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💪🏻

"Sometimes you need to do what's best for YOU"

The last time I wrote I was coming to a decision regarding treatment options to manage this illness. It's been a really difficult decision to make as there's been so many different things on my mind related to fertility, impact this illness is having and other people's views/concerns. But also looking at the fact that the consultant has said that the surgical route isn't necessary at the moment and it's more looking at what we can do in the short term. It's all complicated but I decided that I can't go on how I am at the moment. Its when you don't think it would get to that point where your just so desperate that you'll try anything. I guess it's looking at the "my body, my decisions," and realising that your the one in control and only you can decide what's best as nobody can make the decision for you.

I decided that I'd go through with the induced medical menopause and get the decapeptyl injection. I had second thoughts when in the waiting room I must admit. The question of "Am I really doing the right thing?" kept going through my mind. The injection itself was fine and the HRT alongside it isn't too bad at the moment. The only troublesome issues really have been the bloating, nausea and headaches. I've been finding myself having to go for naps but it's helping with the headaches. My stomach is quite sore and feels tight so maternity clothing has been a MUST this week as it's been the comfiest thing to wear. The issue I've found is that there's limited information out there about GnrH treatments it's more about personal opinion and doing what's best for you. There's not really much information that's suited to the patient but a chat with your GP or consultant can be useful. There's also in some areas that has accredited endometriosis centres the specialist nurses who can offer advice. The injection I get is every 28 days it can be given by the practice nurse and as well as that I'm taking a drug called Tibolone which is HRT and that just relieves menopausal symptoms and protects the bones as there's the risk of osteoporosis. 

https://themighty.com/2017/01/endometriosis-belly-stomach-maternity-clothes/

The above article really explains it so much. I am sure that many sufferers feel the exact same way about their body when going through "endo belly" but body image is affected as its about the need to hide the negative sides of the illness and it makes you more self conscious of how you look. I suppose the good thing as well is I can hide a heat pad under my clothing and nobody can see it. You know when your a chronic pain sufferer when you have four boxes of thermacare heat pads so your well prepared if a pain flare happens. 

People say it gets worse before it gets better so it's being prepared for that and giving it time. It's gonna take time to adjust to everything and I need to be patient with my body. I'm not sure how I feel about everything at the moment really it's all still quite uncertain but time is what I need I think. It's hard because people aren't really sure what to say about things currently as they say there isn't really any words of comfort or anything. It's like when supporting others with this illness around the same age or just a bit younger than me I can find the words to reassure/comfort them in a way. It's hard being in a body that just doesn't work properly. I saw urology and they've just been dismissive and the follow up from my hospital admission was pointless as they done another scan the good news is the hydronephrosis has resolved but there is still a stone/cyst showing on the kidney but they are unsure which it is and have decided not to do anything about it and keep an eye on things. I've been telling them about all the issues urology side of things but they won't listen. Endometriosis has caused so many different problems and it's just shit. I didn't think I'd have to go through an induced menopause at the age of 20. I'm on so many different medications and have to sit and sort out my meds into a dosette box for that next again week. This is stealing my life away and I want it back. Someone needs to hurry and find a cure for this dreadful condition. 

"I'll rise up and I'll do it a thousand times again✨"

The last few weeks have been challenging. I've felt defeated by this illness so many times and that's been tough. Honestly so many times it's just seemed easier to sink into complete despair. Last week I ended up being sent up to ARU at the hospital from my GP as she wanted me to be further assessed due to high levels of pain and not managing to keep fluids or medication down. I couldn't even sit down in the waiting area because of the pain and I had to ask to go somewhere private because there was so many people in the waiting area who were waiting to be seen and I was in distress and vomiting with people just walking past and staring at me. I ended up stuck on IV fluids due to dehydration, morphine for the pain and IV antisickness. I went for an ultrasound and they discovered I had a kidney stone and that was causing hydronephrosis. I complained about issues with my bladder for ages the GP listened and referred me on but the consultants dismissed it all. They decided that they'd deal with it as an outpatient and because my pain was managed they were happy to send me home with morphine and other strong painkillers. I was glad to get home to my own bed even if I was well doped up. If anyone's ever had kidney stones then they'll know how bad the pain is. I've not heard about dates regarding further treatment but I know I've to go for lithotripsy. The stone has been really uncomfy but luckily Dr S prescribed me a higher dose of the muscle relaxant I was put on at NLU in August and its helping a bit. 

