Endometriosis how do you deal?

[Notebo]

Hi ladies,

First of all how amazing that we have a group to support each other. I have recently been diagnosed with endometriosis and I have a cyst that is fluid filled. My periods this month was a nightmare and any sign of stress can make me feel worse. How have you ladies dealt with the pain and what is the best long term solution. I really dont want to do surgery and I'm scared to be infertile please help me

[Endowarrior9]

Hi,

There are many different ways of dealing with endo pain. Unfortunately many gynaecologists do surgery as that is the only way to remove the adhesions (as far as I know). But there are things they can offer you such as HRT injections/other medications but this will probably depend on your situation as if you take these you won’t be able to get pregnant whilst on these types of medication.

There are many women that do become pregnant with Endometriosis. But if you aren’t quite ready for a family just yet then the main thing is managing your pain.

If your pain is heightened when you have your period and it is heavier it may be helpful to ask your GP or gynaecologist for Tranexamic acid tablets, they help to lighten the bleeding which in turn should reduce your pain. A tens machine and a hot water bottle are always handy too.

And if you find that stress makes your pain worse, remember to try and take time out of your day to relax the best way you can.

I hope you find some of these things helpful

[Notebo in reply to Endowarrior9]

Thank you so much for your feedback it was helpful.

[HikerGirl]

Hey Notebo, it’s a shock to get your head around the diagnosis but you’re already helping yourself by reaching out to others in the community ❤️ Go you!

I have found a couple of endo podcasts really helpful emotionally as well as learning so much from them! This Endo Life and The Cycle: Endometriosis Podcast. Give those a listen if you have time.

Also, I would say surgery isn’t as bad as you would expect, it was a massive relief for me. I’m a year out of my first surgery and I’m still feeling the positive effects of it. But you’re right to be cautious and to not jump straight into it. In a way I wish I’d been the same as then I would have stopped to find the best possible surgeon to work with. I would suggest joining Nancy Nook on Facebook for some guidance on which consultants are more educated cos trust me, in no time you’re going to know a lot more about endo than 90% of consultants do!

Finally, infertility. It’s definitely scary. Doctors are very quick to tell endo patients that the diagnosis means they’ll struggle to have kids but that goes hand in hand with the general lack of understanding of the condition within the medical community. It’s not always inevitable that you will be unable to conceive, in fact many women with endo still go on to have multiple kids! The best thing is to find an endo-educated consultant who will be able to walk you through this ❤️

Best of luck xx

[Notebo in reply to HikerGirl]

Thank you so much this was definitely helpful. ♥️