Yet Again Another Battle!

[squidgy]

Hello lovely ladies.

I will try to keep this as brief as possible.

I am 32, with severe Endometriosis and have been ttc for over 3 years. In June 2014 the gynaecologist I was under re infertility informed me after my Lap that my only option for a baby was IVF and she was going to refer me straight away, but allow 3-4 months to hear from them. November I chased up and was told would be called back...no call back. December I chased up and told the same...no call back. January chased it up and today seen the same gynaecologist to fill out a referal form as system changed. From the lack of communication and what was said today it turns out no referal was ever made back in June 2014! So still at the starting block! So upset and angry at the moment as now it will be months to wait for this referal to go through and to see if get an appointment or on a long waiting list! I also suffer from depression and have been off my antidepressants for a year now as I didn't want to be on anything so I have a clean body for the IVF to have the best chance. So I have been really struggling mentally and now got even longer to wait and try push through. Along With the endometriosis pains and symptoms too!

Ever since I was 13 I have had to battle with GP's, doctors, specialists to be listened to about my body that I have Endometriosis and only in June 2014 did someone dare listen and do the Lap which confirmed what I thought all along. During infertility tests I have had to fight for a right diagnosis as one person said my tubes were blocked when they did the HSG, an other said they were fine..turns out the first person was right that they are blocked.

Sorry Rant over!

Also I am due to be refered to the Care Fertility, Nottingham. But I see on the form there was also the choice of NURTURE, Nottingham. I know people can't comment on here due to the rules, but I was wondering if anyone has had any experience with either of these clinics or both and would recommend? If so please feel free to private message me. Thank you in advance.

Thank you for taking the time in reading my post. I have really appreciated the support and advice with my other posts.

Best wishes to you all x x x

[scribble1603]

I can empathise with your situation as many of us will be able to. Sadly I don't think your situation is uncommon. We have got as far as starting IVF but when I went to the clinic yesterday no one could find my notes and I was given advice which completely contradicted wat I had been told the day before. We have been having infertility and endo tests for about 2 years and it is a common experience.

I now have very low expectations of the health service both private and NHS and my starting point is always that I will have to be the one chasing appointments, checking referrals have been made etc. certainly in our local area the service is overwhelmed by the pressure it is now under. If it is an emergency the hospital is amazing and I can't fault them.

I now think in advance of how I want to manage my treatment and make sure i'm proactive from the start. You could try and involve your partner more in the chasing etc and maybe get your GP on board.

Good luck xx

[squidgy in reply to scribble1603]

Hi scribble1603

Thank you for your reply, it is very much appreciated.

Sorry to hear that you too are being mucked about at the moment too. It is so frustrating isn't it. They see not having your notes as not being a major thing but to us it is, especially as we have had to fight to be heard re our bodies in the first place. Then to get contradicting advice is just more confusion and annoyance/frustration added to our battle. Can really sympathise with you. I hope they get their backsides in gear for you soon.

I, like you, try to become more proactive before I have seen a dr. Especially even more so in the past few years I am not being the quiet meek person who just nods and says nothing. Although that person does sometimes resurface if I am feeling extremely low and cant see point to argue and push as dr not listening.

My husband is being great support and I know it effects him too. I am very lucky to have him. He was going to do the next chase up if my last one a few days ago didn't produce a response. My GP unfortunately is not the greatest and I am fighting him at the moment to be heard about how the endo is really effecting me.

Sorry I am moaning on again!

Once again thank you for sharing your story and kind words. Good luck with your treatment and I hope they improve for you. x x

[NMcG]

Hi there, that all sounds totally rubbish, especially how long it has taken to get diagnosed. How awful for you, especially as you have a lot of pain. Time is certainly of the essence when you get to the stage you are at.

I thought I would reply as I was diagnosed when I lived in Nottingham and my consultant Mr James Hopkisson at the QMC was great. I find there are some consultants who are still about 15 years behind, and some who get it. He got it, and knew what I needed, and admitted he couldn't do it himself as I was a tricky case, but referred me to an endometriosis specialist centre in Oxford John Radcliffe hospital. I think that has been closed due to lack of funding since. I now live down south and go to another specialist centre in Guildford.

I don't know either of the centres you mentioned in Notts, I've not been there for 5 years now. But I would just recommend doing your research on the best consultants in your area for Endo/Fertility, see who are the lead consultants in these centres to help make your choice and what you push for. It really makes a difference on the advice you are given. And know that you can be referred to other areas as I was. Birmingham might be an option for you also, I know there is a centre there also.

Anyway, good luck with it all, and just keep hassling them and pushing them.

[squidgy in reply to NMcG]

Hi NMcG,

Thank you for taking the time out to reply to my post. Really grateful.

I am glad you found a good specialist to help you. I am currently researching the 2 IVF clinics in Nottingham and it seems the one I am being referred to (fingers crossed the gynae doesn't muck up this referal) is a good clinic. Wont really know until experience it I suppose.

I am tempted to ask my GP - not that he is listening to me at all at the moment about how bad my endo is effecting me - to refer me to an endo specialist in Poole to try see if anything can be done to help i.e. if further surgery required, tablets? But I have been holding back on this as I was and am waiting to hear about starting IVF and as my body clock is ticking and my husband is nearing 40 I feel concentrating on the IVF route takes first place. So I am trying to battle on coping with the endo.

Thank you for your advice and sharing your story. I will definately keep pushing and hassling.

Best wishes x

[Estelle81]

Hi,

I'm in a very similar position - I had a lap in November and have been advised to start IVF ASAP because of the endo and a blocked tube. I'm t Leicester Royal and the waiting time isn't too long so we've had our first appointment already.

I have had some real problems with the NHS prior to this - my first consultant lost my test results for four months and generally gave me bad advice. My lap was then cancelled on the day and I had to be rescheduled. I've had to constantly chase for appointments and results although fortunately my consultant now is so much better. My advice would be to put in a formal complaint in writing about your treatment so far and the fact that your referral wasn't done. This is what I had to do and it did mean that I was seen a bit earlier - you shouldn't be put to the bottom of the waiting list now after all this time.

Give it a go - I know how draining the constant battle can be.

Good luck xx

[squidgy in reply to Estelle81]

Hi estelle81

Thank you for sharing your story and replying to my post.

That is great you have had your first appointment already! Although sorry to hear that you are having to go down the IVF route too.

I have today put a complaint in about the lack of communication received and the lack of IVF referal being done when told it would. The lady I spoke to said it is definately neglect at the least and will be looked into. So at least I am being listened to about something!

Sorry to hear you have had constant fights and problems with appointments being cancelled, lost results etc. It is upsetting that this is such a common factor. We have enough to try to handle with the endo pains etc let alone dealing with more! Glad to hear you are currently with a good consultant.

Once again thank you and Good luck with your IVF treatment. May it make your wishes come true. x