Newbie singing the same tune.

[PurpleSynesthesia]

Hello everyone,

Quick(ish) into - I'm not yet diagnosed with endometriosis but so sure I have it. I'm 35 & have suffered with severe period & ovulation pains since I was 13. Over the years, the cramps, sharp pains, fatigue, exhaustion, anxiety & depression (etc.), in between those 2 'regulars' have increased in frequency and severity. I'm under gynecology, but haven't heard from them since March... Lockdown has put spanners in the works for so many, I know I'm not a special case!

Recently found 2 hard lumps (size & solidity of an uncooked grain of rice), inside my rectovaginal septum, (when inserting my Ruby Cup - which is amazing btw, so much better than any other I tried, doesn't irritate my cervix at all, doesn't stick & I don't have to do the detrimental "pelvic push" to remove it. Has reduced some of the cramping severity during my period. Highly recommend, even for someone with a prolapse). The nurse laughed at me & told me to stop "fiddling" ... Speechless, insulted, angry, upset. In her 'professional' (non-gynecological) opinion, there's nothing wrong... Even though they hurt to touch, when I have sex, insert my cup.

I get sharp hot pains that shoot through from my sternum/left ribcage to my left shoulder blade, these happen most days & nights now.

The list goes on...

Just wanted to say "hello," & actually get some advice/ support /knowledge from like-experienced ladies, and not be laughed at or made to feel like a fool.

Hope you're all keeping as well as you can,

God bless x

[Moon_maiden]

Hi

Sorry you had a poor experience with the nurse, I can only say try to ignore it and put it down to ignorance. You could complain, but it’s a stressful process.

Have you tried called gynaecology appointments, also check for cancellations, at this time of year people do cancel.

Most have been through horror in getting diagnosed, I think O was lucky, only took a year when things got really bad.

Have you had an ultrasound or MRI? Endo won’t really show on ultrasound but it can rule out other things.

[PurpleSynesthesia in reply to Moon_maiden]

Thanks so much for your reply,

No, I don't think I'll bother complaining - I'm sure she isn't a malicious person, I'm just highly sensitive to being dismissed because it happens so often 🥴.

I am now in the process o f trying to get through to gynaecology & hopefully will get somewhere.

I had internal & external ultrasound scans, last year, which came back clear. The gynaecologist wanted to repeat those in June (didn't happen due to lockdown... Hoping to bypass yet another scan).

I had a horrible experience, at 16, where a gynaecologist violated me, so I am finding all this extra stressful. I have made them aware that I need to see a female gynaecologist but I still get palpitations thinking about it.

It's got to the point where the constant pain is driving me to fight for treatment, otherwise I'd just give up.

Thanks again, hope you have a great day x

[Moon_maiden in reply to PurpleSynesthesia]

Don’t give up 🙂, let us know how you get on.

You’ve had a horrible experience in the past. Regardless of male or female gynaecologist you can have a chaperone such as a nurse or take a relative/friend with you, regardless of lockdown.

I think most have had doctors being insensitive to this as a diagnosis.

Your GP can sort ultrasound if need be as well.

[PurpleSynesthesia in reply to Moon_maiden]

I finally managed to speak to someone on the phone yesterday, who brought me up to speed.

Firstly, the phone number I was given, by the nurse, connected to a totally different health centre than the one I was meant to be calling 🤦. But the receptionist told me that she had access to all my records and might be able to see what's going on.

She told me that the gynecologist had written to my GP saying something along the lines of, "seen patient in March, repeat scan in June & have follow up appointment." Only the referral for the scan was never sent & I never received a copy of that letter.

I nearly cried on the phone. I feel like I have to fight for everything at the moment - our house is experiencing subsidence at the moment & the people who own the trees just cut down the wrong ones - we have huge cracks in our house right now. My mum is chronically ill with an extremely agonising condition, my dad is struggling with fibromyalgia. They're both in their 50s. I'm trying my best not to be hypersensitive to every little thing, but I do feel more than a bit tested right now 😞

The receptionist sent a direct email to the gynecologist advising her of the error & told me to call her back (the receptionist) if I haven't heard anything within a week.

My period is due around Monday, but I'm cramping like it's day 2 already. The sharp/ hot pinch on my historical appendicectomy scar is working overdrive & the lightning storm outside describes the whole of me perfectly right now 🌩️😂.

Reasons to be cheerful - 1,2,3...

Hubby home for the week = fun times with all of us.

Lots of gorgeous wildlife visiting our little garden.

We have a home (albeit cracked), with everything we need.

Focus on the positives 🎉😅

I'll post again when I hear/ chase up any progress,

thanks for your time xx

[Moon_maiden in reply to PurpleSynesthesia]

Still positive thoughts 😀

The others do build up and all seems to happen at once and conspiring 😈

At least you can claim for your house on the other peoples insurance or the company that chipped the trees down.

Amazing receptionist though, someone who is proactive. It is frustrating when this happens though and way too common.

I’ve just found out have telephone appointment next Friday. Deciding if I can be patient or spend pennies if he has anything sooner.

[PurpleSynesthesia in reply to Moon_maiden]

Yes, lucky to have gotten through to such a receptionist.

I hope you get the news you want next Friday. Sometimes it feels a lot like a game of chance doesn't it?

[Moon_maiden in reply to PurpleSynesthesia]

Thank you

I don’t think he’ll be able to give the answer I’d love, wouldn’t it be great to be told have a tablet, it’ll all go away 😂🤣 but I’ll take what I can get at this point!

[PurpleSynesthesia in reply to Moon_maiden]

So, I've been phoning round to get my lost gyne appointment found & I'm literally just going round in circles. Referrals have been lost & nobody seems to want to pick up the responsibility to pick it back up again. I'm, yet again, waiting for a callback from someone. *sigh*

How is your "patient journey" going?

[Moon_maiden in reply to PurpleSynesthesia]

If it was me I’d give GP a call, explain and ask them to do an urgent two week referral. Nothing to lose. I think this will happen a lot because of covid, no reason for it have, and if it was electronic, likely impossible but a poor excuse.

D day for telephone call 🤞