New to this..

[plantingsunshine]

Hi there, as the title suggests I'm very new to this - this being Endometriosis and also reaching out into the unknown for a little advice and reassurance.

I should probably start out by saying I've not been formally diagnosed with Endometriosis as of yet; at this point it's suspected/query after the second internal ultrasound I had a couple of weeks ago. It's now been confirmed I have Polycystic Ovaries, but the ovarian cyst they found during my first scan (the one I'd convinced myself was cancer) has resolved, so that is one little bit of good news. I had an appointment with my GP this week to discuss the results and have been referred to Gynaecology, as well as having started taking the mini pill in the meantime to see if that helps with symptoms. But that's kind of it.. I feel like I've been handed a shit sandwich and been told to not get tired of the smell until I get seen by the hospital. Apparently the wait times are around 6 months, which might actually be good in terms of the postcode lottery, but really doesn't feel like much of a comfort at the moment.

Endometriosis, and just chronic physical health issues in general, feel like a lot to wrap my head around. Naturally I did a deep Google dive after the sonographer mentioned it, as the only time I'd heard of it previously was in relation to a lady I used to work with who really struggled with her fertility because of it. So I do feel better informed compared to a couple of weeks ago, but there are days where it almost feels like a compulsion to keep trawling through information and I recognise that it's tipped over into unhelpful/unhealthy behaviour.

I should also probably mention that I have chronic mental health issues - namely anxiety and depression, which were already at a pretty bad point previous to all of this. And anyone who has mental health issues will know that it's such an energy to reach out, for starters, but also to advocate for yourself in a system that is chronically underfunded and can often lack a humanistic and individualistic approach. So to then be told that Endometriosis can take years to diagnose and it requires you to advocate for yourself because GPs might brush it aside or not want to refer you - well, that was a lot to hear. I don't feel like I have any residual energy to do another battle with the system. And I guess I am lucky that my GP referred me straight away, but the wait times and the unknown, whilst time is ticking away and my body is just working against itself - that is what I feel like I can't cope with right now.

I also feel pretty hopeless because the GP advised that I should go private if I could, and my work has recently rolled out private healthcare insurance. 'Great!' I thought. So straight after coming out of the appointment I rung the provider to see if they'd cover me and it turns out that the particular cover my work have consider any symptoms in the past 5yrs (even if no formal diagnosis has been made) to be a pre-existing health condition and it's not covered. I guess that complete see-saw of emotions - from feeling hopeful that I have control over something by ringing to arrange a referral privately, to crashing down after being told 'sorry but we can't help you' - has been really hard.

Couple all of this with other big/hard life situations (my Dad being diagnosed with cancer last year and the ongoing rehab of a back injury), as well as work pressure and the guy I was recently seeing breaking things off.. well yeah, it's a lot and I feel like I just can't catch a break right now. I started seeing a really lovely therapist back in March and she knows about all of the above. But I thought it might also be worth reaching out into a community of women also going through health issues to see if I felt a little less alone and completely overwhelmed by it all. Apologies if this is quite a heavy post, but that's just where I am with it all at the moment. Any empathy would be gratefully received ✨

[Bubblepoppy]

Oh I'm sorry for what you are going through I feel your pain when you see the gynecologist spell it out to them you need a investigative laperoscopy to check it is endometriosis, I've been through all different pills and surgeries to try to rid mine but nothing has worked as yet, waiting on the next surgery to take my overies, but keep your chin up us endo girls are some of the strongest here, this forum helped me loads for venting on and we all understand exactly how you feel, keep going girl. xx

[plantingsunshine in reply to Bubblepoppy]

Hi Bubblepoppy, thanks for your message. I'm sorry to hear you've been struggling too. Sending you positive vibes for your upcoming surgery ✨

[CitizenErased]

Hi plantingsunshine,

I'm so sorry to hear you're dealing with all of this. If it helps, I'm in a very similar situation. My GP has finally said he suspects endo after nearly a year of bad symptoms and six months of irrelevant tests such as coloniscopies, and I've only just been referred to a gynae and have been told that it may well be rejected, which will take me back to square one. So I understand your frustration.

Like you, I also have anxiety, and I fell down that hole of Googling endometriosis loads just to try to satisfy that horrid feeling of not being listened too and trying to justify what I'm going through. It's so hard talking to doctors about this with anxiety, isn't it! I get super tongue tied and forget things I want to mention and muddle my words and then they don't take me seriously. That's why I have to write everything down on a piece of paper and give it to them. But even then, it doesn't always work!

With anxiety, it's the not knowing that's the worst thing for me. It's constantly at the back of your mind.

I'm sorry to hear about your dad and the break up too. That's really rough! Fortunately the community here is really lovely and supportive, so if you need to talk to someone, there will always be people here to listen to you vent!

If you ever want to reach out and talk to someone, please feel free to contact me ❤

[plantingsunshine in reply to CitizenErased]

Hi CitizenErased, thanks for your message. I'm sorry to hear you've been struggling too and sounds so frustrating about the tests and potentially rejected referral. Anxiety is so crap isn't it! I had a list of symptoms and questions for my GP too as I find I also get muddled, which was useful to refer to. But yes, deffo - the not knowing is horrible. Thank you so much ✨

[Endolemon]

Hello 👋My journey took 8 years. Now I am waiting for hysterectomy and bowel surgery.

I can't understand why doctors sometimes don't believe and just ignored you. There was a LOT of pain through this years, my divorce, mental health affected.

I prefer to stay at home because of my symptoms ,have no life at all.

I can only hope that I will feel better after my operation 🙏

Wish you all the best 💛

[plantingsunshine in reply to Endolemon]

Hi Endolemon, thanks for your message. I'm sorry to hear you've been struggling too, sounds like you've had so much pain on top of Endo. Sending you positive vibes for your upcoming surgeries ✨

[CFin]

hi plantingsunshine, I’m so sorry for what you’re going through. I’m feeling pretty much the same way and feeling really negative myself too at the moment so I’m going to keep my reply short, I just wanted to reach out to you. Shit sandwich as you described it is just the perfect analogy!It sucks that the private healthcare wouldn’t cover it! Really unfair! Hang in there ❤️

[plantingsunshine in reply to CFin]

Hi CFin, thanks for your message. I'm sorry to hear you've been struggling too, and appreciate you reaching out despite you feeling negative too. I know that can be an energy. Sending you positive vibes that things improve for you and you feel a little better soon ✨

[Marcia71]

hi and welcome to the group no one wants to be a part of 😔. Have a search of this group for posts by Lindle as she is v knowledgeable and shares a lot of insights that may well help you.

[plantingsunshine in reply to Marcia71]

Hi Marcia71, thanks for your message. Noted on checking out Lindle's posts 👍