I saw gynae yesterday for the review appointment. I found out yesterday that my consultant is going away on maternity leave which means I'm now under the care of someone else. It's annoying as she was so nice and did listen. She explained about where they found endometriosis and said there was a lot and the bit left on my bowel is small however is too risky to remove. The focus now is to look at the longer term options of how to manage the condition. There's not much they can really do there's the options of just pain management which means being stuck on all these strong painkillers I'm already on or going through a menopause by going and getting an injection every month and taking HRT on the side of that. It's a lot to think about and such a BIG decision. I must admit when this was spoken about I did feel quite deflated because I'm only 20 and being told to consider going through an artificial menopause. A couple of weeks before the women at work were talking about it in handover and they just complained about it and I just sort of sat there not knowing what to say it was awkward.  It was actually a hard conversation to have and brought up a lot of emotion. The first thing people think about is "what about fertility and your ability to have children?" and that just sparks a whole new conversation. The whole baby chat thing I'm just unsure on part of me would love to be a mum but I don't know if I want to have children. I know that as much as I'd love to have a daughter I couldn't allow her to have to deal with endometriosis just because it can be inherited and it's a horrible illness to have. It steals your life away and that's difficult to deal with. I couldn't even go to uni last year because of this illness and it being around surgery time now this year I'm having to give up full time work because it's too much and I'm just not well enough. It's almost like your grieving for what you once had and now you've lost it and it's adapting to that. I couldn't hide it yesterday I admitted I wasn't okay to people when they asked even when my boss had phoned to ask how I was. I couldn't pretend it was all okay as I felt nothing but devastation yesterday. I mean what is going to help me at this time I don't know if prayer would/could do much. The amount of shit this illness has caused has been a joke. I'm not even living I'm just surviving. I don't even want to hear it anymore or how bad it is the one thing I really want is for this disease to be gone. 

"End Endo"

Things have been hard. I must admit. Endometriosis really has had a big impact on my body the last couple of weeks. The pain has unfortunately returned which is what we didn't want to happen. I've been meaning to write a blog post for a few weeks now but I just haven't been able to find the words. The hardest thing about this illness is just how much it impacts your life. I never thought at the age of 20 I'd be constantly battling a chronic illness, on so many different medications to manage pain and other horrible symptoms the condition causes. The endless hospital appointments and surgeries just to try and manage the condition and try and become pain free. I sometimes do wonder though; ” If this condition was diagnosed earlier would it have made a difference to how things are now?“

I know that probably doesn't make a difference but you do wonder.

No matter how hard it is I've learned that with this illness sometimes you have to be your own advocate. It's been hard having to fight for support as well and be the one explaining what is meant to happen with my care. One person that has been my absolute rock this last month has been the Endo Nurse J. I was able to phone for advice and then she spoke to Dr M and got me an appointment to be reseen and helped create a plan on how to manage in the meantime with the appointment being a couple of weeks away. There has been one time when the GP wanted to send me up to gynae triage at the hospital to be seen but I was determined to manage at home. I'm gonna admit though I'm nervous/scared about the appointment to be reseen because I don't know what other treatment options I have in order to manage this and there's a chance it'll be trial and error again. I'd been having a lot of urine-infection like symptoms that has been associated with the endometriosis. The fast heart rates, high temperature, pain, tiredness, nausea and headaches etc. It's been horrible I've had to go to out of hours and be seen by them and put on antibiotics just to try and manage the symptoms. The nurse I seen at OOH on Sunday was lovely and knew a lot about endo. I know that the medics probably see me as one of the 1 in 10 with endo but this nurse put herself in my shoes and her words were quite comforting in a way which is hard to explain. My parents have been great as well, When Im in the middle of a flare they must feel so helpless. It must be hard for them. There isn't much anybody can really do but they just be there❤️ They put up with the tears and all the frustration, keep an eye on me when I'm feeling rubbish, remind me to try and eat something even though I'm not up to having anything due to pain and nausea, taking me to appointments and hospital when needed but most of all trying to understand the condition.

