MY JOURNEY...

[SB90]

It was the year of 2015 aged 25. I mid-way through the year I began experiencing severe pains and symptoms such as nausea, lack of appetite and extreme stomach pains alongside other factors.. I went to the doctors and had continuous blood tests, urine tests to test for various issues.. nothing! The symptoms continued and became much worse. I was struggling to walk, felt faint and nothing collapsed several times in work. During this period of time I had several water infections, that became quite serious and painful. Eventually after 3-4 months of being told it may be constipation, IBS, Chrons disease, gluten intolerance, cramps to name a few I was referred for an emergency scan. I had my scan on the Thursday, the Friday I had an urgent call back and was informed to come in immediately. I went to the doctors, sat down to be told I had suspected cancer, I had two cysts approx 7cm on my left ovary. The words went over my head and I began to spin. I remember I went home, told my family and cried. I was referred to the cancer clinic 2 weeks later and approx 2 weeks later I had been put in for an emergency laparoscopy to investigate. I had a CA125 test (ovarian cancer) prior to the operation. I came round and to say the least, it was pretty crazy. My specialist, was extremely rude and whilst just out of theatre and high on morphine informed me of the following:

1. You have severe grade 3 endometriosis

2. You need to decided whether or not you want kids soon, as you will be infertile the way your condition is going

3. You will be put on hormone therapy as of today PROSTRAP SR to try balance your hormones

4. Your cancer results came back inconclusive, therefore you will need a further test

5. You will require further surgeries, we was able to drain your cyst but it is wrapped around your ovary and therefore to risky to operate, Bowel is covered and stuck to the side of your wall and right ovary swollen.

My head SPUN. He left the room, I cried and a few hours later my mother came in. I broke down telling her everything. She was in disbelief, disgusted with the manner in how this was conducted taking this further. To say the least after this, I was in and out of hospital being admitted due to extreme pain levels, asked and begged from a hysterectomy to no avail. I was 25, but to young apparently. I was informed this would shorten my life span, cause brittle bone disease potentially and arthritis amongst many other factors. Alongside this, a hysterectomy doesn't take away endometriosis. I was very unwell and also discovered I had E COLI kidney infection due to the blood contaminating . I lost a stone in 3 weeks and was constantly sick. I finally however got my cancer results back to find out I was clear. GREAT! During this I was put on nearly 20 different medications and hormone therapies such as PROSTRAP S2, tremadol, zapain, morphine, fluextine to name a few. The hormone therapy was the worst, in the end I become increasingly sick and much worse. I flew to the states and had naturopathic treatment, this consisted of : Chiropractic treatment, acupuncture, detoxification programme, hyperbaric chamber and a nutrition programme of vitamins and a strict eating regime. In the period of time I was slowly withdrawn off of ALL my medication. INSANE RIGHT? Well I felt not "drunk" anymore and foggy headed and become human again. During this time, I had X RAYS done and blood tests, discovering from the hormone therapy issued to me in the UK I had o estrogen in my body and from this developed arthritis down my spine. I came back to the UK and eventually changed specialists, as my current was extremely unhelpful in many respects alongside rude and ill-mannered unfortunately.

My new specialist was initially helpful and more understanding, seeing the extent of my condition he put me in to have my bladder reviewed due to concerns it had infiltrated and placed me on the waiting list for urgent to get operated on. Initially discussed I wanted to wait to decide, as he wanted to operate on my bowel, left ovary and another part of my woman hood as high risk. I went back to see him, however was greeted by his team member. She was extremely unhelpful, got my medication wrong, notes and even put me in for the wrong procedure which I only discovered once I personally called. I was also during this time placed on new pain medications. Zapain is what I am on 6-8 times on day. I also am gluten and diary free (I try my best to be this does help). I am currently waiting for a laparoscopy, surprisingly I am on the urgent and I have waited since December last year nearly 8 months! A joke… I have called and contacted them and seen my specialist again a few months again and he was concerned with my pain levels from review, my left ovary cyst is drained still but swollen, bowel has endometriosis on it and right ovary now becoming polycystic alongside another section of my womanhood is very severe which is a high risk area. He wants to now do a laparoscopy to initially see the level of damage as 2 years ago I was grade 3 and he suspects it has worsened. He then wants to plan more procedures from the initial investigation. My current specialist is lovely, however the wait time/communication is beyond ridiculous so I have now spoken to my GP who wants to complete an urgent referral to another hospital to get the procedures executed ASAP. So right now that is where I am at, I am now 27. Alongside this… I do live a normal life as possible and work full time teaching. It does affect me, get me down and I am in most days in severe pain feel sick, can’t eat properly and feel dizzy. But I am persistent and will again all odds, keep fighting this terrible disease. I want to share my story out there to others, so you know you are not alone. As I know from first hand experience, you feel that way and that nobody understandings. Know that you can get through this, even on your darkest days and that it isn’t in your head. There are others out there, we can get through this together and support each other.

Thankyou for listening.

S.