Laparoscopy next week, any advice + my story

[danijonez]

I finally have my laparoscopy Wednesday and I'm terrified they wont find anything

June last year I first went to hospital with suspected appendicitis, they were going to give me the surgery that day but 1 doctor out of 3 said no she doesn't think its my appendix so I was just given an ultrasound and got discharged with codeine. That ultrasound showed a small cyst on my ovary so they blamed my pain on that and left it.

Before that first hospital trip, growing up I always had heavy painful periods but I just thought it was normal and I have anaemia too so that was blamed for it. I then went on the pill for a while and I think that was masking the fact I may have endo. I decided to come off the pill as I was getting side affects that I didn't like and kinda missed having a period (i know?im weird) and thats when my pain started.

And then came the waiting lists... I went to see my GP I got referred for another ultrasound which I got in October and to see a gynae which I seen in November. I was also put on a different type of pill. At that ultrasound, no cyst was there! I have a slightly larger right ovary so they began telling me that it's PCOS which I had no symptoms of even having PCOS (I spoke to a doctor on the phone in January who I let read my medical history and it said it was very slight so its not PCOS) doctors just dont communicate ive been told so many different things!

And then the gynae appointment...I literally was traumatised. The guy wasn't like having a conversation with me, he was just talking at me. He was very rough with my examination, wasn't explaining what he was doing I then looked and he had his fingers in me being very rough! I was crying and he was mad at me for not sitting down the bed as it hurt so much. He referred me for a laparoscopy and said it would be 8-12 months which just made me feel like crap.

After that appointment I was in agony, so I went to A&E to see if I could push anything and be able to feel relief from the pain, they were also useless, referred me to go have an ultrasound which I only recently had and discharged me, even though the nurses promised they'd fix me this time.

I was so frustrated I decided I will have to basically self diagnose myself so I came off the pill to see how my period would be and honestly the worst and best decision of my life. In January I got my period and I've never been in more pain in my life I was basically bedbound for the weekend. I had the emergency doctors out who gave me morphine, I had horrendous leg pain which to this day is still bad. The doctor thinks the endo has grown on my sciatic nerve and emergency referred me for my surgery and said it'll be about 6 weeks, which its now next week! pre op on saturday.

Its taken over my life and no one really understands unless they have it themselves. I'm considered lazy and people think bad of me because I dont have a job right now, last year i lost 3 jobs because of my pain. I worked in a shop, then a factory, and then as a home care assistant, but I just couldnt cope with the pain and no pain meds worked for me i become resistant very quickly. my last day of work was 23rd december.

Sorry this is so long winded but ive never really posted my story as i'm fed up of peoples opinions that im over exaggerating and such, I'm only 19 and live my life in my house I just hope they treat me when i have the surgery so i can go out and get a job and go on holiday and make my relationship better i just want to be outside not in

[nicole29870]

Hi I’ve just Joined this group and read your story which has described my story completely I’ve been dealing with all your symptoms for the past 4 years have had hospital trips internal ultrasounds all been wrong diagnosis after spending two days in hospital Tuesday they finally diagnosed me with endometriosis which they now think is stage 4 because of my physical symptoms which has effectively ed my fertility and I’m only 24 so it’s a big blow for me I’ve got my 6th gynaecologist app on the 12th of April when hopefully they will do a laparoscopy until then I’ve been put on the pill to completely stop my periods please could you share your update of your surgery as I am very worried of my outcome I hope everything’s okay for you

[danijonez in reply to nicole29870]

Thanks for the reply I’ll definately let you know the outcome

12th April for 6th gynae appointment is so far away! It’s totally unfair how they think of endometriosis because it’s an invisible illness. I’m shy and I am so bad at pushing things and asking the doctors more questions but when I called out of hours gp when I was in agony he seen the state of me and this was the first time a doctor even understood the impact it has on my life so he emergency referred me instead of waiting on the long nhs waiting list. I think it will definitely be a good idea for you to try and get an emergency referral, it is a case of over exaggerating as well to make them listen, which is annoying too. We know our bodies best and when they told me it was just pcos I don’t even have any symptoms of pcos, it’s like in overweight people, they have lots of hair and hair growing on the face, and I’m as thin as a stick and no excess hair, plus they even told me pcos doesn’t hurt making me try to believe I’m imagining it!

