getting diagnosed: Hi, I'm in the process... - Endometriosis UK

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getting diagnosed

theemmafk
theemmafk

Hi, I'm in the process of getting diagnosed but me and my doctor / and gyno are 99% sure that it's endometriosis. How did you all cope and is there a way to make this waiting time any better/easier. I only went to the gyno on monday so it's all pretty now and I'm trying to get my head around the disease. I've bought a book and looked at (trusted) websites. I'm feeling down and lost. I have no idea where to turn, and it would just be nice to hear from someone who's gone through the same thing.

Thanks x

9 Replies
oldestnewest

Hello,

Has anyone discussed scans and a possible laparoscopy with you?

It is difficult waiting around not knowing whilst suffering.

Do your research and ask any questions that you have. Keep a diary too.

You’re bound to feel down. I think being a woman is difficult. The things we have to go through constantly is exhausting isn’t it.

There may be some local support groups local to you which may be worth looking into. You could meet some lovely new people and have endo friends. Even if you don’t even up having it, you could gain a decent friend out of it.

If you are feeling really down and low, you need to tell your GP. It is common to feel like that though but obviously you want to keep on top of it. Don’t let it take over your day to day life.

Always here for a chat should you ever need one. I really don’t like hearing about people feeling down and lost, makes me feel so sad for them.

Hope you’re ok sweetie!

theemmafk
theemmafk
in reply to Flossy13

Hi and thank you so much for your answer!

I had an ultra sound and transvaginal scan before my gynae. Nothing showed up on the scan so I felt lost as I was back to square one. My gynae did a few swaps, felt my tummy etc. and told me that (very briefly) about endo. He didn’t give me any real information about what it is and what it does to you, but thankfully I knew a bit about it before I went in. He mentioned laparoscopy and told me the basics about it. Apart from that he gave me the pill to help with the pains - I wish he would’ve given me more information about everything, but at the same time I feel like I can’t complain too much. He was really nice and made sure I was okay under the entire visit.

I’ve actually started a diary over my symptoms, and I’m thinking about incorporating food into it as well. I really want my doctor and gynae to see the extend of it.

I’ve bought a book called “the endometriosis health and diet program. Get your life back” - I’m only a few pages in but it’s been so nice having it for research and understanding. I’m quite lucky that there’s so many lovely forums and people out there wanting to talk about endo and help people with it.

And thank you very much! I know I’m very new to this, but if you want, you can always message me as well. I’m always here to listen!

Hey, I can’t really help with how to make waiting better as it’s honestly the worse. I have my first lap in a couple of weeks and it’s all I can think about as I’m petrified.

It’s taken me a year to get this lap and hopefully have answers. Gynaes normally try and help the pain with suggesting hormone treatment or strong painkillers. Then surgery is a last resort.

I go through times of feeling so down but I try and find ways to cope like going to gym, drawing or talking to my boyfriend.

My gynae gave me the contraception pill and told me to take some painkillers as well. It’s only been five days since I started on the pill but so far there’s been no change. I hope it’s just cause it’s been such a short time on them!

I’m very lucky to have an amazing partner and friends. They’re all there for me and I feel so blessed. Apart from that I paint, do my floristry courses, take walks etc. I’m very big on self care, especially when I’m not feeling well! Doing everything in my power to feel better.

I’m glad to hear that you’re finally getting your laparoscopic. I can only imagine how petrified you must be (even the thought of it makes me scared), but just remember that it’s a good thing. Hopefully it’ll give you and the doctors/gynaes some insight and help you understand the extend of it. I know that’s terrifying, but at least you’re taking a step in the right direction.

If you ever want to talk (even though I’m new to this) I’m here! I’m always here to listen.

Easy to say not to worry because we do don't we? Push for a Lap and once you know what you are dealing with you will find yourself feeling a little better mentally. If Endo is the diagnosis, question what is the best course of treatment for you, contact Endometriosis UK for support and not forgetting us here on this fab site. Good Luck

theemmafk
theemmafk
in reply to Linley

Thank you for the answer!

I know my gynae said to come back in 6 months (or if I really need it) to give a report on pains, symptoms etc. and for him to check up on it, but I feel like that’s a long time to wait. The more I read in here about symptoms I’m getting more and more sure of that’s it’s definitely endo.

I’m gonna talk to my doctor next week and hopefully I can get another gynae oppointment sorted soon!

Already had a look at Endometriosis UK and will definitely be using them as well as this site! I’m really happy I found this place, it’s been nice hearing about everyone else’s experiences and symptoms! Knowing it’s not just me whinging!

Hi, I’m really new to this too.

In the process of getting diagnosed and GP and gynaecologist are pretty sure it’s Endo.

Waiting to see the gynae is tough enough, had that appointment a few days ago.

I’ve been told I’ll have 2 MRIs and a laparoscopy but no clue as to time frame.. so more waiting. At least it’s a step forward.

Did the specialist say you were having a laparoscopy or just mentioned the possibility? I hope you get some answers and positive treatment xx

theemmafk
theemmafk
in reply to vmagpie

Hi, and thanks for commenting!

I’m glad to hear that you’re getting MRIs and a lap done! Hopefully it won’t be a long wait.

The gynae just said that lap was a possibility. I’m really gonna push for one though!

vmagpie
vmagpie
in reply to theemmafk

Yes I would if I were you,

I went all geared up to have to fight my corner and push for it.. but I was lucky the gynae I saw really listened and could see I was struggling. I had gone to a&e in a pretty sorry state about a month before, had bloods and abdominal and transvaginal ultrasounds done. They wanted to send me home from a&e with pain relief but I explained that if I was managing with pain relief I wouldn’t have gone in.. so they sent me to gynae day unit and they sent me for the ultrasounds.

I’m not sure but after that and speaking to the gynae junior dr my appointment I’ve just had got pushed forward.. otherwise I’d still be waiting until September for that.

I’m not advising you to go to a&e if you’re managing the pain but there is no shame in going if you’re not.

I hope you get some help.

Here if you need to chat to someone in a similar place to you in the process.

I’m returning to work today after 6 weeks of not working due to my symptoms

Take care xx

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