Endometriosis CPG Meeting

I was given the opportunity to talk at the Women's Health Cross Party Group meeting last week and I have to say what an amazing experience it was. Thank you to Monica Lennon for giving me the opportunity. I spoke alongside Katy Johnston and Emma Cox who is the CEO of Endometriosis UK. It was hard to share my story but I know that some people in the room were thinking "me too" at certain points in my presentation. Public speaking has never been something I find totally nerve wracking but I must admit this time in Parliament the nerves were starting to kick in a lot more. The meeting was attended by various organisations, other sufferers, politicians and three NHS staff. My main priority was highlighting what needs to change. We are living in a system that needs to change as lots of women are being failed and end up slipping through the net. I asked the Scottish Government to make menstrual wellbeing in the curriculum mandatory in Scotland as I reflected that if I was taught what was normal and what wasn't I could've got help sooner and got a diagnosis quicker. I also asked them if there could be some sort of resource for managers about the condition and how to support women in the workplace. The concerning thing is we are meant to be protected under the Equality Act 2010 but women are still losing jobs due to high sickness absence. The Equality Act needs to be strengthened as it definitely isn't protecting us women.

I felt it was important to talk about the illness openly so that people could capture just how debilitating the condition is. I wasn't going to sugarcoat it and say that my experience of accessing the right care and support was good because it hasn't been in parts. I'm extremely lucky as I have an amazing GP who is just brilliant and is there through the good and the bad. I feel for her though as she has to put up with all sorts like the tears, anger and frustration but she listens and fights in my corner. It takes time to find a good GP but when you do that's when you know you've got someone that has your back. The awareness of endometriosis amongst GP's varies as each medical practice is different. You find that some have an interest in endometriosis and are keen to go and research for more information or ask questions because they're interested. 

In terms of going forward there is lots of work that needs done to end the inequalities that women are facing within the health system. We can voice what needs improved but it's about persuading those who have the power to make decisions. These changes won't be overnight but it will be a certain length of time. The system needs to change. There are women out there who are falling through the net and are unable to get support and that needs to be addressed. 

The system needs to change.

I haven't wrote on this blog since the start of July things haven't been great. The most frustrating part of it all has been trying to access support. There have been numerous attempts by my GP to get in contact with the hospital but she had no response. The week later things escalated and I end up in agony and sent straight to A&E. The staff in the observation ward were so kind, the senior charge nurse took control of most of my care and took the time to listen. Unfortunately I received no support from the hospital after being discharged but I was lucky I had a good GP and she had a plan for symptom management. I left a message with the hospital and a week later she called back. I explained that I'd been admitted and what had been happening she said she'd call me back and try and find me an appointment. She called back and told me to "Phone at the end of next month to see if there's any appointments and get support from my GP in the meantime until I see gynae." I was so angry by this response, The hospital are meant to be there to help and provide management of medical conditions. My GP had done all that she could and she was asking the consultants to come up with a plan. I hate to think how many other women are being dismissed and made to struggle like this. Early intervention is important they say but women are being left until a situation is unmanageable and they end up in A&E and other symptoms become problematic. Endometriosis is misunderstood, it's not just a bad period, it's more than that. Imagine your body betraying you and being in pain constantly. If my uterus were a person, I would, without hesitation, murder it and, after hearing all the evidence, years of pain and suffering, not a jury in the world would convict me. 

I had a conversation with the CEO of Endometriosis UK and we chatted about current problems within the system. One of the main ones is accessing the support from medical professionals. Most are uneducated and don't know much about the condition. They assume it's "normal" and that "it will get better when you have a baby." You go through various different doctors to be told it's just a bad period or that it's all in your head and recommend a referral to psychiatric services. I saw one of the consultants in passing who had dismissed my concerns when I first went to see her and only intervened and decided further investigation was needed when I was doubled over in a toilet cubicle bleeding heavily, vomiting and in severe pain. It's worrying when not even a gynaecologist or a urogynae can't tell the difference between normal and what's not. I've been lucky to have a brilliant GP who just totally gets all this and does everything she can to help. I feel sorry for her at times as she's seen me in some states. I get better support from my GP than what I get from the hospital. I have made that clear in a questionnaire which I will be giving to the nurse in the MDT team in September. I feel completely let down by the hospital and unsupported. I honestly don't have much faith in them at all. My GP had to fight to get me seen sooner as she even said herself we can't allow things to be like this until Ocrober. Another GP made a valid point last week after prescribing me an antibiotic for a UTI. She said " So why aren't they treating the actual problem which is the endometriosis?" but instead they're masking it with hormones and a mixture of painkillers.