[nicole29870 in reply to danijonez]

They kept me in hospital over night on Tuesday because of the high amount of paid I was in the was giving me morphine all night but the following day diagnosed me with Endo and just told me to wait for my app on the 12th it seems like no amount of pain I’m in hurry’s them and it’s very annoying I’ve been going through all this pain since I started my period when I was 13 but they just put me on the pill for the past 4 years is when it has gotten extremely worse and there still not doing anything about it just put me back on the pill and giving me months to wait for a gynaecologist app it’s ridiculous x

[danijonez in reply to nicole29870]

I know how you feel, when I’ve had an appointment that’s in like 6 weeks time and I go the doctors they won’t do anything just because I have that appointment which is ridiculous. I’ve dealt with so many rude receptionists too and I feel very vulnerable at the minute so I sometimes got my mum to ring them for me and they got even more mad

We can’t just mask our endo on the pill all the time ever since I came off of it and was in pain and gone back on the pill it’s done nothing for the constant pain I’m in except having no periods or spotting every so often

I remember the first doctor I went to after my first A&E trip didn’t even send me the referral for the ultrasound which I was supposed to have 6 weeks after and also the gynae, she just gave me tramadol which has resulted in even more issues for me. I only took it for four days and it has given me horrendous tinnitus in my right ear since September so now I have referrals to try and fix that...

I really hope one day they find a cure x

[Rai78]

Wow, you guys have really been through it. I feel very fortunate to live where I do and to have had the care and consideration I have. You both seem so young, I'm 39, and I'm hearing more stories of younger women not being believed or fobbed off. I ended up at A&E twice with pain, which seemed to speed things up, but it really shouldn't have to come to that.

Regarding the laparoscopy I was the same. It was such a relief when the doctor came round and said he'd removed the endo. From the sound of it they're bound to find something, what you're going through isn't normal.

The things I wished I'd know before the OP are mostly about afterwards. Probably the first thing you'll notice is pain in your shoulders. This is because they pump air into your belly during the OP. It's very painful. Heat on the area and movement are the best things. The nurses said it usually lasts 48 hours but mine lasted five days. The second thing is a massive drop in my mood about two weeks later. A few people on here have commented on my post about it. About a week to two after the OP you may become teary and irrational, pretty hormonal I guess. It passes though.

I hope it all goes well for you. Like I said I'm sure they'll find something. All the best.

[danijonez in reply to Rai78]

Thank you for the advice, I was wondering as I’ve never had surgery before do they catheterise you? I’m very anxious as it’s all new to me

I’ve heard about gas pain so gonna buy an extra water bottle and stock up on heat pads. The thing I’m dreading most is the incision they might make through my belly button and I’m weird but I really hate belly buttons they make me queasy so that’s not gonna he fun to clean and look at haha

I’m glad they managed to help you quickly. I think there is a massive stigma around young people having endo. The amount of times I’ve just been ignored and just been prescribed meds I didn’t even need is ridiculous and I hate wasting nhs time and money, if only they listened properly not as many resources will be wasted. Which it doesn’t help when people strain A&E, I remember when I was there there had been a guy who had just twisted his ankle, a bunch of girls where one of them hurt themselves slightly but they left after they knew the waiting times so it obviously wasn’t anything bad.

Like I don’t want to have endo but at the same time I hope they do find endo so I can prove to everyone that I am actually in a lot of pain and I’m not lying. It’s like people expect that I can run marathons. It hurts when people doubt you, and not once has a doctor asked how I’m coping mentally when I’ve been depressed for months because of this. But just because I’m young I’m supposed to be fine and healthy!

Also I’ve just thought of another question, what is it like eating afterwards? I feel so bad because it’s my boyfriends birthday the next day and he has to look after me so I promised I’d buy us take out but I don’t know if I’ll even be able to eat x

[Rai78 in reply to danijonez]

I wasn't catheterised, I couldn't leave the hospital until I'd passes water though which I think is standard after an operation.

