Endometriosis sufferers: Hi, I’m new to... - Endometriosis UK

Endometriosis UK

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Endometriosis sufferers

Belfast_endo_girl
Belfast_endo_girl

Hi, I’m new to this. Got my diagnosis 2 years ago after a Laparoscopy. Endo was removed at the time but unfortunately came back 4 months later. Just wanting to connect with other women with endometriosis 👏

18 Replies
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Hello! I’m in the same situation as you, diagnosed via a lap nearly 2 years ago but symptoms returned very quickly. Waiting for a referral back to the gynaecologist as my symptoms are now worse than ever :(

How have you been feeling? Are you due any more treatment?

It’s nice to find others to talk things through with! x

As awful as it is, it’s good to be able to talk to people going through the same thing. Unfortunately my pain feels worse now than it did before the op, and I was stage 4 when I got that so I dread to think how bad it is now. Funny enough I was with my GP before lockdown and he told me I should’ve had a follow-up appointment with my consultant but I didn’t get one? I was never called back or followed up after getting diagnosis. I was waiting to see my consultant before lockdown to get back on list for another op so we shall see what occurs!

What treatment are you using? Have you had any word from your doctor? Least we’re all in this together 👏

Definitely, wish there weren’t others suffering out there but it’s comforting to talk to others in the same situation! Do you know when your op is likely to be? Fingers crossed it’s soon!

Have had such a similar experience to you as I didn’t have a follow up either and was discharged back to my GP. I went back to my GP twice and really pushed for one but didn’t get anywhere. As we were due to move house I got to the point where I didn’t push any further as I knew I would be changing GP’s after the house move. My new GP has put me on the waiting list to see the gynaecologist again so just playing a waiting game. It’s such a frustrating illness isn’t it!!

Not having a good day today as it’s ovulation time so the pain is bad & I'm very nauseous:(

No idea, pretty sure I’m at bottom of the waiting list. Last time I waited 2 years for the op so I’m not too optimistic!

Oh no, it makes you feel so frustrated when you’re just dismissed by the doctors doesn’t it? Like you’re making a big deal out of nothing and should just get on with it even when there are days it’s just a struggle to get out of bed with the pain.

Ah I’m sorry to hear that! The bad days are the absolute worst to try and battle through. Do you take anything for the nausea? A friend of mine got me some ginger tea for the nausea and honestly it does help. If you don’t like ginger then peppermint tea can help as well.

No way, 2 years is outrageous! You poor thing. Is that normal in the area you live in? I know it can vary so much from area to area.

Are you having any other treatment or medication while you’re waiting?

It’s so frustrating not to be taken seriously, it’s just such a horrible illness!

The ginger tea is a good tip, thank you! I’ve been having peppermint tea today & it does help but open to any other suggestions!

Unfortunately the waiting list where I live is a bit ridiculous! I’m not sure what else I can try, how do you manage pain relief? I do hope tomorrow is a better day for you

That’s so bad that the wait is so long, fingers crossed for you that you hear sooner. At the moment just paracetamol, ibuprofen & a hot water bottle but it’s not touching the sides. I did try mefenamic acid but it didn’t help much plus made me very nauseous. How about you? It’s so hard to find a solution that works :(

Witty91
Witty91 in reply to Tennisbuddy

When I got diagnosed with endometriosis on the 1st Sept this year, I had the marine coil fitted which may be of use, so maybe you can try that.

ritamay123
ritamay123 in reply to Witty91

Hi, is marine helpful? A friend also has endometriosis. Maybe her symptoms are so severe that she thinks the marine coil has no effect on her. Fortunately, when she tried a herbal medicine fuyan therapy for treatment, she felt that her symptoms were relieved a lot. and she haven't felt pain for years. Maybe it's that everyone's symptoms are different and their feedback on treatment will not be the same.

Witty91
Witty91 in reply to ritamay123

Obviously when I found out I had I was in the early stages, I'm not sure 100% if it helps if it's servere but she could give a shot. It does help me, the only pain I get could be ibs or bowl endo from when I was experiencing pain before I go diagnosed with it, with my bowls which is still happening.

Poor you I'm know exactly what you feel. I have a symptoms more than 5 years. Two week ago I had laparoscopy and histoscopy. They found fourth degree of deeply infiltrating endometriosis In the peritoneum and ovarian cyst. In the eyes of the doctor, I was only a hypohondryclic or a depressed person.

Endo women are always treated like that unfortunately. Sounds like you had an especially awful and painful experience. How are you now?

Hey.

I’m the same, I have stage 4 and each time I have surgery it has returned within months. Worse each time sadly.

Best wishes to you xxx

Ah I’m very sorry to hear that, genuinely. I do hope things get better for you 👏

I'm in a similar position here. Pain is coming back 8 months after having it removed. In 24 and am seriously worrying about whether this would impact on my fertility. My surgeon didnt mention whether it would or not but I dont know whether its worth me asking? Or whether they would just say wait and see. Has anyone had anything similar? Also has anyone been on the mini pill to try and suppress symptoms?

No I think it is a fair concern, but I have found not every doctor can answer that question! One GP even joked that I should just get pregnant to stop my period for 9 months. I think there is a helpline somewhere? That might be the best place to go asking as not every GP is well clued up on endometriosis, but I do know that endo can affect your fertility if left too long. Fertility is something that can be tested though I think?

Thanks for your reply! I'll have a look online 😊 I've heard some doctors telling people that pregnancy helps it but you've gotta be mentally prepared for that! Just out of curiosity, how did you know your endo had come back 4 months after lap? Was it the pain or was it diagnosed?

Don’t think anything could mentally prepare me for that 😂 no I just knew from the pain as I’d had it for so many years before. It was like a very unwelcome relative moving back in.

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