Angela was 29 when she found out she had Endometriosis. Now 32, she continues to have pain and problems, despite several excision surgeries. She lives in Darwen in the United Kingdom and she and her fiancé are the proud and happy parents of their fur-baby, Alfie. They continue to push on and live, despite these difficulties.
Angela’s Journey: I’ve always struggled with painful and heavy periods since the age of about 14. I was used to going months without one and then the floodgates would open and the Hell would start again. When I was 18 I was diagnosed with Polycystic Ovarian Syndrome. To be fair I was quite lucky with my symptoms. Yes I put on weight but thankfully I didn’t develop excess hair. It was manageable. I was prepared for potential fertility issues but I wasn’t overly concerned. And then it all went wrong. So so wrong.
Around November 2010 and my 27th birthday I started experiencing severe discomfort and pain in my pelvic area (or my noo noo as I call it – you will see I’m a little bit ‘special’ as this blog progresses!). Sex started to become painful and then there was the bleeding. Without wanting to be gross or too graphic for those of you with a sensitive tummy, I bled heavily for about 3 months. There was no let up. I will admit that I was terrified, especially after making the mistake of Googling the symptoms. After losing my mum to breast and ovarian cancer the year before I really should have avoided the internet at all costs. I trotted off to the doctors convinced that I had cancer and was most probably dying. The GP referred me to the gynaecologist at the local butchers, I mean hospital, who in turn referred me to a specialist at a neighbouring hospital. This specialist turned out to be a fertility specialist – not really what I needed but he said I needed a laparoscopy, which he duly carried out.
For a ‘minor’ operation, it knocked me off my feet and the recovery hurt like Hell. When I went for my follow up appointment he told me I had IBS and should lose some weight. Now I will admit that I had started to pile the weight on. My tummy was permanently bloated. I wasn’t fully convinced but was happy to have an answer, even if I doubted the answer given. I took the medication prescribed and then more problems started. Prior to taking these pills, I’d not had that many toilet troubles, but I soon did. As soon as I threw the pills away, these troubles stopped but the pain persisted and increased. This started many, many appointments with what I can only describe as a bitch of a GP who kept saying it was just IBS and I was over-reacting.
Eventually I was sent for an internal ultrasound scan. There I was told I had enlarged ovaries and the PCOS was active but there were no tumours and no endometriosis. By this point I was really starting to wonder what on earth was wrong with me. I began to worry that people would think I was imagining it or putting it on. In time I was referred to a gynaecologist at a local private hospital (although as an NHS patient). The man I was going to see had come highly recommended so my fiancé and I were feeling hopeful, especially after the first meeting with him. He seemed very understanding and sympathetic and said I needed another laparoscopy. So again I was put to sleep and prodded about with, and again the recovery was not fun. Thankfully my lovely man looked after me and spoilt me rotten.
The follow up came and the surgeon told me that he wasn’t surprised I was in so much pain as I had endometriosis. He showed me some scary pictures of my insides and then we discussed what my options were. By this time I’d had enough of the pain and it was agreed that a hysterectomy was an option, but first I had to take a 6 month course of Zoladex injections which would shut my ovaries down to see if this helped the pain. To cut a long story short, the injections did not help at all, just put me into a false menopause. So a full hysterectomy was booked and on January 31st 2013 I went into theatre and was removed of all my dreams of ever having children, removed of a large part of my feelings of femininity and removed of my sanity, internal thermostat and my control of my emotions.
In March I went to see the surgeon again and explained that the pain had not stopped. He did not seem surprised by this and said he suggested that I may have endo on my bowel and possibly IBS as well so he referred me to a colleague of his. This colleague was a brusque Yorkshireman who seemed to have no interest in what I had to say. He just booked me in for a colonoscopy (even now the words ‘bowel prep’ fill me with dread and make me hope that I am in close proximity to the toilet) and that was that. The colonoscopy showed nothing at all and so it was back to square one. I was then referred to a new surgeon – supposedly the best in the field of endometriosis in the area where I live. In March 2014 he carried out yet another laparoscopy which confirmed that the endometriosis was still there and that there was remaining ovarian tissue left behind after the hysterectomy. Then it was a 3 month course of Zoladex again which helped a little bit and showed the surgeon that the endo was still active.
Yesterday I saw the surgeon again and I will be having another laparoscopy to remove the ovarian tissue and any endo that he finds. It is looking like this could be the last surgery as each procedure is getting riskier and to be honest, they don’t seem to be working. Due to the nerve damage that the endo has caused, I will also be referred to a pain management specialist. Everyone always asks if Mick and I will adopt in the future and the honest answer is probably not. I always wanted children, but after going through all of this, I just want my life back. We want to travel and get back all the years that this disease has taken from us. We have accepted that children are not likely to be part of our future, but I will never rule it out 100% – plus a naughty little pup called Alfie keeps us on our toes at the moment.
Words of Advice for Us: Listen to your body. You know when something is right so stick to your guns. The number of doctors who tried to make me think that I was imagining it was ridiculous. I had to fight to even get diagnosed and treated. Persistence pays off so don’t take NO for an answer.
I want to send a special Thank You out to Angela for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Thank you!!! Angela, always enjoy the company of your fiancé and fur-baby. Live! And may your upcoming pain management treatments offer you some peace. Please keep us posted.
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.