PLEASE HELP/ADVICE :( :( :( :(

[morningnoonannight]

I posted this over 2 months ago….

Just over 3 years ago I was diagnosed with endo after a very overdue laparoscopy. Before this time I went through many years of different pills all which didn’t work until I finally got somewhere and during my laparoscopy I was given the mirena coil. Over the 3 years I have had the coil my periods vanished, however around 1 month ago I had a very unusual heavy period and horrific cramping just like before, since then I have had bleeding pretty much every day and occasional bad cramping. Bad episode last night to which I decided to go and get checked out, the reason I had been putting it off is my GP told me I have to go the sexual health clinic. Anyways I went today and was seen by the GP there, I told her about my background to which she said she would do my smear test (first one as I’m just approaching 25 years old) first and have a look to see if she could locate my coil. After the smear she found it hard to locate my coil as for some reason the treats are ‘very short’, but she told me I needed to make an appointment at my doctors ASAP to be referred back to hospital as my endo was very bad and has likely spread. She also told me she wouldn’t be able to remove and replace the mirena as it would be very painful for me. Im very shocked to hear my endo is back so bad after only 3 years and I’m terrified my pains will return. Has anyone else had this happen to them? Will I ever get rid of it? I’m only 24 and just been married am terrified I can’t have children. Feeling helpless

SINCE THEN….

I have had GA operation to remove the pre-cancerous cells from my cervix (2 weeks ago) and today I had my appointment for endo…

I arrived at hospital outpatients early as advised and was told shortly after I would be waiting longer than expected due to being short staffed, I had the option to leave and go to back of waiting list or wait it out…. As I have been hardly managing I was no way going to come back at a later date. Having waited over 3 hours I was seen by a gyne doctor who was pulled in short notice to cover, she didn’t have my notes or anything so knew nothing about my past of endo. I literally had a huge list wrote down of thing to ask and tell them, so I brought it all up and all she did was re write it down. Then she examined me, it was very painful and she wasn’t being gentle at all in fact she was rough! She then said she couldn’t locate my coil therefore I need a ultrasound scan. I now have to wait 3 months for scan and only then will they see me again.

I’m at the end of my rope, I don’t know where to turn. The prospect of having to wait another 3 month in this agony is pure torture!!!! I want to complain about her but not sure what to do, I wish I could have seen someone who at least had my notes! I feel like they just fob me off, like imp some sort of liar! Please help.

[Kt_Cocker]

My goodness, it sounds like every womans nightmare! You poor thing.

Firstly (and in no way should you have to do this) you can ask to see a gyny privately, I think it costs about £240.00. Most towns have private clinics, its just a question of seeking them out.

Secondly, all hospitals have a complaints procedure and you would need to complain in writing. Info should be on their website.

I am pretty sure you can ask to be dealt with at a different hospital but you may have to go back to your doctor to be referred.

Lastly, your Ultrasound, once you have your letter you could ring up and ask for any cancellations? You can do this everyday until you get an appointment on that day.

I myself am going to do this for my next gyny appointment as will have to wait nearly 3 months otherwise.

You hang in there x

[morningnoonannight in reply to Kt_Cocker]

Hello, thanks for your support it really helps.

Since I wrote the above I have cried my eyes out but then pulled myself around as I always do picked myself up and wrote a very long letter of complaint and emailed it off. The patient assistance team have already called me back in touch and said they will escalate this and report back to me after speaking will all involved. I have also been given another appointment for 3 weeks time with the lead gyne at the hospital dealing with me, which has made me feel so much better too. I will keep posted on how I get on. Failing this i'm 100% paying to go private!

Once again thanks xx

[Kt_Cocker in reply to morningnoonannight]

Bless you, I am so glad things are moving forward and are looking a lot more positive for you.

Unfortunately these days, you have to be more persitant to get what you are entitled to.

Am also very proud that you complained as you have probably helped prevent the same thing from happening to some other poor soul.

I am reading a book called 'The Endometriosis Diet' and there are ways of lowering your 'Oestrogen' levels by avoiding certain foods and I think' well if it helps, I'll have a go!'

Very proud, well done you and I really hope this time you get sorted x

[morningnoonannight in reply to Kt_Cocker]

I know its shocking what we have to go through to get treatment on NHS. That was one of the questions I had to ask, as i'm also consider buying the endo diet book... also willing to give it a try x