Hi and thank you for visiting. The fact you are even on my page means another person is aware of Endometriosis! Happy Endometriosis Awareness Month 😊 I will give you some information about the condition and then I will tell you my story. Get a cup of tea. It's long.

Endometriosis is a condition that affects 1 in 10 women. No one knows for certain what the cause is and there is no known cure. It can be treated but the treatment options can sometimes have side effects that are almost as unbearable as the condition. Endometriosis gets its name from when the cells in the Endometrium grow outside of the uterus and attach to other areas of your body such as the bowel, bladder and ovaries. It causes painful cysts and scar tissue (adhesion's) which can fuse organs together.
It can impact day to day living, relationships, friendships and work. On average, it takes 7.5 years to be diagnosed. Once it is diagnosed the main treatment options are hormone therapy or excision surgery. For some people, a hysterectomy is the only option. The symptoms can include pelvic pain, irregular or constant periods, painful sex, painful bowel movements, fertility complications and chronic fatigue. I have chosen to raise money for Endometriosis UK because they are a charity who have worked hard at trying to make things better for people like me. You can read more about their work on their website. https://endometriosis-uk.org/

Money raised can help with research into Endometriosis and will help Endometriosis UK continue to provide support and guidance to women with the condition, as well as those closet to them. This condition is so under researched that some GP's and gynaecologists are unable to accurately diagnose the symptoms. It can only be definitively confirmed by laparoscopic surgery.
I thought long and hard about whether to do this or not, as I have only really discussed my personal experience in this level of detail with close friends and family. However, I believe telling my story may in some way help others who live with or alongside the condition.
I was first diagnosed with mild endometriosis when I was 18 after my first laparoscopy. Prior to this I was experiencing severe pelvic pain amongst other common symptoms. I was lucky as the initial treatment option I was given worked for a couple of years, thankfully with very few side effects.
When the symptoms returned I had numerous appointments with several different GP's. I was eventually referred to the gynaecologist after being sent to various other medical professionals, where he agreed to do another investigative laparoscopy. Following the surgery, he advised there was nothing wrong and diagnosed me with chronic pelvic pain. I was discharged and left to carry on with life.
At this point I was off work on long term sick as the pain was too much to cope with. I was back and forth to the GP again and was sent to the pain clinic to learn to manage my pain. I did find this helpful but it didn't make me any more comfortable. It taught me important skills to deal with the psychological aspect of living with chronic pain, which I still use now.
At 22 years old, my GP decided that based on my original diagnosis I should try a six-month course of Zoledex injections, which essentially put your body through the menopause to stop the ovaries producing the hormones which affect the Endometriosis. This provided some relief but the symptoms soon returned.
In January 2013, 4 years on from my original diagnosis, I was referred to the same gynaecologist who had diagnosed me with chronic pelvic pain. He reluctantly performed a third laparoscopy and removed a cyst from my ovary. After the surgery, he again confirmed that he didn't believe Endometriosis was the cause of my symptoms. I was again discharged.
I continued with the cocktail of painkillers and nerve relaxants and managed to get back to work. Each time the pain increased to an unbearable level, I would go back to my GP and would be prescribed more painkillers. I was on the last stage of the absence process at work due the time off I was taking each time the pain flared up. My employer had been (and still are) very supportive and understanding, however, the added stress of the absence procedure, with nowhere to go for medical support due to being discharged, was terrifying.
I had carried on like this until 3 years ago when the symptoms seemed to be worse than ever. I returned to my GP and was told there was nothing more that could be done. I had moved to a new house at this point and decided I was not taking no for an answer, so I registered with a new GP. As I now lived in a different area, I was referred to another hospital and saw a different gynaecologist who ironically had the condition herself!
She believed the symptoms were exactly like that of Endometriosis and prescribed me another 6-month course of Zoledex injections. I felt better than I had in a long time. We discussed that if this worked we could look at removing my ovaries to provide longer term relief. At 26 years old with no children, this was a huge decision to make and I spent a lot of time thinking about it. I had been told early in the process that a successful pregnancy was highly unlikely with my condition and scar tissue, so I had already come to terms with this a long time ago. Once I realised how much better I had been feeling it was easy. I made my mind up that this was what I needed to happen.