The treatments have been absolutely awful and the side effects have made it worse instead of better. The decapeptyl injection made no difference at all it didn't help the pain but instead made me gain weight, caused fluid retention, headaches, nausea etc. The decapeptyl injection is actually used in men with prostate cancer but they believe it's okay to give to females aged as young as 20. The menopausal effects were difficult and the HRT alongside didn't make much difference. I now refer to it as the evil drug and I was glad I stopped it. I've been off it now for about three months and am still experiencing the effects of it such as the joint pain. Due to there currently being no cure to endo the treatments are more of a trial like they believe drugs like amitriptyline can reduce the pain as its to do with nerves. The drug made me feel constantly hungover to the point it was hard to function it didn't make any difference at all. I feel like us ladies are treated like Guinea pigs. We know more about the condition than what the consultants do.  You go into a support group meeting and talk about symptoms you experience such as recurrent urine infections which consultants claim aren't linked to endo and you find that other women are experiencing the same thing. 

I'm just so angry at the whole system. There are so many changes that are needing to happen and hopefully we will see things improve over the next couple of years. We deserve better treatment and support. There are so many determined ladies out there who I know will have an impact on the improvements that are desperately needed. We will not stop fighting. 

End Endo 🎗

#whatiwishilearned campaign

Endometriosis UK have started a campaign called " #whatiwishilearned " to raise awareness of menstrual wellbeing in schools. I made a post on my endo Instagram account and was amazed at the response and messages I've received of people sharing their stories or those that are in the process of being diagnosed.

 The petition is 300 signatures away from 15,000 signatures so please do sign it🎗 : https://www.change.org/p/ngibb-menstrualhealth

It's important that menstrual health is taught in schools. Girls need to know what is normal and what isn't. For years I was told that being in severe pain was "normal" and that " it was part of being a woman." I struggled on but the only things the doctors did was throw painkillers at me and tell me that "having a baby would solve the problem." I mean at the age of 16 and still being at school it wasn't the most appropriate answer. The struggle went on and the doctors kept telling me that "its all in your head" and that "I needed psychiatric help." I knew my own body and knew that my pain was REAL.

I wish I learned what endometriosis was and what the signs were. I still wonder if it was diagnosed earlier would things have turned out just like they have at the moment. There's a lot of "what ifs" with endometriosis and when doctors doubt you I guess you start to doubt yourself. I wish that back then I persisted and demanded an answer. It's weird looking back as all the symptoms and issues was actually endometriosis even though I was told it was IBS etc. I wish I knew that being doubled over in severe pain, vomiting and bleeding wasn't normal at all despite doctors saying it was. 

I wish that I learned about various gynaecological conditions such as endometriosis, adenomyosis and PID. Maybe if we were made aware of these conditions and not made to feel embarrassed or ashamed by the illness more people would speak out and seek help. We have saw stars such as Rosie Marcel, Penny McNamee, Halsey share their experiences of living with endometriosis. Rosie Marcel who plays Jac Naylor in Holby City has also had a storyline which saw her being diagnosed with endometriosis and having to have surgery in the show due to a burst ovarian cyst. This condition does leave scars due to surgeries but....  

“All the best people have scars. You’re even more beautiful now that you’re a little less perfect” ❤️

I wish I learned the effects that certain treatments would have on me both physically and emotionally. I wish that the management of endometriosis was better explained. Most doctors are giving false information such as telling women that a "hysterectomy" or "birth control" can cure endometriosis. It's awful that some women have to be faced with these kind of decisions. It's like being told that going through an "artificial menopause" would stop your pain when in fact for some it doesn't even touch it. Instead you get hot flushes, mood swings, headaches, tiredness etc and the side effects just become too much to manage. 

