Advise

[MissAmyRes]

Hello, I was diagnosed with endometriosis last week and to be completely honest I feel completely confused and very daunted by this. I don't really know how to feel or what to do, is it normal to feel like this? Did anyone else struggle to come to terms with the idea to start with? Also I have been given the combined pill for 3 strait months to try then if that doesn't work my consultant wants to operate. Did the pill work for any of you ladies? If do when did you start to feel a relief in the symptoms? Thank you in advance x

[Lipsquid]

Hey hun, it's completely normal to be feeling what you're feeling, don't ever feel guilty for going through the motions.

The pill didn't work very well for me however it has for other women and the hormone injection has done wonders in my sisters treatment of her endo which has transformed her life.

If in doubt write down all of the questions that you want to ask your Dr/surgeon as I was always so full of questions when I got there and forgot most of them when it came to speaking with them!

Every woman is different and their own experience and feelings are valid just as yours are. You're not alone x

[MissAmyRes in reply to Lipsquid]

Thank you! It's really nice to know it's not just me. Yes I have many questions I need to ask him so I will make a list. I hope you don't mine me asking, how long have you had endo? They suspect I have had it since I started my periods or even before which was 9 years ago, I am so worried that it has spread around my body because 8 have so much pain in lots of places even places like my legs! I was so shocked when the Dr said that could be because of this. I Houghton it would only effect my womb, ovaries or fallopian tubes. Does anyone else have pain in their legs? X

[Harry89 in reply to MissAmyRes]

I haven't been diagnosed yet have my Lap coming up but yeah I get pains in my legs all the time.

[MissAmyRes in reply to Harry89]

I am waiting to have a lap to see the full extent of the endo too, have you found anything that helps to relieve your leg pain? Mine is often worse at night do you find this too? x

[Harry89 in reply to MissAmyRes]

I've been doing yoga which has helped it doesn't stop the pain permanently but it gives me a few hours release. Yeah mine is bad at night too I really struggled to walk the other day to. I'm so fed up of the waiting game though

[MissAmyRes in reply to Harry89]

Oh il have to try that I've heard other people say yoga helps as well. I know how you feel waiting is awful especially when your not sure and are desperate for answers. Hopefully you will have your answers soon x

[Lipsquid in reply to MissAmyRes]

I've had pain at the tops of my legs and your Dr is completely wrong. Endo can grow everywhere apart from the spleen. Mine is all up my stomach wall, all over my bowel, inside my bladder, covering both kidneys and starting on my liver. It can go up to your lungs and even behind your eyes.

However do not take all of that in and panic my love, mostly it does stay around the reproductive organs and bowel. I was undiagnosed for a long time but since I started my periods when i was 11.

I have a bit of an aggressive type of endo so I've had to have some extreme treatment but my sister has had the hormone injection and its worked beautifully for her!

Whatever questions you have are NEVER silly.

You are not alone, if you need anything am here.

[MissAmyRes in reply to Lipsquid]

Thank you very much, there is so much information to take in its nice to talk to women who have felt the same x

[17yearoldgirl]

hey, I was diagnosed back in 2012, im 16, and i still haven't come to terms with it, im having another operation next month, ive been on the combined pill for over a year without brakes, i feel that it has helped but now 18 months later its not doing much, i feel that my body might have become used to it, im trying without it for a few weeks to see how much difference it is.

i hope you get all the support you need and stay strong x

[MissAmyRes in reply to 17yearoldgirl]

Does having operations help to relieve your symptoms at all? Thank you! I hope you find something that works for you soon x

[17yearoldgirl in reply to MissAmyRes]

sorry ive taken so long to reply, yes it did! good luck

[MrsHCP]

Can I just make the comment that I had my tubes tied 20 years ago and went on to develop endo which wasn't found till it was stage 4! The clips they used to sterilise me were found within the severe adhesions that I had developed. Please don't tell ladies that tying your tubes can prevent endo... It won't.

[Petunias in reply to MrsHCP]

I agree this is oitdated thinking that endo is caused by backflowing blood. It adds to the misinformation out there.

[MissAmyRes]

Thank you x

[Simonetta]

Dear MissAmyRes,

It can be daunting when you first receive such a diagnosis so I thought I would reach out to you with some information/support options that might be of use:

endometriosis-uk.org/unders...

endometriosis-uk.org/endome...

endometriosis-uk.org/sites/...

For any future appointments, the following could be helpful:

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

Endometriosis UK run support groups where you can share your experiences and information, get support and perhaps forge friendships. These are countrywide and run by volunteers who have experience of endometriosis themselves, usually on a monthly basis.

endometriosis-uk.org/find-l...

We also run online support groups for those who prefer not to engage in a face-to-face meeting or where there may not currently be a support group in your area. You just need to send an email to [e-mail]; for further details see the link below :

endometriosis-uk.org/online...

Furthermore, there is a freephone endometriosis helpline number, again manned by volunteers where you can speak in confidence (Tel.: [phone])

The thing to remember is that you are not alone and there is help and support available.

I hope this helps.

Take care,

Simonetta

[MissAmyRes in reply to Simonetta]

Thank you very much, all this information is really helpful. I really appreciate you taking the time to write to me.

Take care,

Amy.

[Simonetta in reply to MissAmyRes]

Hello Amy,

You are more than welcome. I'm happy to help.

Take care,

Simonetta