finding support

[ThisOnesForMe]

Hi everyone,

I wondered if I was the only one that feels this way…

I’ve only recently been given a preliminary diagnosis for endometriosis at the beginning of 2021. I had my surgery booked for the end of august but because I was moving house I had to cancel. Then due to starting my final year of uni I have decided to hold off on surgery and try to manage my symptoms with diet and lifestyle, as well as contraception to help. This was a tough decision but considering I only have 4 months of uni left I wanted to focus on getting to the end of it and not having to take a few weeks off to recover.

I still have symptoms, all be it a lot more manageable than before I was on contraception, but I still get daily pain and feeling uncomfortable. I know I will get answers soon but my mental health is struggling. I feel like no one around me gets what I’m going through at all. Sometimes I just need someone to tell me that yeah it really sucks but I’ll get through it. Instead everyone I talk to keeps trying to give me advice and tell me to have the surgery. I feel really unsupported and misunderstood. It’s like because I’m not complaining about it everyday, it no longer exists. Then when I do complain I feel like I shouldn’t be and that I should be doing more to help myself.

I hope I’m not the only one that feels like this…

[BloomingMarvellous]

There are plenty of us out here and you’re certainly not alone. Reaching out as you are low is the right thing to do and it can feel really isolating as a condition to manage and feel overwhelming at times. It’s a thing ! Silence and being “brave “‘isn’t an effective road to take and there is no need but often if folk haven’t had experience like yours they may find it tough to relate however empathic they are.

I applaud your decision to keep things so you can complete your education and then focus on this afterwards if you can. It’s easy to think that - and please don’t get me wrong here it can be the right decision to have surgery - surgery will sort it all out and be the answer. It’s one possible route and it doesn’t always “ sort it out “ Taking a broader view is healthy and sadly many who don’t experience endo don’t realise that the surgery isn’t a 💯 fix. It’s part of a management strategy. One of many. Information is key and getting the best scans by the best qualified sonographers ought to give you a fair idea of what you’re tackling without having the intrusion of surgery at this point.

Which brings me to diet and lifestyle. This a wide field with many possibilities some of which will be useful and some blind alley’s . There is also a lot of woo woo stuff out there so take the sceptics view rather than leaping on band wagons out of a desperate run from the pain at 3am. You won’t always know which is which because there are multiple layers and different endo types as such that respond to different protocols. There are some common factors however that are useful places to lean into as a starting point that you may or may not have encountered.

My journey brought me these gifts along the way - and there are others out there. All I can say is make sure any info is backed by proper studies, impeccable training and knowledge and is broader based than just my aunties niece was helped by this random stuff from deepest outer space…. I like Kate Edmonds book Heal Endo that explains a lot about endo , recent views across the board and support strategies including when to consider surgery rather than battle with creature, pelvic floor health and hypopressives I think really helpful try your local specialist pelvic floor physio for NHS referral at a BSGE centre . If your not sure about the why this is relevant have a listen to Dr Angie Muller’s talk with @leah-brueg on her podcast at about an hour it’s a highly revealing take on pain/ hormone balance and endo issues from the pelvic floor side of things. My last tip is getting a handle on the mechanisms of pain and how they function. Understanding this means we can better advocate for the best pain Care possible for ourselves instead of just blindly reaching out for anything to deal with the difficulties. Knowing you’ve got some understanding and handle on this is essential for supporting our mental health. I like the Curable app programme alongside a centralised pain relief instead of waiting for years to be given “rubbish or inappropriate “care by over busy pain teams.

Last but not least giving nutrients the best chance take the best quality at proven doses for at least 12 weeks will give the clearest indication of a helpful, or not, route to market and beware heavy dietary restrictions that can be problematic long term with their own mental health consequences. It’s all too easy to end up on a highly restrictive protocol in the name of health and end up on an endurance programme instead which is devoid of warmth, love and humour with minimal returns and long term mental struggles.

Trust yourself and keep reaching out . You aren’t alone.

[ThisOnesForMe in reply to BloomingMarvellous]

Thank you for all the amazing advice. I was given heal endo for Christmas so it is on my reading list for this year. The pelvic pain is definitely my worse symptom, but finding a pelvic floor physical therapist that actually wants to help has been so difficult… I’ll keep trying and keep fighting.

Thank you so much x

[Kneesocks22]

Hi there,

Trust me your not the only one to feel like this!

I think those people thy don’t have endo don’t understand what the daily struggle and pain we have to endure. Like I have it and pain manage but eating ibuprofen/paracetamol.

You are supported here. You need to do what’s best for you. I understand the uni part and it’ll be hard to cope with like surgery and recovery during that. Once you are ready and have your final year done then you can chase everything up?

[ThisOnesForMe]

Thank you for the support and understanding. It can feel so lonely going through this alone but it’s amazing to have a community that understands x