No fight left in me : So I have my... - Endometriosis UK

Endometriosis UK

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No fight left in me

Sam341 profile image
3 Replies

So I have my appointment on Thursday with my gynaecologist, I was meant to see him months ago but this is the first of me getting an appointment. So far I have been told my pain and tiredness is not endo because I don't have enough endo to cause me pain.

I can't see a specialist because the endo is not bad enough. I'm in Scotland so I have no choice and private is not an option because I can only work part time due to how ill I get when I over do it.

I have tried everything, well everything I know of. But I am still in pain. The zoladex injection worked but because of my age I was only allowed 3 month at a time. I don't particularly know if I want to do another 3 months because it took 6 weeks to work and I had 12 weeks of sever hot flushes when it did start working.

I have no idea what I am going to say on Thursday. First of all I have had the coil removed so I can see how I am with no hormones in me and I think he will be angry about that. I have had the coil for nearly 4 years. I don't see where we can go next. Iv done everything they have offered.

I'm emotionally drained just thinking about the appointment, to the point I don't want to go.

Can anyone help?

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Sam341
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3 Replies
Stoocie profile image
Stoocie

I know that you feel physically drained, but I'm here to tell you that you are stronger than you think! It is in our most difficult times that we find our strength.

I've recently seen my gyno and she basically told me that the pelvic pain I'm experiencing, is not caused by endometriosis. I went through early menopause in 2007 and she told me that post menopausal women normally don't have issues with endo. I'm so thankful that my test results are normal, but I still don't have any answers. It's so frustrating to be in pain and see so many Dr's and not get any answers. I honestly don't remember what it's like to be "normal". I pray that you get some relief from your pain and are able to enjoy life again.

My GP recently prescribed a low dose Xanax for my anxiety and although I didn't want more pills to take, it does help a little.

Hope264 profile image
Hope264

Hi, I imagine you do have endo and it should not be a fight to have that recognised but sadly it is. The statement 'not enough endo to be causing it' is just so wrong on so many levels. It does not matter how much can be visualised as understand it, especially through laproscopies by general gynae.

I am in area and cannot access free services either. I stay continiously on pill 'qlaira' I believe a form of hormones of dienogest that other name is 'visanne'? I think it has stopped ovulation. I still live with other symptoms of endo like pain, fatigue and nausea & the pill costs money each month, but it is more manageable for me. I tried many pills before that one, it is a very individual thing hormone treatment, but that is what has worked to make my life better when surgical treatments are out for now.

If you can get specialist help through public system via GP advocating for you or another Gynae it is always worth trying someone else who may be better informed and less arrogant. My GP is my ally and the only way I have managed to navigate things, I have met and let go other health professionals along the way. Best of luck, it sounds tough.

Starry profile image
Starry in reply to Hope264

There is a charter of patient rights for Scotland. You have a right to ask for a second opinion and there is a route to making a complaint of getting 3rd party support perhaps through PASS or Endo UK? It's well k own that pain levels and degree of endo are not correlated. Some with mild endo get bad symptoms and vice versa. Hang in there x link to pdf of charter. google.co.uk/url?sa=t&sourc...

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