This week as part of my month of mental health/invisible illness awareness posts my friend Rosie has kindly offered to share some of her story with me and my readers. Here is what she had to say:
Hello, my name is Rosie and I have Endometriosis.
Before I get started, I want to tell you what the definition of Endometriosis actually is:
Endometriosis is cells that are like the ones in the lining of the womb, but they are found elsewhere in your body. Usually in the abdominal and pelvic area but there have been rare cases of it being found elsewhere. Every month the cells act in the same way as your womb lining does but because the blood has nowhere to go, it causes inflammation, scar tissue and chronic pain. Endometriosis causes heavy, painful, sometimes irregular and prolonged periods.
Worldwide there are 176 Million women with Endometriosis, around 1.5 million just in the UK alone. 1 in 10 women suffer from Endometriosis; chances are you will know someone who has it.
It can cause other problems too, along with the chronic pain and inflammation. It can cause chronic fatigue, bowel issues, bladder problems and you are more likely to be susceptible to ovarian cysts. It can also cause infertility or problems becoming pregnant.
The only definitive way to diagnose Endometriosis is via a laparoscopy (keyhole surgery). The average time it takes to get diagnosed is currently 7.5 Years. It took 10 years for me to get a diagnosis.
My story starts when I started my periods. They were always irregular, lasted 2 weeks and were really painful. My mum took me to the doctor when I was 14 and they put me on Microgynon and told me my periods would sort themselves out and that pain is normal. Microgynon made me feel constantly sick and still every period was agony and went on longer than a week. At school I found it embarrassing, especially if it was swimming that week as I would have to tell my teacher I was still on my period in front of my whole class and my teacher made me feel as if I was making it up just to get out of class. I also found it difficult when we did Cross Country, my teacher would say running is good for period cramps and it would help, it didn’t! It was very traumatic at school as a teenager.
I was put on a different pill Cilest, which had fewer side effects for me but still didn’t improve the pain. The doctor told me to take ibuprofen which did no good. At the age of about 17 the doctor diagnosed me with IBS and said it was down to the pressure of A-Levels.
I put up with the pain thinking it was normal for a few years after that. I also had constant episodes of cystitis. The doctor tested me for Pelvic Inflammatory Disease and STIs and STDs which made me feel horrid as I knew it was none of those things. All my tests came back clear.
At 22 I collapsed at home. My mum and dad phoned an ambulance. They took me in and after 48 hours in hospital they decided it might be my appendix so they decided to take it out via laparoscopic surgery. They didn’t check for anything else.The pain continued and 2 years later at 24, I collapsed again and again I was taken into hospital where they decided to do an exploratory laparoscopy to see what might be going on which is when I was diagnosed with Endometriosis. They found it on the right side of my pelvis, uterosacral ligaments, on the right side of my uterus, my Pouch of Douglas and next to my urethra. They didn’t remove any.
For 2 years I trialled lots of different treatments, I ended up scheduling another surgery with a specialist where they lasered off some of the Endometriosis, apart from the Endometriosis next to my urethra as they thought it was too dangerous a position and they didn’t want to damage my bladder.I then tried 6 months of Zoladex which put me into the chemical menopause for 6 months, which really helped my pain. 18 months after my last shot the pain is back and I am getting more bladder pain, so my doctor thinks my Endometriosis has spread again and possibly onto my bladder. I take Cilest 3 months back-to-back so I only have a period every 3 months, at 29 my journey is far from over
After sharing a brief overview of my journey with Endometriosis with you, I wanted to talk more on the subject of surgery and medications.
I had my first laparoscopy when I was 22. It was an emergency op and I had never been under general anaesthetic and I unfortunately was on my own as neither of my parents could get there before I was taken to theatre. I was in hospital due to collapsing at home with abdominal pain. They decided after monitoring me for 48 hours that they would take my appendix out in case it was an unusual case of appendicitis (spoiler alert, it wasn’t!). I was lucky to have my own room as I was to find out over the following years. They didn’t have the time or expertise to look for any other reason for my pain although my abdominal pain made up the majority of my medical history since I was 14. I had no idea what I was letting myself in for recovery-wise. I have since had 2 more surgeries to learn tricks and tips to make recovery more bearable.
