A living nightmare!!!

[Clopam145]

HELLO, On the 15th December my daughter became suddenly ill, very out of character for her to be needing time off school etc. we went to the doctors who said yeah it’s a uti and gave antibiotics, this was repeated going to the doctors and being given different antibiotics for about 4 weeks, no antibiotics worked and when the urine came back from the laboratory no further action required but the symptoms persisted and are gradually get worse, eventually we was referred to a urologist... we could see a solution in sight, I got the letter through and rang the number, we couldn’t get an appointment till end of March, it was sole destroying, we tuck action straight away and went for a private consultation at spire hospital in LEEDS the next day. Cut a long but painful and expensive trip to spire hospital short it was a waste of time as he said the doctors are barking up the wrong tree and we needed to be referred to a gynaecologist and surgeon and needed urgent scan on her ovaries and full pelvic area and blood tests finally we thought we was getting somewhere ...to no avail, all the tests came back clear absolutely nothing showed up, my daughter at this point was devastated and zombie like as the doctors just keep on upping pain relief she is currently on 4hourly paracetamol and ibuprofen and now 60mg of codeine...we are at the point of waiting for the referral to come.

If I take you back to the beginning slightly my best friend Jade Jakira Meeson said to me do you think it maybe endometriosis??? I’d never heard of it and just brushed it off as I mentioned it to the doctors on one of the appointments and he said no way!!!! Jade was adamant that Chloe (my daughter) has some of the symptoms-

1. Starting period at 9 years old and right from the start they was debilitating.

2. It getting worse around menstrual cycle.

3.stabbing pain in lower back and cramping pain in lover abdomen.

4.Head aches.

5.unsteady on feet walking very short distances and feeling terrible.

The list goes on...

I guess I am writing this to see if we can get some kind of help as there is no change and we are still awaiting appointments...ANY HELP APPRECIATED.

Love a concerned mother, Liz. Xxx

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I first had endo symptoms at about 15, which were written off as grumbling appendix. Even though I was admitted to hospital 4 times over the next ten years with debilitating stomach pain it took until I was 35 to diagnose endo when they finally did laparoscopy.

Keep going back to dr and keep pushing for endo gynae referral. Her symptoms seem to fit. And even if it isn’t then they have ruled something out!

Nearly 20 years of feeling like I was going mad and being so ill (chronic fatigue and IBS - which I am convinced are linked to the endo) is no way to live.

The NHS have a charter where you can request referral to specific consultant - do research in your area for an endo centre. If the GP doesn’t do it then consider changing practice - since moving (only to other side of same city) I have got an amazing GP who finally listens.

Good luck and hope your daughter gets sorted soon x

[tinkerbell971]

How old is your daughter? I also stated my periods age 9 and they have always been horrendous. When I was in school I got really bad headaches also. I didn’t really have many other symptoms of endo other than the bad periods and headaches until I was 18. I then started getting random bleeding, bad cramps in my pelvis and lower back and just didn’t feel right. I went to my gp who referred me to gynae, had a scan and everything was clear. I then was put on the waiting list for a laporoscopy as the gynae thought I might have endo. Had the lap and it was confirmed mild endo with lots of adhesions sticking my bowel to my left ovary. I’m now 21 and my symptoms have eased a little but it’s still there. I feel like I have however developed pain in other areas. Currently being seen my a pain specialist because there is nothing else gynae can do at the minute as they don’t want to operate again so soon.

The thing I have learnt is that you have to fight to be seen. Fight to get a laporoscopy as it the only way for a diagnosis. However, waiting times can be long on the nhs depending on where you live. I went through spire for my laporoscopy and had my operation within about 6 weeks, so if you have the money, I would go back to spire to see gynae. Good luck xx