Hi this is my first post so please bare with me if I start rambling 😆. I have always suffered with bad periods but last year everything started getting worse. I was getting period type pain everyday, was badly constipated and had bad back pain. I rang the doctor in September last year and spoke to a nurse who told me to just take laxatives everyday and that would make everything better. I didn't do that as didn't seem too great of an idea. Anyway I started doing back exercises, bought a new mattress and started eating better all in the hope it would help but it didn't. In March this year I rang again and spoke to a doctor and I actually got a face to face appointment. He listened to my symptoms, felt my stomach and decided to send me for a ultra sound. The appointment for that came through pretty quickly and they found I had cysts on both of my ovaries, 1 of them quite big and that was when endometriosis was mentioned. I was referred to a gynecologist and had my first appointment on 27th July at a private hospital but on the NHS. It was a horrible experience from when I walked in, a nurse when I walked in was horrible to me because I had my husband with me. We weren't sure of the rules and we're fine that my husband had to go but she wouldn't stop having a go. I do suffer with depression and anxiety which is bad at the moment so this made me feel worse. By the time I got in for my appointment I was not in the mood and just wanted to get out of there so don't feel I said everything I wanted to say and ask. Although I had rang up weeks before to tell them I'd had a scan they didn't have my results so he didn't even know what was going on. He examined me and decided to send me for a MRI with suspected endometriosis. I had my scan on 7th August and was told if I'd not heard in 10 days to call. I gave them till today and called them. They said they have the results and made me a telephone appointment for 14th September, this was the nearest appointment apparently. I'm just a bit disappointed I have to wait so long, I just want to know what they've found. I suppose it means it can't be anything too serious but it still doesn't stop me wondering and stressing about it. I'm in pain with my back and stomach everyday. Painkillers don't work, the doctor put me on the mini pill but that's just made things worse as I'm having periods more often and they're just as heavy and painful. I also had a letter off the hospital yesterday with an appointment for 9th November which is 15 weeks after my first. Is all this wait usual? I tried to ring my doctor this morning but they are only taking emergency calls. I really don't know who else to turn too. I don't know how much longer I can carry on feeling like this everyday.
Waiting times: Hi this is my first post so... - Endometriosis UK
Waiting times
I'm not sure on private wait times but i posted a question on here yesterday about wait times and got a mixed response. Both nhs and private patients responded. I'm with nhs and have waited over 18 months now since my mri scans and my planned surgery has been cancelled 3 times! Hang in there and hopefully you will be seen soon. X
Thanks for your reply. That's awful, really hope you get sorted soon. I understand that endometriosis is mostly not life threatening so not seen as an emergency but when your in constant pain you'd think a little bit more would be done. I will just keep on waiting, it's all we can do.
I'm sorry you had a bad experience with the nurse, I too suffer from depression and anxiety and going to a new place not knowing the rules always makes me nervous. Those wait times sound pretty standard for NHS to me. I had ultrasound in feb/March, gynae oncologist saw me 2 weeks after said its endo, referred me for mri which I luckily got a cancellation the next day, but then I waited til end of July for my actual endo consultant appt (stage 4, awaiting hysterectomy). And now waiting til end of Sept for urologist, then it'll be 12 - 18 months expected wait for surgery.
Hi, sorry your feeling down and frustrated. I think you have been fairly fortunate in your wait times. My story is very different as are many others. I’ve been waiting for surgery since jan 2020 and got told recently it , it was likely to be spring 2022 at the earliest if I’m lucky. I’m now paying to go private but there was a 7 week wait to see her.
It’s seems gynaecology issues are under funded and not taken seriously enough.
My husband has recently developed a eye problem, referred to hospital by an optician, he got an appt within a week and has had further appointments for tests within another week.
He’s in no pain and can see well. He has been shocked by this barring in mind I’ve been unwell for over 2 years with pain.
I hope you feel better soon and treatment remains fairly swift xx
You too! I was initially seen end on 2019 and it's probable that i won't be seen this year now after my surgery 5 weeks ago was cancelled...thats a massive wait time definitely a post code lottery. People are so right when they say endo isn't necessarily life or death but, it's still life changing. I think I'm fortunate that i don't want children as a lot of women i know are in a very scary position of their fertility being seriously affected. I've fought sonce i was 18 to be taken seriously it was only 5 years ago, when i was 40 that i was diagnosed. Absolute nightmare disease x wishing you well xx
My situation is similar, I’ve been suffering since i was 17 but I’ve been on the pill since then, I’m 35 now without children. I like you don’t want children but I would at least like some degree of comfort more often if nothing else x
Definitely and especially when we've tried everything else or been fobbed off first. Winds me up now. X
Hi Thanks for your replies. It sounds like I have actually been pretty lucky so far. I apologise for moaning, feel bad now when others have been waiting so long for their appointments. I think I just got a bit worked up and didn't know what I should expect, the joys of anxiety 😏.
WAITING
Whyyyyyyyy is it so hard for a Dr to understand 😡
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