My second Laparoscopy was two years later when I collapsed again and ended up in A&E with a suspected burst ovarian cyst. I was in A&E for hours until I was admitted for further tests. I had numerous blood tests and ultrasound scans, none of which showed up anything, so once again I was in my own room (woohoo!) and was in hospital again for a few days until I happened to mention to a doctor that my mum had suffered from something called Endometriosis and asked if it could be that. I knew nothing about Endometriosis then. They decided to do an investigatory laparoscopy just to check, although they didn’t have a specialist Endo surgeon present. They did find Endometriosis, on the right side of my pelvis, uterus, uterosacral ligaments and in my Pouch of Douglas. They didn’t remove any at that time.
After I had my diagnostic laparoscopy, I attempted to take my pill (Cilest) back to back six months at a time but that didn’t work. I was pushed to have a baby as I was told this would stop my pain and if I didn’t try immediately I wouldn’t be able to have children. I’m glad I didn’t listen, although this was pretty terrifying to hear at the age of 24! I wasn’t in the right relationship or financial situation to settle down and have a family.
My pain continued to be out of control and I tried many different combinations of painkillers and contraceptive pills to try and combat it, but I continued to suffer. I was referred to an Endometriosis Specialist at my nearest Endometriosis Centre. My consultant decided at this time to do a third laparoscopy, this time to burn away some of the Endometriosis using diathermy. I agreed hoping for some relief. I was 27 when I had my third surgery; I then was offered Zoladex, a GnRH analogue which puts you into a temporary medical menopause. This helped my symptoms significantly and for the twelve months after my surgery I was more or less pain free thanks mostly to the Zoladex I feel. This time it was a day surgery and I was relieved to be home although it felt rather fast after surgery, at least I didn’t have to stay on a noisy ward, as I got more rest at home in the quiet and calm.
In the last six months, my pain is back with a vengeance. I went back to my doctor on numerous occasions as I was having too much time off work, which stressed me financially as well as putting my job at risk. I was referred to Mr Carpenter by my GP. I saw his registrar who was really friendly, understanding and knowledgeable. She informed me I need a fourth surgery as looking at my notes she saw that my Endo had spread , including next to my bowel and bladder and due to my current symptoms, they think it may be on my bladder now.
I am aware after years of research that excision surgery is the best option for some relief from Endometriosis. I had excision surgery with Mr Carpenter in June 2017 and my pain has been much reduced since then. I have had less days that I am stuck in bed and have had less time off work. However, although I am not having to take painkillers every day, I am writing this sitting on my sofa with a hot water bottle as I am on my period and in a lot of pain. Luckily it’s a weekend that I am not doing too much, so I’m able to relax a bit. So I do still have to alter my lifestyle around my Endometriosis regularly, but it’s not half as bad as it used to be.
I haven’t been on any hormone treatment since my surgery as I am trying to conceive, but unfortunately I am yet to fall pregnant. My partner and I don’t qualify for IVF as he has a biological daughter. So even though she lives 3 hours away and we only get to see her once a month at the moment, we don’t qualify for a child of our own, I have no children. I’m hoping we will fall pregnant naturally eventually, as we can’t afford IVF and I am not comfortable asking people for money on a crowd funding platform to fund treatments. We have looked into adoption, but I don’t think I am ready to give up on having our own child yet.
We have a dog, a Jack Russell, as part of our family and that does help a bit in regards to my mental health and wanting a child so badly. He keeps me going on my bad days, especially around my period when I know we aren’t pregnant again. I know I am not the only woman going through this, but sometimes it is a real struggle walking down the street seeing babies everywhere. I swear, as soon as you want something so badly and can’t have it, you see people with what you want everywhere.
I have a family with my step-daughter and our dog and my partner and I love them with all my heart. Hopefully some day I will get my dream of being pregnant and holding my own biological child in my arms.
Thank you so much to you Rosie for sharing your story, sending you all the hopes and prayers for the natural conception you are wishing for and that a real cure is found for endo but in the mean time enjoy your time with your amazing loved ones and your adorable (and also mischievous) little boy Patch.
Until next time, TTFN
Do you suffer with an invisible illness? How do you manage to get through day to day life? Any tips for others suffering? Let me know in the comments.
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