Hi guys. I’m just looking for some advice if anyone has any. I’ve been diagnosed with endo and had my excision surgery over a year ago now, but due to the COVID outbreak, have not been for my post-op consultation where I was supposed to have the Mirena Coil fitted under anaesthetic. Since, my GP is convinced that my endo has returned and may have spread to my bowel, but the clinic my specialist works from has been closed this entire time, so other than being prescribed strong pain medication (which makes me ill and dizzy) there is not much my GP can do for me. I’ve been on Prostap and HRT for almost a year now as well (despite being told they only recommend to someone my age no more than 6 months) which has helped somewhat but I can no longer take it as the length of time has already exceeded the recommendation.
I guess I’m just looking for advice (if there is any) on how I can somehow access help from a specialist sooner. I’ve managed to deal with the symptoms for so long but I’m really struggling physically and emotionally now as the external stress of uni, volunteering and work gradually increases too. I feel I desperately need to see someone. My GP is absolutely incredible but she can only help me so far as it is outside her expertise.
Thanks so much in advance for even reading my long post💓💓
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MichelleKelly
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I don’t know what part of the U.K. you’re in, or even if this available to you, but I have just recently found out about this service.. It’s called the Gynaecology Assessment Unit which is like an A & E for gynea issues! Your GP can refer you!
Second to that, there’s A & E, you can walk into!
I don’t know anything about the marina coil, but I had a copper coil fitted without anaesthesia, so not really sure why you’ve been told you need an anaesthetic, especially when there’s risks with anaesthesia!
Hey thank you so much, I’m in Scotland so I’ll look into this!
I’m having the IUD fitted under anaesthesia as I’ve attempted insertion previous and was in crippling pain to the extent I lost consciousness which they believe is due to the lining of my womb being closed as a result of my endo, so the idea is to dilate the womb and insert under anaesthetic
Massively appreciate you taking the time to respond xx
I have just read about it!.. I’ve also read that an anaesthetic cream can be used, at the gps office! Have your gps tried that! With Covid, not a lot seems to be up and running! I was due an MRI 3 weeks ago to check a suspicious mass and to see if an infection I had that almost killed me had gone... Still not had it, so I feel your pain!
I did get somewhere at the GAU, and now have a referral to MDT and tumour markers being pulled from bloods... But it’s painstakingly slow! It’s over 11 weeks ago since I walked into A & E with sepsis 🤬!
I wish these people would just get on with what they’re paid to do, instead of leaving us to suffer!
So sorry to hear you’re going through all of this! Feel a bit silly complaining about my situation when people like yourself are suffering so much more.
I truly hope you get the attention you need soon!! All the best, and thank you so much again for taking the time to respond to me❤️
We are all suffering in our own way! Your sorrows are no different than mine to be fair! The NHS shutting down to all, is the biggest crime of all to be fair! And, believe me, I’ve been in hospitals either as an outpatient and an inpatient and those places ain’t much different, other than having to wear a mask, gel the old hands, answer stupid questions like ‘have you got Covid symptoms?’ and last but not least, very few patients in them, while telling me on phone I may have to wait a long time for my appointment because they’re massively ‘busy’ when clearly, they really ain’t! Xx
Call to PALAS and explain them the situation.They will sort out your appointment.Also you can try contraceptive pills like mini pills etc instead of coil fitting and porstap.
Thanks for the advice! I’ve tried every other contraceptive avail to me (I’m unable to take some due to blood condition) and didn’t agree with any. The IUD is my only remaining option.
Hi,I'm sorry to hear you have not managed to have any appointments or treatment over the Pandemic period,
Yes you should stop HRT but if the GP agrees with you to stop,
Also you need to call and speak to the GYNE team or asked to be referred to the next closest one as this is not acceptable,
I have had 6 appointments (coil under general anesthetic, coil removal, polyps removed and new coil inserted with a biopsy done too, internal scans twice before and after, also.follow up at local gyne to be refered back to specialist as they r not local to.me,) with treatment given also the 7th one was pre consultant appointment with the endometriosis nurse, whom has ordered more tests for me to have done.
I'm just taking you my experiance over the last 11 months and the fact that you should be treated and if the hospital where you has initially is closed you should be sent to the next nearest one,
Also make sure you keep a file of.all your procedures and diagnosis,
Sadly my endometriosis is stage 4 and very aggressive its been so bad and the issues I have at the moment are crazy, I wish I was good and well but sadly this is a horrid thing to have, I'm now waiting for a MRI scan to see what has happened inside again.
but God will grant us all relief from pain and discomfort in the end, we will get better 🙏 Yes definitely you need to be proactive and push for what you need, really express your concerns and symptoms to ensure they get you seen by Gyne,
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