Change needs to happen.

Throughout March we raised as much awareness as possible of Endometriosis. We educated others and hoped that it would create better understanding of what life is like when living with a chronic condition. It gave us a voice which we used and talked about what needs to change. As I sit here and write this I have mixed emotions. Since January this year there have been more than 100 deaths to suicide within the Endometriosis community. There have sadly been 2 within the last 48 hours. It speaks volumes about the pain that sufferers endure. We all know how helpless endometriosis can make us feel and how isolating it can be. I guess it puts things into perspective and with helping run a support group I put a message out highlighting to other ladies that “it’s ok not to be ok” and that “it’s ok to reach out for support” and they can do so by a message either on the group page or privately to one of the admins. It’s about letting others know that they aren’t alone through this. Early intervention is so important. 

There is still a lack of understanding amongst doctors. I’ve spoken to a few ladies who are in the process of being diagnosed and are being told there pain is either “constipation” or “just bad period pain.” There is a Menstrual Wellbeing toolkit on the RCGP website that can be accessed by clinicians but looking at going forward how do we encourage doctors to use this toolkit in order to ensure quick diagnosis and treatment? Is it more about highlighting that this toolkit exists and building menstrual conditions into CPD within the workplace? I’m incredibly lucky to have a good GP who understands endo and has put supports in place for when I need them i.e. if I run out of painkillers, need to be seen or be sent up to the hospital.  Unfortunately other ladies don’t have that and having good quality care and support is key when living with a chronic condition.

Last week we had the Worldwide Endometriosis March in Glasgow. This was well attended and attracted attention from the public. We gave out leaflets with information on the condition which included details of support groups that run across Scotland. There was various banners and signs created which highlighted how us sufferers feel in regards to the condition. It was also important to highlight that Endometriosis doesn’t discriminate and that everyone should have access to the right care and support regardless of gender when suffering from this condition. 

Endometriosis Awareness Month may be over but that doesn’t mean we won’t stop raising awareness and educating others. I just want to give a shout out to those who are campaigning to improve care and treatment especially Monica Lennon, thank you for all that you do. Also Edinburgh Council for acknowledging that this is an important issue and awareness is needed. We won’t stop fighting for change💪🏻

Dear Medics,

Dear Medical Staff,

When I came to you years ago in so much pain. It wasn’t the type of pain that would get better after taking a paracetamol, nothing touched my pain. I came to you for help hoping that as my main point of contact on anything medical related you’d give me the right help and support. For years I battled with you and was dismissed. I knew my own body and knew something was wrong but you thought different. Yes, I hold anger because I was dismissed so much but it has made me even more determined to make change and hope that in future no other woman will have to experience that delay in diagnosis and treatment. This is what I want you to know...

I have Endometriosis. A condition that causes debilitating symptoms resulting in severe pain, trips to hospital, surgery, difficult treatments and endless medications. Endometriosis is misunderstood, it's not just a bad period, it's more than that. Imagine your own 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.

Hospital for me means that I’ve tried everything I can at home and I’m not managing and need your help to make things manageable again. Most of us ladies are reluctant with having to go to hospital, we don’t want this to have to be our only option. We do everything we can at home to try and manage like having a hot bath, resting, heat pads and hot water bottles. I may look well but if you seen my insides you’d say different. I have Stage 4 Endometriosis, for me this means that I have an aggressive form of the condition which causes deep disease, organs fusing together, adhesions, constant pain and other debilitating issues. No matter what treatments I’ve tried the endometriosis just keeps on growing there’s nothing that I can do as it’s all about finding ways to manage the symptoms. This has become my “normal.”

I may not look unwell but when I come to you it means I’m really struggling. I may not show it because I’ve got so used to hiding and trying to carry on as normal when in pain. I may be that 21 year old that has been admitted due to a flare up but if you look at my notes you’ll see just how much of a fight I’ve had on my hands it’s been from multiple surgeries, endless medications and to going through an artificial menopause and only being 20 at the time. It’s a lot for anyone to get there heads around especially the information that comes with the different treatments. 

There is no cure for Endometriosis there are only ways to manage it. Please don’t tell me that “having a hysterectomy” or “having a baby” will cure me because it won’t. It’s not going to magically fix me. It can be upsetting for some of us ladies when you mention having a baby as some women unfortunately have difficulty in getting pregnant and can’t have a baby of their own. This can be a difficult conversation for some so please approach it sensitively. It’s also important for you to remember that this condition affects each woman differently and some women can manage their endometriosis through the use of hormones, pain relief or surgery. There is no right or wrong choice it’s about finding what works best for us. It can also be helpful when you suggest other options like acupuncture as I’m always looking for any other strategies in order to get some relief I may not seem interested at the time but I appreciate you suggesting things. 

Don’t be afraid to ask questions. It’s OK to ask about it. I’m not going to react negatively. Sometimes talking about it can help and it can feel like someone is listening. It’s OK to not know what to say, I don’t expect you to have all the answers. I guess there’s probably nothing that you can say or do that can make me better but your understanding goes such a long way and can have a huge impact. From the nurse practitioner who sat down with me and listened whilst I cried because it was so overwhelming and I was in a lot of pain to going and trying to talk to other professionals to make the situation better so I could get the right support I needed. I may not remember your name but I’ll never forget what you did for me. To the doctor and nurses in gynae triage who want to help me get on top of my pain and respect my wishes to be able to get back home. To them sitting down and asking “What does endometriosis mean for you?” and listen from the patients perspective and not just assume it’s “just a bad period.” It’s the staff who go that extra mile to make you feel cared for especially when in a lot of pain and feeling low.

