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Endometriosis UK
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Got my first gynae appointment soon

I was just wondering if anyone could tell me what happens as it's my first ever visit as I'm kinda nervous

My doctor thinks I may have endometriosis as I have some signs but I refuse to take the pill and some types of painkillers due to side effects I have with them.

Will they suggest a lap straight away or do some tests

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Why were you referred, if we know a bit more we can help more xxx

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I've added a bit more xx

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They probably won't do a laparoscopy straight away as that's very much a last resort. What they'll probably do first is take a series of bloods from you to check for an increase in testosterone to rule out polycystic ovarian syndrome and thyroid conditions. Next they'll probably do ultrasounds to have a look inside to see if there's anything obvious causing your pelvic pain and rule out anything sinister. They probably will push for you to try a form of contraception whether that be the pill, implant, depo injections or coil, which if your adamant you don't want, make that clear but don't let them make out as if you're refusing treatment because they can't force you to take something you don't want to take whether that be because of allergies, religious grounds or just because you don't want to! They'll also try and give you drugs like tranexamic and mefanamic acid to help with bleeding and stuff (I don't really know what they do but I do know they make me sick!) and they might suggest you make some dietary and lifestyle changes as well!

You're probably in for a battle to be honest and I'm not saying that to scare you, but last week it was announced doctors were being given new guidelines on diagnosis endometriosis and cutting down this 8 year average that it takes to diagnose!

Read this: google.co.uk/amp/s/amp.theg...

Prepare yourself for a barrage of tests but don't be disheartened if the blood show nothing and your ultrasounds come back clean, they will do everything before operating in most cases! It's sadly not a quick in/out, with endometriosis! But keep pushing for treatment because you know your body and if something doesn't feel right you need to fight for yourself! But you never know you might get the most understanding consultant in the world who might suggest a laparoscopy straight away, you never know apparently it does happen sometimes, but don't feel like they're pushing you away if they suggest it might be PCOS or something else, better they rule something out for sure, than leave you with yet another undiagnosed condition!

Hope this makes some sense, and I hope you get some answers from your consultant quickly! x

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Thank you, I've had blood tests for PCOS and a ultrasound and they came back normal although I didn't get a transvaginal ultrasound.

The doctor kept forcing the pill on me which I constantly refuse and mefenamic acid and tramadol didn't work for me because of the side effects

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I concur with mcmbx.

Was the scan done by an endo expert? I had 3 abdominal and transvaginal scans this year and they all missed severe endo. I just had 1 transvaginal scan with an expert and in 5 seconds she said endo was all over my bladder, massive nodule that was deep infiltrating, she also saw adeno and a cyst! So quite frankly, don't believe a word of non endo sonographers and non endo specialists!!!!

Regarding non drug treatments, here are some ideas:

I'm currently taking Magnesium, B12, folic acid, Vit D, probiotics and my pain has definitely halved (I was able to go to work on my first day of periods 😱).

You can also take turmeric pills but personally i prefer sprinkling some on my food as well as black pepper as these two are non inflammatory 💪

I'm going to cut gluten out during periods too now as it makes me gassy and gas gives me atrocious rectal shooting pains (sorry tmi).(I've already cut dairy out 👍, no coffee and less alcohol, no cheese, no beef/pork/ham/prosciutto/salami/etc.)

I'm going to try acupuncture as a lot of women say it helps (am hesitant, I am a scientist and not a crap believer but am desperate!).

I've asked to be referred to a pain clinic too.

Good luck

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They'll most definately do a transvaginal ultrasound on you then, my first ultrasound they didn't do it transvaginal and I ended up having to go back! They'll also probably update your bloods, I had 3 sets done, one the day I started my period, one the day after my period and one 2 weeks after my period to track hormonal changes!

Do make it crystal clear you're allergic my consultant the 2nd time I went was quite frankly useless and kept going "so treatment wise we'll try tranexamic and mefanamic acid" despite me telling her and the nurse in the room telling her I was allergic! A big part of your gynae appointments will be advocating for yourself!

I'd also buy a cheap notebook and start tracking your periods, pain and when you need to take pain relief etc, it sounds stupid but gynaecologists in my experience take it a lot more seriously if they can see it in front of them with a bit of a history, my gynaecologist had my cycles dating back to summer 2015 and it was only when I showed her that book and she said "that's a lot of bleeding!" She agreed to operate!

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Yeah I've started writing things down but I don't have heavy bleeding like I normally do so could I still have endo? As it says online it's just heavy bleeding. But I do have other signs.

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I'm not a doctor so I don't know, could be? Every woman is different after all!

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When I had my first gynaecologist, I got weighted and checked BMI first, went in had a chat about all my symptoms what makes my symptoms worse ect, and I got told It didn't sound like endo but will do an laparoscopy just to look inside, 3months later I had the laparoscopy and turned out I did have endometriosis...so they might offer one on your first appointment, depends on the gynaecologist and your symptoms xx

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Okay thank you. I have some symptoms of endo but I don't have the heavy bleeding like I used to (sorry tmi) xx

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Still might have it if you have other symptoms, may just be a lower case of endo xx

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Yeah as I've been tested for PCOS and other things and they came back normal xx

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Yeah mine did too when I first started going though all this, Iv been told Iv had everything, muscle damage, bladder and kidney infections...turns out it was all endo lol...even if they say you haven't got endo, just means another thing ticked off the list of what it might be xx

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I didn't have heavy bleeding when I was 20 either, it increased with age for me. Even now, I only have 2 days of moderate bleeding then very very light for anything between 2 and 10 days. Your symptoms sound like mine:

dull aching before period + back

atrocious stomach, belly, sides pain, rectal shooting pain, bladder frequency when on period

dull aching before period pain but after periods as if I was going to have a second one + leg and back pain + bladder pain frequency and inability to empty.

From a TV scan with an endo expert, I know I have deep infiltrating bladder endo, adenomyosis, and a cyst in my left ovary (3scans by normal sonographer came back negative); I'm waiting for my appt with my BSGE specialist to plan for a lap very soon! I'm expecting to have much more than bladder endo discovered during lap despite not seeing it in the ultrasound scan as bladder endo presents with other types of endo locations in 90% of cases!

Always insist to deal with a BSGE specialist, only they are authorized to do proper excision by laparoscopy (in the UK)

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Hi, I only bleed for 3day on a 32 day cycle, it's not heavy but very painful and get a lot of clots.

I have stage 4 Endometriosis, Adenomiosis and PCOS, my cycle has been regular for the past 2yrs, I found this happen after I had been on clomid but before this I would bleed for months at a time, so I don't think everyone has heavy bleeding, sorry for to much information but hope it helps clear that side of things up for you x

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