Around three months after the injections stopped I began to feel worse. I went for a follow up appointment and the gynaecologist who had been so encouraging and had given me some hope, no longer worked at this hospital. It felt like I was back at square one. The new doctor said that there was little that could be done, they would not consider a partial hysterectomy due to my age and not yet having any children. I should go back to the pain clinic, was his advice. At this point I could not speak, my partner Matt stepped in and insisted we got a referral to an Endometriosis specialist. This was in January 2019, 10 years into this experience and I was finally being sent to an expert.
When the appointment with the endometriosis specialist came I was prepared to be fobbed off as I had been so many times in the past. But this time it was the opposite. She listened, examined my medical history and said that she agreed with the original diagnosis and that we should arrange another investigative surgery to see what was happening. This was going to be the 4th surgery I had been through. She also explained a partial hysterectomy was not necessarily the best option due to the impact it would have on my bone density amongst other nasty side effects, and if we could avoid it we should. So, in that sense I was fortunate that the gynaecologist who had suggested this had moved on.
Throughout last year I waited and waited for the surgery date feeling increasingly worse as time went by. It's so strange how you adjust to being in pain after a while!
Finally in December I was there waiting to go to theatre. I stayed in overnight and the following morning the gynaecologist confirmed the diagnosis of Endometriosis.
She found that my left ovary was fused to the pelvic wall by bowel adhesions, which had to be released, and spots of Deep Infiltrative Endometriosis (D.I.E.) were also removed from the peritoneum, as well as other areas.
Sounds grim, I know!
It took me much longer to recover than I thought it would and even now it is a battle to carry on as normal. I felt guilty for being off work for longer than I had initially planned.
I had expected I would be told there was nothing there again. What I felt after the surgery was relief that I was not crazy, but then a lot of anger. Anger at the system I had been passed around in for so long and angry at myself for not pushing harder when someone told me I was fine. I know my own body and I knew something was wrong.
I had a realization a few weeks ago that despite the surgery, I don't feel any better than I did before. To say I am devastated is an understatement. This means it’s likely that nerve damage has happened.
I haven't got the same feeling of dread when I think about going back to the doctors as I had before, because I know I can call the specialist at any point and discuss next steps. Although this is still not how I imagined my life being, at least I don't have to jump back on the roller coaster and start from scratch again. If every woman with the condition could be listed under a specialist, the difference it would make would be incredible. It would cut out so much of the unnecessary appointments and anxiety that goes with it.
The problem we have is that so little is known about Endometriosis, there are not enough specialists to help the number of women who have the condition. In an ideal world when you attend the GP with these symptoms a specialist should be the next step. With more research and fundraising I hope more women will be able to see a specialist and hopefully one day there will be a cure.
Anyone that really knows me, knows I deal with everything with a sense of humour, however, I have struggled to see the funny side of this. But I refuse to be negative about it anymore, don't get me wrong I will have my down days but I must carry on smiling. I'm able to work hard at my career, have a beautiful home, partner and cat. And despite the horrible condition I have, I am still able to be happy. I don't know what is next for me, but I do know that the decision to hold this fundraiser has given me such a positive focus. I have been overwhelmed by the support of family, friends, colleagues and local businesses and I can’t wait to see how much we can raise together.
No condition that is as common as this should take 11 years of your life to get the right treatment. I am 28 years old, I have missed out on so much but I am also stronger than I sometimes realise. I will do my best to raise awareness in the hope that others may find strength from my story.

If you have made it this point, well done!! Thank you so much for reading, I know it's long but so is my story!!! As a final note, here’s some advice:
- To anyone dealing with this, whether it’s you personally, your wife, partner, girlfriend or friend, my best advice is to laugh. Make jokes about the situation, be open about how you feel and smile. Being sad won’t make us feel better. Make the most of the days you can’t do anything, watch Netflix, cuddle your cat and start again tomorrow. Also make the most of your good days, go for a walk catch up with friends and don't take any of it for granted.
- To those supporting people with this condition, my advice is to be their voice when they can’t speak. I would never have got the specialist if it wasn't for Matt being there and speaking for me when I couldn't speak through the tears. Also, top advice is fill up their hot water bottles and bring flowers and chocolate. Probably some healthy food too now and then. Most importantly make them laugh, educate yourself on the condition and encourage them to talk to you. It will help.
That's all from me, please help me raise some money and you all know more about me than I ever thought I'd share, so welcome to my crazy world! Thank you so much for reading and for your support!
Christie x
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