Endometriosis UK
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Recent laparoscopy - need answers

Hi all,

I had a laparoscopy on Monday but a bit of backstory:

I started my periods at age 11 and they have always been excruciating to the point of missing school/work. I suffer so many symptoms of endo but my main concern is the unbearable pain with sex which had made me pretty much swear it off altogether until I can get it fixed (not fun for someone who's only 23!).

I saw countless doctors with most of them (men) telling me all women had painful periods and I just had to get over it. One doctor even laughed at me and told me I was being a drama queen. But I wouldn't take no for an answer and was eventually referred by a great GP to a gynaecologist that specialises in endometriosis. After a consult she basically said she thinks I needed to have a lap because she suspected endo.

I had my lap on Monday (two days ago) and didn't hear anything after I came to which I assume means she was very busy but I have a follow up next Monday. After a bit of research I've realised a week is actually a pretty quick time for a follow up, but I'm severely doubting that they found anything at all. It sounds awful but I'm sure most of you know the feeling that you actually want it to be endo, so at least there's an answer.

I was hoping anyone who's been through something similar could give me some advice. I'm not actually sure how many incisions I have as they are still covered but I feel like I've bounced back amazingly - almost too well making me think they found nothing and did nothing.

I'm super worried and upset they've found nothing and I will be back to square one 😕 Any advice is appreciated, thank you x

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Hi, you are probably feeling better because pain killers are still working.

I feel like my story is similar, excruciating periods since i was 12, nobody taking me seriously and then being so happy when diagnosed with endo. Well, it was only the beginning. It's a nasty disease that you will have to deal with until you reach menopause, it can cause infertility, there is not a treatment that works for everyone. Inability to find a treatment that works drove into a depression and put my life on hold. I am now pain free and my endo is under control but it took me 7 years to get here.

I know how you feel, you just want to know what is wrong with you as it's better than being in the dark and worrying, but i do hope you don't have endo, and if you do i hope you can find something that works for you quickly. I spent almost all my 20s fighting it and I would not wish it on anyone.

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Hi Klaudia,

I am so sorry that you had to go through that!

I know, it sounds awful that I hope that's what it is but I would rather it be that than go back to square one. My gynaecologist has investigated nearly everything else and I would be absolutely devastated if they told me there was nothing wrong with me. I even ended what could have been a great relationship due to the fact I couldn't stand to have sex.

I just want some answers :( I hate waiting but it's only until Monday

Thanks x

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I completely understand, I hope you have a great gynae, you will need all the advice and support you can get. I wish you all the best and hope you can get this sorted and move on with your life.

xxx

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I've just had my lap today and been diagnosed with endo. Scary stuff definitely wouldn't wish it on anybody I'm only 19! But I also wanted there to be just something or anything then so I could prove to all the doctors that laughed at me since I started my periods telling me it was normal to have period pain (crippling intense pain - not normal!) and normal to be losing so much blood to the point I would shake and feel faint and sick! I've had periods since I was 12 and finally I was referred to a fab GP who actually dealt with it and followed it up instead of putting me on a form of contraception and basically telling me it was all in my head!! Just wondering with the follow up do they have to do another lap to see if it has come back?? I was quite out of it afterwards and annoyed at myself that I didn't ask everything I wanted to! Just wondered if anyone has any advice as to what happens after the lap etc especially now they have found endo and burnt some off it off (at least that is what it sounded like he said! Many thankyou's!

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Hi, i had a lap first but they were unable to do anything due to severity of my endo, there was too much of it. I then had prostap for 8 months and then an mri scan to determine whether it worked or not. So i guess you don't have to have another lap, mri would suffice.

After your lap, if the endo was removed, you should be on some form of contraception until your menopause. If you don't the endo WILL come back. It is very rare for it not to come back.

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Yeah they have put me on the pill - Celeste however I've been on this before and it Never agreed with me. Debating going on the mire a coil but I am only 19 and feel like this I am too young for this! But I do need to be on something, does anyone have any experience with this and how is effects you after endo?

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I had a mirena coil cos nothing else worked for me. The only side effect may be pain, there are no thers, it doesn't affect your body in a negative way like other contraceptives can.

You are never to young for it so as long as it agrees with you it will be a good long term option to manage endo. I had mild pain for about a year so i had to take pain killers every now and then. But the pain was nothing compared to my endo pain and so I stuck with it. I just had a baby recently so i am going to have the mirena put in again.

I would say try it and give a good 6 months, see how it goes.

My mum has endo too and she has had the mirena for the last 20 years, you don't even think about it day to day. It worked great for her and myself as well so i would recommend trying it. If it doesn't work you can have it removed, it takes a second.

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Hey! I had my lap on 30th June and was told while I'm recovery they found nothing and all appears normal.

I was a wreck because after 7 years of hell I just want answers.

No follow up app even made for gynae.

I have to go back to my GP on Friday and start from square one all over again but I'm going to push to see an endometriosis specialist.

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Hi Stacey,

Your poor thing :( thats exactly what I'm hoping they don't say!

Yes I had to push for a few years to even get a doctor who would consider this as an option. Luckily for me she was very supportive and suggested the best endo specialist in my area for me to see.

I hope you can get a second opinion x

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Hi! It's horrible to wake up from a surgery you pushed so hard to get only to be told it all "appears normal"

Thankyou. I'm glad you seem to be getting somewhere!

I'm hoping I can be referred to an endometriosis specialist fairly soon!

Xx

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Hi, I am a 22 year old female so I can relate to you in someway. At the moment I'm very stressed out and always think the worst. 3 and a half weeks ago I had a lap done with suspected appendix in which they took out, it ended up being a burst chocolate cyst in which they cleaned around it as it had 100mls of free blood. Week later I had an ultrasound and another 36mm cyst was found on my right ovary and yet to be diagnosed. I feel like it's such a waiting game and no one can give me straight answers. I hope you get the answers your looking for and someone helps you. My next pelvic ultrasound is in 6 weeks time and that's where they determine if the cyst has grown or disappeared!

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Oh goodness that's awful. I've had cysts bursts before so I can understand your pain. I really hope you get some answers soon xx

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I know it's so terrible and painful, thank you so much hopefully I get answers in 7 weeks time at my next appointment with the gyne xxxx

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It may be your age I hope you don't mind me sayinf thay I am still in my 20s 😃. I had an ectopic in my early 20's and bounced back really quick. Im 5 days post lap op now and just about functioning and I am only 28!!! 25 does something to you I swear.

I was spoken to in recovery and required no follow up. Unless anything worsens. And I have to admit I had some relief that it was endo they found.

Hope the follow up gives you answers and options that may work for you.

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My grammer and spelling is not that bad in real life. Cracked iphone screen 🙈 Unsure how to edit!

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