GP still not really listening to me, what can I do?!

[CharlieSays]

Hi ladies, I was diagnosed with stage 4 Endo earlier this year. I'm on my 2nd course of Prostap injections with HRT. I'm still under just a general Gynae, although there is a Provisional Clinic at the same hospital. When I went for my last injection, I saw a different consultant, who worryingly didnt know why I was there! So I told him exactly what injection I had come for. Because of this and also because I dont want to saty on Prostap forever and havent really been offered another option, I went to my GP today and asked to be referred to the Endo Clinic. I gave her the name of the consultant, but she said I can't ask for a specific consultant. After going through all my symptoms and concerns, she said she'd write to Gynae to say I'd requested a 2nd opinion. But this isnt what I was asking for and now I'm worried I'll still end up at the Gynae Clinic and they'll just think I'm trying to cause trouble! I'm really fed up now and don't know what to do for the best. Any advice please?

[Impatient]

I would write to your consultant- pre-empt the request for a 2nd opinion, because that isn't what you want, and explain that you think your GP got his/her wires crossed, and that in fact you are seeking an alternative to Prostap.

That is something you would like to discuss with the gynae team.

Whether the next step is excision surgery, or hysterectomy,or mirena coil or depo-provera or some other longer term menstrual stoppers other than GnRH drugs.

Waiting to see the gynae team is pot luck about who you get to see.

Remember they are there for surgery when that is required.

Your GP is the one to see about menstrual control drugs, but they may be reluctant to prescribe Depo-provera after Prostap because it too comes with bone density loss, but if you are not ready for surgery and provided your spine and trunk bones are being monitored with Dexa Scans. this is an option for some ladies.

Your GP may feel happier about you switching to a different menstrual control drug if the gynae team agree to this and write to the GP to say so. Then the GP is not stepping on anyone else's toes.

If you are on Prostap while awaiting the go ahead for a surgery and you feel that time has now come, then be sure to say so, and stick to your guns. You are the patient but you are also the one who leads the decision making about what to try next, depending on what your specific future priorities are.

Keep the letter short and to the point as possible. Don't forget to include your patient number so they can read the letter in consultation with your medical records.

By writing to them, you clear up any confusion between you and them, and you and the GP, and they have on record what you are looking to try next. Good Luck.

[jas_mum]

I think the advice that Impatient has given is good advice get in touch with your consultant and let them know exactly what you are wanting and that there has been misunderstanding. hope you get something organised x

[CharlieSays]

Thanks Jas_mum, Impatient does seem to know what she's talking about!

[Hidden]

I saw an Endo specialist on Monday as a private patient. This specialist works at the same hospital as the male consultant that I saw earlier this year.

The reason I saw her was that I wasn't happy with the options I was given by the male specialist. I explained to her my situation and that I didn't want the GNRH drugs.

I am pleased to say that she said

my only real option is a hysterectomy (I have adenomyosis +a fibroid), right ovary removal, adhesions cut and all other Endo cut out . This surgery will be done on the NHS.

The difference between these two specialist are like night and day. And I'm so pleased I paid the money to see this doctor.

As a fellow stage 4 Endo sufferer, I can not recommend strongly enough how important it is that you are seen by an Endo specialist and not just a general gynae.

Regards,

Barbara x

[CharlieSays in reply to Hidden]

Thanks Barbara, I will keep pushing to be referred to the Endo Clinic. Hope all goes well for you x

[moomoo8]

Hi CharlieSays

Definitely push for it if, I go to one about 25-30 miles from where I live. If there isn't a specialist centre in your area the NHS Have to fund you to go to one too so keep making a fuss!

Take Care xx

[CharlieSays in reply to moomoo8]

Thanks catlou, you take care yourself!

[CharlieSays]

Just an update for all you ladies who gave advice, hope you are all having a good day! I wrote to the Gynae team and after a bit more confusion with my GP, they have agreed to refer me to the Endo Clinic, so I'm awaiting my first appointment. Thanks again

[moomoo8]

That's good to hear! xx