My Journey with Endo
I was diagnosed around 21 but for 3 years prior to that I had suffered. 18 and should have been in my prime but my life was taken over by extremely painful periods, weeks, and weeks of constipation, bloating like I was pregnant and sex so painful you didn’t want to do it!
I’m 44 now and love to see so much chat around the condition (although still not enough!) and when I look back on the last 26 years of life as an endo sufferer, I feel such mixed emotions.
How it's made me feel
Some days I’m angry, why me (although I wouldn’t wish this on anyone else), why do you have to fight to be heard (it’s not period pain), why is there still no cure (well that’s because no one understands it) why, why, why could go on and on
Then I have other days where I’m proud that I’ve lived with a chronic pain condition and I’m still fairly sane! I’ve held down a career and now have a story to tell to help others.
Some days I cry, because the pain, low mood and anxiety are just all too much.
Others days I’m sure I’m a nightmare to live with and be around but you will need to ask my husband, family and friends to comment more on this!!!!!!!!
I know many people can say this who suffer with chronic illnesses, but you don’t understand until you suffer with endo. You look fine on the outside and because you are proud and don’t want it to define you most people never ever see the person crying in pain in bed, they don’t see you in doctors/hospital fighting for a diagnosis, they don’t see you recovering from surgery. They see you, the you allow them to see. The good you, the pain killers to the max you, the endo warrior you!
3 years to be diagnosed is very good, on average it takes 8 years and that sadly is because to get doctors to believe that it isn’t just bad periods is hard. Mine only took 3 years because it impacted my bowel so much so my care started on a different route, a route that led to me being told ‘I just had a lazy bowel’ but when one day I’d struggled to work and collapsed I was lucky to find a consultant who said, this lady needs to see a gynaecologist I suspect it’s something to do with that not her bowel. Thank God to him!
I’m 15 operations down, some would say this was very bad diagnosis and some days I agree (in the early days until I was referred to Chris Mann). It was very easy in the early days of my journey to just keep doing short term laser treatment to try to fix it, telling me get on and have a family it will fix it. At any early age it’s not what’s on your mind, you just want to be fixed and well.
What i have had
My experience with endo involves my uterus and bowel being stuck together with adhesions, urethra Endometriosis which led to a re implantation of the urethra to the bladder and I’ve lost the right ovary along with a fair amount of scar tissue now as well, oh and a herniated scar line as it had been cut so many times from belly button to bikini line. As I’ve already said I’ve had 15 operations, 4-5 mirena coils (which was going to help everything!!) and a couple of tries on zoladex. But I still know reading some people stories I haven’t had the worst endo.
Having endo that has had a massive impact on your bowel and bladder knocks your confidence, constipated, an out-of-control bladder, pain, forced into the change and the symptoms that come with that etc……. and all between the ages of 18 - 35, Yes, I got anxiety and when I write all this, I’m not surprised but my god after all the years, all the operations, all the mood swings this proved to be the hardest to deal with!
It didn’t come from nowhere; it was a build up over the years but on around my 12th & 13th operation the outcome would always be talk of a hysterectomy. It was getting to the point that it was all that maybe was going to help, I got my head around it (after a few more surgeries just to see if they would help me for a few years longer!!!!!)
The Hysterectomy route
I was booked in on 3rd December 2016, the day before my mom passed away suddenly. I don’t want to bring this off endo, but I want anyone reading this to realise whatever life keeps throwing at you, you aren’t on your own! She (my Mom) was my best friend, it turned my life upside, I was lost, every appointment, every operation etc….. she had been with me. Grief, pain, No hysterectomy, and anxiety. It was all out of control, but I still had to try to get it fixed.
Fast forward to April 2017, the 26th I embark on the ‘h’ journey again. I was nervous, felt uncomfortable even at operation 15 but it had to be done and I went to theatre in Edgbaston Hospital. I woke up in intensive care in the QE. I’d had an anaphylactic shock from a drug in pre op. Had a cardiac arrest and was dead for 2 minutes. Again, I was very lucky, they saved my life but sadly I’d still not had a hysterectomy.
Where next………… anxiety like I’d never felt, I was so paranoid about my allergy, my pain, basically my life. Everything had turned upside down in such a short space of time but the awful disease in my body was still in control. I had to take some time out of focusing on the endo and try to fix my mental which was now huge problem.
Where i am now and my advice
At 44 now I’m in control again (of the anxiety) and never did have the hysterectomy, I found other ways to manage the pain, the mood, the anxiety, and that’s why I was so passionate to create my own CBD brand. Yes, I still take pain killers, yes I still have days where I’m wiped out with pain and mood but CBD has helped so much in all areas alongside other treatments
I’m Perimenopausal now, maybe at the other side of menopause the endometriosis will become a thing of the past but one thing this whole journey has taught me is to keep fighting. Fight for a diagnosis, fight for the right treatment, fight for the correct pain relief that works, fight to keep what is important to you in your life. I’ve still had a successful career, no children but plenty of friends and family who may not have understood but have been 100% on the journey with me and I have the most amazing husband. Anything is still possible, but you can’t hide, you need talk openly about your symptoms and feelings. Yes, it hard, yes, it’s awful but really try your hardest not to let it define you. That’s been my moto but trust me I’ve hated it as much as I’ve been balanced with it over the years x