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Hi I'm new, I'm Jenna. Am interested in speaking with the lady from Sydney with the pain/laproscopies/& terrible treatment from gynae/Drs - my heart goes out to you. Am new to this site so working out how to post etc..
IN 2001 i was diagnosed with endometriosis following removal of a cyst on right ovary - 7cm, & diathermy of small amount of endometriosis. No explanation or support given for the future but told I would experience more period pain from then on. Over the next 5 yrs I had 5 laproscopies for pain in pelvic area, pain worse during periods, 2-3 weeks out of each month. Very bloated stomach and people always think I'm about 4 months pregnant which is devastating as I have been unable to fall pregnant - now 38 and been on IVF twice. I had breast cancer in 2006 and now have discovered during personal research - overseas esp Sweden, Europe Canada etc that women with endo diagnosis are 8% more likely to go on to have breast cancer; risk of ovarian or skin cancer is even higher according to some medical journals. Despite the well documented evidence and research of endo & related conditions a reputable Sydney gynae in 2004 decided I didn't have endo & referred me to a psychologist (all in my head -heard that one several times).
Devastation - 2006 - cancer tumour was 3cm with evidence into lymph nodes so had to have chemo & radiotherapy. Chemo can cause fertility probs too so it's vital to have a yearly mammogram if suspected endo is apparent - don't take no for an answer as I met 2 other women during chemo who had endo as well. Endo does not always show up even during surgery & there are so many places to look that surgeons can easily miss an area. Lesions come from surgery scars & so the surgery iteself can cause ongoing pain for yrs. Gynaes & Dr's generally in Sydney have been arrogant, patronising & range from starting off helpful, criticising your previous surgeons, & even tho there is no definitive cure for endo pain or related gynae symptoms, if they cant fix you then it's your fault. Silly exercises are given & suggestions of anti deps, keep busy, go for a walk...asking what your husband thinks of all this..just relax and go on holiday, fall pregnant..etc (30% of women with endo diagnosis go on to have fertility probs).
Im now on contraceptive pill every day (no break each month) to stop periods & have break from pain (right ovary, pelvic area, pubic bone & radiates through to back, today it's a 5-6). Chronic pain can lower immune system. Early this year I was misdiagnosed as having depression (psych now say its grief & loss & due to chronic pain that hasn't been validated properly). Anti deps were increased to the point I became mildly psychotic & tried to suicide several times, in despair about the pain, the isolation, the stigma & being made to feel its all in my head.
I have a BA hons from Cambridge, 10 yrs happily married, set up my own healthcare consultancy in 2005 as was unable to continue working full time in the corporate sector. Have never taken money from govt or been a financial burden. Tried the endo diet, natropathy, chinese herbs, physio, herbal teas and am trying hynotherapy this Friday. I am very pro-active about finding a cure & 2010 want to be involved in advocacy and support for others like me. I see female psychologist to deal with grief & loss and also counseling re how I've been mistreated by some within the medical profession.
Dr Michael Cousins - Royal North Shoe Hosp is working on a national pain strategy for 2010 & pain summit to bring greater awareness about chronic pain & to improve how patients are treated. I'm currently with another pain clinic who say I can ring them if I cant manage the pain but today for eg say they are too busy and then left the phone off the hook. Am currently on tramal, panadol, voltaren supposetories & panadeine. Loss of appetite and have lost 6 kgs but stomach still bloated & severe pain.
My sincere sadness goes out to you all who are looking for answers, dignity & someone to simply walk with you through your journey. Please remember each day that the way you are treated (if poorly) is not right and is not acceptable. Pain & other symptoms are not to be left untreated, even if it takes yrs to find a way that helps. It is a basic human right to be as pain free & symptom free as possible. People's ignorance is not to be taken on by you - leave them with their poor mindsets & we pray that God will make a way and work through those within the medical profession who are willing to stand with us and look for correct diagnosis answers, cures, therapies & ways to help us lead an optimum, healthy life. Most of all I pray we find peace even in our darkest moments.
I am encouraged by people's willingness to share their experiences & it helps me identify that i am not alone in this oppression & it renews my hope for all the good, professional Doctors that are out there trying to make our lives better.
Jenna
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