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 🎗