This is just a few examples of what can help. It’s ok to ask questions and take an interest. I’m sure most of us ladies know that you do all that you can to help at what is a difficult time. All you do is appreciated and we know you go above and beyond to help. We may not show it but it really is. 

Twitter- @dionnemcfx

Instagram - @endowarrior_x

Full Council Meeting

I had the opportunity to attend the full council meeting at the City Chambers as a deputation. I’m passionate about raising awareness of endometriosis and I believe it’s something all women should be aware of alongside other menstrual conditions like PMDD etc which can also be a very debilitating illness. Councillor Mary Campbell put forward a motion which covered all aspects of menstrual conditions and how there needs to be more awareness, support and most importantly training for GP’s etc. 

The motion above passed unanimously at full council and was supported by Vice Convenor of Education, Alison Dickie who gave a brilliant speech in support of the motion. I had the council chamber talking about menstruation and it was a conversation that needed to be had -  it’s ok to talk period. 1 in 10 suffer from Endometriosis, 3 to 8% have PMDD and sadly an estimated 15% of women will commit suicide. This is a huge problem and we talk about the need for early intervention and preventing issues from getting so bad to the point it affects day to day life. I carried on for years not knowing that what I was experiencing was actually abnormal and later after years of dismissal finding out I have Stage 4 Endometriosis. I do wonder if I was made aware of it sooner could I have got help at an earlier stage in hope it would stop it getting so bad? There’s nothing I can do now as my Endometriosis is severe and if my uterus was 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 know that through raising awareness and educating others hopefully this can help to prevent any other women from going through years of dismissal and debilitating pain. 

We need to make teenage girls aware and the best way to do this is through schools. When I was at school I don’t remember covering much about periods all you were told is this is were you can access sanitary products if you need them. It’s not about scaring girls but making them aware so that they’re able to distinguish between normal and what isn’t. I have met girls over Instagram who are at that stage when they know something is wrong and are fighting for the right to be listened to. They are being dismissed and told “this is all in your head” “having a baby will solve the problem” or sent away and made to feel like they’re crazy. It gets to the point when you google your symptoms and just want an answer. I have been in that position before and know just how much of an effect it can have and it’s frustrating because it feels like your back to square one. If girls could have access to that information and be signposted to where they can get help and support that would make such a difference. Support is so important as these types of conditions can have a detrimental effect on mental health. It’s showing that in any situation it’s ok to talk about problems and it’s ok not to be ok. I’m lucky to have supportive people around me and a support group I go to and meet other ladies in similar situations which does help a lot. 

If anyone ever needs support it’s ok to reach out, you’re not alone in this. 

Breathing Space - 0800838587

Samaritans- 116 123

Endometriosis UK - Charity

Saying Bye to 2018: A letter to Endometriosis

Dear Endometriosis,

What a year it has been, 2018 is finally in the past and my god you haven’t half tested me this year. There have been times when you’ve broken me and I’ve not had much fight left in me. I knew I couldn’t let you win, you are one bastard of an illness. You’re always there and are always cause some sort of problems. It’s having to adapt in order to not only manage but function. It’s watching what your eating and drinking and recognising triggers for a flare up, planning outfits in order to hide the horrid bloating and living in leggings and loose fitted clothing, making sure your well equipped with medications and heat pads so you can use them the minute the pain starts. You have taught me to appreciate the good days and hold onto them tightly💛 The days when you are able to say “you know what I can do this” and feel that spark of positivity.

There have been days when I just can’t manage the pain at home and have had to be sent up to the hospital by my GP. Admitting defeat is hard but when in so much pain you find you’ll do anything for that bit of relief. I’m grateful to the hospital staff who do everything they can to make your admission as quick as possible. The nurses who are so understanding and make sure your written up for IVs or IM injections as soon as possible and want to do everything they can to help. I’ll always be grateful to the nurse who sat with me while I cried because everything had just got so overwhelming she listened and made me feel that it was okay not to be okay. I may not remember her name but I’ll never forget what she did for me. It’s those that help you through such a low time and do everything they can to help you, those that don’t give up on you the minute things get hard.

2019 may mean further surgery but it’s a step closer to getting my life back. Endometriosis took away my life and it won’t give it back. It’s the uncertainty of not knowing what’s ahead all you know is that you have stage 4 endometriosis and that it’s severe. 2018 saw me faced with the reality of being put through an artificial menopause. Being 20 years old and suffering from menopausal symptoms was hard. You couldn’t just turn around to a friend and say “ I’m going through the menopause I’m having a hot flush,” or the prospect of how do you explain to your boss that you are going through a shit time and dealing with menopause. You hear other people say how bad it is and how they dread it and you just sit there nobody else knowing that you in fact are going through it. It was the hardest thing but I managed to bare it and got through it. The times I felt that I couldn’t get through this and I did, I survived the times I didn’t think I could do it. I had days I wanted to scream and cry and I allowed myself to do so then picked myself up again and carried on. 

Endometriosis brings uncertainty with it. The not knowing if treatments will be successful in managing the condition for you to have somewhat a normal life and be able to function. The not knowing if you can have children of your own and fall pregnant naturally. The uncertainty of not knowing what the future holds and what’s ahead. 

Today I say goodbye to 2018 you are in my past now. 2019 I’m ready for you and I’m ready to fight this bastard of an illness.

X 

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.