I've been reading the posts and looking on this community for many months but not actually had the courage to write my story yet. I thank all you ladies for your posts and your bravery, I truly believe only fellow endo sufferers can truly understand what it's like to live with this debilitating disease. So, where do I start...
I've always suffered with painful heavy periods from being 11. In 2016 I fell pregnant but had a miscarriage at 13 weeks. I fell pregnant again a few months later and had my baby by c-section in July 2017. Within the next few months I experienced a lot of pain in my abdomen and left side, i was in and out of hospital with no diagnosis. Around March 2018 I was in hospital for the umpteenth time and a doctor suggested endo, i'd never heard of it, but explained the unbelievable waiting list on the NHS. So I went privately through a BSGE specialist and had my laparoscopy by June. They found extensive adhesions from the section scar, attaching itself to my abdomen from my external scar up to my naval. They removed endo from my uterus and extensively on either side of my rectum. They said my section had been the catalyst that gave my endo a boost to spread quickly.
After the op I suffered a large heamatoma in my pouch of Douglas causing additional pain. I was told this would have to heal on its own and would take many months. I was in and out of A&E for many months following my op because of awful pain. However I felt very dismissed each time I went back as I was just told again and again there's nothing we can do about the heamatoma, go home, basically!
I started the prostap hormone suppressant injections the beginning of October as a last resort, taking HRT livial alongside. I have persevered for 3 months but won't be getting anymore injections as my experience has been terrible (moody, angry, tearful, suicidal, irrational, still had a full cycle ovaliating and menstruating, hot flushes, tinnitus) and it has truly affected the state of my marriage.
Since then I've been on regular codeine 60mg, laxatives, anti sickness, amitriptyline and oramorph. I'm rarely able to get out of bed. I have toe curling pain when I wee and bowel spasms when I open my bowels which leave me in a cold sweat with the pain. My Mum helps me with my daughter most days and my husband is exhausted all the time because I can do so little.
I am in constant pain and feel overwhelming guilt for the lack of care and time I can give to my beautiful daughter and my marriage. I have no social life and often cancel any arrangement with family or friends at short notice because im in tok much pain or havent slept becaude of pain. I feel low a lot of the time and have been taking antidepressants for many years.
I'm on a 9 month waiting list for my 2nd lap and see my consultant next on 21st of this month. I realise how terribly negative I sound but I'm struggling to see the light at the end of the tunnel at the moment and I realised that you ladies are the only people who would truly understand my story.
Thanks so much for reading, sorry for the essay. This group is wonderfully supportive and brings a wealth of knowledge from all our varying experiences, for this I thank you all