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

Endometriosis UK

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Endometriosis sufferers

Belfast_endo_girl profile image

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 👏

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Belfast_endo_girl profile image
Belfast_endo_girl
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Tennisbuddy profile image
Tennisbuddy

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

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Tennisbuddy

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 👏

Tennisbuddy profile image
Tennisbuddy in reply to Belfast_endo_girl

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:(

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Tennisbuddy

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.

Tennisbuddy profile image
Tennisbuddy in reply to Belfast_endo_girl

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!

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Tennisbuddy

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

Tennisbuddy profile image
Tennisbuddy in reply to Belfast_endo_girl

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 profile image
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.

Moniczka profile image
Moniczka

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.

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Moniczka

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

Lily1986 profile image
Lily1986

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

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Lily1986

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

Magicstars4 profile image
Magicstars4

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?

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Magicstars4

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?

Magicstars4 profile image
Magicstars4 in reply to Belfast_endo_girl

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?

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Magicstars4

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.

Witty91 profile image
Witty91

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.

Melodyw88 profile image
Melodyw88

Hi Belfast_endo_girl. Was diagnosed myself after laparoscopy in 2018. Was told it was all removed. Had coil fitted about 6 months after, which has helped (disguised my pain). Reading your comments I don't actually think I had a follow up with consultant either, just DC back to go.

Have had same pains as before op, but thank god not been as bad as before, but still unbearable. Am on waiting list again for gynae, but was told be a long wait due to covid! Currently sitting feeling sorry for myself with a hot water bottle.

Hope you are feeling a bit better x

Belfast_endo_girl profile image
Belfast_endo_girl in reply to Melodyw88

Ah I hope it isn’t a long wait for you! I know that pain can make you feel so alone and down but just remember you aren’t alone ❤️

Kind_Kuala profile image
Kind_Kuala

I have been told I have suspected endometriosis, and been told to try different contraceptions first. I have been in agony the last 5 days and barely sleeping. It’s just making me feel isolated and alone

Hayayaya profile image
Hayayaya in reply to Kind_Kuala

Bless you! It’s so hard being in pain almost all the time. I was in the same situation as you a year ago. In pain and didn’t know why... they recommended pills and a year later I’ve tried rigevedon and the mini pill. Unfortunately both did not work for me. Now I’m back at square 1. No further forward

The pill does help people with symptoms so it’s defo worth a try.

Have you tried speaking to your friends and family about the whole situation? They can hopefully be supportive which will help you with the loneliness you’re feeling

Just know you’re not alone. All us endometriosis sufferers go through this unfortunately

ThatTimeAgain profile image
ThatTimeAgain

Heyyy! Sorry you have endo, how long was you going back and fourth before being “officially” diagnosed? It took my hospitals (2 different ones) a record breaking 14 solid years of complete and utter soul destroying agony which interrupted my life horrifically, I couldn’t even tell you how many scans, external/internal and bloods that I had over the years but I could tell you about a couple of difficult consultants that caused me physical pain and made me feel very undignified to say the least! This disease took over my youth, my twenties and is now eating away my 30s. The knock on effects of endo are exhausting, I also suffer severe blood loss and need blood transfusions/iron infusions, my calcium levels are low so I’m on meds for that too! I’m severely anemic and constantly exhausted, my weight plummeted too. I was referred last year urgently for ivf but I lost my beloved partner to covid after we done the year of testing. I’m up at this small hour because I am in agony, Iv been bedbound the past few days and feeling very poorly. Iv found hot water bottles give me slight relief but have severely burnt my tummy red raw (there’s no skin left) I also take prescription pain meds but they don’t touch the sides (even the morphine). I’m currently awaiting my second lap this year hopefully as Iv been on the list since Sep. During my last lap, they found the endo everywhere....even the pouch of Douglas which my consultant said was not common 👎 she removed as much of it as she could but told me to expect it to return....and return it sure did with a vengeance! Iv not been able to work consistently or reliably for years and it makes me feel low, like a burden, useless and incapable of anything. I collapsed at an interview before they even opened the door to me. Iv had to pull off the motorway as I almost collapsed behind the wheel from the pain and hot flush....Iv lost friends because of it, my social life has suffered severely and I don’t know a single person with this disease. I don’t want a hysterectomy yet, I will never go on birth control because itl kill me coming back off them (I know my body best) but my dream of having children with my late partner went with him. Sorry for mumbling on......anyway i do hope you have been keeping well please feel free to ask me any questions if you like :-) Iv been plagued by endo for literally half my entire lifetime. I’m more than happy to chat or help in anyway I can x

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