to ask stupid questions. I do actually have a receptionist job at a gym and I do work 8 hours a week but I had to let them know in advance when hospital appointments were and I remember them wondering what was going on with my health. Do keep your work updated and they should help make adjustments should you need them e.g. I take tablets every 4 hours and I have to take them when I’m on shift so I need breaks to take them. I also need heat as heat helps so often I will take my hot water bottle with me too so when I need it I can have it under my work uniform. Either that or a tens machine is good too. I always let work know what’s happening and I’m always honest with them: if you can’t work an extra shift because you’re in pain, tell them, because guaranteed they’d rather you were honest (I did this and had to be sent home halfway through a shift I was covering and work wasn’t happy when they had to phone round again trying to get someone to cover me who should have covered someone else). If you don’t know when cramps are going to hit take painkillers anyway (within reason). I take some a couple days before I get my period so that my cramps aren’t that bad when they kick in. If however it’s been 2 hours since you last took some be smart and wait the extra 2 hours. If you don’t like the sound of that then speak to the doctor about getting something purely for flareups like Oramorph is for me. If you find co codamol works then that would be a good option or if just ibruprofen works for you then that would be the best time to take it. Work with them to come up with a plan so you make the most out of the painkillers you’re on.
If you would like to talk to Jazz about her Endometriosis journey or would like some advice, you can reach her on Facebook.
I want to send a special Thank You out to Jazz for being brave enough to share her journey with us today! And thank you for the wonderful advice! ❤ Yours, Lisa.
And if YOU would like to share your story, I would love to share it on our blog. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.