Newly diagnosed: Hi, I found out I had deep... - Endometriosis UK

Endometriosis UK
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Newly diagnosed

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Hi,

I found out I had deep infiltrating endometriosis in August through a letter from my Gastro consultant referring me to the gynaecologist as he has seen it in the MRI. Gynae but they keep cancelling my appointments so am still waiting to see the consultant for my initial appointment. In the meantime I’ve been googling Endometritis (even though I know I shouldn’t) and stressing myself out, and am feeling really down with the pain, nausea and not knowing the extent of the endometriosis or treatment options :( the longer I have to wait the worse my symptoms and worry get,

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You absolutely should be googling! This is unfortunately a condition that is not well understood - even by most gynecologists... which is why it might also be a good idea to make appointments with more than one gynecologists - specialists if you can find them. All the best and I hope you find some relief soon!

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in reply to wineandchocolate

I live in England so we have the NHS - it’s amazing but unfortunately means as I can’t afford health insurance I have to wait for the NHS appointment and whatever consultant they have rather than being able to see more than one/choose. Thankyou!

wineandchocolate
wineandchocolate
in reply to Hidden

Ah yes! I live in the UK now but actually keep travelling back to Germany for specialist appointments... Not the best solution probably. Anyways, I hope you get a good doctor who takes the time to explain everything . If you want more information, there is a very good book published by endometriosis UK - it helped me a lot to understand the disease better. All the best!!!!

I agree Google but with reservation. Sometimes the worst of the condition is described whereas you may not have that level of the disease. For instance I have stage 3 but despite what they say , I was still able to get pregnant naturally. It's hard not knowing but, it's good it was spotted and you are waiting on a consult. Remember it's not cancer, it's not life threatening so try to calm your thoughts. I'm assuming you have bowel pain which is why you were seeing gastro? Pain is definately your main concern right now especially as they keep delaying your appointment but, there are things you can do to help it. Go to your GP and ask for a laxitive like laxido powders. This will keep things soft and easier for passing stools. Next, ask your GP for better pain relief while you are waiting for your appointment. I'm not sure what you are on now but at the very least, a daily anti inflammatory like ibuprofen and some form of painkiller is a must. If you are already taking all they are willing to prescribe then ask them to write a letter to expedite your appointment. Next, you can try a tens machine. I swearby mine it is a god send! They don't work for everyone but give it a try. You can hire them for up to 7 weeks from maternity websites all you need is to make up a due date, say for 4 weeks time and they send it out with sterile unused leads and pads. The only part that is used is the machine itself so don't be put off by it being a used product. You can try it and if it works you can buy a new one for yourself. You can try yoga if you are still relatively capable of movement or breathing, relaxation or visualisation techniques to help at that point when the pain is a bit too much. Other than that you will have to wait for your appointment. But even then you can arm yourself ready for your appointment. Keep a detailed diary of your cycle, when you feel pain, where the pain is and how strong it is, what you did to relieve it and if it worked. Also list any other symptoms, however small, that you have that you know is cyclical. This diary can indicate where the Endo is and whether you are coping. If your pain is manageable they will try hormone treatment like contraceptive pills or the mirena IUD to start or they may decide surgery is what's required based on the MRI. Whatever happens keep us updated and I hope the above helped in some way. Best of luck and I hope you get relief soon. Take care xx

RicEndoUK
RicEndoUKAdministrator

Hello there,

I'm sorry to hear you are going through so much stress and pain. I don't know if you have already seen this while googling, but Endometriosis UK have some useful information which you can have a look at so you can be informed before your appointment.

You can find one about Understanding Endometriosis here:

endometriosis-uk.org/sites/...

And one about treatment options:

endometriosis-uk.org/sites/...

As Kitty270 suggests, it would also be good to keep a pain diary - you can find an example here:

endometriosis-uk.org/sites/...

Take care and keep us updated on how you get on.

RicEndoUK

Volunteer Moderator

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