Hello! And thanks for reading my post in advance!! I’ve been reading every post on here, blog and YouTube video out there for a while but I wanted to finally Tell my story and see if anyone can relate... I am currently awaiting diagnosis and surgery for endo. My story is a complicated and long one. I’m 24 years of age and have been having symptoms for about 10 years now. (Long post alert! Sorry!!)
As soon as I started my periods they were heavy, very painful and clotted. I was put on the pill at age 15 to help with pain and told it was all normal. Since then I have had back pain which has been treated separately and gone undiagnosed - mri’s showed nothing and I was referred to a pain clinic to manage pain.
In my first year of university I began experiencing bladder problems - I had bladder frequency and trouble going when I needed to. I have tried every bladder medication and test available including an investorgory op under general and bladder filling and emptying etc. In the end as a last resort I was given an Interstim implant (a pacemaker like device implanted in my back with electrodes attached to my spine). This hasn’t helped much at all either (I need to go pretty much all of the time) and was quite an ordeal to go through.
I have always have pain passing stools when on my period and thought this was normal until speaking to my mum in recent years. I also have pain passing wind throughout the month.
I love to travel and always planned to go away. Just before I was scheduled to leave for travelling last June I spent a month living with my boyfriend who I had been long distance with and I realised I was suffering from a deep pain during sex (before this I had put it down to the long periods between sex). I decided to go to a gyno and for the first time in my life she mentioned the word endometriosis (after 9 years of pain). But I was scheduled to leave in a week and she said it was fine to wait. At this point I knew nothing on this disease and she said it wouldn’t be the thing causing my bladder issues.
I then left with a friend to travel Asia for 3 months and had to head home early after being hospitalised with pneumonia and pleural effusion in Cambodia. It took me 3 months to recover before me and my boyfriend headed out again for 6 months more of travelling. I know it all sounds crazy to go travelling when you’ve been through so much but this was my dream and no matter how awkward it was going to be, I wasn’t going to let my problems take it away from me. But here I am now, I’m in Australia, my symptoms have worsened severely. My back is in agony every day. The pain I can only describe as being severely bruised and Someone pushing / kicking on those bruises and my insides being pulled from my back through to my tummy (lower to mid back). The pain also causes shooting pains in my shoulder blades. I’m not comfortable walking, sitting or lying down. I’ve fainted and had such extreme fatigue it makes me feel sick. I have pelvic pain which jabs at me everyday day and stops me in my track. The other night I was awoken in my sleep with a sharp pain in my right mid back which came with every breath. I get pain all over my pelvis and when I lie down I have a sensation that my pelvis is being pulled down. I’m mentally struggling. I’m in so much pain everyday. I’ve changed my flight and will be flying home early from Indonesia this month in 2 weeks. My boyfriend is so supportive but our sex life is non existent. The pain in sex has gone from a deep pressure (which was just uncomfortable) to feeling like I’m raw inside (brings me to tears). I feel like an utter failure, I feel so unattractive and useless. I’ve spent 10 years being treated and operated on for each seperate issue - told there is nothing wrong - and it turns out that after all this time it might be endometriosis.
I’m desperate to hear some success stories. Have you had symptoms dissapesr after a lap? Have you had an Interstim Implant and Endometriosis? (I can’t find anyone who has?!), has your pain during sex minimised / diasspeared after lap? Has your back pain gone? Any help is so appreciated. I’m starting to crumble and The crazy thing is that I’m most terrified that they won’t find endometriosis and I will be back to feeling at a total loss! Xx
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Low back and pelvic pain
Advice on pelvic/bladder pain and irregular bleeding
Ovaries removed- Success stories please
