Nervous : Hi I'm new to this 😬 I am very... - Endometriosis UK

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Nervous

Jess204 profile image
Jess204
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Hi I'm new to this 😬

I am very nervous about my upcoming laparoscopy.

My story seems to have gone on forever and although I've not been diagnosed every symptom I have seems to point towards endometriosis.

Ever since I started my periods age 14 they were heavy and painful, at the age of 16 I had a laparoscopic operation for a different medical reason but they found scaring/adhesions inside around my bowel which they repaired and I now suspect was endo?? (They never actually said what it was)

I've had 2 children one at age 22 and one at age 28 and after each child my symptoms got worst, I've been told it's IBS amongst other things.

I am now 35 and the pain I get is awful, burning and stabbing pain mainly in my right side and down my leg and in my back. I've had years of pain during and after sex and bleeding after sex and at random times of the month. I had marina coil fitted 2 years ago now and been put on a pill this year while I wait for the laparoscopy to try ease the symptoms. It's always a short term fix and the symptoms always come back (although the bleeding has stopped for now).

I've been told I may have had a cyst but it's busrt as it doesn't show up on scans (I had 3 scans since 2015 and many before that over the years), and scans don't show up endometriosis.

I love exercise but have had to stop as it caused pain and even walking far hurts.

So finally I'm going to have the diagnostic and possibly treatment for endometriosis next Saturday but I'm so nervous of what they'll actually find 😰 The consultant told me only 50% of women with my symptoms have endometriosis, if it's not endometriosis then what else could it be??

Sorry my post so long πŸ™„

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Tillyfloss profile image
Tillyfloss

hi. I'm sorry to hear you have been through so much pain and nothing is getting done. Your symptoms sound very similar to mine however mine started out of the blue last Sept. Do you know how experienced the surgeon is on endometriosis? It can easily be missed after reading various posts on here and our recent experience.

for the lap, is natural to be nervous I was petrified as I have to serve sight condition which has reacted badly during having teeth out and gas and air in labour but I really did need the surgery. I told them I was concerned and they really couldn't of been nicer the anesthetic guy came the next morning to see how I was and offered to arrange an opthomolagist ( I know that's spelt wrong sorry!) if I needed it. In my experience the nurses we're lovely and distracted me with asking about family, pets etc which really helped so once I was in the anesthetic room I was calm and felt safe

it's an odd feeling coming round almost like you have been in a really deep sleep but I didn't feel rushed and came round in my own time.

the gas they put in can give pain but peppermint tea and being up has helped that today ( I had mine on Wednesday so its all very fresh in my mind!).

the best advice I was given by a family friend who is a surgeon is if you have pain you need to know what is causing and whilst you are being operated on everyone's attention is on you and keeping you safe and they are experts at.

I hope something from that might help you 😊.

xx

Jess204 profile image
Jess204 in reply to Tillyfloss

Hi tillyfloss

Thank you for your reassuring advise, much appreciated.

The consultant I saw is the same surgeon that told me he wouldn't do the lap 5 years ago, however I am going to be under a different surgen next sat in a bigger hospital so I do hope they can tell me what's going on.

Many thanks

I wish you a speedy recovery xx

KarenJJ profile image
KarenJJ

Hi Jess204, I don't have any advice to offer but just wanted to say I understand how nervous you feel. I'm also having a lap next Saturday ( first time ). My pain is also on my right side and I have symptoms with my bladder (since September last year) and bowel (going back years) amongst other things. I hope it goes well and you get some answers.

xx

Jess204 profile image
Jess204 in reply to KarenJJ

Hi KarenJJ

Thank you for your reply, I also have had bladder and bowel problems for some time. Hurts to pass urine especially if I have particularly full bladder and bowel movements can sometimes feel like I'm going to give birth.

I wish you all the best for your lap next week

Xxx

Mazza2711 profile image
Mazza2711

Hi jess,

I'm new to this forum and I am struggling with symptons that I still haven't got a diagnosis. Pain on my right side that used to come period times but now happening at ovulation aswell. They now think endo and i just need a diagnosis as have migraines vertigo night sweats pain right side and leg pain now in right leg!

I'm 43 but feel 80 years old

I'm having lap in 3 weeks and I'm nervous but I had a camera in to my womb about 6 weeks ago and they knocked me out I was in a terrible state before. But the hospital team made me feel so at ease so don't worry you will be fine

Good luck with it

Mazza x

Jess204 profile image
Jess204 in reply to Mazza2711

Hi Mazza

Thank you. It sure does make you feel very old and very tired.

Bless you. I wish you all the best for your Lap.

Jessp204

Xx

SainiP profile image
SainiP

Hi I have mine too in a couple of weeks after having 2 previously 4 years ago. I have become more worried since becoming a mother but the team were really supportive. The main advice I have been given is to relax as much as possible and give time for recovery. I hate doing nothing and have 3 young children so it's difficult but my advice after not resting for long enough last time is listen to your body. Hope I will practice what I'm preaching too. Good luck Pooja

EmmaSmith33 profile image
EmmaSmith33

Hi everyone, I had a total hysterectomy and ovaries and Fallopian tubes removed nearly 7 weeks ago laparoscopically!! They queried Endo as I had left sided pain bowel pain and painfully periods tried injection progesterone only pills etc so nothing worked and I opted to have everything out as I'm 45 and have a grown up son. Anyway point is everyone was really good they are used to patients being nervous and anxious so don't really bad it's is NORMAL to feel this. In answer to the First Ladies question I ended up not have Endo but adhesions which attached my left ovary to my bowel and my bowel to the pelvic wall and I had some on my bladder!! All were removed successfully and so far no painπŸ‘πŸ˜„ however I did have a BSGE accredited surgeon which I think is key to these operations rather than a normal gynae surgeon!! My surgeon and specialist nurse both said he was very good at dealing with complex cases which so far has proved true!! Good luck with everything and if you have any questions feel free to message!!! Sending hugs and please let me know how you all get on!! Ps I'm a sister in the NHS and believe having more knowledge makes being a patient worse😘

Jess204 profile image
Jess204 in reply to EmmaSmith33

Hi EmmaSmith 33

Thank you.

Yes they found adhesions/scar tissue in another operation I had when I was 16. It could be that they have come back? However the marina coil helped for a while, and then a pill at same time but all short term and all the symptoms are back (except the irregular bleeding which has stopped) . So not sure if a combination of things? I'm very nervous of what they may find, it has helped with everyone's kind words, advise and experiences.

I hope you carry on to have a speedy recovery

Xx

EmmaSmith33 profile image
EmmaSmith33 in reply to Jess204

Hi Jess204

Thank you I'm making an amazing recovery been back to work on a phased return for 2 weeks now and been back to the gym today obviously taking it slow but having the op laparoscopically and by the correct surgeon has made a huge difference to my recovery. Good luck with your op just remember keep calm.xx

Tillyfloss profile image
Tillyfloss

hi. How are you feeling today? Hope all the advice off the lovely ladies on here has helped. I was very nervous about the surgery and it was done the day before our only childs birthday so I was a bit emotional to but the staff really were brilliant 😊

I hope you get answers and a way to reduce your pain.

take care 😊 xx

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