Hi, I'm Shell, I'm 34 years old and I have endometriosis, amongst a few other health problems. I was diagnosed officially in March this year (2013) after worsening pain, limited mobility within the last few years and an expanding lower abdomen that even my gynaecologist could not deny needed figuring out! Took them a while but anyhow, after an emergency admission due to severe pain that I.V. morphine couldn't take away, ultrasounds, and a CT scan they decided in an urgent, hurried way with scary whispers of tumours and the like to whisk me off that afternoon 2 days after admission, to the operating theatre. I genuinely felt scared, but just hoped I had answers. I wasn't to be disappointed!
When they got in there, the first thing that the surgeon had to negotiate with before anything else could be done, was to cut through the thick and plenty of adhesions. She told me there were that many adhesions she literally could not see anything. Once that was done, the first thing they wanted to deal with was the huge mass they had discovered on the CT scan. You know, the one that created the nasty tumour whispers and looks of pity and concern. Thank heavens it was not the C word, but still, it was a peritoneal inclusion cyst, and it completely filled my pelvis on the left side to the middle, front to back. This thing was huge. This was drained I know, and no little more except they don't know why I had one, as usually it is a result (although these are not your common everyday gynaecological problems, they are relatively uncommon it seems) of a previous pelvic inflammatory disease - of which I have never had, so if they don't know, I don't know! Frustrating, especially as there is a good chance it could recur. There is very little decent information out there on this, and I really have no understanding. Especially as a scan in the December the year before showed a cyst of only 2 x 1 x 2cms, how on earth did this thing grow so quickly? They had presumed originally it was an ovarian cyst or maybe a hydrosalpinx but hey ho!
After this pseudo cyst was drained anyhow, they found a loop of bowel had also adhered to my uterus and fallopian tube/ovary so that had to be sorted. Endometriosis spots were also found, on my peritoneal wall, my two ovaries and there were other places, but given little information and this is all I know. Since my operation I have tried the contraceptive pill, Mirena and now Depo-Provera injection, to little use. Next step is either a pseudo-menopause drug for 6 months, or a query hysterectomy. Neither are particularly inviting to my mind and so I have decided to try a more natural approach to helping the pain and symptoms. I am still on my injection but as I am not due to see my Consultant until the end of January, I wanted to also try a positive natural approach so I can feedback to her when I see her.
This is my journal of this journey. I run now every other day so will post on these days, but also may post in-between depending on pain, symptoms or anything else worth noting, and sharing. I also hope that my running will help me emotionally. Being in pain 24 hours a day to quite a severe degree again (yep, I know, that doesn't sound promising again, I am trying to put off the local emergency department as long as I can) is depressing, maddening, frustrating and angry. It makes you feel that everything is fruitless, why bother, what's the point.....I speak to a wonderful woman once a week about how I feel about all this, the fertility issues, the pain, and also from this my openness for the first time in my life, about things in my life that have hurt me, that gave me depression and anorexia as a young teenager through to my mid 20's. This is good of course, it is cathartic and also very painful at times, but nevertheless it is good. Yet it is difficult to not put on my 'oh, my pain? No, actually, that's totally manageable thank-you, I am doing good' face on, even to her, to my friends and family, my husband, myself.
What if, just what if, this running malarkey and getting fitter and active actually helps? How fabulous would that be! An emotional coping method for sure - feeling low? Put my trainers on and pound the pavement until it isn't so bad, isn't so painful, angry, irritating etc. If it becomes a tool, a prescription if you will, for my endometriosis pain and other symptoms then well, I wouldn't need hormones in my system injected or swallowed, maybe I wouldn't need the morphine and other strong medications I now take daily in a vain attempt to not feel some of the pain. Just imagine that for a moment. Any fellow EndoWarriors out there will appreciate my hope, for that blissful discovery, heck we all would eh sisters? Anyone with chronic pain can also understand. It is something many of us can only hope and dream for, yet never becomes a reality. Well, together, let's see how it goes. I hope I can make you laugh along the way, share relevant information, links and such. I hope we can share together the good, the bad and the ugly of this journey - as I know too well it will be all of these things at times.
Keep strong, keep moving and never, ever give in!
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