Brick wall - what can I do now?

[Parksie7]

Hi

I have only posted a couple of times, but I have seen my gynae today and I could cry. I need help, idea and support - please.

A quick history -

Right sided endometroima removed with ovary and tube in 2003. From memory, a small amount of endometriosis was removed in addition to the cyst etc.

Left sided endometroima removed ovary and tube intact and no endometriosis visible in 2014 - previous scan showed no cyst/ issues with ovary.

Left side pain returned earlier this year - probably around a year after endometroima removal.

Threads not visible for copper coil, so had scan a month or so ago - all ok and no cyst visible on ovary.

Finally had my appointment today (very long story about incompetence by a GP). Apparently, it is too soon to be endometriosis as nothing was detected 18 months ago?

I have been offered contraceptive pill - I am not allowed it as my BP goes ludicrously high and puts me at risk of a stroke.

Then suggested the drugs for temp menopause - I am really not keen. I am 46 and already feel hellish with fluctuating hormones. Also considering how quickly this happened after my last op, I don't see this as a sufficient long term solution.

After registrar discussed with consultant, I was offered mirena coil. I had this before - bled constantly for 3 months, put my hubby through hell and then had it out. Dr tells me that these symptoms couldn't be the coil? It was.

Consultant says that it is too risky for me to have surgery just 18 months after the last time and because I have had three related surgeries (over 12 years!).

The Dr knows that I have pain every day - no one seems interested that I feel rubbish (exhausted, hormonal and totally ground down) all the time - she knows exactly how painful it was for me to have my examination. I need to go back in three months - I can think about having the mirena or suppressive drugs.

I know that I must look like I am being awkward, but I am truely not. I can't risk feeling more stressed/hormonal etc. it is rubbish enough to as it is and I have had most of these options in the past.

I need to be well enough to work. I need to be wheel enough to look after my kids and to actually have a relationship with my husband. I don't know what to do.

They don't really believe that my pain is endometriosis, it seems, but they will have me take hormonal drugs that I know don't agree with me just in case they may help.

I don't know what to do. I am crying with frustration. I know the pain. It is the same as before.

Help please? Can any one recommend a really good Gynae (in Scotland, happy to travel)? I will see someone privately. I just can't wait for another three months.

Thank you for reading.

Lx

[dabba76]

Hi

You are not being awkward, what you have been told (re mirena side effects & too soon to be endo) is rubbish as you know. I was told that as my last scan showed no cysts that my endo was minimal which was absolute rubbish, I had a lap in May and extensive endo was found. Before my lap I was told the only thing they could do for me was to have the mirena again (it was my 3rd and exacserbated my symptoms for the 9 months I had it in). Only then and after refusing the temp menopause injections twice they did another lap, partial excision with novasure (endometrial ablation). It's been 4 months and I am just starting to feel better.

I don't know what your symptoms are but is it possible you have adhesions and this is what is causing you issues? You should demand to see a endo specialist, there is a centre in Edinburgh. In the meantime use this 3 month period to write a daily pain/symptom diary to take with you to your next appointment. I kept a food diary too and it helped to distinguish what was food giving me issues (i.e. mango).

I'm in Scotland too had my lap in Perth the consultant was good but I will be seeking a 2nd opinion and looking at a private endo specialist in Manchester.

Kx

[Sam341]

All exactly what I have just been through. Minus the surgery to remove. I just had a lap, to look at it. I'm in Fife, Scotland.

I was told the pain must be in my head, at the same time they were offering me a load of different hormon drugs (for something they said wasn't there 😕)

I am also banging my head against a brick wall. I have asked every Dr for a referral to Edinburgh but they all say no. And in Scotland, you can't do anything about it. Luckily my GP believes my pain and has referred me to a different hospital but it is still just a general gynaecologist I will see.

In Scotland you can do nothing about bad care. The hospital I'm going to is very much in the eye of media right now so maybe they be actually doing there job.

If you can afford it, go private in England. I unfortunately cannot afford it, so I am having to jump through all the hoops, hoping one day a Dr will help. For now I am just popping pain medication and trying my hardest to work/be mum etc.

I hope you get better care from your next Dr.

It's help! So feel free to moan! You deserve to.

[BBBOA in reply to Sam341]

That sounds miserable. Before having my ovaries removed I had to go through 2 different rounds of putting me in temporary menopause. I have to say both were pretty awful. But like you were saying, I thought I should show willing. The side effects were miserable so don't be pushed into it. I am very sensitive to any medication so it could have just been me. You need to keep pushing with the GP etc. It shouldn't be an uphill battle to be pain free or have level hormones, but it is! Hope you get there!