Maybe I am BU or maybe not but it’s early days and I’m feeling so sad and angry and maybe I just need to to take stock contemplate it all?
So, I have suffered with my periods since they began at the age of 12. Very heavy periods which I would have to plan my life around and often stay at home on the heaviest days because of flooding. I’ve been so anaemic that I needed infusions last year. I have have been under the same gynae department since my mid 20’s. I’ve had recurring uterine polyps and thickening of my uterus. I’ve had a d&c, several hysteroscopies to remove the polyps and an op to remove the most stubborn polyps as there were so many at one time.
Last year I had a uterine ablation, I was hesitant as I was concerned about Post Ablation Syndrome which my gynae reassured me it was highly unlikely and actually laughed at me for asking so many questions about the procedure (turned to his nurse and said ‘Ah, this is the lady I was telling you about, the one who emailed so many questions’). Lo and behold I have developed this Post Ablation Syndrome and am now in agony during each period.
I have also suffered from daily gut issues since 1998. Again, endless tests (2 colonoscopies, 2 gastroscopes, a pill camera endoscopy and scan for bile acid malabsorption). All clear and I’ve basically been told my gut issues are all in my head even been referred to a neuro-gastro team at a London hospital by my local gastroenterologist. Of course, I have been thankful for all of these tests.
5 years ago, at the age of 43 my sister was diagnosed with endometriosis due to a mass on her ovary which turned out to be endo.
I have mentioned this several times to my gastroenterologist and gynaecologist and asked if all my issues could be related to endometriosis as I’d read it often runs in families. Basically I was greeted with a shrug to this question.
During my gynaecologist follow up in October and discussing my pain since the ablation I asked if I could have a contrast MRI scan to check things over. The results have just come back and surprise, surprise…..the gynaecologist says it is showing endometriosis and quite severe adenomyosis too. He is referring me to the endometriosis team.
Whilst I am happy for this referral and to talk with someone (eventually) about this condition I am so very sad and pissed off right now. I am 51 in March and have had decades of pain and discomfort within my pelvic region and with all of my digestive system. It has shaped my life in a way I hadn’t planned for. I have had to give up on a career I wanted because of my unpredictable symptoms. I now work part time in a job I’ve never really wanted to do and doesn’t pay half of what I could have earned. I’ve had to cancel so many plans and fun things in the past, promised my dc I’d take them places then cancelled last minute, again because of my unpredictable symptoms. That’s made me feel like such a crap parent.
Even when I mentioned my sister had endometriosis still no-one took me seriously. Last time I saw my private gastroenterologist she put her head in her hands and said ‘what on earth am I going to do with you?’, this from a woman I’m paying £200 an hour to see. Her advice for my pain and discomfort was probiotics and meditation!
I know it’s early days and I’ll probably calm down but how to I get over mouring those lost years I’ve spent in pain, discomfort and panic wondering what is wrong with me when all around me people (including family and friends) where telling me to man up and get over myself because it’s all in my head? And btw, I do spend most of my time with a ‘happy’ mask on my face and just get on with it even though inside I feel like shite.
I am so angry right now, also upset that I’ve had so many tests which some were far from nice and had I been diagnosed with endo earlier it would have saved the NHS a lot of money. I feel that I’ve been an unnecessary drain on the NHS.
Should I just shelve this in some far flung dark corner of my brain and push on through life? How do I do that right now?