The incisions caused me no problems at all. They are so tiny and weren't particularly painful, in comparison to the shoulder pain, just a bit uncomfortable. I removed the plasters after 48 hours and left them to it. I didn't clean them specially, just made sure they got a good clean with soap when I showered each day.

There isn't a lot that puts me off food so I'm maybe not the best person to ask. However, the pain from the endo did make me feel sick when bad and I wasn't eating very well before the OP. I was actually really hungry when I woke up, having fasted, and didn't have any issues eating right away. Like I said though the only time I've been put off my food was when the pain was extreme so I may not be typical of everyone.

I was firstly diagnosed with endo at 19 but I had private health cover through my dad. The difference in the speed with which I was treated is beyond belief. I'm very fortunate to not have had symptoms for 20 years and have three children. I feel extremely lucky really compared to what some people have gone through.

I think the hardest part is the hidden part of endo; the tiredness, the low mood, lack of energy. I really feel for you having to fight just to be heard. The NHS is fantastic in so many ways and I can't fault my treatment but I know not everyone has that experience. Just hang in there and keep going until it is sorted. You shouldn't be suffering like this and the doctors should be working with you to sort it not making it a battle. I'm sure everyone on here is behind you and wishing you all the best.

[danijonez in reply to Rai78]

Thank you I hope from my experiences I can help other people get heard. Even though its been a tough journey I do feel lucky as the pain started last year June and I'm having my operation 8/9 months after when some people suffer for many years before getting anywhere. It really helped when one doctor listened and emergency referred me, if he didn't do that I don't know what I would've done.

[nicole29870 in reply to danijonez]

I don’t think endo is treated as an emergency really because they just leave people to suffer or just fob you off with taking the pill my symptoms are so severe they have diagnosed me without doing a laparoscopy which isn’t good because the hospital has said it must be severe and has effected my fertility which I’m praying isn’t the case i really feel let down by the nhs because if they just listens to me and investigated from when I went to them then I wouldn’t be in this situation now hopefully my gyne app on the 12th will results in them finally doing a laparoscopy and see how bad it really is I don’t want to be just stuck in the pill I’m only 24, do you still get symptoms while on the pill as I’m only on day 2 of taking it and I’m just at the end of my period I’m very worried about what to expect xx

[danijonez in reply to nicole29870]

Yeah my pain is located in one spot at the bottom right of my groin that is just constant, and the pain radiating down my leg is still constant. But I don’t get pain around my abdomen as bad being on the pill, but I only went off it for a month so I could basically self diagnose myself to see what would happen. The pain I had tho when I got my period was like being stabbed constantly it was horrible even morphine wouldn’t help, and now back on the pill I don’t get the period so I won’t get that intense stabbing pain which is good. I did have very heavy periods so I do occasionally spot now and again being on the pill, one time it lasted almost 3 weeks I think, I am on cerelle so there is no break every three weeks like the combined pill I think. The pill is different for a lot of people though, I personally don’t like it from the side affects but if I don’t take it I wouldn’t be able to cope with my periods. When they refer you for the laparoscopy after your gynae appointment you should push your gp for an emergency referral. it annoys me so much how they just keep making you wait weeks or months for gynae appointments, they are just being lazy, I only have been to one gynae appointment and he referred me then and there. Do you see the same gynaecologist every time? If you do maybe you should try getting a different one as each person thinks of things differently x

[nicole29870 in reply to danijonez]

The pill I’m on you take it for 3 months then have a break they have only put me on it until I see the gynaecologist I’ve seen different people so hopefully this 1 arranges the laparoscopy and the gyne I see on Wednesday said I need a laparoscopy but not as an emergency but she’s the first person that has suggested I need one which is good hopefully xx

[danijonez in reply to nicole29870]

I’ve never been on that pill before, it’s good they’re finally telling you that you need one which they should’ve said long long ago. An emergency referral takes about 6-8 weeks to get the op x

[nicole29870 in reply to danijonez]

Yh I’m just upset that is has taken them this long hopefully at my app the gyne rushes it as I’ve suffered long enough now endo is a horrible thing but nobody seems to believe us xx