I'm devastated by this illness and the impact it has on my life. I find it so hard knowing that this is something that isn't going to go away and something I'll be stuck with. It's so hard at times not to sink into despair, there are times when all I want to do is cry and that's okay but I know I can't let myself sink deeper than that. There's the things that keep me going like family, friends and the Endo community💛🎗 Some days I'm just too exhausted to fight this illness but I know I must keep going. I know the most important thing I need to do is raise awareness of this horrendous condition and make people aware of it. There's such a taboo around reproductive health and that MUST change. I'm not afraid to speak out about endometriosis I am 1 in 10.

2nd Surgery & Post op

I've been a bit distant on this blog as so much has been happening since the last post I wrote. In August I had my second surgery for the endometriosis. The days before surgery I was scared/nervous as I knew this time round the surgery would be more complex. I had to be in hospital the day before surgery to start the prep and had to be in the ward by 6pm. On arrival everyone was so lovely and my dad took me down to the shop in the hospital to get something to eat for supper as he knew I was fasting from midnight. I didn't have much of an appetite if I'm honest I was mostly nervous about the surgery and I did snack a bit as I knew I had to keep my strength up. The nurse that looked after me that evening was so kind and I had a chat with her as I was feeling a bit emotional and I told her how fed up I was of fighting this illness. I had to have the bowel prep that night and it was an unpleasant experience. It was so uncomfortable and the pain from it was horrible I didn't manage it for long but the nurse said that was okay. 

I had little sleep before the surgery I was finding it hard to relax and the ward was quite noisy. When I got into a good sleep I was woken by the doctor as she wanted to do my bloods before theatre. I was then told it would be best if I went for a shower and got my stockings and gown on as I was first on the theatre list. The clinical nurse J came in to see me as I'd agreed to take part in a research study. The good thing about the endo nurses is you can actually talk to them and you don't have to hide your feelings from them. I found the chat with J helpful as I felt a bit more relaxed and less nervous at this point. 

Next thing I woke up in recovery. I was given pain relief and antisickness medication through the cannula. It was hard to keep my eyes open and I was in the recovery for about half an hour before going back to the ward. I wasn't in that much pain when I woke it was more an uncomfortable feeling as I was bleeding lightly and I had a catheter in. The nurse was a bit concerned as my heart rate was a bit high so they were doing half hourly obs on me. My throat was a bit painful from the breathing tube which was annoying so I kept drinking water to try and get rid of the scratchy feeling. When I was a bit more with it I had phoned my family just to say that I was okay and out of surgery. My parents came to visit a bit later on I was so out of it they were encouraging me to eat something but I didn't have an appetite at all and can't remember half the things I was saying to them. 

The two consultants and registrar came to see me one at a time. They wanted to see how I was doing and also make sure I fully understood how the surgery went. Dr M had came in and sat down and explained that the endometriosis was deep infiltrating (found deep within the tissue or organ) and was extensive. They managed to shave the endo off my bowel and remove most but had to leave a bit as they would've had to change the surgery to a laparotomy and I would've ended up with a colostomy bag but they wanted to avoid this. They did say that if I was to get anymore pain that further surgery would be needed in the future. I was grateful to them for doing the surgery and hopefully being pain free for longer this time. I was told that they'd shaved near a blood vessel and I had to stay in hospital as they needed to observe me just incase I was to become unwell. I had another two sets of bloods done so they could keep a close eye. That night in the ward the local anaesthetic from the incisions started to stop working and my pain was a bit worse than it had been. The nurses were so helpful and gave me oxycodone as tramadol wasn't as effective. The oxycodone worked within 25-30 minutes and I did feel a bit spaced out and like I was flying but I was more comfortable after that. I managed to get some sleep as I was aiming to mobilise out of bed that morning.

The student nurse helped me get out of bed and sit on my chair for a bit. I took it easy getting up but I felt quite unsteady but when I sat on the chair I began to feel okay again. The doctors said it was okay for the nurse to remove my catheter I was so happy when that came out. I was allowed to shower and I managed this independently. I had staff come in and knock to see if I was managing okay which I was. This was the first time I'd properly seen the incisions I had four this time and they were covered with dressings. I felt a lot better after a shower and my appetite had come back I managed most of my lunch and after ward round I was happy to find out that I was allowed to go home to continue my recovery. I was so looking forward to going home to my own bed and getting a proper good nights sleep as I was exhausted.