I wish that the system for endometriosis could change. We are stuck in a system that provides no support or understanding. I wish that the diagnosis process was easier as some women wait years to be diagnosed. There isn't enough emotional support when you need it as being told you have endometriosis is a big thing as you don't know how much your life is going to change but instead your left to go and research and find information out yourself. I wish that us ladies were taken more seriously, we know our bodies better than anyone else and know when something isn't right. It shouldn't be a constant battle in order to be listened to. The one thing that is positive is that you meet loads of amazing women and we all stick together and support each other. Sometimes all we need is just someone to listen to how things are for us. The only people that understand are those that are going through it. It's difficult for someone who has no clue to understand. But us ladies we are warriors and WE WILL RISE. 

I've been meaning to write this for a couple of weeks but things haven't been great since stopping the decapeptyl (also known as the evil drug) due to side effects. I guess that it's ok not to be ok and that self care is the most important thing.Endometriosis has a huge impact physically, emotionally and mentally. The support in the endometriosis community has been great and everyone's so understanding which makes a big difference in a difficult situation. 

 

An open letter to the enemy; Endometriosis.

Dear Endometriosis,

You have caused nothing but problems over the years and now my body is becoming tired of you. The years of doctors telling me the pain I was in was normal. Being told that having a baby would solve all my problems at the age of 16. To then being told I needed psychiatric help and it was all in my head. Those words hurt more than anything. I knew there was something wrong but nobody would listen. They all thought I was mad. I would come out of appointments in tears because of how patrionising the doctors were being. "Your pain is dysfunctional," they would say and send me away yet again to cope with it for three months before reviewing me and in that three months things became worse. They would give me hormone pills to swallow in hope to mask the problem. You must have laughed when you seen this was happening. The minute I swallowed that pill you caused me nothing but distress. The days spent lying in bed thinking of how much I hated everything and that I wasn't trying hard enough. I would just crash and people would tell me to give it another few weeks. The doctors not understanding what was happening and telling me "it's probably just a bad day." I bared you for another month before coming off you and when doctors asked me to talk about what the hormones did they couldn't understand why I reacted that way. 

One doctor finally listened to my concerns and after my first surgery when I woke up still groggy as ever I was told that it was you who was causing all these problems over the last 6 years. From that moment I didn't know how much my life would change. I learned that I was a part of the 1 in 10 women who have this condition. The endless trips to the doctors for pain control, antibiotics to help with the bladder symptoms and to sit and tell them just how shit lthis illness is and how it's constant. The procedures I've had to go through just to see what mischief you are getting up to inside my body. You attached yourself to my bowel and the doctors found out the extent after reviewing an MRI scan. They hand me the results by hand and it's a lot to take in. After thinking the first surgery would have solved the issues it didn't. I had to go through a second surgery to remove you and this surgery was much bigger than the first as they had to shave you off my bowel and try there best to remove enough of you to make me somewhat pain free. They had a tough job as you weren't superficial and on the surface but deep endometriosis which was excessive and had to be cut out and other methods used to get rid of you. You've caused so many other issues with my body and other specialists are having to get involved in order to try and manage the problems. 

People just don't understand it. They try I guess, we'll give them that. The amount of times trying to explain what Endometriosis is. When explaining about the condition and people assuming it's just "painful periods" but it's more than that. It's an invisible illness and if only we could show you just how hard a battle we have to fight. When people say "have you tried to change your diet? exercise? think positively? take painkillers? have a baby?" It's not that simple as there's no cure. It may help manage the symptoms but that's a temporary measure. Different things work for different people. There isn't enough awareness of endometriosis out there. Sometimes even the medical staff don't get it and the ignorance and dismissal can be so hard to deal with. When your lying on a hospital bed in agony and you inform them you have endometriosis and they become silent and are unsure what to say next. The questions they ask without thinking like "any chance you're pregnant?" despite seeing on the notes you are getting injections which bring on artificial menopause. When you ask a doctor a question about a treatment and the reply you get is "that's way above my pay scale." All medical staff should be informed about endo and be able to provide answers to questions we ask.

I'll be marching in Glasgow with my other Endo Warriors to raise awareness of this horrific illness. There needs to be more support and understanding out there. Endometriosis really is an isolating illness and it's so important to have support around you. The Endo Community is a place where you can get support and find that understanding. It's so easy to talk to someone else who's in the same position and actually be heard. To any women out there who feels alone, has nobody to talk to or is having a shitty time us endo girls are all here for you💛 I know this is difficult and scary but I'll tell you one thing you are so bloody strong. Us women, we need to stick together through this. We will not stop fighting💪🏻