I really feel like my life is at somewhat of a standstill. I’m going on 24 years old and I have no idea what is happening with my life. I have so many dreams and aspirations but often feel like I’m just staring at the ninja warrior warped wall but I can’t see the top. My health is like a roller-coaster, I take two steps forward in a positive direction and then a spanner is thrown in the works and I cascade 10 steps back.
I’m not frustrated; I am at my wits end.
All my care is under the NHS and whilst I think we are incredibly lucky to have that available, sometimes the most important things take so long and it’s really hard sometimes.
If I or my family could afford private health care; we would. Being with the NHS when you suffer from problems such as Endometriosis is hard. You have to push to get the scan you know you need, shout to be given the medication you need and beg to be taken seriously.
The average waiting time for an MRI or Ultrasound in private healthcare is less than a week. With the NHS it can be anything up to a year including your first consultation.
I had an emergency MRI and I waited just under 4 months, and then checked my phone every single day for the results and nobody called. When I called I was told to wait until my appointment 4 months later. That is nearly a year for ONE scan.
I’m not here to bash the NHS or stick a finger up to private health care, what I’m saying is, I am a little jealous.
Private healthcare does not cure pain and it is in no way easier for those women, but it can speed up the process and for me, waiting has at times been unbearable.
Everything is harder, one different doctor after another. I spent 7 months being turned away with constipation and was only taken seriously when by chance there was a large cyst found during an ultrasound and surgery was required. Now after two years of fighting against this disease, I now have a more stable diagnosis; I suffer from chronic pelvic pain, stage 4 Endometriosis, suspected Adenomyosis and severe muscle spasm in my pelvis, shoulders, back and legs. I suffer from anxiety attacks daily. I am depressed and have been suicidal. I do not have a period and I am in pain each and every day. Some of my diagnosis, I know, I just KNOW could have been avoided with quicker treatment.
I spend each day fighting like so many others, putting on a brave face and trying to do what everyone else my age is doing. One night out with friends puts me in bed for 2 - 3 days after. Alcohol does not mix well with my daily medication; I tried a couple of weeks ago, it hurt and really wasn’t worth it. I can spend 4 hours out with friends for an evening, I look fine. But the part they don't see is when I reach home and I'm in bed for 3 days with unbearable spasms and pelvic pain. I am constantly trying to 'fit in'. In the past 12 months, I have been in the hospital 15 times.
The truth is, this has changed my life.
When you're fighting against an 'Invisible Illness' It's not easy. You can look absolutely fine on the outside but inside you're screaming. And what I find even more difficult is that these illnesses are not communicated or talked about enough in schools, the media or the internet. It's only the past year that articles have finally started making the pages of our national newspapers. I now spread as much awareness daily, as I want to make sure that the right information is out there. The sort of information I was so desperate to find when I first experienced a cyst or a bleed or a sharp twisting knife pain in my abdomen. Those who have seen me at my worst, this is usually just before I am rushed into hospital, say that it is like watching some sort of horrendous labour.
When you're fighting against an 'Invisible Illness' It's not easy. You can look absolutely fine on the outside but inside you're screaming. And what I find even more difficult is that these illnesses are not communicated or talked about enough in schools, the media or the internet. It's only the past year that articles have finally started making the pages of our national newspapers. I now spread as much awareness daily, as I want to make sure that the right information is out there. The sort of information I was so desperate to find when I first experienced a cyst or a bleed or a sharp twisting knife pain in my abdomen. Those who have seen me at my worst, this is usually just before I am rushed into hospital, say that it is like watching some sort of horrendous labour.
I am now in the best care through the NHS, I was referred to a specialist unit in Oxford after 3 different hospitals where the Gynaecology team just weren’t educated enough in the right areas to help me so they turned me away with another ridiculous diagnosis. Remember that just because someone is a Gynaecologist does not mean they know anything about Endometriosis and it does not mean they can wave a magic wand and make you all better. Just under a year later I arrived for my first appointment of many at John Radcliffe Women’s Centre in Oxford. They actively research into pelvic pain from all areas and deal with severe cases like my own. It was only when I arrived here that I was diagnosed with the spasms and pelvic floor problems, to describe the relief would be impossible. To have someone welcome you with open arms and say ‘We are going to help you and you do not only have Endometriosis’ is the only thing I have wished for and they gave me that.
I now have hope. I am now receiving intense physiotherapy, regular counselling sessions and 3 monthly consultancy appointments.
I could harp on about my story, go from start to now but what I am trying to indent in your mind is that; You are NOT alone, there is ALWAYS a way forward and you CAN get through this. In whatever area of life you might be finding it hard to cope, do not give up and talk to someone. In further posts, I will go into detail about my experience and where it all began, I am also working on an information booklet but right now;
I AM STRUGGLING, we as women, are struggling and I know, it isn’t fair. But we can help each other and we will.
If you have any questions or would like to request a post, please don't hesitate to contact me. You can find all my information on the 'About me' page.
If you have any questions or would like to request a post, please don't hesitate to contact me. You can find all my information on the 'About me' page.
With this post, I would also like to announce that I will be taking part in the 'British Vitality 10K' in London this year on my birthday (10/07), whether I walk, limp or crawl I am going to complete it and would greatly appreciate any pennies you could donate toward my chosen charity Endometriosis UK.
Please click the 'Just Giving' button on the homepage to donate and Thank You!
Tegan xx