This is my first time joining the forum and your stories really reached out to me and the reasons why I wanted to be a part of this group.
Similar to a lot of you,I have always been told I am either too young or just someone who 'can not handle bad period pains'. I will share with you a little about my background and the different types of treatment I have had for you to see if any can help.
From the age of 13 I also couldn't go to school for a couple of days because of the pains I was in and spent many occasions going to the doctor. After I told them it is more than a period pain they sent me for a scan but not always for endo show up so they kept telling me it's period pains and to take more pain killers. From the age of 13-21 I tried 14 different contraceptive pills, all which I either bled through or had negative symptoms with and it got to a point where I would spend up to 3 weeks a month heavily bleeding, both through a tampon and sanatry towel which I had to combine together all the way to my mattress. I was lucky I was in a long term relationship but it put a strain on my sex life and quite simply.. being what a 21 year old girl should be like. That summer, I collapsed in pain on the train on the way home from work as the pains I get I describe as a mixture of being kicked/punched/winded and contraction pains all at once and was rushed in to surgery as I had a 6cm cyst and they thought my ovary was twisted but thankfully it wasn't but that's when they discovered my endo.
I won't go in to too much detail as the history is long but it's 3.15am and I need to finally talk about how sad internally I feel from this disease.
I am now 28. I have just had my 5th surgery which caused further complications affecting my breathing due to the stress of having 5 surgeries in 7 years which I've spent the last 2 months having physio for. I have endo in my liver, my bowel, it has twisted my Fallopian tube to the point where they can't unstick it and I have lost the tube and my uterus is 50% bigger than it should be as endo has filled inside it and the only way to remove it is a hysterectomy which I don't want. I have had multiple cysts, adhesions and scar tissue and had the marina coil for almost 6 years.
I have now started my second round of an induced temporary menopause (the first one I had was at 22, another relationship killer) and what I will say is, the zoladex (the menopause injection) has signifacntly reduced my swelling, my pains, allows me to feel good about myself and being intimate with my partner but I feel very alone. My friends are amazing and so supportive as is mt boyfriend but the truth is, none of them understand what it's like. How it affects your moods, your emotions, your confidence. The embarrassment of telling your boss you can't go to work because of how much pain your in and the quality of life it effects. I feel like it's changed me in to a lesser person.
I'm really hoping this group can help me to realise it isn't just me and it gets better.